‘Swearing is Caring!’ Cursing For Charity

“We swear because we care” is the motto for a podcast I hadn’t heard of until a few months ago. Not long after that, I was ecstatic to learn that the guys over at the Watch Your Mouth Podcast had accepted the OMF (Open Medicine Foundation) as their charity du jour. Or 10 jours I guess. Watch Your Mouth is a Swearity. What’s a Swearity you ask? Good question. As far as I know, Watch Your Mouth is the only Podcast that converts F bombs and other fun swear words spoken throughout the episodes into dimes (one curse word equals one dime) At the end of the semester all the dimes to dollars are donated to a charity of their choosing at the start. I think the idea for this podcast is not just smart and innovative conceptually, but as an added bonus, it’s great in real life! Which is always, you know, a plus. 

I was surprised and insanely excited that this semester, thanks to the introduction and urging of my *special friend Matt via his support of MECFS advocacy, that the guys at Watch Your Mouth agreed to make the OMF their swearity of choice. I felt gifted with a huge boost of gratitude and hope. Especially because Magical Matt agreed to match whatever amount they accumulated this semester. And then Magical Matt’s dad agreed to do the same thing. All good news. All awesomeness. Gratitude out the wah-zoo.

The podcast follows a format involving a speciality drink/recipe (Fuck yeah! Alcohol helps swearing!) nostalgic video games, past and current movies, but maybe most entertainingly— just three funny dudes doing a lot of benign shit talking and bounce house humor that all circles back around to something coherent. Listening it’s hard not to laugh out loud and feel like you’re in on the conversation with likeminded people who call out bullshit but keep it lighthearted and fun. 

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Serious Biz

Matt and I sat in on a show so they could learn a little more about the clusterf*ck (ten cents!) of MECFS, which they repeatedly pronounced as one word: “Meekifs”— because they’re funny like that and it’s fun to say. Also, Myalgic Encephalomyelitis doesn’t exactly slide off the tongue. Along the same vein, they pronounced the OMF just as it sounds, so in the episode when you hear “omff” and “meekifs”, it’s not a bird hitting the outside of the windows or random sounds in the background, they’re real, made-up words out of the abbreviations.

Chances to partake in things like this give me hope and some kind of psychological boost, even if seemingly small when compared to other efforts. But I don’t think there’s really any such thing as small when it comes to Meekifs. It’s all about bringing light to this thing that’s existed like a damn vampire in the shadows for decades. It’s what Unrest has done, Forgotten Plague, and similar projects (aside from outright protests) that lifts this situation from the echo chamber of the MECFS world to the outside world—transitions it from something that no one may have ever heard of (but usually has some preconceived notion about) to at least something they’ve confronted with some truth or personal experience behind it. All of it helps open peoples eyes who wouldn’t normally have seen or heard of this thing. The more people who don’t know, who wouldn’t ordinarily know, and then become aware, is invaluable and hugely helpful in how we will turn this thing around. And I do believe, whole heartedly, it will be turned around, and the situation we’re in is going to change immensely. 

The guys at WYM podcast, Critter, Ken, and Dan, were welcoming, irreverent, down to earth and basically made jokes, laughed about life, old movies and video games, current movies, and Barefoot Contessa. And these are all basically things I enjoy doing. It was my first time on the “radio format” and I probably didn’t do the best job, but I tried. I just wanted the word to get out there, in as many outlets outside the MECFS community (who is fully aware of the clusterf*ck, since they’re living it) as possible. And this was one way it would happen, so I am insanely happy they went out on a limb to discuss something they and very few people know about, let alone can pronounce. And to also donate their dimes, which turn to dollars quickly because Critter looooves the F word, and that all means Cha Ching! for the OMF. Which means dollars for science. Fuck yeah! I did my best to curse a lot too. So if bad words offend you, remember, every shit, asshole, f-bomb (I believe Ken may have at one point referred to “hands” as “dick-grabbers”? I think it counts) and others are all going to an organization that at the end of the day is fighting for answers for millions of people who have very, very few. All donations go to research, and that’s something any asshole (10 cents) can get behind. 

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Wait, how do you pronounce Meekifs?

My head feels cloudy and I don’t feel I’m expressing myself as easily as I sometimes can, but I want to express my deep gratitude to Matt, for bringing up the idea to the Watch Your Mouth dudes, who are hilarious and virtuous cursers. My gratitude for WYM accepting the idea, and for welcoming me on the show without ever having met me to talk a little bit about the disease and the “omff” was big. I had a lot of fun doing the show, but mostly I just felt insanely grateful to be there, to be saying the words “Mekiffs” over air waves that might reach people who would otherwise never know about this whole thing. 

Thank you for taking the OMF on as your swearity charity for the semester, and taking an interest in something you knew nothing about, and also we can fairly say, couldn’t really even pronounce. Maybe one day we’ll have a disease name that is more worthy and accurate for what it actually does and takes, and is also easy to say: like Shit Turd Disease. But for now, Meekifs is fine by me. And whatever the hell else you want to call it. It all means a lot, and I genuinely enjoyed listening to the show, even before it was my turn to go on the air. Not live, thank God. Ken is quite the editor, so we have him to thank for smooth transitions and omissions that were junk, including me simply introducing myself, which was just a jumbled idiotic cloud of shit. Head palm! Anyway, here is the episode, and OMF, this one’s for you. 

http://wympodcast.com/2018/05/episode-124-me-cfs-explained/

You can find and listen to the episode and more on the above link or find it in iTunes or on your podcasts app on your phone. It’s easy. Easy peasy. I’m tired.

Health, Happiness, Fuck Yeah! I can say it because it’s money!

The Reward and the Wake of ME/CFS Advocacy

Two weeks ago, my family came together for an advocacy event coordinated by incredible friends and family in our old hometown, Grand Junction Colorado. The function was a success and took a lot of hard work by people who cared and put in major time and heart behind the scenes. My sisters friends Avery and Jordana, Jordana’s dad Harry (awesome dad name) and my Uncle Mike who was under the impression that months earlier he’d retired (Nope!) Besides them many more came together, helped fund, offered services, and sponsored the event in order to make it happen. As for me, I sort of just had to show up.

Beyond friends and family that put in the effort to sort out logistics doing an incredible job, the article in our local paper impressed me majorly–not just with it’s advertising of the event, but by publishing a full page color spread, covering our families stories respectively and including a digestible narrative about the reality of MECFS and giving it a wider context. I felt happy and surprised to read this article right out of my humble hometown, when such a surprising amount of press from noteworthy and “big league” media can completely miss the mark.

The dense, nearly unbelievable history mixed with present political roadblocks and numerous scandals all under the M.E. umbrella make the disease particularly hard to write about and convey in one article without writing a novel. Not to mention the personal, human interest side of this, and the toll it takes on patients and families. Very few articles contain both, and many more are simply clumsy, neglecting essential facts or even accurate data. Due to our general lacking presence in the media, I know someone might think “Well any press is good press, right?” But I struggle with that adage. When you’re fighting a thirty year old false narrative, not all press is good. In fact it can easily be bad by perpetuating fallacies, inaccuracies or misconstrued data, and even celebrate studies (like the PACE Trial) or treatments which have done the MECFS community incalculable harm.

So I guess, no, not all of it’s good. Too often I’m excited to see press about MECFS only to be disappointed beginning just the title, which will call the disease “chronic fatigue” or in the first line, inaccurately label the number one symptom as tiredness. *facepalm* But I digress, I didn’t mean for this to get into the media missing the mark, or the missing media in general, because today is about advocacy. And when people with this disease, their caregivers and loved ones, researchers and doctors are out there fighting for it, none of them will get it wrong. All of them know the numbers, the history, the truth, and the unfortunate personal toll.

The event in Colorado was a success. And maybe I’m a romantic and would call it that if even 3 people showed up, because that’d be 3 more people who were aware of something that is so rarely seen, heard, talked about, or understood. But many more showed up, family and friends we hadn’t seen in decades, strangers too, all to learn about a disease on a Sunday night, when it would be so so so easy to stay home and just forget it. It’s hard to express the humility and gratitude you feel seeing people show up, tell you they’re thinking or praying for you or your family, or even a stranger offering his hope and encouragement for the future. It all meant a lot, really. So THANK YOU again and again.

After the screening of Unrest, the 3 of us (my mom sister and I) spoke and were followed by Linda Tenanbaum, the CEO of the Open Medicine Foundation and human firecracker, who infused hope back into the audience, who were probably mostly thinking Dang, this is a shitty situation. Shituation?  She closed out the night before it was on to the reception. The firecracker (Linda) is an amazing speaker and doer, and having her attend the event only amped it up. Getting filled in on the OMF’s work and most up to date findings was a truly optimistic breath of fresh air.

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The OMF is at the forefront of research and work purely off donations, as in every cent goes into the science. All participants–brilliant researchers, doctors, scientists and logistical coordinators work on their own dime. Why? Some of them have a child or loved one with this disease, others just a determination to find answers to something with so few. Due to the explicit lack of urgency in the government when it came to MECFS interest, when submitted applications for funding biomedical research were repeatedly turned down by the NIH, these guys got together and decided it was time to do the work themselves. And thanks to the generous donations of so many people, they’ve been able to achieve and find incredible things. There is still a lot to do and this kind of science will require a lot of GREEN. But hey, maybe the #MillionsMissing protestors out there today in the streets will help change studying a disease with public charity to adequate funding provided by the Agency whose job it is to fund.

When we attended another event much like this one in California in October, it took me roughly 30 days to recover. I know because I videotaped myself everyday for a month to track how each day went after we returned. It’s a long trip and these events, while incredible and worthwhile, take a toll. The socializing alone is just like physical exertion, and the event in GJ lasted roughly 6 hours. While I’ve recently undergone an upswing in my health, I watched my mom that night—speaking and catching up with many old friends. Sitting as much as possible, not having even one glass of wine or “playing with fire” by any stretch of the imagination. She played it safe and did what she could to pace herself. You’d never guess anything might be wrong by looking at a photo from that night.

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Yours truly, My Sister Amelie, Linda Tenanbaum, Mama Gelpi, and my Aunt Amy. You probably know her.

Yet at 6 AM the next morning, I woke up on the couch just in time to see her collapsing, my stepdad with his arms outstretched underneath hers, catching her as she slowly went down, muscles twitching and trying not to pass out. She’d woken with a crushing migraine and often if she doesn’t take her medicine in time, some epic vomiting is soon to follow. She’d taken the meds but sometimes the migraine wins and all you can do is endure it until it’s had its way with you. She’d run to the first bathroom feeling her mouth start to water and knowing what was to follow, but my brother had just moments earlier gone in to shower before his early fight home. (Way to go NICK)

So she was on a quick race to the bathroom on the other side of the house, but midway through started to black out, and was luckily caught by my stepdad from behind while her muscles seem to go limp and the room blurred in and out. I can’t remember what was said but I knew she was going to spew quickly and ran as fast as I could for a bowl. I made it back just in time, with a casserole dish, which isn’t the best of bowls to puke in if we’re getting technical, but hey, better than the carpet.

After a nice little vomit session on the floor, we both pulled her up to the chair where we put ice on her neck and wrapped her feet in heat packs to try to get the blood to flow downward. She sat with her eyes closed, as though she were concentrating hard on something. But when you’ve experienced that kind of pain, you know just what it looks like, and that was it. She waited and Marc sat nearby for anything she might need. After an hour she was finally able to walk back to the bed and eventually get back to sleep. So, that was her morning.

And from what? From doing what healthy people do all the time. Watching a movie, catching up with friends, eating, hanging out. This is what put her over her envelope. Watching her I just kept thinking about the invisibility of it all. That no one would guess the woman they were with last night was in the extremely painful and scary position she was in now. But this is the story MECFS and those who suffer with it live it all the time. You see us when we’re well enough to be seen. Otherwise most of the suffering goes on behind closed doors, and no one presumes otherwise.

Today is #MECFS Awareness Day, and thousands of people around the world are taking part in the #MillionsMissing protest thanks to MEAction and many more. I wish I were one of them but I just couldn’t make it happen. So I made my sign with shoes attached on behalf of the three of us in the family to represent. It was only a tweet, but it was the best I could do.

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I hope anyone reading this who participated in the #MillionsMissing event knows the immense gratitude and unity from millions of us who couldn’t physically be there. This kind of advocacy isn’t easy, particularly on those who have the disease. They will all pay for it in terms of their health in big and small ways. And yet it’s what must be done in order to make the invisible seen, give the silenced a voice, and the truth a solid platform on which to land. My gratitude runs so deep to all those who organized to make THIS happen, and you know as well as I do, it doesn’t end here. We’ll fight even if we’re left beat up until things change the way they’ve needed to for decades. Hang tough, all of you. The Gelpi’s are with you in spirit. Thank you for your bravery, for caring, and for risking your own health so that we might all have a chance at actual health in the future. Thank you, in every language ;)

Health, Happiness, In Solidarity–Happy May 12th

Restlessness, Unrest, Doin Your Best, Zombies

For nearly  a month now, I’ve been writing a blog that would normally take me a few 3-4 hours to write and a few days to edit, if I were in “regular” enough health and other things were ordinary. I catch myself in a strange predicament, so I’ve abandoned that last post, which may have been THE BEST THING YOU EVER READ because I can’t damn well get more than a paragraph written on a good day, and the editing has become arduous for numerous reasons outside the one I’m about to describe, but to the point where writing, my one constant among chaos has taken a further hit. And since I’ve learned, for me, writing a simple status of things in my own life is easier than trying to put some thesis about technology together (one day) I’ll just bring you up to speed, because I’m not sure how long it will be like this. 

If you read in my past blog, you saw I’ve been fighting some switcht that seemed to turn on a charged degree of restless body syndrome and skin crawling, which have been part of my symptoms for years. With a switch of pain medicine that didn’t seem to improve anything and cause the hugely uncomfortable side effect of skin crawling and an insatiable necessity to move my limbs ,Unfortunately, when we stopped the medicine and returned to the regular regimen, for some reason, the RLS (or restless body syndrome + skin crawling) did not, which turned up a conundrum. 

We’ve yet been unable to find out what “fliped the switch” that made these symptoms turn on with the cherry on top of skin crawling, and why stopping the med that seemingly caused it to start wouldn’t naturally cause it to turn off. If anything the symptom has stayed the same and many, many restless days and nights become worse, and well, hellish. Waking up to squirming legs and little charges running through your body with your skin crawling on top, Is Foldiers in your cup! Kidding, its awful. I think I’d prefer pain. And since the pain has continued, now I get both, yeah! But if i had to pick between the two, I’d choose pain. It’s discomfort is different from that of squirming limbs, electrical bolts and your skin feeling like the audio equivalent of nails on a chalkboard, if that makes any sense. Besides all that, for whatever reason, the medicine I’ve been taking for nearly a decade that has controlled the symptoms 90% of the time, seemed to just suddenly stop being effective. It’s as if this clinically same symptom is originating or set off by something else in the body, and that has rendered my old meds useless. 

Where I am lucky, is that we found a medication that has been effective in controlling these symptoms, which truly, at times, feel more tortuous than pain. Where I’m a little unfortunate is that the medicine which calms down the lightning/snow/hail storm going on inside me, is the same medicine I’ve been taking for sleep for the last 2.5 years. At night it has done me wonders, since for years, even with the help of a sleep aid, I rarely made it through a full night a of sleep, saw a lot of sunrises, and often had tangible nightmares and at times became trapped in night terrors. (NO fun) Luckily this RX has not only worked best for my quality of sleep out of all the meds I’ve tried in the last decade, but it also seemed to reduce my nightmares, or at least made me sleep so well, I don’t remember them, which is, you know, fine by me. The obvious problem is that when you’re taking a pill so incredibly effective at helping you sleep, but you’re now taking it at 10 AM…you’re going to run into some issues. Like, um, what’s that word? Functioning, that’s right, you’re going to have problems functioning in daylinght. But without the meds, life is even less functional with misery stirred in. I wish I could say I were stronger and I could do it without the meds, but believe me, when you feel like you’re being tickled from the inside of your skin and your legs wanna kick and squirm and flex outta control when you just want to sit or lay and some strange shock or charge is making its way from head to toe frequently, it’s just not doable. You’re fighting the whole day. 

So, I went from misery and fighting, to z o m b I f i e d and tired and unbalanced (pysically) because that’s some of the med’s effects, which I”ll add, are HUGELY more tolerable than life without them. But, taking a sleep med during daylight, as I’ve explained, is draining me. I move slower than before. My cognitive ability feels like it’s being run by a fat hamster with heart disease. I can feel the effects that I know are from the meds, but it takes just the thought of one morning in January to make the “pick your poison” choice easy.

At a bitterly coincidental time, I was told to ween off that pill by my doctor because the FDA had been coming down hard on physisicians and who they prescribe to and how many doctors are prescribing to one patient could compromise their license. Sweet. I’d have to wait to find another doctor to prescribe it before I could refill it (I’ll write more when I’m not so z o m b i f i e d)  I found myself stuck between a few pills left and a hard place. The only thing relieving me from the misery was this med, but because of new regulations, only certain doctors were allowed or were choosing to prescribe it out of caution. I was prescribed some other conventional prescriptions to control RLS (Miripex, Bacloven and others) which did nothing, and my Lyrica and then Gabapentin had for whatever reason ceased to worked. Now I was stuck. 

I tried to talk myself into the belief that slowly weening off the Central Nervous Depressant and changing to the Bacloven that I could rid myself of this new, annoying, persisting symptom if I just believed hard enough the new meds would. But by the time I had taken the last pill and it was all up to the bacloven, I went 1.5 days and did what I guess we could call, ” possibly acceptable” but not at all “controlled” on the symtome scale. The morning I woke when I knew the last of the weening med had left my body, I was in hell. Really. I thought if I couldn’t get rid of this feeling, which was the truly inescapable task of needing to crawl out of your skin and also throwing all your limps off, I could see how and why people ended it. I know, that sounds extremely dark, because it is. But when you’re in that much extreme discomfort, you finally see why people could have it in them to do something that seems so far away and impossible in your own world. I wasn’t in hell, I had help and luckily one doctor to prescribe a partial dose until my appointment with the neurologist. Saved. 

