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 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

Brain Not Work So Good

I feel this modern artwork both describes what it feels like in my brain recently and also represents the clustershit that my writing has been. At least spaghetti brain can look pretty. The writing is a mess.

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I say the as if it’s someone else’s. My writing. Me. I’m doing that thing where I start out simple, on course, paving a promising path toward something that makes me think but that I can also wrap up and understand in the end. There’s never a lull for words or ideas. They pour out–I have a lot of time to think them up. When I’m not writing them in my notebook or typing them on my phone I’m usually just thinking of nice sentences in my head. I’m mind-writing. Just watching sentences fall into place mentally, perfectly, and I actually feel relief when these sentences are formed. The kind of relief you feel when you  get in your car the first time after you’ve cleaned it, and it was dirty for a long time before. It happened on the way home from the pharmacy yesterday. Sadly, I remember the relief more than the sentences or ideas. I tell myself I’ll remember this later, but I hardly ever do. On rare and momentous occasions, if I just sit down and start to work it will pop out like a wine cork. Ah! There it is. But I hesitate to think how much has gone un written because I wasn’t near a pen or a computer, or that I actually was but just didn’t put the effort into getting it down. Owell. That’s kind of a self-important thought. And, I guess we have to assume the work we never made, lost now somewhere between sleep and consciousness, was probably crap.

The words pour out not because I’m FULL of words and ideas, but because I have no requirements. Few expectations, no deadlines. No assigned topics. And no financial incentive. It’s just a hobby that I treat like a job.  Except that I’d be fired by now and there’s no 401K. Maybe I have too much freedom, so the meandering and circling is just too easy to do. I struggle because it starts off clean, on track with a promising topic and flows naturally in one direction. Then somehow it turns into the literary version of a flying cockroach, darting around clumsily in different directions and you don’t know where it’s gonna land next and you know when it gets killed it will make a crunchy sound. Sorry scratch the last part. I don’t know what it is. I like the words and concepts emerging,they’re just not always in order. Or they’re crap.

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Me Writing Crap

I know this will sound incredulous to some, but when I’m in a crash my brain starts to stutter and cloud way more than usual. In the past I’ve mostly been able to avoid the cognitive effects at least when it came to my writing. But I’ve been working on this post since Thursday. I know I know, easy to blame shortcomings on the illness. But the only reason I feel it is effecting me this time is because that reading stutter returned on Friday too, having to reread sentences over and over, and then just not remembering an entire page and having to start over. Luckily I rested mostly on the couch while Monty quivered near me at the sound of America’s birth, and two friends brought me food! It was nice. Yesterday I was more clear headed reading wise, and able to finish my latest read, The Invention of Wings, which was really great. There’s a lot of good little nuggets in there. And I was surprised and inspired to learn in the authors note, the two main characters were real–born into money and a large plantation in South Carolina around 1830. They would eventually became devout abolitionists and publicly denounce slavery and fight for its end, sharing the cruelty they’d witnessed with their families own slaves publicly, and the world didn’t quite know what to do with them. I enjoy characters like that. It was enthralling and I recommend it.  I need a book club.I just feel like I’d never show up after the first meeting. Anyway my mom says she’ll read it so that’s cool.

Where were we? My writing going in circles, right. I wrote for three hours on Thursday and three hours on Friday and collapsed like a whale on to my couch after both “sessions” and sortof spent the weekend that way. Yesterday when I revisited the words,  I realized I’d written over 4,000 of them, and some made sense and others were in the wrong places and would just require a re-organization of things. But I don’t think my brain can handle it right now. I’m leaning towards spaghetti brain. Noooo. Here, I’ll find another pretty picture.

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Nice, no? That Jaime Rovenstein is really good at creating non-crap. Check out more on her website.

Also, I think this is why agents exist. Why good writers have agents. Proofreading! There’s a word I haven’t heard since college. Maybe that’s what this blog is, one long proof-reading session and one day it will turn into something else that actually pays dollars and cents and I can get an agent or whatever. Or maybe I just need a small person to stand beside me and ring a bell when I’ve written and rambled more than 10 minutes. Now I’m doing that thing where I write about writing. So dumb. I should just write and post. I’m too cautious. I just want it right and I know when it’s not. DING, the bell rings.