But that morning for those hours where I tried everything I could think of and could not find relief, I thought of the many who came before me and those now who experience similar symptoms to a much higher degree and do not have the safety net of their health systems or family to fight for them and find them relief of their pain or quell their discomfort. This letter from a past advocate, one I never knew until I read her letter, who experienced unspeakable greater pain and hell than I did, and lacked the help of her countries support of MECFS more or maybe as much as the US had me thinking how in fact fortunate I was. At the least, I had a family that would step in and demand or find a solution I wouldn’ve have been capable of myself.

Another thing stuck with me. When leaving one of my 14,000 doctors, one who is actually very good and informed particularly in the filed of dysnautonomia (a huge aspect of ME/CFS for most) he said something. “You need to be getting as ltitle medicine as possible from as few doctors as possible, otherwise, you and I will be flagged.” I felt such anger on that ride home. This is where so many MECFS patients are stuck. It’s suspicious of us to have too many doctors all prescribing different meds, and yet, there’s no one doctor for us to go….This disease multi-systemic, and most patients, if they can make it there, have at least 5 different doctors monitoring different parts of their malfucntionng bodies. How on earth would we break this puzzle without research and education to show these medical entities the truth about a disease it simply does not undestand, and who some are plainwright just choosing not to look at.

I always try to take as little of the meds as I can because I know they will wipe me, which would make a lot of people, then find a way to withstand it or another solution. We’ve tried magnesium, checked iron levels, yes I have lyme disease, I take multiple supplements and I’m pretty sure I can’t The Shape of Water-it and just live in a bathtub for eternity, so for the time, this is my limited option to escape the suffering of this strange, insidious symptom that we just can’t figure out. Last month I saw Dr. Klimas, (my hero!) who is running a whole scope of tests, and all our fingers are crossed that we may find answers.  Not everyday is spent zombified, but my mom recently told me she was worried because every time she came over I sounded like a zombie and not myself and I said “maybe that’s just cause you come over at zombie hour” and she said that couldn’t be ruled out. But we both knew.

So, I try to get rid of the guilt that there is so much more I could be doing but that I am held back by from the very medicine that makes life bearable, but that can also make it very a slow moving, zombie-esque and unproductive experience. We can only do what we can do. When you’re already fighting “fatigue” (a really shitty word to describe a symptom of a really shittily named “chronic fatigue syndrome”, hmmm) a med like this is like 4,000 cherries on top. I definitely believe that either my body will very slowly adjust from whatever through it out of whack in October, or that I actually will be able to ween from these meds and get back to the thing I love more often—writing, advocating, and creating. 

And by the way, check this out! If you live in Colorado, please come to this advocacy event; it’ll be a good time with a good cause. The Gelpi’s will be there, Grandma Bell (you’ll know soon enough) and lots of others. Not Monty, sorry to disappoint 90% of readers :(

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Read more here about the event. And read more HERE for the write-up on our stories in The Daily Sentinel. Thank you Anne Wright for the article and for everyone who has helped make this event possible, which has been many, but especially Jordanna, (her dad) and my Uncle Mike who thought he was retired. Haha, sucker! Love ya.

Health, Happiness, Keep On Zombie-ing On

2017 and Falling Off the Edge of the Earth

*I’m making a concerted effort to keep these blogs shorter and “more digestible.” This is not that blog. Last year was a book all on its own and  I feel the need to fill some gaps where I was unable to write during certain parts, so I’ll do it now so I can move on to the present. Apologies it’s not shorter and sweeter. Next time.

*
The beginning of 2017 had begun so auspiciously. My health was in the “good enough” category. Not great, but not terrible. I don’t even know if the word ‘good’ fits with any precision here, but looking back at the beginning of the year, it was so much better than how the year was to end.

The hopefulness, the call to act, the feeling that I could help change things related to a health crisis all felt visceral and achievable. Whenever I felt down about something, disappointed, or discouraged, I constantly asked the same question: Why not me? I’d waited on others for so long, expecting there to be a happy ending soon enough. But you grow older and you see that things don’t happen unless people believe in the possibility of things changing, and if those same people don’t believe they can contribute to this change, in whatever way small or large, things remain the same. When we stop waiting on others, and decide no matter where we are in life, there is always something we can do, we will add light to a place of darkness. We can try. And I can tell you from personal experience, many failures, some successes, that trying, regardless of outcome, feels a whole hell of a lot better than waiting. 

I think it’s why we may sometimes take the longer route home, even though we know there’s an objectively quicker way to get there—but that shorter way involves stop and go traffic the whole time. Most of us would prefer to just drive, on a road that feels open, than sit in a tense car and yell OH COME ON and beep our horns (as if this does anything in congested traffic).

I hadn’t expected the outcome that came out of writing the petition. Yes once again, I”m talking about the petition. But this stuff matters— to me, and to millions, and I need to quit pretending this is a blog that will always (or ever) be extremely exciting or cover my super fun travels to Brazil! I am after-all, documenting life and a chronic disease and a hopefully changing political landscape that I am attempting to contribute to. I try to keep things light-hearted and fun when I can, and highlight the sometimes tragic hilarity that comes from this weird, unconventional life I live. That’s the creative challenge. But the aim of truth telling is tied for 1st in what’s primary, because there has been so much, well, non-truth telling. (I’m looking at you, psychiatric club of England!) I also try not to make it so much about me, but that’s a joke, because this is me, writing about me, and also M.E. (Myalgic Encephalomyelitis— you get it.)

**

In early January I met with the LA State Director who works directly under Senator Bill Cassidy. I sat with him for two and a half hours, giving him the whole spiel. At the end, I showed him the petition, which had amassed roughly 35,000 signatures at the time, and it seemed to surprise him. That led to him arranging an extremely brief “meeting” with Bill Cassidy, (literally a 3 minute talk in the parking lot between meetings, where I said as much as I could, and handed him a printout of twenty pages of comments where sick people had told their stories in condensed bursts trying out for help. Some of them were heartbreakingly short and to the point. “I have lost everything. I am bed bound. I’m not living anymore.’ As he was being ushered into his car to his next meeting and his team shouting that he was late and to please hurry, he shook my hand and looked me in the eye saying “I really would like to know more about this.” But politically things were a mess at that time. Is that a redundant thing to say? No longer even necessary? I was told he would be in our state (Louisiana) for roughly 30% of the year or less because his help with the Healthcare Bill in DC was very much needed. So I met with the State Director, but it just inherently felt like such a good thing. Any politician empathizing with you, listening to you and looking you in in eye feels successful all on its own. I realized we were all looking for that. We just want to be seen and heard, and I want to continue that mission.

Attending the “Storm on DC” in May where a large group of us-advocates, advocacy group leaders, those sick with MECFS and those who loved them— met with representatives of more that 150 congressional offices, which felt like movement in the right direction. Besides that, the catharsis I found in meeting other people who were living my kind of life was invaluable. It was the human reminder that I’m always trying to tell myself, that I’m always replying to others when they reach out. We really aren’t alone, even if we’re by ourselves. There are many of us, and yet isolation dominates. This sentiment is perhaps the hardest to remember, the most difficult to convince your heart is true.

A good family friend arranged for me to meet the Majority Leader, Steve Scalise, where we all sat down, and I attempted a summarized spiel of MECFS and the train wreck it is. More importantly I introduced this disease to a man who’d never heard of it, which is typically how these things go. Then I told my story in fast forward, as something he could connect to. Maybe something he might remember. The three of us did a little trouble shooting of ideas. We didn’t have two and a half hours, bur he too wanted more time to learn about and think on this. I left him with short and digestible literature. When we left he shook my hand and I looked him in the eye, hoping he would remember me. That somehow in the future, he’d have some faint memory of a girl he talked to—explaining a crisis underneath everyones nose that needed immediate addressing. A continuation of being seen, being heard, asking people pointedly,”Can’t we do better?” 

We tried. I tried. And regardless of what obvious or immediate changes were made (not many, but a few important ones), this all felt very good. To try. You know when you’re doing your best and when you’re slacking. Nobody really has to tell you.

***

Unfortunately after my bump of health in the spring, I seemed to start on a downward spiral to crap town. I fell in love, which was energizing, but the burst of it didn’t last very long. In late summer we tried ketamine infusions to try and get a hold on my chronic pain—in my legs and my head/face. It was basically insane. And sort of a Catch 22, because I think if I didn’t have ME, I would’ve been able to handle the 3 infusions per week for two weeks. But the physical demand of doing anything 3 times a week at that point was extremely difficult. Strangely, it improved the pain in my legs, but made my head worse. I’d get a horrible migraine after each treatment and woke up the next day like it was back for vengeance. I’d have a day to recover before we’d go in for another treatment and do it all again. For someone with this illness, this kind of protocol just isn’t all that possible or as it easy it might be for others. At any rate, we went through with it, because if I was going to endure the physical hardship and psychological insanity, I wanted to really go for it. I wanted to know explicitly if this would work or not, and not do some half-ass attempt. Apparently the first 6 treatments and the time in which they’re given is crucial to their effectiveness. I would try anything that might help the pain, get me off meds.

It was an intense two weeks, and I’ll go into much further detail on another post because there is a LOT about that course of treatment, physically and spiritually, and not a lot of personal experiences written about it out there.  I believe it could have worked for the nerve pain in my legs if my mysterious stupid head didn’t explode at anything new we tried. I crashed from the exertion, the migraines became a given, and it just became clear it wasn’t working. Wasn’t going to be possible or given a real chance to work. So we paid a hefty financial and physical price, but at least we tried, and we always will attempt things that promise at least a good possibility of lessening my pain and eliminate the need for prescription drugs that are harder to fill than buying a machine gun.

This was toward the beginning of August, where afterward my functionality was already in decline but it continued and seemed to increase its rate of downward spin. Particularly in October, where I seemed to fall off the earth.

The pain doctor changed one of my long acting pain meds to see if we might get a better hold on the leg and face pain. I had an extreme reaction to it. On day 3 the “skin crawling” I had felt at first turned up to a 10. I’d wake up at 3 am to my legs and arms squirming, kicking, flexing— feeling like a kinked hose with full blast water trying to flow through it, impossible to keep still. My muscles would be flexed without my telling them to. My fists would be clenched and my toes curled under my feet, then pointed, back and forth on repeat. Moving felt “good” in a weird way, only because remaining still felt impossible. But I was so exhausted anyway, all this muscular strain helped nothing and only worsened.

On day 4 came an episode that we can’t really explain. I was at the vet with Monty when I was already feeling rough but pretty suddenly felt I like would faint and as though my insides were melting. Luckily it’s across the street from our house, so I cut appointment short, trying in spurts and sputters to explain what dysautonomia was to the vet techs as I sat on a bench before the 60 second ride home. Have you ever heard of POTS? “Like frying pans?” I came straight home, laid down on the couch, drank peppermint water for the intense nausea and iced my aching head. Suddenly I needed to vomit. I wrapped myself around my moms toilet where the bathroom spun but I could only spit. I prayed to puke because the nausea was so immediate, making my face hot and the saliva in my mouth swirl, collect at my lips and pour out like a faucet, but nothing.

I laid on the floor of her bathroom, stuttering and having major issues speaking. My muscles kept clenching, all of them, would become rigid, and my teeth chattered. If I diverted my attention away from breathing it became hard to breath normally. It felt similar to the symptoms of SVT but I was not in active SVT, or I’d taken an atenolol just in case I was, and it would’ve worked by the time I lying on the tile. Something else was happening. I had to focus on just taking normal, deep breaths, trying to stay calm. I was twitching and my muscles were doing whatever they wanted. When I finally stood, unstable on my feet, my parents each held an arm and tried to guide me to the bed—but every time I moved I felt insane vertigo and urgent nausea. Even looking too quickly with my eyes to the left or right caused a flash of the same symptoms unless I lay still on the cold tile floor. I laid around the toilet again and tried to be as still as possible, ignoring whatever my body was doing on its own. My parents brought in a pillow and blanket and Monty laid next to the bathtub.

My body took turns twitching and shaking and going rigid, and I stuttered horribly when my mom asked me questions. The lights were too bright, so I laid there just as the last of the sun was setting. I knew she was conflicted—do we take her to the ER? But we’ve both had enough experience there—no one has heard of my disease. They would look at my prescription list and long, convoluted history and none of it would add up to anything, understandably. (We hardly mention ME/CFS in med school text books, and the printed “treatments” are so outdated, some still state “hysteria” as a cause. If anything, going to a bright, loud, crowded ER would make it worse. She used to be a nurse and was monitoring my vitals the whole time anyway. I told her “Please, no hospital.” But I think she knew I was in better hands at home anyway. I felt awful. Not just physically, but that it had come to this. That my mom had to see me like that. That the place you’re supposed to go for medical help is not a place we can go. All of it felt so backwards, so wrong. And it was just beginning,

It took four hours for the episode to finally dissipate and for me to turn back into normal Mary. Clearly I couldn’t stay on that med, which was incredibly disheartening, because it was the first one that provided relief for both the nerve pain in my legs that I’ve had for eight years, and the mysterious head/face pain that we’ve been trying to figure out for the last 5. No luck. But that med, that pile of gold in a bottle that finally eased the pain for both, was also a med violently rejected by my body, so I was forced to quit it. I cried and cried. I felt angry at my own body. Why wouldn’t it accept something that was finally helping it? It’s hard to hold out hope during times like that.

I was horribly crashed the day after the episode, but we had to go back to the doctor the next day and get my medicine sorted out. Another hour car ride, (thank you Mom and Marc) and we weren’t really told why I would have that kind of reaction—which seemed to fit the bill for serotonin syndrome, something I have had at least one episode of before. But they shrugged it off and agreed it was best to just return to my old regimen. The “good enough” regimen. There was only one huge problem that remained:

The side effects of that new drug I tried didn’t go away when we stopped it. It was as thought a switch was flipped. It began in October. I am still dealing with extreme restless legs and arms and toes and hands (which for eight years prior were 90% under control with lyrica), and my skin crawls as if I’m being tickled from the inside if I don’t take a different med to calm my whole nervous system down. The symptoms are insane without this new med.. SO, just to fill yall in, that was the last quarter of 2017, and I can say objectively, IT ROCKED.

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****

I am telling this story because it’s just one example of how messed up this situation is, in so many capacities. I have had to see four doctors in order to get the medicine needed to calm down the symptoms caused by a medicine I tried for a short while in October. The DEA is coming down explicitly hard not just on patients but on doctors too and if they’re prescribing any kind of controlled substance. Their licenses are threatened, and they aren’t allowed to treat their patient the way they might normally choose— because an entity that knows nothing about medicine is interfering with their medicinal plan. But more importantly, I’ll never forget what my primary care physician said to me in a recent visit while we continued to try and sort all of this out, as I squirmed like a a worm on the examination table, about to run out of the medicine that was helping keep things ‘calm’ but I was forced at the time to try and ween off of. He’s a very good doctor and extremely educated in Dysautonomia, which is a huge part of MECFS. He said “It’s better for one or two doctors to be prescribing all your meds, not six or seven.” I agree with him. And how nice that would be, if only it were possible.

This is what MECFS patients mean when they say there’s no place to turn, no safety net. A person with cancer goes to the oncologist. A person with diabetes goes to the endocrinologist. Someone with heart disease, the cardiologist. Where does the person with MECFS go? The literal handful of specialists, if they can afford it? And where it’s difficult to fill any prescriptions because the specialist is out of state? Local doctors have often heard of Chronic Fatigue Syndrome, which they often conflate with Fibromylagia—an illness one of my male doctors actually used AIR QUOTES when he said it aloud, as well as “Intersticial Cysitus”. I wanted to laugh high pitched and say with my own air quotes “Yeah, you’re a “really good doctor.” It’s such a joke. We are so misinformed. So uneducated when it comes to such a debilitating disease that is not new and is not rare. I’ll leave the numbers out of it, I’ve said them so many times before I believe they’ve begun to lose any real meaning at all.

By Christmas, as you may guess, I was not doing well at all. It was my favorite time of year and it all felt so tainted— the normal seasonal colors were drab and as I looked out the window of my moms car as she drove me home from yet another doctor appointment, I couldn’t help but cry. It was drizzling and ugly out, and nothing felt balanced or fixable. Just let it out Mary, it’s OK to be upset, my mom comforted me. But I was upset at even being upset. I wanted to be cheerful and play Christmas songs, but everything felt covered in the haze of this disease, the amount of time it took not just from me but from my parents who have lives of their own, and my lack of ability to advocate or do anything I wanted—it was all waring on me. On us. Everything felt like it was falling away.

I was extremely depressed and hadn’t seen friends or felt like I’d done something truly social or fun or meaningful for too long. Everything revolved around finding waking up to and finding physical relief, and then being fought back on every effort we made. I can’t count the hours we’ve spent at Walgreens, arguing that insurance should cover a medicine, or being told that they didn’t have this or that medicine in stock, so we could wait three days or drive an hour to another Walgreens that does. Once we were told they had 19 pills, of my prescribed 120. “I can give you the 19 now, but you’ll have to go back your doctor (an hour away) and get a new prescription written in order for me to fill the rest when we have it back in stock.” Someone. Please. Explain. Everything was a battle. I grew so tired of fighting, for everything. The disease is hard enough, but the logistics of the disease is often just as hard or harder. It is truly, I say this with total conviction, a full-time job. That phrase It shouldn’t be like this would play itself in my head a lot and it was hard to disagree. But what can you do? Keep going. Always keep going.

We had a good Christmas, and thus far I’ve been able to get the treatments I need in order to remain mostly comfortable. Thank you, Dr. Patel, and thank you Dr. Klimas. You truly are heroes to someone like me. I wish the government would leave you alone—-unless it meant funding for research, then come on in yall!