I’m going to condense and summarize the absurd amount of words resting on a white page behind this screen. Because I Believe in Brevity!! That sounds like something..a campaign slogan? Specificity is important too. I accomplished neither, so I’m just going to sum it all up. OK. It starts with this sentence.

“I think the time for a typewriter has come.”

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How fun is this dudes art? Check him out.

 

Simple enough right? Then it drops off the edge. I find myself wondering if technology is aiding or prohibiting these things–writing, art, creativity and whatnot. Which somehow brings up the woes of scanning Facebook in the middle of the afternoon, and what those photos are actually capturing. I ask what it is about these photos that leaves me and others sad and yearning as we keep scrolling. (Authenticity, I think is the answer) Then I compare Facebook photos with those JC Penny photos a lot of us took in the 90’s, (dudes, the hair)  and explore physical momentos verses digital ones. Is my generation more or less authentic than the last one? Next I defend Millenials after continual insistence and wagging of the finger I encounter that says Millenials are all lazy, don’t know the value of hard work, we were given too much, have no accountability, and don’t appreciate what we have. This article is a great example which went viral a while ago and a few people posted it on Facebook like “Oh my God, so true.” Uhh, agree to disagree I guess. I agree that your point is false. Then, I deliver a personal conviction that it may not look like it, but I think as humans we actually are progressing, despite a lot of people my parents age saying the world is going to hell in a handbasket. I wonder if their parents said that too. And their parents parents. The fact is we’re still living among the good and evil that has always existed, which leads me to an exploration of that provocatively awesome question David Foster Wallace asked, which is, If we have all the things our parents never had and more, why aren’t we happy?

Let that simmer.

Then I wonder if is this a theme that has repeated itself throughout every generation. Always thinking the next one would surely have it easier. Each one working hard so the  generations after them might have what they never had, and do things they never did, and avoid the hardships that they had to endure. Maybe it’s hard to see that the world is still what it is, and human beings are still who they are, imperfect, after you’ve worked so hard to make it better. Especially if you worked your whole life to do it.

Maybe our notion of happy is off. Or maybe it’s not about happiness. It’s moving forward.

Then the neighbors fireworks got really loud and Monty was quivering below the desk and the writing turned weirdly patriotic. Fast forward from notions of happy and the formulas that work or don’t work, and also the American Dream. Achieving what we’ve historically called the American Dream does not mean achieving happiness. It means achievement. The happiness part is on us. The Dream is living in a country where we’re free to pursue that happiness pretty much any way we want. And I know it’s cheesy, but when you compare this country and our opportunities and freedoms compared to so many other places, we are danged lucky to be born into this one, with autonomy, opportunity and Chronic Fatigue Syndrome! Kidding. I think I have a very good life. I think a lot of people have very good lives and don’t even see it. Anyway this is the part of America that I’ll always be grateful for and humbled by, knowing the generations before me and the blood and sweat and tears that went into creating it, and I guess our job is to make their work and sacrifices worth it. I’m trying! I can’t say whether we’re a happier generation, I don’t know. But I think maybe the more important question is, Are we a more conscious generation? And to that I say, yes.

Now lets go blow stuff up.

Health, Happiness, Happy 6th of July

What Makes An Illness Invisible? I do I do!

There is a certain hesitation that comes with being sick with a disease they refer to as “invisible.” Who are they? And why do they call it invisible? The they is simple; it’s not so much a reference as it is a perspective. People and doctors don’t tell us our ailment is invisible. They simply don’t see it. And when you’re sick, especially for a long period of time, you become keenly intuitive about who sees it and  who doesn’t. With someone who does, a certain ease settles in, as though you could wink at one another and understand it completely, even if you’d met minutes ago. Your guard goes down. Shoulders relax. That apologetic tone leaves from your voice. Those who don’t see it, or don’t fully “accept” it, and it makes sense that some wouldn’t, by the way, given this disease is not visible and is rife with evidence that it’s psychiatric or something else, we can sense that just as quickly. There’s an immediate undertone of tension, it makes my cheeks hurt while talking, the way eating a lemon does. I can feel my defenses go up. No matter how strong I’ve become at sloughing it off, doubt or judgment, it still stings. ‘Rubs salt on the wound’ as they say.  It makes me want to explain everything, from the start, “No wait, if you just listen to how it all went down, if you knew how I was before this, what it’s like most days…” but it’s useless. For them but more importantly for me. For us. I have to cease needing the validation from others and just trust my inner self. ‘Choose your battles wisely’ they say. Turns out they say a lot don’t they.