It’s a new year, and for now, I have what I need. (Thank you MOM, and Marc.) How I wouldv’t survived the last part of 2017 without you, I honestly don’t know. I feel decently functional right now and for that I am incredibly grateful. I just felt I needed to write out a bit of what happened last year, because behind it all, I hated that I wasn’t able to devote more of my time to advocating. I was in bed or my house somewhere, thinking of grand ideas that I was too weak to carry out. But enough of that, it’s in the past. I believe this year will be different as I’ve said before and we’ve already hit some major goals, which I will spill soon. So be on the lookout yall and hang on. I know how discouraging it gets, how isolating. I know how hard it is to hear “You’re not alone” when you’re by yourself. But it is the truth. We are getting there, we’re not alone, and we still need outsiders help.

Mom, Marc, Monty, Family: thank you.

Health, Happiness, & Good Things To Come

Miami, Migraines, Diners, Doctors

I am sitting at a booth in one of those themed diners in a shopping center, adjacent to the clinic where I saw the specialist on Monday and had what looked like hundreds of vials of blood taken today for more testing. I figure I should eat even though I’ve no appetite. I never trust a menu this long, so I play it safe and order the soup and salad, which is neither good or bad. I guess that’s what you’re really asking for, a meal to quickly forget.

mp,550x550,gloss,ffffff,t-3.3u2.jpgThe music is too loud in here and I find myself strangely annoyed with the gimmicky decor. License plate style plaques fill every inch of wall space boasting phrases like “Stressed is Dessert spelled backwards!” and “Soup of the Day: Whiskey.” I stop. I just close my eyes a minute. Adjust. The problem is not the restaurant. It’s me and this body I have to animate—it doesn’t fit in the world in comfortable or easy ways. It’s like dropping a wild tiger in suburbia, except maybe the opposite. It’s like trying to build suburbia in the middle of a jungle, then complaining the tigers are noisy and sometimes scare the kids. No one else seems bothered by the music.

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“Hey, you don’t belong here.”
“I might say the same thing about you.”

I don’t want to be this young and think like a curmudgeon. Better to let go. It’s because it’s 11:30 and I’m on day 9 of a migraine cycle and I’m wearing real pants. I had to get blood drawn and I don’t normally exist before noon. Mornings are just constantly, reliably painful and tough.

Everyone has days where life feels so tired, so repetitive, that you want to hit snooze and wake up under some alternate sky where there is no weight to carry. No gravity, no effort required to move. Where everyone looks each other in the eyes. We listen. We don’t say the words “Sorry” followed by the word “but…” or “if”. Our hearts resonate with each other, and our heavy bodies have shed like snake skin, like the useless, heavy weight they’d become. There is a lightness in every capacity.

Tolle says this alternate side of the sky I am referring to is possible here on this side. And I believe he is right. But it takes so much practice and learning and presence. Presence. How easy it is to walk into a cheap diner and complain about decor. ap,550x550,12x16,1,transparent,t.u2.pngThat kind of observation lacks creativity. Not to mention, it’s very counterproductive to complain about these things when you’re already feeling down. So I’ll tell you what I like about this costumed diner. All four booths in my vicinity are filled with at least parties of two people eating, and all of them are talking to one another. None of them have their phones out. A phenomenon! Particularly this couple across from me.

They are in their 60’s, and somehow it seems obvious they’ve known each other a long time. I could be wrong of course. They could be divorcees who met on ourtime.com and newly in love. But it’s not the sense I get. In my mind they’re in their Act III of their marriage with grandchildren they have pictures of on their phones to their friends at Bridge. I like that they haven’t run out of things to say or lost some kind of delight in the simple pleasure of each others laugh. They seem to laugh a lot, casually, throughout their light hearted conversation and this feels so good to watch. I always used to fear I’d marry a man and eventually he’d lose interest in me and I’d find his stories boring and then we’d be at a restaurant eating one day with nothing to say to one another. As though there was nothing new to discover about the other, or that we’d lose curiosity in the way each of us experienced the world.

But I know that only happens when we’ve decided we know a person completely and with total certainty. And if we’ve decided that, the issue is not the other person.”The human mind mistakes its opinions and viewpoints for truth…but it is no more than a viewpoint, one of many possible perspectives. Reality is a unified whole. Thinking fragments it into pieces.” Tolle says a lot about the “thinking” mind, and that it’s very useful in our world. But it’s also “very limiting when it takes over your life completely. It’s only a small aspect of the consciousness you are.”

Sometimes I seek the daily, thoughtless things about a person with such aggressive interest I think I might be dumb. Their calendars, notebooks, what they keep in their cars. One of my favorite hobbies is to take apart a guys wallet, piece by piece. All the useless receipts he saves. The frequent customer cards. An old crumbly picture, maybe. Movie stubs. Concert stubs. Their license—are they smiling in the picture or does it look like a mug shot? What made the cut for making it into the billfold and what didn’t. All tiny stamps of a person and his non-sequitor, paper trail of places he’s been. You can have the same fun or more going through a woman’s’ purse. Many clues in there. But these are little traces so few people see. Instead we go to dinner and say “Uh huh and what do you do? Oh interesting, tell me more about your boss. What a jerk!” I think first dates should be silent a exchange of wallet for wallet, or purse for purse, or wallet for purse, whatever. You get the picture.

My last boyfriends wallet, unless I’m remembering incorrectly, was a basic brown leather wallet that seemed to old for him and contained some concert stubs, because he was a music guy and not a whole lot else because he had a straightforward way of being in the world. A wallet was a thing to hold money and his license. But maybe more memorable was the night we went to dinner and left Monty and his dog Gracie home. When we returned, his wallet that he’d left on the coffee table had been chewed. His license, a credit card, social security card, and a one dollar bill perfectly torn in half littered the living room floor. We both loyally defended our own, claiming that “100%, my dog would never do that.” I thought it was kind of funny—a mystery we’d never know the answer to. Maybe it was Monty (it wasn’t), telling me Run! This thing isn’t gonna work! Mayday! Owell. Fun while it lasted. I still have the half chewed dollar.

I could say that the two buzzing gnats flying around my side salad are concerning, but you can basically always reduce these impulses to complain or feel disturbed by something or “talk to the manager” to nothing, because when you start to break them down, they just don’t mean all that much. We forget that so much of our devoted focus, particularly when it’s negative, is essentially meaningless. I am one person, and I chose to eat at a diner where children under the age of 12 eat for free between noon and 3. There may as well be a sign that says FREE BUGS. This isn’t the RITZ. The meal costs $10 and the waitress is nice.  If you’re always making noise about your tiny discontent, you just become a human gnat. We should ask ourselves what our questions or actions or statements are intended to do for five minutes before we go running to every manager. It’s so often just a thoughtless impulse. Gnats! We could just as easily forget about it and move on with the day.

I take an Uber home, and I find myself alone in the back of Ubers quite often. ‘Often’ is a relative term. I’m appreciating that the driver isn’t trying to engage in conversation. “It’s hot out!” “Yes, it is hot out! Also, I have a doggy!” I’ll tip him more for that.

Miami is a picturesque place, and I like the sidewalk traffic. Watching the world through 179389-3908867d8a204eebbcef4215613a5da0.jpeg  the window feels so much better than TV–and no commercials. Bonus! I see a couple kiss while they wait at the crosswalk. Then they smile and she says something that makes them laugh. I love seeing people kiss. Creepy? Maybe. I just like that kissing exists in general. There’s traffic, which is another easy thing to complain about. Tolle says complaining is one of the ego’s favorite hobbies. (Also being right.) But I’m in a quiet car. All I have to do is sit here, one of a few things where I’m actually quite skilled. Many beautiful things pass us by at a stop and go pace. I try to imprint the sights on my brain to take home with me.

I try presence. Just being aware of all my senses. I am grateful to be out in the world at all, when so often I am indoors. I try to remember how lucky I am that I was able to come here. What a gift it is to see a doctor who understands, who listens and looks you in the eye, who can help me find answers. (Thank you Dr. Klimas!) That I have my brother and his beautiful family to stay with and help care for me. That it’s time together we wouldn’t have had were I well. Yes, I have a body that feels like a decomposing pumpkin at times. And I actually feel I may look like a decomposing pumpkin at times. (See video below) But so many moments to be grateful for. So many gifts. Count them. Keep counting. They add up faster the more awake you are.

Keep fighting. Last year was hard. I believe somewhere in my depths, this one will be better, no matter the directional trend my health takes. I know we’re getting close. I tip the Uber driver and leave feedback. “Thank you for the quiet.”

Health, Happiness, Counting

All awesome artwork by Eugenia Loli

*Bonus*: I’m on Day 9 of my migraine cycle! Here is a clip of yesterday morning. It was kind funny in that tragically comical way.

Teach Me Somethin, Tolle! Today: The Stories We Tell Ourselves

“The primary cause of your unhappiness is never the situation but your thoughts about it.

Be aware of the thoughts you are thinking. Separate them from the situation, which is always neutral, which always is at it is. There is the situation or the fact, and here are my thoughts about it. Instead of making up stories, stay with the facts. For example, “I am ruined” is a story. It limits you and presents you from taking effective action. “I have fifty cents left in my bank account” is a fact. Facing facts is always empowering. Be aware that what you think, to a large extent, creates the emotions that you feel. See the link between your thinking and your emotions. Rather than being your thoughts and emotions, be the awareness behind them.” (pg 5)

This is a small passage but it’s pretty rife with depth and possibility that I feel I could discuss it for hours over coffee and a crumpet, whatever a crumpet is. But it’s an interesting premise. Given that this is a blog mostly about life through the lens of being sick, I have to relate these things to my own experience. Sometimes I think, this is such an eye-roll. A bore. I want to tell others stories and look at these things through their lens, but I not only don’t have that access, I don’t have that right. I only know truly what it’s like to be in this world as me, Mary, and so I use what I read and try to apply it to my own life experience. Surprisingly, it helps. It’s funny how reading passages like this, you can think of other people and be spot on by saying “Yep, Dianna totally does that.” But the more conscious approach is to look at it and become aware of the ways in which you’ve “missed the boat” this same way at times, or catch yourself doing exactly what he’s (Tolle) talking about.

The part about making up stories is perfect, because it is surprising how often and how quickly our minds resort to this tactic, I guess as a mechanism of just not looking in or at ourselves in any meaningful way, (because that is both difficult and sometimes painful) but always pointing the finger outwards. It evades personal accountability. But telling stories has long been something we all do, and I can think of so many times I’ve done it, then facepalmed myself in the forehead later thinking, What was I thinking? I literally just made up some scenario in my head, and believed it, and was absolutely completely wrong. Someone doesn’t call back in a timely manner. You don’t like their response to something. Your jeans are missing and you’re convinced maybe they accidentally took them and GOD DIANA WOULD SO DO SOMETHING LIKE ACCIDENTALLY TAKE MY JEA…..oh here they are… in my closet…”

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It’s crazy how fast down the rabbit hole we go, convinced that Diana didn’t call us because she just doesn’t care about our friendship anymore, and you know what, maybe she NEVER did?! Maybe I should send her a mean text! “Oh, her grandma is in the hospital and she’s been away from her phone…”Oh, oh Diana, I’m so sorry to hear that. What can I do?” How stupid our egos can be! And what good story-tellers! They are always looking to be wronged, which is why they can start a fight about anything, literally anything. Frozen Yogurt? OH I’LL TELL YOU ABOUT FROZEN YOGURT! Um OK Diana, calm down. DON’T TELL ME TO CALM DOWN!!! *turns into the hulk, flies away*

It doesn’t mean we aren’t sometimes wronged. Or we don’t sometimes deserve to feel hurt. All of that will happen. It’s more about response to painful stimuli that human behavior just seems to get wrong. We are clearly, still learning.

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Hey, this water is pink!
OK, so we’re really good at blaming. And great at creating scenarios in our head that aren’t actually true except in our own self-made ego reality. (Which isn’t actual reality) And we’re really bad at self-reflection. I say “we” because I’ve seen this actually happen in action. To me, to others. It’s crazy! Never seen it? Open your eyes and wait for the Holidays to come around or wait in line at Walgreens or get stuck in traffic, you’ll find plenty of it. Passive aggressiveness. Blaming. Gossip. Anger. Insensitivity. All the yucky stuff that makes things which are supposed to be fun, not so fun. And we’re all guilty. It’s easy to want to point a finger at one person, but if you’re offended or participate, even in tiny ways, you’re part of the dance too, my friend. And I have done plenty of dancing.

The other part of this passage that I think is so important is the difference between facts and stories. Saying “I’m totally screwed” is a story, like he said. But so often we get ourselves so upset, so anxious, so depressed about things that are going to unfold one way or another, and in that present moment, you’ll address them. But if you’re too far away from this present moment, always stressing about the future, you will never enjoy life in its natural form–which is always happening in the now. It doesn’t mean you just mosey around until “the future arrives.” If you’re truly present in the moment we call Now, you’ll be ready for whatever happens, which you have absolutely no way of knowing how it will unfold. He also says this:

“To be in alignment with what is means to be in a relationship of inner nonresistance with what happens. It means not to label it mentally good or bad, but to let it be. Does this mean you can no longer take action to bring about change in you life? On the contrary. When the basis for your actions is inner alignment with the present moment, your actions become empowered by the intelligence of life itself.”

Duuuude, deep stuff. It’s easy to be sick and tell myself stories like “This isn’t fair.” “I can’t catch a break.” “It wasn’t supposed to be like this.” But all according to what? According to my version of what I thought my life should look like–none of it based in the reality that my life is. When I am in true stillness, and I’ll reiterate this time and time again– if there is something crucial missing from my generation, and the baby boomers will tell you we don’t know what hard work is and we’re ultra sensitive and have all kinds of nice things to say–what my generation is truly missing is stillness.

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It is very hard to self-reflect in a noisy, demanding office, a loud home, when you’re constantly with people, when you refuse to be alone, or as soon as you have solitude or quiet, you turn to your mobile device as some kind of virtual company. So few look at time alone as an advantage to reflect. Or do whatever you want. Pray. Meditate. Read. Just try to be still. Try not to get on social media and see if you can be comfortable, alone with only you. People think “being busy” means being important, but it really doesn’t. Try doing nothing. See how long you can do it without outside stimulation. Then tell me you wish you were sick and didn’t have to go to work. Hah. I always loved that line.

I don’t think you have to be absolutely quiet or alone in order to obtain what Tolle is talking about. If you are awake in these crucial moments–at work, with your kids, at the dinner table, then you’re effectively reaching consciousness. Take time to acknowledge what you have and the good in your life. It’s all there; it’s up to us to open our eyes and see it.

Health, Happiness, Reflection :) (:

*Awesome, awesome artwork by Sonia Pulido

Teacher Tolle Tuesday

johnholcomb-1I’ve been meaning to create a segment for a very long time where I take passages from Eckhart Tolle’s books and put them here for the world, all thirteen readers of you, to see. ;)

There are certain passages from all of his books that I have underlined, highlighted, circled, starred, tabbed…you get it. And they all come from separate times I’ve read the book. The passage I’m about to transcribe here comes from a book of his called Oneness With All Life. I fear even writing that because it’s an easy way to turn someone off to it–there’s so much “new agey” crap about solving the mystery of life and “finding happiness” that the more details I give I’m afraid the more you’ll be resistant to reading it. I can understand that, there’s a lot of people claiming to have LISTS and PROGRAMS and FIVE EASY STEPS promising you happiness that it’s almost depressing. Happiness is not some trophy you come upon and clench when you’ve truly done it. Don’t we know that by now? How can we not be blindingly aware that no, money doesn’t buy you happiness. Duh. Look at your rich friends or family…do they seem insanely happy? No. Of course they don’t. They’re just often unhappy living with SUPER awesome amenities. But they do get to fly first class and I always tell myself if I’m ever rich, THAT’S where my extravagant purchases will go to…traveling first class. I’ll remember with a shudder the horrors of the main cabin. See? Already spoiled. Complaining about the incredible GIFT OF FLIGHT.

I remember in an airport once, I saw a book called the Happiness Project….which was all about following these set of rules, because as many do, this woman had found herself married, two kids, a job and loving husband, and yet not really happy. So she began the voyage. And developed some program to follow to be happy. And guess what? She seemed to find happiness! And maybe she really did. But reading it I couldn’t help but think that it just felt a little obvious and maybe a little gimmicky. I believed she was truly trying to find happiness, I just couldn’t buy that these were the ways to “get there.”  There aren’t rules to being happy, people love knowing what to do, it helps them feel in control, and that alone assists with “happiness”. Which is why when things come up unexpected, we just lose our minds because WE DIDN’T PLAN FOR THIS DEBORAH! There’s a lot of people who will promise you can be happy, and live an entirely great life, if you just tweak a few things. And sometimes they’re right. But that self-help section is bursting at the seams with many more who don’t seem to know, and we’re gobbling it up for a reason: because we all want to know. TELL ME!!! I’ll do anything to escape my misery!!! Wait what? No I won’t do that.

The truth is, according to the modern mystics,  in order to achieve our own inner level of peace, we have to look deeply at ourselves, not others. We have to change ourselves, we have to see ourselves, become conscious of our life and our way of seeing things, our patterns we’ve been taught–to react and stress and yell, when really none of that is necessary. If it rains when it’s supposed to be sunny, it’s going to happen whether you lose your mind and freak out or say, oh well, what should we do now? And if there’s one thing I’ve witnessed time and again, it’s that when someone is freaking out because things didn’t go “right”, and other people are not freaking out and casually just moving along because um, hi, we don’t control the sun, THAT. PISSES. THEM. OFF. Interesting, isn’t it. That’s the ego, clinging for life, and now not just angry that its raining but that OTHER people aren’t angry it’s raining. It’s ridiculous. But it’s the way it bees, and it doesn’t have to bees that way. I just know that we should be incredibly leery of promises that your life and your happiness can be changed and attained all in five easy steps! I’m no Einstein, (REALLY!) but I know when it comes to happiness, more importantly, when it comes to true inner peace and joy, there are no shortcuts. Life is really hard, and you can’t evade the pain. But you don’t have to create extra pain for yourself. The “extra arrow” as my friend Daniel always talked about. The story we tell ourselves about the facts. You’re going to experience pain, but you’ve got to do your work to figure it out, find the hidden seed of grace, and find how to grow bigger from it bot let it swallow it you whole.  But a lot of our pain is self-created, and I do it to myself all the time. Convince myself of some madness or offense, only to find out later I was TOTALLY wrong and an idiot for believing what I did. That’s how we can help ourselves. Ignore ourselves. Haha. Ignore our thoughts, pay attention to our inner self–two very different things.  There’s no “List of “10 things to follow and you’re all set!” So burn that book, if it exists, and I”m sure it does.