I think about The Truth, the eternal one that we’ve gotten wrong so many times, absolutely certain with documentation and everything that we were right and that was that. And yet the world remained round and the sun chilled with black sunnies on in the middle of the earth revolving like dude, yall are way off. The truth has never required us to imagesbelieve in it in order for it to remain, and that often brings me comfort. It’s my ego that seeks the validation. Still, I’d call it’s pretty reasonable that you’d rather not be seen as crazy or a malingering pansy particularly in a vulnerable time of your life when you’re sick and need support. But this is another “invisibility factor” of the illness. And it matters because not being believed is a psychological kick in the brain. Or face. And that’s just it. We don’t look the part on the outside. People can’t see pain. Or a headache. Full body weakness. Mental spaghetti. Vertigo. The hit-by-the-truck feeling. Yada yada yada. All there is for “outsiders” is our word, and some take us up on it, others don’t. I’ve been surprised observing the fluctuation of strength in my own word, depending on who it’s being exchanged with. I’ve been struck that a doubter could make me doubt myself.

Besides not seeing it “on” us, most doctors aren’t going to see it “in” us either. Invisibility factor number 2. We’ll give gallons of blood and urine samples and get x-rays and MRI’s and whatever other procedures they can think of that insurance doesn’t really wanna pay for :). They may find little things, but for the most part it will all come back normal. Yaaay! Normal. But let me intervene quickly that the American medical term for “normal” is a bit flawed if you read how the numbers are configured, but that’s another issue. But the point is: invisible. Again. Even in our blood and our brains and our tickers! Sometimes they find little things off here and there, but in no way would consider this a part of ME/CFS, they’re all isolated symptoms. And so there you are either in an ER bed or sitting on the crinkly white paper of a doctors’ office being told you’re in fine health and that this is good news. But it’s also important to point out here, often these tests are ‘normal’ because most doctors aren’t trained on what to look for in regards to this illness. This isn’t taught in most med schools. There’s no standard diagnostic test yet which make makes things harder. Invisibility Factor Number 3: no research. The things a specialist test for are far more in-depth (and expensive) than a regular doctors work up: like NK cells, cytokines, CMV, HHV6 and many more. Right now, due to the lack of these specialists, it’s basically like having cancer and visiting the foot doctor. Welp, everything looks great to me! 

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I mean this is just a great picture

Still, a large man in a white coat, his degrees framed behind him, scanning through your labs and telling you you’re fine, to get outside, drink more water and eat more protein, (my experience) well, it encourages doubt. Even though I knew otherwise. I know what I feel inside, and it does not align with what I’m being told. And yet, when someone challenges your thinking, someone bigger and smarter and who you’re supposed to trust, you can’t help but consider that they might be right–thus, you might be crazy. Woohoo! But it’s important to recognize the reality of the situation right now, and also that this it’s changing. More doctors are being educated about the illness and presumably in the next ten years, you won’t have to travel to other states in order to find one who knows more than you about it. Not to mention, doctors make mistakes. They are humans after all, and they don’t know it all. So often after a bad experience with a doctor, or anyone for that matter, I have to remember, (or my mom has to remind me) that this is vastly misunderstood right now, and people aren’t acting out of malice but from misunderstanding. That lack of understanding is just beginning to change. Slowly. And you know what? I think the petition may end up helping with that. That’s my hope, anyway.