Tolle and a few other mystics are very upfront about truth and about how to go absorbing what they’re putting out there. But they are of such a different breed–they’re not writing about how to “get happy.” Which is what people want. 5 steps to get happy! They’re writing about how to be conscious. How to save yourself from causing undue harm or pain to yourself or others. And when you’re conscious in the world, you’re honest, with yourself and others–you’re honest when you’ve messed up, when you’re lucky, in pain, grateful, loved, sorry, and when you love. When you’re conscious and honest, you can’t lie to yourself about what the true source of pain is. You may not be able to know what it is, but you can definitely know what is isn’t.

SO, every morning, I read from Tolle’s repertoire of wisdom—books I have read over and over and over and I will continue to do so. Because all of them elicit further consciousness every time you read them. I feel similarly about Michael Singer, Marianne Williamson, and especially Gary Zukav’s Seat of the Soul. I’m sure there are more I’m forgetting. But I have long days. I don’t leave the house a lot. I have to learn how to harness the normally spent mental and psychological energy that would go outward into the world, into tasks and work and conventional effort, at home, in silence a lot, in solitude a lot, with no plans, no control. The biggy. This is not easy and can be a great source of pain, more than the illness itself. So, on Tuesdays, we’re gonna take Tolle’s words that really stick, with a cup of tea. And I’ll just write them here. Maybe they’ll stick with you too. But please don’t give up on this post because I’m rambling. I’m gonna stop. Here’s Teacher Tuesday’s Lesson One, and it’s one of the more profound and lasting passages I’ve read. SO here it goes. Also I just jumped right in to the center of his stuff so we’ll have some preliminary terms to go over. We’ll do that next Tuesday. I’m still learning. See you then.

People believe themselves to be dependent on what happens for their happiness, that is to say, dependent on form. They don’t realize that what happens is the most unstable thing in the universe. It changes constantly. They look upon the present moment as either marred by something that has happened and shouldn’t or as deficient because of something that has not happened but should. And so they miss the deeper perfection that is inherent in life itself, a perfection that is always already here, that lies beyond what is happening or not happening, beyond form. 

Accept the present moment and find the perfection that is deeper than any form and untouched by time. 

The most important, the primordial relationship in your life is your relationship with the Now, or rather with whatever form the Now takes–what is or what happens. If your relationship with the Now is dysfunctional, that dysfunction will be reflected in every relationship and every situation you encounter. The ego could be defined simply this way: a dysfunctional relationship with the present moment. It is at this moment that you can decide what kind of relationship you want to have with the present moment. Friend or enemy?

The present moment is inseparable from life, so you are really deciding what kind of relationship you want to have with life. Once you have decided you want the present moment to be your friend, it is up to you to make the first move: Become friendly toward it, welcome it no matter in what disguise it comes and soon you will see results. Life becomes friendly toward you; people become helpful, circumstances cooperative. One decision changes your entire reality. But that one decision you have to make again and again and again–until it becomes natural to live in such a way. 

Health, Happiness, Tolle Teachin

**Awesome artwork by Sarah Elise Abramson

Exshoes Me?

Someone explain to me why these shoes exist.

Why are they 400 dollars.

Why are they award winning.

Why is 300 dollars considered on sale. But they’re on sale you guys! SALE! 
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I’ve got a lot more writing to do, and mindfulness to be mindful of and reading of things that warrant being read. But all I can think about is these loud pom pom shoes (their words not mine.) I keep picturing if a clown/magician hybrid was at a birthday party and said “Hey, wanna see what kind of footwear I can produce, merely by farting?” THESE would be the shoes. And they’re not even that bad. In fact, they’re kind of funny. And I appreciate a sense of humor in fashion. Not to mention, in the marketplace of women’s footwear, (namebrand anyway) $400 is almost nothing, which is insane in its own right.

But these aren’t Louboutins or any of those other fancy hard-to-pronouce brands that warrant their price by brand alone and also merely sounding expensive. This is just the world we live in. Why can’t I get them out of my mind? That red color? They’re not that bad. Could I actually like these shoes? And then not like myself because I actually like these shoes? No. This is getting too existential and there are wars going on. This never happened.

BUT FOUR HUNDRED DOLLARS FOR CLOWN BUTT EXPLOSION SHOES? OK stopping. I’m now thinking it’s possible I might like the shoes. Also, I made this blog about shoes a long time ago with an oppressive amount of indoor time on my hands. I never released it into the wild because it’s not actually ready or done or whatever. But I guess now is as good a time as any. I’ll work on it. It’s called Is This A Shoe? Inspired by an ad for something that I think was supposed to be a shoe but I truly could not distinguish if this was something to wear on your foot or a childs toy from Ikea. (See second shoe from the bottom) Attributed also to the amount of inside time you have when you’re sick and in bed and have run out of cracks to stare at crawling along the ceiling. Click to see shoe blog. 

Oh yeah, and now some vastly more important matters before I go. Good God I should be ashamed of myself. This should be at the top. Anyway, pay attention:

Unrest the documentary is on Netflix, so you ain’t even gotta pay. Just watch it. You know you were just gonna watch The Office or Parks and Rec again, or feel sad that Stranger Things is over for a depressingly long time, so do yourself a favor and watch a really good, real life, movie. If you don’t have an account, email me, I’ll give you my password so you can watch.

SIGN/SHARE the petition. I abandoned it a while. It was a sickly and bad year, yada yada yada. Lots of excuses. But if I can advocate other’s work, why am I not advocating this one? It’s dumb, I’m dumb sometimes. So please, just know the petition is still UP AND RUNNING, and yesterday, we hit 44,000 signatures!! Still really, really incredible it’s acquired those kinds of numbers. All the more ways to DISRUPT and get the world to see. Power in numbers. Yada yada, you know all this. It would be really sweet to get to 50,000 by Spring, and then one million by summer, don’t ya think? Me too. I think we can do it. So let’s do it.

Until next time I come across something banal and obvious that I don’t understand…

Health, Happiness, Fight On

My Super Duper Serious Farewell Video to 2017

I worked super cereally hard on this video you guys! I’m seriously cereal! Sorry, link was broken before– youtube couldn’t handle the serious complexity of this super serious farewell video.

 

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Here’s a picture of a rain dropped sloth, because, why not?

Health, Happiness, and 2018 Bring. It. On. Like Donkey Kong. Yeah I said it.

***Artwork of sloth, plus so much other great art, by Sonia Kretschmar, and you can look and enjoy all of it! Here or soniak.com. Keep goin Sonia, your art makes me happy.

Looking Up

If you’ve ever looked at that iconic photograph of earth sent back from space by the Apollo 17 crew in 1972, chances are you may have felt very small. The things you do can seem insultingly unimportant, useless, or a total waste of energy—the effort, our pain, the whole point becoming lost in the incomprehensible hugeness of it all. In one snapshot is a glimpse of our existence within the context of an entire planet: billions of people.

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There we are, floating, in orbit, rotating at some figure I could never pretend to compute or understand. A sphere of blue and green, dusted with blurs of white clouds we learned the names of in fourth grade. Cumulonimbus. Stratus. But it expands even further. A planet, within a galaxy, within a solar system, within a boundless universe for which we can only account for a relatively small portion. Why am I worried about the U2 album that came pre-programmed on my iPhone? I didn’t ask for that album Bono, I didn’t ask! But you look at our planet like that, and sometimes it helps spot spilled milk when we’re unable to discern it ourselves.

Snapshots just like this are every where in all types of forms– landscapes like the ocean, trees hundreds of years old, music that hits us somewhere deep or a night sky full of stars. They stir inside us some sacred moment demanding our attention. Attention beyond the five senses. These are the stirrings of Consciousness, I think. Or becoming aware of it. That divine desert in our depths, dormant and shy, but reliable like a sleeping dog, waiting on us to wake up and snap our fingers, let him lead the way. Always that calm sits in the background of our thoughts—that sturdy part that never leaves. The gap between breaths, but we forget. Last week I sensed it watching the wind rustle the leaves of the bamboo in our yard for I don’t know how long. I don’t get out a lot.
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I know this is Consciousness I’m confronting, because a stillness envelops me, time melts like a clock in a Dahli painting, and the typical limits and boundaries fade. A noise that usually dominates the atmosphere diminishes to silence. I haven’t arrived or gotten anything, I’ve simply met the present moment and there the forms, my thoughts and the sounds seem to run out of ink. A space is required for Consciousness to awaken, but it’s usually drowned out by the incessant noise of our lives. Opinions and drama and auto-pilot tasks and Snapchat. Trump. Chatter. Twitter! 

We are bombarded by distraction, no doubt, and there will never be a shortage to keep us looking the other way. Because consciousness doesn’t operate according to the limits of space or time, we are glimpsing eternity in that instance. A non-quantity! It’s no wonder we can’t hold the reality of this perspective in the forefront of our minds for very long. It almost operates on a separate plain. Size without a producable sum total– time beyond a unit of measurement: this is not how we learned to understand the world. It’s like trying to remember what words looked like before we learned to read. Then going out in the world and being told not to interpret the thousands of messages we’re assaulted by. Even Monty knows this is basically impossible. It will take some time to unlearn the default.

So we can only live in that space for so long before it vanishes out from under us, like a dream that dissipates as we slowly awake. The sky then fades back to a ceiling, a black ceiling with white dots. The ocean returns to an aquatic location where we swim and fish and take family pictures at sunset. And why not? Sunset by the ocean is the perfect backdrop for photos.

d62e90913370966f6d5efa7a2e878b0b.jpgThis Consciousness is hard to reconcile with the world we live in though, because it veritably negates the way we’ve been taught to perceive the world for centuries. At the same time it also perfectly encapsulates  Tolle’s explanation of our life here, which he emphasizes is not according to time, but to being awake in the now–the closest thing to time that actually exists. The Eternal Moment, he calls it, which works out in every scenario where you try and deconstruct it. I’ve tried. Still, when you’re down here in the dirt, when you’re in pain, it seems far too simple a way for things to operate.

So when the window opens, we can expect it to be small, but we should hold on as long as we can. I know that’s where a much more permanent and truthful dimension in us lies, it just hardly gets time out of the box. So I try not to be afraid of the quiet, of being alone, of having nothing “to do”. In these uncommon, custom moments, forces larger than us might be at work, awakening something that the whole world, not just us, is in great need of.

Most nights, I walk home from my parents house with Monty. They lock the door behind me and sometimes my mom yells Watch for snakes! Marc flips the switch and the Christmas lights in our trees illuminate a path to my house, a whole 15 steps away. Monty bolts off feigning a hunt of a squirrel or raccoon or some other Southern vermin. Midway between our houses is a small wooden path over the ditch that connects their yard to my driveway. Every time I reach that bridge, I stop, almost reflexively. I look up. Every time.

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Sometimes I’m holding a laundry basket full of clean laundry with my head pointed upward at the sky and mouth agape like an idiot. I often don’t even remember making the decision to stop or look up, I just find myself with my head directed that way. For whatever reason I think, I’ll remember this when I’m older. I see these constellations of stars and whatever shape the moon takes and if I’m lucky, rarely, a shooting star. I remember then too: the sky is not a ceiling. The sky is not a ceiling. Then I try to reconcile that truth without my mind exploding, and consider that what I’m looking at goes on. Then I try to humbly just appreciate the beauty of this magnanimous thing and think  think how I have absolutely no idea what the hell I’m looking at.

I just know I’m mesmerized by what I see and some part of me is drawn to look there, every night. I wonder a hundred things. A part of me thinks maybe it’s the soul making a nod toward its source. The same way we’re drawn to look out at the ocean or up at trees the height of sky scrapers.  Maybe it’s just a bunch of burning gas with no intrinsic meaning and this is a crap romanticists idea of the cosmos. But that notion feels too simple when held up to the backdrop of the universe’s complexity.  Just like staring out at the ocean. These stars, this water: all here before us. All to go on after we’re gone.

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I think when we capture these hiccups in time, it’s not meant meant to make us feel small or meaningless; That none of this matters.  But I do think it helps us remember that our time here is temporary. We don’t exist on earth forever, which the human being practically takes as an insult. How dare there comes a point when I die! So we don’t talk about it, fine. We don’t have to talk about it. But we have to deflect the thought that just because we live in a boundless world with a kazillion people that we’re somehow replaceable and we don’t play a very needed and unique part in the production. It takes a trust that’s very hard to reach for, let alone find. I don’t know what the answer is, but I can assume one is that we’re not meant to torture ourselves over not knowing it. Maybe living with the mystery while trusting our path is answer enough, for now.

I’ve been writing about this for a while because one, my brain has run the speed of sap. And two, I’ve been sick every day this week and stuck in a half conscious state in bed. The last 4 months haven’t been much better besides an occasional ‘OK’ day. I realize compared to some of my sick counterparts, thats nothing. But still, it’s hard. It’s like you’re tethered to the world, and you slowly start to drift outward, losing your connection to people, your passions, a reason that makes sense. The further away you float, the more convinced you become that cutting the chord would be no big deal. That couldn’t be further from the truth, and I don’t say that flippantly. I say it as a testament to the power of the mind and our thoughts. They can actually make us believe we don’t matter, which is a dangerously powerful indictment that can be incredibly hard to fight off. I’ve been there, and I’ve had people help dig me out of the hole. I’ve been lucky, and I know that.

During trying times like this when my body feels like it fails me repeatedly, I’ve lost my belief that there is worth in a life spent sick this way. But that stillness, that other plain that awakens under night skies or oceans that you can’t see the edge of, it is so much more powerful if we only give it space to grow. Even just recalling that I’ve felt it before can help me remember that these periods in the dark will be “burned up by the light of consciousness” (Tolle), as they have before. I am still learning. Part of that lesson is to accept the mystery of pain, to even yell at the sky about it if that’s what has to happen, but to keep going, nonetheless. Even if you don’t trust where you are, keep going. At least allow yourself the relief of eventually finding a place you do trust. Like Churchill said, If you’re going through hell, keep going.tumblr_n18wf3teth1r7wnmko1_r2_1280

Life is working in pieces, one day at a time, like always. It doesn’t have to make sense in order for us to be happy. I wish it would– I feel violently curious for answers sometimes, knowing good and well that no answer will bring back the things I’ve lost.  But here we are, who we are, with the hand we’ve been dealt. It matters now how we play our hand in the game. With carefulness, attention, and reverence that you’ve got a hand at the table at all. Be still, make space. And look up once in a while.

I’m talking to myself again. It doesn’t matter. I still I believe there are answers everywhere. We don’t have to know them to awaken the space where they might be easier to find.

Health, Happiness, Looking Up

 

Spanksgiving

Sometimes it’s not easy to recognize the things in life that deserve gratitude. When life is smooth sailing, everything can become so repetitive, so routine, that you almost operate on autopilot. You come to expect things will be a certain way and forget that nothing is actually promised or guaranteed. The bottom can fall out at any time. Most of us have experienced or seen that happen to someone, and it doesn’t always make sense why. It doesn’t have to I guess.

On the flip side, when you’re going through a particularly tough time, it’s unsurprisingly hard to find reasons to be appreciative. Most people have endured a “When it rains it pours” time in their life, and usually during the rain, it feels like some kind of cosmic punishment. It’s not exactly easy to take a few minutes of stillness and consider the things and people you’re grateful for when life is kicking your proverbial ass. And yet there are always things, always people, rare moments or a single act of kindness that if you think long enough, will start to emerge. If nothing pops up, keep thinking. It will come.

I wouldn’t count this year as one of my easier ones or best in health. There’s been a lot of learning and experiences that I wouldn’t write on my “List of Pleasantries” if I had a “List of Pleasantries.” There has been pain and heartache and a lot of feeling lost. But I know that even among all that, when I take even a minute, once a day, and write down the things I’m thankful for, I am less likely to get pulled in or lost in my ‘story’. I have to continually remind myself of the good things in my life and the people I am lucky enough to love and be loved by. Some days it’s easier to remember than others.

It’s not a denial of pain, which requires its own outlet. It’s just a deeper look beyond the surface of larger things at work. It’s seeing things and people in the spaces, the gaps, the small pocket of happiness you might have missed before. My more challenging experiences this year have actually illuminated the ways I’m fortunate and I have felt more gratitude now than at any other time of my life. It’s almost counterintuitive, I wouldn’t have expected that. But pain can do all kinds of things, it’s a shame it has to hurt so much. Jeesh.

Expressing gratitude has surprised me in how it shapes my outlook when I keep it in mind. I’m always trying to at least identify one thing to be thankful for. Even if its “I’m grateful this crappy day is over,” it’s still acknowledging something that encourages growth, momentum, that phrase I’m always repeating in my head: Keep going. Keep going. 

I don’t write this as though these things are easy. It doesn’t take much for me to slip down the rabbit hole of feeling bitter about where I am in my life, about being the age I am and still requiring help, at not getting the life back that I had before. I miss my friends. I miss wearing real clothes. And I become afraid at what my future will be.

Every year that goes by I become more scared that I’ll never be an actual adult. I’ll be in a permanent state of need. I’ll be 80 and my 120 year old mother will be feeding me cream of wheat and we’ll fight over which show to watch.  But I don’t like the idea of anger or bitterness being the last things I think of before I fall asleep or when I wake up. So I work hard to see past the outer experience and at what it might be allowing to happen underneath. Being bitter about needing help from your parents can just as easily be gratitude for having parents that are willing to help you. It’s all about perspective, and taking the time to see and acknowledge things on the other side, and there’s always another side.

I think sometimes my mind tries to process my whole existence at once, which is mentally overwhelming. Duh.

It’s OK to acknowledge when things suck, and being sick all the time sucks, we can say it. But it’s really only when I jump into a future I can’t know, when I try to gain control over something that isn’t possible that I get into trouble. Sometimes I find myself stressing about things that may not even happen, or things 20 years down the line. What? I don’t even know what I’m doing in an hour! Here in the present moment, there is space for things like gratitude to exist. When you’re panicking, there’s hardly room to breathe, let alone be thankful that there are montages of people falling on youtube and it made you laugh till you cried.

If I my mind gets too carried away, goes too far down the rabbit hole, I give it a slap on the wrist, a mental spanking. And I tell myself to look. It’s not hard to see that I have the things that matter. If I can just stay present, take things one at a time, which oddly enough is sort of required when you’re sick, I can stay awake. I can still see the things I missed before and treasure simple times. There will be chaos and wreckage and things will fall apart, but it seems like the vital things are always somewhere in the quiet aftermath when you take time for stillness and look. The things that matter are there. I guess they never left in the first place.

My favorite author, Haruki Murikami wrote something pretty incredible that I play over in my mind a lot:
                                              Pain is inevitable. Suffering is optional.

A pretty simple and beautiful way of considering life, yeah? I think so too. I’m working on not suffering on top of pain. And I have a small but incredible circle of people in my life who help me see what needs seeing or remember what I’ve forgotten in a moment of madness. I am grateful for so much, even when things are hard. It helps to remember.

Health, Happiness, Spank You

The Day After…

I am laying on my couch with an ice pack on my head, going through a mental checklist of things I need to do. I need to take a bath. I need to do the dishes. I need to finish my proposal. I need to re-ignite the petition. I need to eat. I’m shaky and my heart keeps beating fast and I don’t have an appetite. It’s interesting how hard it is to eat when you don’t have an appetite–just in the sense that like, you need food to survive and to maintain health and that sort of thing. I need something substantial like a sandwich, but that would involve going to the grocery store and hah.. hah..that’s funny, nope. Not happening today unfortunately. Oh look, a stray almond! I’ll eat that.

This day, my head, my house–all of it feels extremely dense to even process and insurmountable in the department of all the work I’m behind on. All the things I said I’d pick back up or start or finish. They’re just sitting there waiting for me, and I’m laying on the couch waiting for my brain to calm down. I probably need to sleep but I can’t, so I just picked up my phone and figured I might as well write these out of sequence, inconsequential thoughts down as I definitely do not do the things I need to do on my to-do list.

It’s a rough day physically but that was to be expected. We returned home from a trip to Salt Lake for my cousins wedding. I knew that I’d probably overdo it on the trip, but I so rarely get to see my family, sometimes you just have to live a little. But that almost always means you’ll have to pay a lot, with money you don’t have. (Sometimes you get lucky) Don’t ask me how this metaphor ends because I really don’t know. Traveling home yesterday was another clusterf*ck of overwhelming noise and sounds and airport personnel yelling things and security guards barking orders and that strangely depressing wait in line without your shoes or belt–so vulnerable! Laptop out of the bag? Fine, fine, whatever you want. There is also the very particular physical discomfort of flying– that pressure in your head, particularly taking off and landing, the loudness of the motor and that background, high-pitched white noise that makes everyone’s voice sound like it’s coming from a crappy radio. It felt like my brain was swelling, and hey, maybe it was.

By the time we reached our gate for the first leg of the flight I was so cognitively overloaded I was holding back tears. Cry baby! I actually wasn’t sad, I mean I may have been sad to look at, but it seems now when I get cognitive overload that’s what happens. Tears. So.. that’s cool. Then we stopped in Las Vegas– now THAT is a soothing, nice quiet airport where you can really decompress. OK but seriously they should warn you when you get off the plane that all of your senses are about to ignite and possibly implode from the inside and so here are some free ear plugs and a helmet so you don’t die from… I don’t know, too many sounds? I can hear the coroner now say it in a British accent: “Twas death from too many sounds.” It felt like a few tiny deaths. We had time to eat in that airport and even the wallpaper in the food court was overwhelming to look at. It dizzied me. It had diamonds, clubs, spades and hearts, which is very appropro for the destination, but it all just felt like.. a lot. By the time we came home I wasn’t even tired– I was somehow a little wired but enjoyed some silence for a while before more Parks and Rec on Netflix because that show feels like home. OK, this is getting boring.

The good news was how well I felt for at least 3 days of the trip–and they were the important days, too. Of course, I take enough pills to knock out a linebacker, so that always helps keep me somewhat functional. But in general I’ve improved functionally since August, which was a hot disaster with a lot of time being useless in bed. About a month ago, I began taking an anti-viral (Valtrex) for HHV6, Cytelomegalovirus, and possibly a virus that hides in the dorsal root ganglion and can cause a lot of head and face pain. (I’ve basically had a headache for seven years and it spread to my face roughly three years ago. Woo Woo!) So far the pain isn’t noticeably different but I’m moving with more ease, and in general, the right direction. Maybe it was the mountain air. It actually snowed while we were there. It was a nice, balmy 93 here today.

Maybe it was seeing a whole side of my family that I never get to see. And as much as I wish we saw each other more often, it really does make each visit we have together feel pretty special and end up epic in some funny, legacy-leaving way. Like that Christmas when my mom got mad at us for having a bonfire and said we were being reckless and stupid and someone was going to catch their clothes on fire. We laughed her off when she went inside, and then ten minutes later my brother-in-laws pants totally caught on fire. Pretty stupid to be waving lit palm tree branches around as they rained down fiery leaves, but, also hilarious.

My sister arranged for roughly 20 of us to stay in this ginormous house that I am convinced was used for a family of Sister Wives. There were just far too many weirdly placed exit doors with locks. Three too many kitchens. And living rooms. Too many odd rooms where it didn’t all make conventional sense. Hard to explain. Wait should I be a sister-wife? Then I would have help with my wifely duties! Need to think on that…

Anyway, all the love and laughter and piano playing actually energized me and I did better than expected. Major bonus: there was a piano in the house. Second major bonus: my brother Doug, professional jazz pianist and teacher, at your service. Add them together and you’ve got yourself a strange rendition of the song “What If God Was One of Us?” because apparently my brother Nick has really weird taste in music. Doug serenaded us intermittently with some improvisational  jazz, and like always, took requests. So of course, when everyone stumbled inside the house after the wedding, feeling nice and toasty from the matrimonial alcohol, it was only right that we all belted out “Piano Man” at probably an obnoxious volume, with some periodic hugs and a few sloppy cheersing of glasses. We toasted to the dead people and then played all the games they had downstairs, including ping pong, which I think I might actually be decent at. I’m not certain, I may have just played people who were really bad at ping pong. I do curse a lot when I play for some reason. Tisk tisk.

It felt good to be surrounded by people again, and experience the love and noise and general “togetherness”,  whatever that means. I just know it’s rare and fast and doesn’t happen very often, so I soaked it all up before returning to real-life, which is much quieter, and less cool. Waking up Monday was the first day my body said “OK no more though. Like really, I’m out.” And that was OK because there was nothing left on the agenda but to fly home which, was in fact the toughest part of the trip. (“First world problems” I know I know.) So now in the aftermath I lay like a pile of laundry, running through the things I need to do but will still most likely not get done. Dishes. No, eat first. But, no appetite. No real food. What a train wreck: get it together!

There is so much more to say but this is starting to feel like a bore and I still need to eat. How many times have I said that? Anyway, the search continues–how to be sick and alive in the loud, fast world– also how to let things go that you’re unable to do the moment you want to do them, without like, giving up on life. It’s only the day after, I guess the dishes can wait. They aren’t going anywhere.

Here’s a gem of a photo that my cousin Brittany took of at least most of us. It feels like an oddly accurate representation of us all. If anyone in the family doesn’t want to be on the blog…sorry…but you are. I was going to say I’d fix it, but we all know I wouldn’t fix it. I still haven’t eaten! I must eat. Can you spot me? I’m the idiot.

Health, Happiness, Recovery

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Duck Sauce

Congrats Ryan and Wendy! We love ya.

Great Expectations…OK Zero Expectations

Something funny happens when you become chronically ill. Ready? You become totally shitty at fulfilling the roles that probably came easy and natural to you before The Grand Interruption. Parent, kid, sibling, husband, wife, friend–all of those roles are going to suffer, because you’re simply unable to do the things you could before. Your capabilities become limited, your time becomes precious and cornered, and your ability to meet your and other peoples expectations will fall short, again and again. I admit it fully, I’m in general an unreliable source of help, or maybe just unreliable period. And if you don’t think that stabs me straight in the ego, then try saying out loud “I’m a human wasteland” and see how it feels. Because that’s about how it feels.

But we have to be fair, to ourselves and others. We can’t hold ourselves to the same standards as before, especially when we don’t have the same working parts. And we have to remember that the adjustments we make are not adaptations that we alone have to get used to. All those people for whom we provided some kind of role, they’re going to be affected too. They’re going to get exhausted, be disappointed, feel the pain of you not being who you used to be, just as you, the sick person will. I don’t know what it’s like to be a friend or a family member of Mary Gelpi, but I know that I begin 90% of my texts, emails, and conversations with an apology–because I couldn’t make it, I’m responding so late, I won’t be able to attend (insert anything important) I’m sure they become as tired of hearing it as I become of saying it. It’s exhaustive, saying sorry all the time. It’s probably tiresome to be on the other end of it too. But you are sorry, you don’t want to be this crappy of a friend or sister or girlfriend–and while being sick is nobody’s fault, it is the reality and it’s going to be painful. Learning to redefine our roles must be a lifelong process, I’m not sure. I just know I’m still learning.

Maybe a part of being proactive in that transition is becoming more honest and realistic with myself about what I’m able to do. I don’t deny that I suffer from wishful thinking, and probably make commitments I shouldn’t. Letting people know that I can’t be counted on, which is still hard to say, would probably let fewer people down less often. They have to know what to expect, which is unfortunately very little, but it’s up to us to fill them in.  Sometimes you get so busy being sick, you forget to communicate. You forget that people don’t know, or remember. Or you give up on telling them because it can feel repetitive and pointless, but I don’t think that’s true in reality. If I’m not honest about what I can do, out of fear or pride or whatever it is, I will let people down because they won’t know where the line is

I’ve had to face the reality in the last few years that there is no such thing as “solid plans” for me, or relying on myself 100% to be able to follow through with them. Every plan basically has an invisible “tentatively” written behind it. Last month I rescheduled 3 doctors appointments because I was too sick to make it. I have no idea how I’ll feel one day to the next, and that takes constant adjustment. I remember my whole family coming to visit last summer, they were sitting around my living room trying to figure out who could babysit the kids while they went to the French Quarter for the day. I remember sitting in the room saying Guys, I’m right here, I’ll watch them. I was actually, momentarily, offended that they didn’t consider me. Then someone said Mary, you can’t even do your dishes right now. Oh yeah, whoops. I forgot my own unreliability! As Louis C. K. would put it, I’m a non-contributing zero. Hah, yes. That sounds right. I had to laugh that even I couldn’t remember that I just can’t be counted on right now, and as much as that can be a kick in the gut to admit, it’s sort of silly to take it personally. If you’re sick, you’re sick–just admit it and keep moving.

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“Sweetie, can you do the dishes?” “No dad, I’m a non-contributing zero.” “Oh, right. Well, we love you anyway!” “Thanks guys.” “OK now get out of the way so we can do the dishes.”

 

I said in the beginning that being sick makes us crappy at fulfilling our roles, and in the traditional sense that may be true. But it also remains that when you’re sick, you just can’t do what you can’t do. If you don’t have legs, you can’t walk. It’s toxic to compare yourself to an old life where all your faculties were in place, to a new one where half your parts aren’t working. But being sick forces you to redefine your role, and I think there are ways to use your new way of “being” in the world and still be functioning in your respective roles. It’s not as is being sick effects your ability to love. If anything it’s made me love deeper, made me more grateful, and made the friendships that have lasted grow in certain ways. Still, I fail a lot, and many times it’s because I’m a flawed human being, not a chronically sick person. So I try to be extra cautious of both. Like most things being sick teaches, awareness seems to be key.

I’m always asking the questions that I think everyone is asking; am I doing the right thing, am I good person, what am I meant to do with my life? My circumstances? We all have our different sets of assets and vices, and it’s a balancing act trying to find the middle part where your feet are solid on the ground. Becoming chronically sick picks up your lifeless body and throws it upside down and backwards so that when you land you hardly know which way “up” is. It’s a puzzle, a maze, finding your way, but not impossible. The guru’s are always asking “How are you going to use what’s been given to you?” I always looked at that question as asking how I’d use the gifts I was given–the positive things in my life. Now I realize the question is far deeper than that…I think more often they mean, What will you do with your pain? How will you use this Extreme Disturbance to do better? Well hell, I don’t know. I just know that all we can do is try. Many times that means living with the mystery and not the answer. Also not easy to do.

I think it’s possible to use the condition of being sick in positive ways and to also maintain your roles by newly defining them. It seems to require incredible creativity and ingenuity, and I’ve certainly suffered from a lack of those many times. But I know there are ways to transform your old ways into new ones that are equally rewarding but not costly or impossible. I wouldn’t have confronted these conundrums if I hadn’t become sick and lost control of all the things I used to think of as mine. It has at least opened me up to the possibility of higher consciousness, and compared to who I was, I know the Mary without control has a better grasp on reality, is more compassionate, a better listener, less proud and more forgiving. I hope that doesn’t sound like bragging, I just think it’s good to examine the gifts that our so-called shitty circumstances can uncover. I obviously have a long way to go, but I know being sick has opened up deeper channels for me, and transformed the way I see the world and being in it.  Maybe it’s selfish, but I learned forgiveness by having to forgive myself first–for being where I was, for the things I could not do, for always thinking I should be doing better or further along. I had to let the unrealistic expectations go, and forgive myself for not reaching them.

I remember in my first serious relationship, which wasn’t until college, he frequently complained that I never apologized. My response was always “But that’s because I’m not the one who did anything wrong.” Holy cow, I’m the worst! It took years of learning humility and grace that being and saying sorry is a virtuous thing. It means recognizing your wrongdoing and at least becoming temporarily conscious of things you can do better. When you have a fight with someone, sometimes it’s because one person flat-out messed up. But many times, it takes two to tango, and talking things out, forgiving, letting go…all of it is stuff that moves both people forward. I don’t say this pretending as though I’ve mastered the art–I only know it’s there, it’s a choice. And it’s a good thing to know. I don’t know what or who I’d be like, were I still in my structured world, independent, living my life. But I know I enjoy the view from where I am now much more. I almost don’t look at life as mine anymore–I’m not sure whose it is. I’m still the driver, but it’s definitely a borrowed car.

Anyway, I guess this is your healthy reminder to keep those expectations low! And be grateful for the people who love you despite your human-wastelandednesss. They obviously see that you’re still cool despite being sick. And when people ask you to do something you’re incapable of, remind them with a smile: “I’m a non-contributing zero!” Then find new ways to contribute. :)

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“Son, you’re a non-contributing zero, and that’s OK.”     “…Thanks Dad.”

Health, Happiness, New Expectations

 

How to Write About Pain

For a few days now, I’ve been writing about the experience of chronic pain, in a descriptive way that might convey the experience to someone who’s never lived with it before, and also as a comparison against acute/short-term pain, beyond their obvious difference in duration. I think I finally came up with a good analogy to depict the experience of daily pain, the internal battle it becomes, the consuming and exhaustive nature it takes on. But I’m not going to write about that yet. Because also for the last few days, I’ve been questioning why I’ve taken the time to try and get this very unique experience across anyway. I’ve wondered whether it’s futile in the first place, but more I’ve been reflecting on whether the point in it is genuine; if I’m doing a service of any kind, or if my ego has found a formal way to complain. Like Tolle says, that is the ego’s favorite thing to do.

As an FYI, I’ll post about chronic pain next time, because I do actually think it’s important to explore for many reasons, especially if you’ve not been through it. And I’ll write more about why when I come there. But first I had to type out loud, because I question the morality of what I do–writing about my broken body and the battles that accompany it–or if there is any in it, all the time. I constantly ask whether I’m evolving, learning anything, or passing good things along, important things. Or if I’ve sunk to the lowest common denominator of the human experience, something literally everyone goes through in his life, and if it’s just too easy to make that a goal and have it blinded by ego.

I always worry about going too far into how “bad” things can feel. Sometimes, there is truly no point in bemoaning something you can’t control, and it doesn’t help anyone to go on and on about any matter of it. In fact it can easily make things worse, redirecting the mind to focus on negative aspects and intensifying the size of something that you are trying to keep small, in check. Not to mention, you’ll bore everyone to tears. No one likes a whiner, and I try to be cautious about keeping the line drawn, bold and underlined between the two pathways the narrative can take:

One describes an experience so that people on the outside might have a better idea of what his fellow humans are dealing with. It can help expand “common ground”, I think. If it’s done a very good job, it might help replace judgment with compassion, or prevent misunderstanding or a lack of empathy due to disbelief that it’s even real. It helps close the gap between the experiences of two people who have not lived in the others world.

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Guilty
The other path, takes pain and gives it too much of a stage. It exploits something that all humans go through in some capacity and disguises itself as some kind of cursed reward. It gains momentum by reliving the same woes with new words, and by getting others indulge in their own without reflection. It’s not adding anything new or valuable to the conversation. If it isn’t honest or asking for help, if it isn’t uplifting people, but just reinforcing old wounds, it’s fair to say it’s gone south. Ever notice how someone complaining can rub off on you and lead you to do the same, or simply leave you feeling depressed? I’ve experienced it in person, and I know writing and reading accounts can be just as powerful.

Similarly, a positive person, who still acknowledges reality but seems to see through their moment of pain, can leave you feeling hopeful and inspired. The difference is not that these people haven’t endured pain, but what they’ve done with it. How they chose to let it shape them.