A friend of my mine asked a while back “Have you ever considered that they might be right, that this might be more of a psychological thing, and you could actually be cured by pacing your exercise and receiving cognitive behavioral therapy? Or do you feel totally positive that it’s a physical disease?” This is all under the umbrella that I fully accept and believe that mind and body are connected and the health of the mind is intrinsically tied to the health of the body. Still, this topic is not being brought up so much in the same way with other diseases. The intention is different. I admit didn’t know exactly how to answer. I felt like “techinically” the right answer was, yes, they might be right and this might have a major psychological component that could be an intrinsic part of it and a part of curing it. I should have to consider that these psychiatrists might be right. But I couldn’t do it. Even though I have looked at myself in the mirror and asked that question, considered this  many times Could I be crazy? Could this all be a front, could I be a mildly insane hypochondriac? Or could this all be ignited by something psychological from my childhood that I never worked out?” These doubts have run through my mind more than a few times. But in that moment, despite by own past consideration of other possibilities, I truly felt like a monkey being asked, Are you open to the idea that the others might be right, and you might be a giraffe? I answered in solid faith even though I felt myself nervous to do it. “No, I’m sure that’s not the answer to this.” I was in that moment, a total  monkey.

I am an indecisive, uncertain person by nature. It takes me twenty minutes to pick out what to wear, including pajamas. (Ahem, that’s what I wear)  I doubt and question myself a lot. I feel like I’m still learning how to be who I am. But, I’ve had twenty years of this invisible illness and gone through the ringer of its effects, felt deeply the losses it has caused. I’ve watched what it does to my mom, who I trust. I’ve read the stories and comments of thousands of others with experiences uncannily similar to mine. High functioning, happy people, (SANE PEOPLE) who had a rug swiped out from under them and were never the same. I think of the extremely current research and that of the last five years. I think of Lauren Hillenbrand. Of Whitney Dafoe. Of my doctor, Nancy Klimas. And I just can’t imagine at this point, that all of this comes back to some psychological trauma that just needs to be worked out with behavioral therapy and physical conditioning. This is what is being touted as a legit cure in many countries, including ours, but particularly England, Australia and a lot of Europe. This illness can be triggered by a psychologically traumatic event, but this only points to another pathway in which, whatever this disease is categorically, (presumably a virus that takes advantage of a vulnerable immune system) that it has varying opportunities in which to intervene. This doesn’t make it a mental illness. And even if it were, it still doesn’t justify the way it’s been treated up to now.

I wish I could say that I’ve never doubted myself or the disease again. But I have moments where I do question myself. But I think that’s normal. Enough people question your your point of view, inevitably you’ll question it yourself. I know that there are many more invisible diseases besides M.E., and that a lot of people have felt isolated by the facade it produces. I hope if they’re reading they know they’re not alone, and they’re not crazy. They’re just sick, with whatever: ME/CFS, Depression, Fibromyalgia, Arthritis, Lupus. I have moments where I forget what it’s capable of and crash myself for days. My mom always tells me, don’t play ball with this disease, it will always win. That’s typically how I’m reminded of reality when I doubt it– the state of my own body. It’s hard to doubt your own illness when you’re struggling to walk. And if that somehow isn’t enough, I close my eyes and go back to my inner, inner self, where the truth lives in stillness, without interruption. Where the world is flat. Where the earth orbits the sun. Where an invisible disease simply hasn’t found the cause or cure, but one day soon will be seen, will be believed, but most importantly, will be cured.

Health, Happiness, (In)Visible

P.S. The petition is still live and running! The new goal is to get to 50,000 signatures before I formally present it to Collins and Burwell which should be in July. I promise this is the last high goal. We stop at 50. And if we get there, I will sing a song on camera that I wrote called “Chronic Fatigue Syndrome and Other Associated Conditions” and post it to the blog. It’s two chords, and worth seeing. Mostly to watch me make a completely humiliating knucklehead out of myself. So sign!   Good night.

Breaking News

(Not Really)

Toward the end of this winter, I sat in a bathtub, tears coming down my face, and prayed for change. Things had been stationary and repetitive for too long. All my parts, body and mind, were beginning to go stir-crazy, and I’d given it a solid go. I think in modern times, being confined to the same two rooms for long periods of time without real socialization and not going totally insane is a kind of victory on its own. Things went from stationary to stagnant, and I’m pretty diligent about avoiding that disposition. Undoubtedly, it started to wear on me. I closed my eyes and envisioned the “path” of my life like a black dotted line on a treasure map–obviously th line had been very straight for a while. But I visualized that in the spring the dotted line would take a sharp turn, still progressing, still moving in the right direction or whatever, but that there would be a marked change. It would stir things up, it would springboard the stagnancy of sickness and the same two rooms and same faces at the pharmacy and pop them into the air like popcorn. I wanted an interruption I guess. And I felt tired waiting for one.

The thing about change, I was beginning to realize, is that it has a lot to do with you (me) and less to do with crossing your fingers and waiting around for it. I admit, for a long time in terms of the illness, I did that in a certain capacity. I’ve hoped and prayed for a cure ever since I became sick, but I was never involved or deeply curious in the process of how that could happen. I wasn’t a part of online support groups for ME/CFS. I was never really involved with advocacy, and I didn’t follow the latest research or science. Sometimes people would send me articles from The New York Times or some Magazine that would tell the story of someone sick, usually summarize the history of CFS mostly on the surface, and then reveal the prognosis, which was that there was still no cure and no approved treatments. Once, I was sent a New York Times article called “Chronic Fatigue Syndrome No Longer Seen As ‘Yuppie Flu’” You’d think in some way, a major and respected newspaper validating your disease would be a comfort, but to someone who’s been suffering for years from it, it was more like Yeah, no shit. It’d be like seeing an article titled “Water Found to be Necessary for Survival.” My mom, who follows every study, reads up on trials and new findings, would update me often in an optimistic tone. But I can remember, in the first year after the crash that I’d stopped working and was living in their house, I felt angry and remember telling her I didn’t want to know about any more studies until there was one that found the cure. I was clearly still in the “acceptance” phase of this whole thing, and that was a prissy reaction to say the least, but I just never wanted to get pulled too far into the “community” of the illness. I felt if I entered in too far, which would be easy to do, it’d take me over, consume my identity. And I battle myself a lot in avoiding that transition–I don’t want to turn into the ‘sick girl.’  There are just so many other things I want to do and express, and sometimes the illness feels like it controls too much of my outer life, after already having control of my insides. It’s a strange, duplicitous struggle to face. And some days I feel like the illness wins–not in terms of my body, but my mind. That’s what I try to avoid.

Last week, a news crew was at my house. I say crew, but it was really just two people. An interviewer and a cameraman from Fox8 News New Orleans. It’s funny how it all came to happen, but stars aligned in certain ways, and now news-anchor Rob Masson was interviewing me in our living room. We talked about the petition, about getting sick with this weird, elusive, invisible, strange disease. He was a great interviewer and he understood the illness well. You can tell when someone gets it by the questions they ask. For instance, a person who doesn’t get it asks questions like “Do you think if you did more during the day, you might sleep better at night?” And a more intuitive person might ask “So how do you prepare for an event you know is coming up? And how long do you pay for it physically?” Rob and I had talked already on the phone about the disease, the NIH, the history and the campaign for nearly an hour a week before. Then the day of the interview they ended up staying two and a half hours at our house. (It will probably be a two minute spot) They spoke with me, my mom, and shot footage of Monty, of course. . Normally, the idea of “being on the news” even local news, would stress me out. Mainly because internally I’d think “Why do I have any business being on the news? I’m just a sick person living with my parents?!” But the reassuring and truthful answer was that this really wasn’t about me. I’m an example of one among millions of people living with the disease, and I felt I could speak up for it in that way, provide an example of what it “looks like”–which is nothing. You couldn’t pick a person with ME out of a crowd, but it’d probably be the one lying down using some odd piece of furniture as as a bed. I was/am exceedingly grateful this petition made the news, mostly because I think any press that shows what this disease looks like and is told from the angle of someone who is actually sick, not a psychiatrist speculating about it, is always a good thing.

Anchorman_140Pyxurz
(Not Rob Masson)

But the real angle was the campaign, which is also not about me, but about the NIH, and how their lack of funding and research has left millions of sick people without a place to go. You can count the number of CFS specialists with one and a half hands. The reason I felt optimistic writing this petition is that this is a problem with a very clear solution. It has always had a solution, and in every article, blog, comment debate, news story, I see the same desperately needed solution being pointed out, which is funding. The disease is complex, the research and studies and science is complex, but some of the top virologists and infectious disease specialists in the world are signed on to study this, say they can solve it, they are simply lacking the funds. It just seems so simple in that regard. It’s obvious this can’t be ignored anymore. This is an epidemic, and I know that word is overused a lot, but when millions of people are out of commission, and the country is paying billions a year in lost productivity and medical expenses, I would call that somewhat of a health crisis. So, it’s time. And Mr. Collins and Secretary Burwell can make it happen. I know they can.