I know I’ve crossed over into the negative side way more than I’d like to admit, and probably even fooled myself into thinking it was necessary. Talking about hardship will always draw people in, because we’re all being challenged in our own ways, carrying our unique burdens. But that’s why I scratch half these posts or become too afraid to write about things. It’s a necessary and good thing to talk about the realities we face, because so often it provides people reinforcement, encouragement, reminders they are not alone and the vital belief that they can endure their hardship, just as many before them have, and emerge on the other side. Reading other peoples stories has always inspired and comforted me. Sometimes I distrust myself and skip out on telling certain stories or of certain experiences, but I think maybe it takes practice in reading enough good stories, and knowing the difference between which one will do good, and which one is the ego getting his fill.

I pray constantly to be a source of optimism through honesty, not to exploit a reality that’s in comparison to some, very very lucky. I think you write about pain the same way you live with it, which is to keep in checked moderation and right sized, and attempt to keep eternity in view, somehow. I don’t know how to do this, but I know some good ways not to. So what can I do but try and hope that I’m on the right side of sharing a personal account. Usually if I become too whiny, my mother hits me. Kidding– but you have a big enough family and they don’t let you complain too long or past a certain point, so I’ve relied on them often to keep me in check. A good friend will do the same.

What I’ve learned so far is how easy it can be to start expecting things to go bad, because so many things go bad. But we do ourselves a disservice in becoming convinced the world has conspired against us and we’re doomed to draw the short end of the stick for the rest of our lives. The trouble with that kind of thinking, besides it having no intrinsic value, is that it assumes the rest of the world is riding the easy train to party-town, never confronting a hardship, enduring pain, or drawing their own crappy short sticks. No one has a monopoly on pain. It’s part of all our respective contracts here. So having the idea that your life is hard and everyone else is clueless and has it easy will only make your own pain worse by punctuating it with something that isn’t true, first. And second, that idea undermines the lives of others who do know pain good and well, but whose experience you are now denying, because you can’t see past your own. I cringe to consider how many times I’ve done this, being stuck in my own dark hole.

Pain can be blinding or clarifying, depending on how well it’s kept in check. It can be overwhelming in the moment but when held against the larger backdrop of our lives, it usually highlights what is good, it makes gratitude grow and can help you see with new eyes. If pain is held up only in its moment in the dark, and seen as punishment, bad luck, or some kind of payment you got stuck with and others are getting for free as though its some kind of tax, then you will pay continually, and your relief will be rare. Pain shouldn’t make us proud, it should show us humility. Acting well and grateful and good in the face of pain is what should make us proud.

Sometimes I think of my life from a birds eye view, looking at it plotted out on paper like a map, where I can trace with my finger through the course, beginning to end. When I get discouraged, I think that what I fear is living a life I can’t say that I’m proud of in the end, when I’m tracing my line and seeing how I behaved. I know what will make me proud is having loved fiercely, being steadfast, humble, trying, listening well, finding humor in every stupid day, and being grateful for the lucky life I was given, the family of love I was born into. In the meantime, it feels good to put your head down and work. Sometimes you endure the pain quietly, and know that you’ll be OK whether you tell someone about it or not. I think moderation plays a role, and a discernment in what is worth sharing and what will only exhaust us to speak about. In some way it comes down to self-awareness and restraint.

I’ll end with this passage I read in The Road to Character this morning, a book I’d highly recommend by David Brooks. The first quote is Brooks summarizing George Marshalls training at VMI, followed by a quote from Cicero, which Brooks used to explain the composed, revered manner of Marshall throughout his life.

“The whole object of VMI training was to teach Marshall how to exercise controlled power. The idea was that power exaggerates the dispositions–making a rude person ruder and controlling person more controlling. The higher you go in life, the fewer people there are to offer honest feedback or restrain your unpleasant traits. So it is best to learn those habits of self-restraint, including emotional self-restraint, at an early age…

That person then, whoever it may be, whose mind is quiet through consistency and self-control, who finds contentment in himself, who neither breaks down in adversity nor crumbles in fight, nor burns with any thirsty need nor dissolves into wild and futile excitement, that person in the wise one we are seeking, and that person is happy.” -Cicero

Health, Happiness, Restraint

P.S. This is dedicated to Varney Prejean, the eternal optimist in the face of pain and such a happy, loving, groovy person. If you’ve got an extra prayer, send one out for him. Hang tough Varn-dog, we’re rooting for you!

Apathy, Advocacy, Jumping In

I remember a conversation I had with my mom, roughly six years ago. It was not long after the Great Crash of 2011. I was slumped at a bar stool in my parents kitchen. I’d been crashed a while and not doing very well, physically or mentally. It was a grey, wet Winter, perfectly depressing, and I remember looking out our office window and thinking “I feel exactly like the weather.” I’d been caged up too long, among other side effects. Everything was a reminder of what I’d lost, what I believed the disease took. I knew I should be grateful I had somewhere to go, and I had people to take care of me at all. Not everyone has that, no doubt I was lucky. But I didn’t want help. That kind of surrender is never really easy, but when you’re in need, it’s really the only way to go. Resistance just ends up making you mean to the people who are trying to help you.

My mom was folding laundry, explaining to me the details of a promising new study going on, something involving the gut; I wouldn’t know because I was barely listening. She told me that I should follow the research and recommended I read a blog called Phoenix Rising, a veritable A-Z of everything MECFS. It might help me feel better if I at least understood more about the disease, on many levels.

But I could almost feel a visceral resistance to this idea. Ironically, I didn’t like reading books or blogs or stories about this disease. They only reinforced what I already knew, and they all ended the same—no one got better. I can remember holding back tears, angry tears I guess, that I didn’t want to read anything about this disease again unless it was an article touting that they found a cure.

They?

(Insert really awkward DC photo)

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So terrible.
6 years later, I found myself frozen in the doorway of room 129 in the Rayburn Building in Washington D.C. I was attending an event called “The Storm on Washington“–an event I felt a strong pull toward for a few months.

This room would be our “MECFS Command Center” throughout the long day–a place to commune in between meetings and rest, eat, talk, or collapse. (Really, there were beds) I hadn’t even entered and already I could feel the warmth of the room from so many bodies insides, at least 10 degrees hotter than the icy hallway. It was 9 am and a low, indecipherable murmur pervaded the room from multiple conversations–introductions and instructions and attempts to achieve order among a really huge, logistical effort. I stood there like a lost puppy, watching the quiet chaos unfold. I knew not one person. What the hell am I doing here?

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Meeting the MAN, Dr. Nahle
I was doing what I’d done many times before–jumping in without a clue. But I was among smart and determined people. The principal reason for being there was pretty easy anyway–to share my story, to try and humanize this disease and convey the experience with decision-makers. I’d told my story plenty of times before, I’d become pretty practiced.  That day 52 advocates would meet with over 70 congressional offices and representatives. A success in just making that happen, in my book.  (Thank you MEAction and SolveMECFS!)

It feels like there have been many beginnings to my entrance into the advocacy world. A place I never thought I’d enter, for reasons I’m still unsure of now. Bitterness maybe. Fear probably. I still feel like I’m hardly making a dent, but I am trying, finally. Bitterness, self-pity, doubt–all of those feelings depleted me, when I was already emptied of energy. They still come around. But finding small glimmers of faith that you might be where you’re supposed to be, even if the circumstances are crap, feel energizing. Any time I’ve come across hope, it’s like a flashlight turning on in a cave. It’s somehow always led me out, even if very slowly. But it usually means some kind of surrender; giving it a chance. I don’t write this as though finding purpose in a painful situation is easy. It’s not. Particularly chronic illness, which is long-term. It took a long time to figure out that I could still even have one, as I was. I still lose my way from time to time, and wait for a flashlight to flick on that I can follow.

I didn’t know when I published the petition last year that I was entering the world of they. Nor did I really know what I was doing then either, surprise surprise. I was following intuition and telling the truth, that’s it. But the same energy that brought me to DC encouraged me to write it. Call it the universe, or God, the collective unconscious, or soul–something outside the 5 senses was helping me out. I just sort of followed the scent.

Admittedly, I’m bad at campaigning. Gary Zukav says that when our soul and our intentions are lined up, the universe backs us in big ways. Maybe that’s what happened when it gained something like 20,000 signatures in a day. I was also lucky that my sister does know how to campaign, and my enormous family, circle of friends and other advocacy groups pitched in, all in huge ways, and now that petition has 42,000 signatures. When I wrote it I had my fingers crossed it would reach 1000.

Did 42,000 signatures fix the problem? No. But it did something else important. It connected me to so many people through the feedback page, where people can leave comments. People shared their personal stories, their loved ones stories, gratitude and words of encouragement. Total strangers said they’d pray for this effort. Every time I read one of those comments it made me want to work harder. It showed me how far-reaching and devastating this disease can be.

I thought had it bad? Talk about small potatoes. The petition did two things: 1. Showed me I could have it a lot worse, so easy on the self-pity, chief. 2. Stopped me from looking the other direction. Coincidentally, that’s exactly what we’re asking the government to stop doing now.

It was the petition that led me to connecting with an MECFS advocate online, who knew the D.C. Aide for Bill Cassidy, a Louisiana State Senator. I contacted him, which led me to a meeting with Cassidy’s number 2 guy and the Louisiana State Director, Brian McNabb. Meeting with McNabb for 2.5 hours, discussing everything MECFS was an incredible experience. Did it change anything? Maybe not. But it encouraged me big time. And in the end it scored me a meeting with Senator Cassidy. McNabb warned, it would be in between two events so it’d have to be quick, maybe 5 minutes. I said I’d take it.

So, I met Bill Cassidy in a parking lot on his walk to his car with a group of staffers surrounding us.

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Parking Lot Office
I had to talk fast as he was late to his next meeting and his assistant kept saying “Sir, you’re very late, we need to go.” I spat all the vital things out as fast as I could. Knowing I didn’t have long, I left him with a folder where I’d printed out 25 pages of peoples comments and stories that they’s shared on the petition page. Did he read them? I’ll never know. But he looked me in the eye, he shook my hand, and he told me out loud “I really care about this issue.” I told him thank you, I couldn’t express how much we needed people to care. He said he wanted to continue the conversation when he had more time. We were being herded like cattle to his waiting car. A cynic might say he probably says that to everyone, but it didn’t matter. Here was one more person who had now at least heard of this disease and the issues, and also had some decision making power. His assistant who had hurried us both while listening to our conversation, started to get in her car, but stopped, got out, and gave me a hug first. Good stuff.

Later, my uncle who is a mutual friend of Representative Steve Scalise, had seen my “Chronic Fatigue Syndrome Song” on the petition page–a mostly embarrassing but celebratory song I wrote after hitting 40,000 signatures. He thought it was pretty funny, and asked if I was interested in a sit down

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Obligatory Photo, Thanks Mr. Scalise
with Steve Scalise, a Louisiana Representative and the Majority Whip. Umm, yes. So not long ago, my Uncle Paul and political mentor, Rep Steve Scalise and I all sat down for a while to talk MECFS. He was another kind and engaged listener. He asked good questions and was generous with his time. I told him my story, I attempted to tell the story of MECFS among my hiccuping brain, and Paul helped me convey some things when my words turned to spaghetti mid-sentence.

Would this meeting solve it? No, but it was one more person who now at least knew of the disease. Someone with decision making power. Count it.

It was exactly one week after that meeting that Scalise and others were shot in a baseball field in the middle of the morning. What?! I am as clumsy with thoughts as I am words when it comes to events like that. It’s so hard to understand, it happens way too often, and I still feel far away from it somehow. As cliche as is, I’m praying and sending healthy thoughts his direction and the others injured that day. How this all plays out in history, we can’t know yet. Maybe someone is reading this in the year 2045, and it will all make sense.

Why am I writing this now? Because I need the reminder, which is very obvious but I want in words anyway, which is just to try. A reminder of how much happier I feel when I go for it, even when I don’t know what I’m doing. A reminder that writing 15 versions of this one stupid blog post over the course of a month is mostly a waste of time. Just jump in. It’s not always complicated. It will never be perfect, but it’s almost irresponsible not to try at this point, and to keep trying, over and over.

I continue to walk the thin line between fighting for a cause I whole-heartedly believe in, and surrendering to circumstance and the things I can’t control. I’m always learning , that a sick life can be a good life too–and I hope can still become a person I can say I’m proud of in the end. It’s easy to cross over too far one way or another, but if I stop trying, I’m a gonner. Sometimes I fail. There are many (funny) stories where I blow it. But it feels so much better to get out there and blow it, then to act like a bitter teenager on the sidelines, thinking pain was never a part of the deal. This is the reminder; try. You always feel better when you do, so do.

Health, Happiness, Tryin

Fuel to the Fire

It’s been so long since I’ve typed at a computer, I think my typing speed may have dropped to under 60 WPM. Dangit. I should probably quit writing everything by hand in notebooks, if I want the words to appear anywhere else but in a stack on my bookshelf, that is. Also my handwriting is pretty indecipherable so I guess it makes sense to stick to the computer. It’s just that writing by hand has always felt easier, more accessible and immediate. There’s something more rousing about putting actual pen to page. I hesitate less. My ‘thinking’ mind turns quieter, and the space that must open in order for the good writing to come through stays that way, without distraction. Especially when I’m scratching away with a really great pen. Right now it’s a black Pilot G-2 07. Sounds like a damned air o’plane, and I’d even describe it as a “smooth glider.”. So, I guess I’ll just be transcribing from page to machine for a while. I need an intern. Any takers? I will pay in doughnuts. Why is doughnuts spelled like that?

This last month has been filled with a few major milestones. Most of them aren’t mine, but in the absence of personal excitement, the achievements of those in my inner circle are close enough–plus it’s something to tell other people. Like someone will say Whats new Mary? And instead of saying Um, nothing. I say Not much, but my childhood best friend had a baby! See how that works?

My childhood best friend had a baby. For real! It’s still hard for me to wrap my head around it, not because she’s the first of my friends to start a family. But because we’ve just been friends for so long, since we were babies in fact. We still laugh at jokes from when we were five! Sometimes I feel so young around her–I guess the kid in me comes out. Now she has one! A beautiful, alert, amazing little daughter. It’s all very exciting. I’ve decided that I’d like her to call me “Ont Viv” (what Will called his aunt in the Fresh Prince of Bel-Aire) I find it fitting, and if she has half the sense of humor of her mom, she will appreciate the spirit of this name. Of course, just like a milestone birthday, this big thing happened, and yet it’s not that different. Kaitlin and I are still the laughing, weird, sister-friends we’ve always been, except now there is a tiny little girl sleeping in the corner while we talk. Funny how everything changes, but the middle stays the same. Welcome to the world Bernadette Jane! Love, Ont Viv.

My other best friend, Dr. Emils, got married a week later. I was a bridesmaid: score! A Southern girl and a guy from Amsterdam equaled a classic New Orleans wedding with a dash of Dutch. Nice. Two days of wedding festivities and a crawfish boil led up to the ceremony at sunset, on probably the best day of weather New Orleans has had all year. Everything was perfect and she made such a beaming, beautiful bride. It was a happy, lively experience to be a part of and filled with a lot of love. All topped off with a long second-line led by a classic Nola brass band singing all the greats, including When the Saints Go Marching In. Weddings are the best. No, New Orleans weddings are the best. If you ever get the chance, go! I’m really happy for my friend, mostly because I could tell how incredibly happy they were together.

I’m also the last single girl on the planet. Sweet.

Engaging in a two day wedding weekend is a rare chance for me to see old friends, to be around people my age, to have a reason to dress up–or get dressed at all, for that matter. It’s not often that I get to do things like this. Not often I get to be 32. My life consists of a lot of solitude, which I like, but it’s always nice to get a glimpse of life outside the farm. If anything I live more like a 90-year-old dog lady, so I try to soak up every moment of acting 32. It’s tricky too, because I know that participating in things like this are not without consequence. Acting my own age comes with a price tag, so every time I decide to do it, I’m making a silent agreement. No one really knows the gravity of decisions like this. Or what’s involved in just showing up, or how  I’ll pay for it all later. The choice is so much more encompassing than just deciding to attend a party. I swear I don’t write this out of some martyr, woe-is-me mentality. It just struck me as I was swiping through photos of the big day, which was a really fun day–that it makes perfect sense why so many people misunderstand the illness. They don’t know the weight and preparation and consequence of partaking in something normal, like being a bridesmaid in a wedding. How could they? All they see is this:

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I did.

They couldn’t know how much time and tedious planning went on beforehand, including scheduling when I would bathe, to ensure there’d be enough time for rest between that and the next event. They couldn’t feel the certain amount of pain you just have to bare through things like this. They don’t see the plethora of medicine necessary to endure standing and socializing and lasting through a night. And they’d probably never consider such things, like a bath, or socializing, as exertion in the first place–As something that counts against you in your fight to keep strain at an absolute minimum. And that is almost always the goal. It’s obnoxious even to me, as I write it now. The strange reality of living with this thing. The exhaustive necessities involved in even small things. You’re always calculating how much every little thing will cost you, always trying to save up if you’ve got somewhere to be. But what really struck me is that nobody sees what the pricetag actually looks like. That’s because the pricetag comes later. They don’t see the subsequent week or weeks of recovery that follows at home. Which can look a little like this…

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Poor Monty

When I thought about the outward appearance of illness, the timeline of how it plays out, what I show to people when I’m out and what goes on at home–I realized not only how easy it would be to get the wrong idea about the disease, but also how I might play a part in misrepresenting its reality.

For one thing, I want to emphasize that the reason I am able to even show up and participate in a wedding is because I’m currently at a functional-enough level to pull it off. There is a spectrum to the disease, there is waxing and waning, and there have certainly been times throughout the last 6 years when I wouldn’t have been able to stand at the alter. Even so, being “functional-enough” still means tedious logistical preparation, and a two-week long crash as a result. So, I’m still miles from where I once was, or should be. But many others are bound to their homes, many are bound to their beds, and we are all suffering with the same disease. I realize that people may see me when I’m in public and just not “buy” that I could be sick. And I see why this misperception persists.

But I also think that often we assign too much power to labels, and we attach our personal version or image of what “sick” should look like, and those who don’t fit the bill are either doubted, ignored, or assumed sick “in their heads.” We should all consider the many forms that ‘sick’ takes, and acknowledge that even terminally or chronically sick people don’t look sick at all times. No one would’ve guessed my dad had cancer, and that guy was dying! Looks are deceiving, and this immediate tendency to mistrust what we don’t immediately see or understand results in a basic lack of humanity. I am probably at my most functional that I’ve been since 2012, but I still walk a very fine line. It can and does go south easily, and it still requires help from my parents, a lot of rest and recovery time, a ton of medicine and doctors, and a lot of supine time on my own. (With Monty) And I am a lucky one, for sure. I know that people who suffer with anxiety/depression, bipolar disorder, OCD, Lyme, MS, Lupus and other chronic diseases suffer with similar outer doubt and confusion because their illnesses are not always easily seen from the outside. Labels, symbols, projections; they’re all powerful things, and they’re something we should consider and adjust on the whole before we make up our minds about something we may know zilch about.

I think I feel the need to write about this because ever since I entered the world of MECFS advocacy last year, I came face-to-face with just how poorly understood the disease is, how much misinformation/pure fallacy is out there and dominating the conversation, and how many people are getting it wrong because of the name alone. (Another thing I understand, it’s a stupid stupid stupid name.) I also have to consider whether I am helping to change and fix these misperceptions or if I’m at all contributing to them; and if I am, what I can do to fix it. I thought a lot about that after the wedding while looking through such beautiful pictures from the day, from the confines of my bed, knowing I wouldn’t leave home for a while. I didn’t think critically about this before last year, but I’ve learned up-close how much these things matter. The problem of disbelief is so much larger than gossip or personal dramas. This is literally public opinion shaping policy. It’s allowing the lack of intervention on a disease affecting millions of our own and many millions more around the world. How long will we allow people to suffer? How long will we let the accountable people look the other way? The world is looking at us and our treatment of this disease, and we are totally blowing it.

As soon as we show serious interest, I know other countries will follow suit. I know we will also make important new discoveries and possible cures. For now, we are at a stalemate that is costing millions of lives and billions of dollars. It’s almost hard to believe it’s true or possible after so long. And yet, here we are…

In the last year there has been awesome and much needed support from the public. The many signatures on the petition was surprising and still continues to humble me. I should say, it was that petition with such a substantial amount of sigantures that scored me the local news spot, a meeting with the Louisiana State Director (whom I spoke with for more than two hours about mecfs) and the reason I had a follow-up with our Senator Bill Cassidy. There’s more on the horizon. I’ll write more of that later. But our fight to be recognized, pursued and funded for biomedical research has come closer than ever in the past year, and we have to keep up the momentum. To quote my mom, “The timing could not be worse.” Hah, she is right. Politically things are somewhat of a shit-storm right now, and the potential for a slashed NIH budget on the whole obviously doesn’t work in our favor. But with the recent diagnosis of my sister, the possibility of backtracking our earned success, I have a renewed fire to fight and faith in myself, the advocates, the public, and the system, and an unrelenting hope that we can and will fix this. The timing might be terrible, and yet the truth is, there’s no better time for change than right now.

There are so many people in the advocacy arena who are doing big things–as for me I will continue to campaign for awareness in all ways I can think of, and restart petitioning for signatures. But I think possibly the most powerful voice is that of the public– not from those who are sick, but from those simply who see the injustice that’s happening. That’s who we need to hear more from, and seeing the amount of healthy people who have signed the petition already restores my faith in people all over the world will come together and make this happen. Thank you all again. Here’s to the next 40,000…

Health, Happiness, Fire

Let the Spider Live

When the phone rang I was in the kitchen, boiling a potful of spaghetti and whistling along with an FM broadcast of the overture to Rossini’s The Thieving Magpie, which has to be the perfect music for cooking pasta.

wind-up-bird-chronicleIs this not the most perfect first sentence for a novel you’ve ever read? It reads to me like poetry. It’s the first line from The Wind Up Bird Chronicle by Haruki Murikami, a novel I’ve been hypnotized by for over a month now. I finished it yesterday and I have that accomplished but sad void inside where the book used to live. It was a colossal novel and could have gone on for a thousand more pages, and I’d be happy to read them. The Wind Up Bird came after a similarly mesmerizing experience reading two of his other novels: A Wild Sheep Chase and Kafka of the Shore. I couldn’t say which I love the most–they’re all my favorite. Suffice it to say, Murikami is my favorite new author, and I’m a little late to the game. Luckily for me, he is a such a prolific writer with a large repertoire to choose from, and I just can’t see transitioning to a new authors work right now. I’m glued to his clean, composed writing, rock solid metaphors, and uncharted territory in terms of subject matter, truly. Read any one of the aforementioned and you’ll know what I mean. Transitioning to a new author now would be like shopping at Armani your whole life and then being thrust into a jam-packed Forever 21 store with flashing lights and blaring electronic house music. I just have to stick with him for now.

I can’t sleep again. It’s 4 am and I’ve been up and down all night. Actually it’s been more back and forth: bedroom kitchen, bedroom kitchen, microwave heat pad, kitchen bedroom. My bones are achy all over, the flu-type of aches, except that it’s explicitly in my bones and not muscles. Don’t ask how I know that for sure, but I do. There’s nerve pain, muscle pain, and bone pain. This time it’s the bones. When I rustle the sheets to get out of bed, Monty’s head jerks up to watch me, calculating whether he should get up to follow. But when I hold up the heat pack in my hands, he knows I’ll be back in one minute and thirty seconds, or something close to it. His heavy head plops down, he stretches all four legs and takes a deep breath, then drifts away. There’s something calming about Monty sleep on the edge of my bed, his belly rising and falling. It’s also nice knowing he’ll save me from my nightmares when I’m stuck in one and can’t wake myself up. I envy how perfectly in sync his body is with nature. The rhythms are so obvious. Always asleep by 10:00 pm, awake around 8 to go outside, and pawing at the pantry door at 6:30, ready for dinner. My body’s internal clock has been broken for years, so it’s nice to see one that actually works. I wonder what he’s dreaming of now. He’s chasing something fast because his legs are kicking away and he’s making small whines and growls. Probably a squirrel.

Sometimes I take insomnia as not a symptom or interruption, but a sign that I should probably just wake up. So here I am, here it is.

There is a large black spider that I noticed out of the corner of my eye when I was reading earlier.  In my peripheral I noticed something dark making those jagged, stop-go movements along the wall. By it’s jerky advance I figured it was a spider, but I was not expecting the huge size of the thing. The circumference a tad bigger than a mardi-gras debloon. It’s not long legs that get to me, but when they have a thick body- forgetaboutit. This one did, and every time I looked his way he stopped dead in his tracks. I tried to catch him anyway to let him outside, but to no avail, so we’re just hanging out I guess. He can’t make up his mind about staying or leaving my room, but when I intervene and herd him like a sheep in the direction of the door, he splits and goes the other way. Owell. I’ve become pretty desensitized to arachnids, insects and even vermin since moving back to “the farm.” We get a lot of Wolf Spiders here, which look exactly how they sound–frighteningly huge with thick hairy legs. They are abundant but not poisonous. Sometimes I see Monty pounce to a corner of the room and I know that’s what he’s after. For whatever reason, maybe it’s the statue of St. Francis in the garden, I feel the need to save every animal I come across in this house. Same goes for the pool. Sometimes this means taking a substantial amount of time just to save some critter, which I’d imagine many people would call a damned waste of time. And maybe they’d be right. But the mouse would beg to differ.

Once, I was trying to save a small frog in the pool who was being a real jerk about it. He kept jutting to opposite corners every time I went to swoop him up. Finally he was sucked into one of the skimmers on the side and I was able to scoop him out. When I looked in at all the other debris and leaves swirling around in the basket, I saw a large spider struggling to stick to the side. If I put the lid back on top he would obviously die in there. I squatted there in the sun watching a while, and it occurred to me Why the frog but not the spider? I reached in and scooped him out too. Ever since, I save all the animals around here that I’m able, and there are a lot and of every variety. Last summer it was a rather large blue skink–not easy. But I just can’t see where we should draw a line on who stays and who goes. I find it funny when I hear that bears or deer are “encroaching on our land!” Wasn’t it always their land, or just land where they hung out, until we decided to develop and build on it, driving them further and further out until there was no place left to go? I don’t mean to be some PETA extremist throwing paint on our growth. It just seems like the earth is a large enough place that we should be able to live in tandem with creatures who came far before we did without pushing them to the edge. “Population control” means lots of dead animals. And I understand the premise, the intention. I don’t know, maybe I’m too romantic and that’s a Utopia that just isn’t possible.

One morning while brushing my teeth, I kept hearing strange high pitched squeaks. At first I thought it was the AC unit or some indoor appliance. But then I saw Monty heard it too, and was sniffing all around with his tail and ears rigid and alert. He sniffed the ground until he got to the bathtub and stopped. I heard the squeaks again, and like a scene out of a Hitchcock movie, I slooowly peeled back the shower curtain, when suddenly a mouse squeaked and bolted, running for his life in circles around the tub. Like any civil woman, I shouted loudly and needlessly, while Monty tried to lunge inside the tub to capture it, I guess. Once I collected myself, pulled Monty away, I saw that it was just a baby mouse. We all came to a hault, and I could see his poor tiny heart thumping. Finally I found a gladware container, that’s basically all they’re used for at this house, slowly ushered him in and let him free outside. He quickly disappeared underneath the leaves and Monty sniffed at the spot for a while. I have so much uninterrupted time for these kinds of things, and I think that’s why they happen. If I were a busy woman late to work, maybe I’d have a husband and maybe he’d have killed the mouse and we’d have gone on with our lives. Funny how differently things can turn out.

Now I cannot see the spider, which I think is actually scarier than seeing the spider, because who knows? I keep jerking around suddenly when I feel an itch or some movement, but it’s mostly just my mind freaking me out. Hopefully he’s gone to the hallway bathroom–that’s where most of them end up.

Anyway, nights like these are not infrequent for me. I am often up at strange hours, and years ago I realized how sacred the night had become to my life. It felt like this whole other private world. No questions, no explanations and defenses, no phone. The walls come down, and a lot of ideas come to me then, sometimes annoyingly when I’m really tired, but they’re incessant and poke at me, so I keep a notebook next to the bed. After I write them down my mind settles. Sometimes they’re poems, dreams, letters, randomly long essays, and sometimes they’re just a one line sentence that is begging to be written. Recently they’re rhyming poems, which normally I hate. But strike when the irons hot, I guess. I think that most of my poems are crappy, but I find when I keep at a few of them for long enough, sometimes weeks– a little work everyday– I might end up with two or three stanzas that I would call decent bordering on good. I’m not sure, there’s really no way to gauge your own work.

You’re doing it again
You’re talking to yourself
I said that I wouldn’t
But there is no one else
Whom else could I speak
Without opening my mouth?

You’re wise enough to know now
there’s two of us inside
a sick one who is fading
and a strong one that won’t die
the reflection in the mirror
is a face, and not a mind
don’t let that pretty shadow you,
think that’s where to find
the one that wakes you from the dream
the one that comes out alive
one of us lives by numbers
one of us doesn’t tell time

There’s something you said,
And you weren’t wrong.
Things get weird
Alone too long

the question is
who’s writing this
the writer or the wrong

That’s a snidbit from my “No I’m Not Talking to Myself” series. Don’t worry, it’s not meant to be sad and I hope it doesn’t come off that way. But maybe it does, like I said, I need a teacher. I know they’re just basic rhymes and they lack some of the mystery and depth that great poetry contains. But I’ll keep at it and add the rest to my poetry page. Haters can leave comments there. It’s cool, I can take it.

I should try to sleep now. I’ve written way too much and I just transferred half of this post to a document on my computer that will probably never get read. My mind is so scattered lately, I have to get organized, but it’s been unusually hard. I guess I’ll start with sleep. That’s an OK place to start.

I’ll leave you with my favorite lines from The Wind Up Bird Chronicles. I can’t recommend Murakami enough, and I’ll write more on him next time. It has been a supernatural experience reading his books. Really.

“What gave money its true meaning was its dark-night namelessness, its breathtaking interchangeability.” 

“Once he got a taste of the world of mass media, though, you could almost see him licking his chops. He was good. If anything, he seemed more relaxed in front of the cameras than in the real world.” 

“..We never saw each other again. The relief this gave me bordered on ecstasy. Nothing so consumes a person as meaningless exertion.” 

“When your hair starts to thin, it must feel as if your life is being worn away..as if you’ve taken a giant step in the direction of death, the last Big Consumption.”

“Everything was intertwined, with the complexity of a three-dimensional puzzle- a puzzle in which truth was not necessarily fact and fact not necessarily true.” 

“I guess time doesn’t flow in order does it–A, B, C, D? It just sort of goes where it feels like going.”

Oh, I see the spider. He’s in the corner and positioned on his way out. Maybe I’ll save him in a glad-ware container tomorrow. For now I feel like I’m going to ralph. Good night.

Health, Happiness, Arachnisomnia

All I Want For Christmas is $100 Million Dollars

100 million dollars. I’ve never lived in a world where that figure represented an actual amount of money. I don’t think I’ve ever used it for anything more than hyperbolic effect in conversation. As in, Anthropologie is so expensive even a scarf there is like, 100 million dollars. I’m not even sure I could write out that number with confidence about how many zeros follow the number one. Unacquainted as I am, I’m learning to write and say it with total conviction, because now it does represent an actual amount of money, and I am seeking it with earnestness. Within the strange world of politics-meets-medicine, it’s no longer an absurd number. In this new context it’s become completely reasonable. In fact, some would say given the facts, it’s an exceptionally modest amount. Go figure.

As many of you are probably tired of reading about, I began a campaign earlier this year requesting that the NIH allocate this amount of funding toward the research of a mostly neglected, orphaned disease. Over the year, this has become the most important pursuit of my life. And I believe the cause to be one of the most important in anyones life: our health. Like many things, you don’t realize how important it is until you don’t have it anymore.  Stepping foot into the advocacy world provided me with a new, unexpected perspective–to see the community I’m a part of, from the outside in. This adjusted outlook has fueled my insistence for change to a degree I’ve never felt before. Interestingly enough, this outside viewpoint began within my own family, but not from my own experience with the disease.

I rarely talk or write about it, but my mom has lived with ME/CFS for two and a half decades. Most people with this disease will tell you there is a pre-sick version of themselves that couldn’t quite  survive once the illness took hold. I was only 2 when my mom became sick, so I don’t remember or know her as any other way than how she is. I’ve been reflecting on the reality that there is a whole side to her I’ve never really known. Prior to getting sick, she might better be described as a type-A personality. She was fast-moving, organized, sharp–an ER nurse. She and my dad had a large social circle and were both involved in the community and church. But no one would ever know about this past part of her, how could they? She left work tentatively to devote herself full-time to motherhood and raising four children under the age of five. In pictures she looks happy and privileged to be a mom and wife. In old videos she is lively and beaming, her voice animated, giggly at times.

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Real nice, Doug.

Christmas morning, 1984. 4:30 am. Grainy video footage taken mostly by my dad (a tech geek elated by new video recording technology) reveals this other side to my mom that many people besides me have never known. In the classic reddish-brown hue that tints all memorabilia from the 70‘s and the early 80’s, three kids under the age of five are glowing in wait in our sunken living room. The fourth kid, me, is five months old sitting in a car seat on the sofa. (Thanks guys) My siblings frantic excitement is palpable–the kind that only comes on Christmas from children who still believe. They remind me of shaken up cans of cola, overflowing with joy. In contrast my mom and dad aren’t entirely awake yet given the hour, and early video footage provides evidence of a boisterous Christmas Eve party late into the night before. They speak in soft tones of voices and have glazed over look on their faces. Despite the lack of sleep, my mom still looks beautiful in a long white robe, rubbing her eyes intermittently to try and pep up. The kids grow more intoxicated with each new gift, and both my parents take turns reacting to 3 individual shouts of “Look at my new toy! Look! Can you open this?” Crumpled up wrapping paper begins to litter the room like discarded wads of kleenex. Outside, it’s still dark.

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Toy assembly line, 4:45 am
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My brother Nick is crying because he can’t find his legos.

I love this footage for many reasons. For one thing, it captures such an iconic display of Christmas morning during such a happy time as if out of a Rockwell painting. You can sense the love between my parents, and observe childhood traits in my siblings that still exist today. Nick is methodical and organized with his unwrapping, and with everything. At one point my sister Amelie opens a gift and says “Wowwww!!!”as her eyes grow huge with excitement. When she shows it to my mom she laughs and says “Amelie, this is just the box.” My brother Doug still receives high-tech gadgets for Christmas and maintains the same enthusiasm. And me, I am still perfectly content to lie on the couch surrounded by my siblings–listen to them tell stories, laugh, bicker, cook, play games, and pine for my mothers attention. Even as a baby, I was comfortable and entertained just watching and listening to them live around me.

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Christmas Eve, 1984

The footage is also deeply nostalgic of course. It’s both wonderful and emotional to hear my dads voice again, to see him alive and in his element. Happy, goofy, making corny jokes. But it’s also a snapshot of the woman my mom was before she got sick. It’s not that this part of her is totally gone, but the illness simply changes your capacity for regular things, even socializing. As such you’re forced to make adjustments. She appears so spirited and vivid in these videos, so unweighed down. Maybe it’s because I so often see how the illness has effected my own appearance every time I look in the mirror, my posture, my facial expression even, that I can easily spot how it’s changed her physically, her whole body language, the inflections of her voice. Even sleepy and in the early hours of morning, there’s an underlying, unrestricted vigor in her–something that lies dormant now. There is a heaviness to this disease, like an invisible ton of bricks you carry with you at all times. Look hard enough and it’s not so hard to see.