I’m still learning how to be an advocate. I don’t know if it’s really my calling. My sister on the other hand should consider this as a career option, she’s really good. :) I’m still trying hard to attain more signatures because I’d like to get as many as possible for the protest on May 25th in DC. The power in this method of “protest” is in numbers, so I’m still thinking “Hey, we can make it to 35. And if we can make it to 35 we can make it to 40!” 40,000 has a nice ring to it, a more sturdy number. Anyway, I trust we’ll get the number we need. And I still have the hesitancy of not letting this fight, win or lose, enter too deep into my identity. In my attempt to share the campaign with every CFS organization, I’ve sort of leaped into the Chronic Illness Community…and everything there makes sense. I see myself in all the stories. I recognize the descriptions. I understand completely what people mean in their emotions and discouragements. But sometimes I have to just dip a toe in..share the petition and then get out. If I spend too much time there, I don’t know, I feel too consumed by it. And those are my brothers and sisters! It’s not that I’m turning my back on them, I just live it and write it enough as it is. I guess I don’t need reminders right now. I’m more hungry for change.

This petition I hope can speak for us all. Maybe I will just always be fighting to remember who I am, to hold on to some remnant of myself that was there before I ever became ill or ever started “fighting for a cure.” In one part of me, a flame has been lit and I feel ready to take on the world and achieve this change. Halfway because I’m bored of it. It’s so obvious what we need to do, and I know it will happen eventually, I’d just like it to happen sooner so we can all get on with other things. The other part of me thinks I can write through the filter of being sick till the cows come home, but there’s so much other subject matter out there. There’s so much else to do. And I want to explore it all. There are so many other stories I want to tell. And I think I will. I’m just a little in between worlds for now. Fighting for this cause and also trying to stay conscious of who I am without all of this. Dive too deep into anything and you can get stuck there. Maybe dive is the wrong word. Attach. I don’t want to become attached to this. I want things to change. And then I want to travel to Japan.

So, that’s what’s happening in my neck of the woods. Physically I feel like absolute crap, which is the most efficient and motivating reminder to keep fighting for this change :)  I don’t know when the news segment will come out, though I can already anticipate my self-consciousness about it. I don’t like seeing myself on camera or hearing my own voice. I am fat from the steroids and hardly even feel like I’m in my own body anymore. And it’s a vulnerable thing–I never imagined I’d be interviewed by someone and talk about being sick, 31 and living with my parents on TV. I mean, this could really ruin things for me on Tinder. But the TRUTH is, none of that matters. It’s not about me or my story or whatever I’ve lost along the way. This is about the campaign and what’s next. It’s about what we’re asking for, which is a very specific thing: $100 million bucks. It’s not that much money, come on! But, if the segment goes online I will try to post it here. So, once again, I will shamelessly post the petition, and if you feel like signing or sharing because you haven’t yet, I recommend you do so I can stop writing about this stuff and my sister can stop pestering every person she knows to sign it. Amelie, I love you. Thank you again everyone for the love and support and signing. I guess that dotted line I envisioned making a sharp turn ended up happening in a very strange way. Life is funny.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure

Health, Happiness, HEY MOM IM ON THE NEWS!

You Know What To Do

(Or if you don’t, it’s Signing this petition..that’s what you’re supposed to do..just in case there is any misunderstanding there. OK then..)

Friends, Families, Duders,

This is one of the most important posts I’ve published here, and I need your help. It’s been a very sick winter/spring for me and I’ve worked hard to try and stay positive, maintain hope, and keep from getting overly discouraged. I don’t always succeed in this, but I try my hardest and I have a lot of reinforcements: my dog, family, loving friends, and funny internet videos that truly sometimes help shift me into a lighter shade of blues. I found that one another way for me to maintain hope and stay positive about my life is to at least try and influence change in regards to how this disease is treated, both socially and federally. Things have already begun to change in a few ways in just the last few years, and I have always held onto the hope that I will see a cure within my lifetime.