My mom was never able to go back to ER nursing as planned. “I couldn’t trust my brain anymore” she says, and the stakes in that line of work were just too high. While she still calls so many people friends and loves them the same, her social life took an extremely hard hit. Given the insidious nature of this disease, I imagine it’s difficult for those who knew her before she was sick to adjust to this comparatively different, limited person–who by most accounts appears so much the same. As a result, relationships struggle to sustain the blow dealt by all the change, and to continuously explain the illness and your newfound incapabilities is exhausting, especially because you have such little energy to begin with. As a result, many people tire out and turn inward, ending up more like hermits or monks. My mom has always been strong and independent, never one to feel sorry for herself or even reach out for help, perhaps sometimes when she could use it. As much as she’s made the best of it and adapted to a less social life, I know a place in her aches not just for the friendships she had, but for the friend she was once capable of being. This is one of the hardest adjustments to the illness, particularly painful because it happens during a time when you need friends and support the most.

Since the birth of her second child, my sisters health has been steadily declining. For the past year and half she has slowly worsened with classic MECFS symptoms. Ruling out many other diseases that mimic this one, she will see a specialist soon for an official diagnosis. But many tests are showing the same abnormalities as those with ME. She is the same age that my mom was when she got sick.  Fortunately because we know now the best course of action, she has a better chance of recovery by addressing it early and aggressively. In March, she left her job tentatively to attend to her health full-time and attempt to get her symptoms under control. She has seen what pushing it has done to both my mom and me, and I don’t think any of us could stand it if it happened to her too. I know leaving her job was not easy for her. She loved her career as an interior designer, began a successful start-up firm with a partner and worked extremely hard. But as her symptoms became more frequent, more severe, longer and harder to recover from, she knew she had a decision to make: Cut her losses now or risk losing a lot more later on. She chose to act now, which was no doubt the right way to go, but I doubt that made the decision any easier on her.

For so long, my whole family, especially my sister and my mom have been my champions who carried me when I was weak and encouraged me when I felt hopeless. I’m so eternally grateful to them for all they’ve done and continue to do, and I’ve always wondered how I will ever repay them and my whole family for their kindness. I believe now it’s my turn to be their champions. Maybe this is my chance to finally return the favor.

I don’t have money to pay back the expenses, and I don’t have the strength to reimburse them by “working off” my debt. What I do have is a voice. A small platform. And a petition with 40,000 signatures. I’ve watched what this illness has done to my family. I’ve read the hundreds of heartbreaking stories that sick people have left on the petition page or emailed to me. I’ve become friends with Jamison Hill, the first person I’ve met who’s close to my age and has MECFS. He was a former personal trainer, and has now been bedridden since January of 2015. He lives in a dark room, able to tolerate exceptionally little light and sound; most days he is barely able to talk. Seeing this widespread devastation was upsetting but also opened my eyes to the urgency and dire need of this issue. It lit a fire within me that’s stronger and different than before. I think sometimes it’s easier to fight for other people than it is yourself.

My mom and sister never gave up on me, and so I promise that I won’t give up on this. It’s a black and white petition with a very specific ask. I won’t settle for the gray bureaucracy of political red-tape that is slow moving, inefficient and has failed this community for the last 30 years. I am hoping Santa, or the right senator, can bypass all that.

What an amazing Christmas it could be for millions of people with this disease around the world, to finally have real hope knowing that change is happening now, and the kind of research we’ve all been waiting on will finally be possible. It’s not a change that would normally happen quickly. And I don’t expect this fight to be easy or painless. But, it is Christmas. And even at 32, I still believe in something powerful around this time of year that makes anything possible. I know that this is, but it will require the right kind of help. Here’s hoping, for all of us, that we get it.

Health, Happiness, Believe

If you’d like to add your voice or help circulate the petition to more people, that would be amazing and please click here.

To donate to Jamison Hill’s medical fund click the link!

Yall Rock, Thank you to all.

Tension of the Opposites

I often forget that my life is somewhat unconventional– That it requires further explanation to obvious meet-and-greet questions. I forget that answering the typical questions that arise with meeting someone new or catching up with someone old will often start a domino conversation effect that can go any number of ways. Sometimes it’s unintentionally critical questions, sometimes it’s the strangest of medical advice, and other times it’s this awful but easy-to-spot look that no matter what words they’re saying, it’s only the word doubt that’s written all over their face. Of course they’re not all this way, and sometimes when I let down my guard and am honest about my circumstances, it opens the door to friendships and closeness I would never have expected. There’s something about sharing a hardship (without being overly needy) and being heard openly, that evokes a certain trust between two people. It says I have seen the darkness too, and the space between them lessens.

There’s a whole spectrum of reactions, and even though I forget temporarily, for the most part I’ve grown used to and so prepare myself for the array of conversational tones and and twists and turns our exchange may take. It took a while but by now I can usually see where things are going fairly quickly and attempt to steer a conversation going nowhere either back to the other persons life or to an entirely new subject altogether. It’s for the best. Outside of the new and complicated, sometimes awkward anecdotes that come with simply talking to a person, my life feels very normal. On a personal, day-to-day level, I’ve grown used to the terms by which I live, and it’s usually when I share these terms with someone else, my large set of footnotes, that I remember how not normal my situation is. I long for the day when I can complain about my jerk boss, commiserate about the insane landlord of my apartment, (which in my fantasy always has big windows) and when my roommates are no longer my parents. No offense to them–they no doubt long for that day, too.

Living life with a chronic illness means a few things for me: It means being 32 and not working a real job. It means taking 25ish pills a day and still living under my parents wing. It means a lot of solitude and a lot of talking to the dog–probably more than to humans. It means I typically smell like BenGay or peppermint oil, and wear an ice pack on my head almost always. These things have aligned themselves under my own heading of conventional. They are my normal. But I forget that they’re not and require an often long, boring story that explains “my normal” that I’ve grown to cringe whenever I have to tell it. Reciting how and why you arrived at here and now, over and over and over out loud, you almost start to feel like a phony. I don’t know what it is, except that maybe after so long of recounting a story, one that could easily be labeled as unfortunate, in such a casual tone of voice that’s inarguably bored with itself, you begin to question how it is that you’re happy. How it is that you consider such ridiculous conditions as if they were commonplace and acceptable. You start to wonder why you aren’t more up in arms about the whole thing.

I don’t know when it became such a frequent place to end up, but lately I always find myself hanging in the tension between two opposites, struggling to find the fragile balance in the middle. Feeling bide between two of anything is usually unsettling at best, but can often (for me) be exhaustive torture. The two forces aren’t necessarily always polar opposites. Sometimes they’re merely dissimilar, but operate on the same plane. Think surrender and giving up. Gone unchecked, one can quietly ooze into the other, and suddenly you’re nowhere you ever meant to be. Sometimes they’re contradictory forces: maybe your heart wants something that the head doesn’t like. Other times it’s reconciling two truths at odds, choosing between two options and stuck in the messy mud of the middle. Since I consider myself pathologically plagued by indecisiveness, I seem to find myself living in this “tension between two” all the time. It’s trickled its way down from me flailing between two important choices, to agonizing over things as inconsequential as toothpaste. I’ve spent way too many hours of my life struggling in that aisle.

Currently, I find myself in the center of multiple conundrums, questions, opportunities, examinations.. Not all of them are quantifiable, and many of them seem to be ongoing or recurring. I lay in bed at night and the questions fly around the room like some kind of adult mobile made of cosmic curiosities and pitiful choices. Here’s an example of the things my brain has been tangled up with lately:

*How do I surrender to my circumstances and accept my reality without giving up on trying to make things better?

*How do I talk about being sick without getting caught up in my story?

*How do I write bearing the reader in mind without compromising authenticity?

*How do I maintain a sense of autonomy and identity knowing full well I am reliant on the help of others.

*How do I engage in advocacy that is proactive and realistic without losing myself and my worth in every day outcomes?

How do I satisfy this sweet craving without overdosing on gummy vitamins?

Welcome to what Carl Jung called “The Tension Between the Opposites.”

Jung taught that if you can withstand the tension between two opposites, if you can sustain the angst of being suspended in the middle for longer than what is typically comfortable, often possibilities and solutions will arise you wouldn’t have considered before. It can be an enlightening experience, but not easy, and often painful while in the thick of it. The waiting is tough. But if you can hold that tension, you’ll usually encounter what he referred to as ‘The Transcendent Third’. This new ‘third’ solution can involve both or neither of the two pieces you’re between, but in the wait, you can reach deeper into consciousness, and often that’s where the wisest answers can be found. “There will be two opposite approaches for solving it. Neither solution will be correct, but must undergo the tension that will result in a third approach.”

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“There will be two opposite approaches to solving a problem. Neither will be correct, but must undergo the tension that will result in a third approach.”

The world is so fast now. We rarely take the time to be still, to even allow a silence, mistaking it for boredom, or a space that must be filled. If you’d like to experience the discovery of the Transcendent Third, you have to answer the question that Lao Tzu posed on the matter: Do you have the patience to wait until your mud settles? I’d say most of us don’t. Or we do but fail to realize it, living among a pace that’s fast and noisy and nearly impossible to keep up with.

Lately I’ve given a lot of thought to the concept of surrender; something I continue to learn and accept almost every day it seems. Among everything that being sick has taught me, surrender seems to stand out the most. Difficult beyond words, but once allowed in, it can feel like you’ve been given a glimpse of the divine. It can be a beautiful thing, but for me, learning it didn’t come easily. Or all at once.

For years before 2011, my body spoke to me in a language called pain. Fatigue. It said slow down, stop, you’re not getting any better. And for years I downplayed, dismissed, and sometimes outright denied to myself that there was a real problem. As things were falling apart inside, I strived to hang on to all the attachments that the illness slowly started to take.  I thought as long as I could keep my job, it lessened somehow the reality of having a disease. It diminished it to an anecdote. I had it, but it didn’t have me. As such, surrender came in pieces. Determined as I was, I couldn’t bare the tension of working, being sick and trying to get better. Convincing myself I could multi-task, I was actually just failing at three at once. Hah. Something had to give. I

will never forget that conversation in Andrews office, me holding back the tears as best as I could, saying I didn’t want to go. I had done my best, but my body just couldn’t take it anymore. Neither of us wanted me to worsen. We hugged and said that thing people say even when they know it’s not true. “I’ll see you again soon!”  Don’t worry, I told him. But he did look worried, something in his eyes. I punched my time card for the last time–yes the 100-year-old gallery still used time cards. On that drive home across the bridge to my parents house, I cried the whole way. I felt more lost and afraid than I ever had.

That was the end and the beginning. The next two years would be the hardest–the most brutal on every level. I resisted. Lied to myself. Conceived of ways I could return to the path I was on before getting sick. It felt like someone had sat on the remote control of my life and accidentally pressed the pause button. There was an incessant feeling that wherever I was, there was somewhere else I should be. Not this. Not here. I was sick when I should be well. In California when I should be home. At home on a weekday when I should be at work. I never had an inkling that Yep, this is right where I’m supposed to be. I thought if only I could survive this “wrinkle in time” I could resume the life I’d had before. Just like that. As if time moved in any direction but forward.

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Bye Old Life

I’ve had six years to adapt to the life I would feel proud to call my own again, but it certainly wasn’t  the one designed by my hand. I think the final straw that led to surrender was simply a matter of being too tired to fight. Somewhere after year 2, I let go of the last of my life plans–fed them into a shredder and watched as little paper ribbons emerged. Surrender. One part complete fear, one part total release. In hindsight it’s clear that the fear was mostly ego-driven. If I wasn’t designing my own outcomes, who or what was? And by the way, who could know the path I should take better than me? (Laughable now)  But the release had one up on the fear. It meant making room for the life that was waiting for me to finally begin. In fact I was the hindrance. I was the one sitting on the remote.

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My Life: Mid Rise Skinnies

After six years in the game, my life doesn’t feel foreign or as though it should be another way. It feels more like a perfectly worn-in pair of jeans. The ones where the denim is at that awesome level of soft and is tight and skinny in all the right places. I think jeans are one of the most personable clothing items. Have you ever tried someone else’s jeans on before? It feels like trying on clown pants. In the beginning, that’s what being home on a Tuesday at 2 pm felt like. Now that’s just business as usual.

I now struggle with the idea that if I surrender too much, if the circumstances of my life simply feel normal, I’ll become complacent. I’ll forget that it shouldn’t be this way. I’m not supposed to be sick all the time and spend vacations half conscious on the couch. But it’s become the norm. I don’t want to become so desensitized that a bookshelf filled entirely of my prescription bottles doesn’t shock me at all. And I don’t want to lose the fire in me to change the things we need to change, as a community that fought long and hard before I ever came around. I want to embrace and be happy where I am, but I want to be proactive. And so I’m trying to find the balance between enjoying the present while also remembering that there’s an injustice at play here, something that needs fixing. And I know that I have to try and help fix it.

I could easily be the one too sick to fight, just like millions of others with MECFS are, but I’d have no doubt that the warriors in the community would continue to work until it’s done. The baton might change hands but the balance remains. And just because I’ve tapped into joy and surrender and gratitude where I am, doesn’t change the fact that I am part of a community, one that has fought for this cause for decades. I owe it to them to do what I can. I am constantly seeking a way to advocate for what I know is right, but remain distant enough that my ego doesn’t get drawn in to the wrong efforts. It happens all too easily.

A very strange thing that might be hard to believe– I don’t actually love talking about being sick. Gasp. And I feel that I’m kind of terrible at the whole advocacy thing. Luckily online my awkwardness doesn’t shine through as much, but it’s still a struggle for me to solicit people to help, even though I believe 101% in the cause and am certain I’ll continue petitioning and fighting for it until the deed is done. But how can that be?How can it be true that I don’t like talking about being sick and yet I have an entire blog devoted to very subject: “Life through the sick lens”?

I’ve toyed a lot with these opposing truths and tried to understand how I could want both. And I think the answer is somewhere near this: By speaking honestly about the experience, particularly the chronic illness experience, which I found to be largely misunderstood, and by foregoing the typical polite response or social etiquette and supplementing it instead with what is true, I open up a space for us to move closer together instead of further apart. By writing about a topic that can be very isolating, I’m attempting to give people a chance to understand, instead of blindsiding them with “Well I live in mismatched pjs and I haven’t showered for a week because I’m too weak to shampoo my own hair and oh, you’ll never understand!” (Runs out of coffee shop. Trips. Continues running.)

Contrary to what I hear people say all the time, the world is actually full of good people, and most of them aren’t trying to hurt you. 99% of the ones I know are exceptional, and they are sympathetic and helpful about my situation when given the chance to be. But you have to be willing to reach out, which means you have to expose a need, and sometimes that’s the hardest part of all. I only know if I keep too tight a lid on my own unusual experience, hellbent that the world will just never get it, I will most likely be right, but it won’t be the worlds fault.

So, life continues, seeking out the peace in the middle. Waiting patiently for the right answer to arise in so many scenarios. And holding the tension between opposites long enough to tap into something deeper and wiser than I ever could be. It’s not the easiest thing, but it sure beats pulling my hair out between Crest Multi Care and Colgate Total at midnight in Walgreens. The point is to be still and patient, wait for the mud to settle, and allow enough time for my own transcendent third to arise.

Health, Happiness, Settling Mud

The Chronic Fatigue Syndrome Song. Hot Off the Street.

Since I have a large amount of free time, I started writing a song about ME/CFS. I called it “The Myalgic Encephalomyelitis But For Our Purposes the Chronic Fatigue Syndrome Song.” Slides right off the tongue right? I told myself if we hit 40,000 signatures, I’d post the song and lighten things up a bit. There’s not much humor in chronic disease talk or advocacy, but I think we could all use some. So, 40,000 signatures later..here we are. A few things.

But first, sign the danged petition. Did you sign it? Just sign it. Did you? Click on the link and type your name. Did you do that? OK, well then do it now. I’ll wait. Sign it. You’ve signed it now? Great! I don’t have to keep saying it? I’ll stop. Cool. OK but so just to be clear you signed it right?  Thank you. I love you. https://www.change.org/p/increase-research-funding-for-me-cfs

1. I don’t claim to know how to play guitar. I learned six chords on it a few years ago and can fumble through a few songs, most of them by Taylor Swift as her songs consist of the same four chords. I love it. Anyway this is why my song is only two chords. Sorry.

2. Monty makes some background noise now and then that I was too tired to edit out. He was chewing on some toy the whole time I played. Then in the middle of verse 3 decides he wants to play tug of war. He’s never had great timing, and we’re working on that.

3. This is more of a philosophical thought in general that I had while writing the song–maybe all diseases should come with their own jingle? That way tragic news might be a tad easier to take. Like “hey hey hey, you’ve got cancer in you brain!” Or “Looks like you’ve got a case of GOUT, hey! But we can fix that, no DOUBT, hey!” More creative lyrically, but you get the idea.

4. I’m sure someone will comment that I don’t look sick. Understandable, and truthfully I have improved from how I was last November when it was challenging just to walk. But looks are deceiving and they call this disease invisible for a reason. All those pill bottles behind me are my own, that I’ve been haphazardly saving for the last 9 months or so. I’m wearing my pajamas but threw on a bra and some lipstick– you know, to be professional.

5. This song is for anyone who is sick, including those with chronic illness, and especially ME/CFS. I hope it makes you laugh or smile, because I know that being sick is a weight you carry around all the time, and it’s heavy and intense to deal with daily. Sometimes you just have to step back and laugh. So let’s have some fun.

But make no mistake, this took work and has a specific goal. Rhyming with adrenal insufficiency is no easy task!  I crashed week after week just trying to record it (I know, and it’s still poor quality) but I wanted it to be decent enough to make the rounds, maybe inform some people, make others laugh, and perhaps land on the desk of someone who can help us. You never know if you never try. I’m ready to fight for this as long as it takes, sick or well. So until we get the adequate funding, prepare for more creative/ridiculous forms of advocacy, and please help spread the word. Yall have been a huge help, keep it goin! Thanks again, and enjoy :)

Health, Happiness, and Disease Jingles