Yesterday was particularly hard for some reason. Physically things have been roigh, but emotionally I was really feeling it– all of it. Sad, mad, hopeless and discouraged. My phone rang and it was my sister calling, but I didn’t feel I could even get it together enough to pick up the phone and say that sinply, I was a mess. So I texted it instead and after going back and forth a while, I decided there Was this one thing I could, something I’d been putting off for various reasons, none very good, that could help pull myself out of that dark hole, and that was to invest myself into a cause that may have the possibility of producing real change, of making a vital impact on CFS/ME. I think and pray often that other people will do things and enact change and that I will eventually reap the benefits from them. But that’s a somewhat limited hope. And it leaves all the possibility and power out of my hands, when the truth is we all have the means to effect change (even be it extremely small) if we believe in it and work hard enough. That’s what inspired the campaign I wrote using the platform change.org, which helps deliver our message in a very efficient way. I like that it gives a chance for all our voices to be heard, bed-ridden or not, and only requires a few seconds and click of your mouse t have it be heard.  It’s a great alternative in lieu of a “March for CFS Awareness and Funding!” I think we all know how that would turn out…

We’d start out like “Yeah!!! Race for the Cure!! Screw CFS!!!

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Let’s Run and Raise Some Money People!
But then in a matter of, oh I don’t know, 5 minutes..the scene would inevitably change.

So, since a “Race for the Cure” is not exactly in the realm of possibility for a lot of us, but access to the power of the Internet is, I know that this is a great option for us. We’ve just got to acquire as many signatures as possible. Signing this campaign, which asks the NIH for a larger chunk of money to be allocated toward CFS/ME research, is a way to get this message across quickly and with bigger impact. I also like this methodology, because each time someone signs the petition, an email will be sent to the Head of the NIH and the Secretary of Health and Human Resources, and these are the people who have huge influence on how this disease is treated at the CDC–in particular how much money is dedicated to its research. This is our chance guys, so please please please, sign the petition and share it if you’re feeling extra awesome. I have copy and pasted the campaign here so you can read it, but you’ll need to click the link at the bottom of the page in order to sign it. That’s all it takes, the click of a button.

I thank you all in advance for taking part in this, and I truly believe if we circulate it in a wide enough circle, we can influence some major, desperately needed change. But we have to act. So sign it! Then get back to dicking around on the internet. I mean working, or whatever you’re up to. OK, here it is.

Petitioning Director of NIH Francis Collins and 1 other

Demand Increase Of Research Funding To Help Cure “Invisible Disease”

All I want to do is take a bath.

Before I became sick, that wouldn’t be so hard. Now walking is hard. Standing is hard. Some days, I don’t leave the bed and weeks can go by without my leaving the house. I call in sick to doctors appointments and take between 25 to 30 pills a day just to manage my symptoms, but they do not help the disease. I am 31, and I wasn’t always this way.

My heart is heavy knowing that roughly 3 million other people in our country are suffering from this same disease: Myalgic Encephalomyelitis. ME/CFS is a complex, multi-systemic illness that causes a lot of pain and disabling symptoms, specifically severe weakness and crippling fatigue brought on by even minor exertions–taking a shower, walking to the mailbox, or vacuuming the living room can land you in bed for days. There are currently no FDA-approved treatments and no cure, so we are left fighting this crippling disease in the dark. I was diagnosed with this illness at age 9, a happy gymnast at the time, at which point very little was understood about it and we were left with few options. I slowly regained much of my strength but at age 26 I suffered a severe relapse, could no longer work or take care of myself and had to move in with my parents. Despite twenty years having passed since my initial diagnosis, there are still no FDA-approved treatments and no cure. How could that be?

In a word: interest. In a bigger word: money. For more than a decade, ME/CFS has lingered near the bottom of the Allocated Funds list at the Center for Disease Control, never acquiring more than $6 million annually for research. This may sound like a substantial amount, but to provide some context, Male Pattern Baldness receives $12 million a year, so it’s easy to see that our meek amount is on account of low priority, not the result of insufficient funds. This is why I am asking the director of the NIH and the Secretary of Health and Human Resources to increase the funding allotted to the CDC to $100 million per year to research this devastating disease, so that the millions of people afflicted by it who’ve lost their jobs, families, and overall livelihood might finally have a chance at a healthy life again. Whether the lack of action originated from the stigma of the inaccurate, alternate name it was given in the 80’s, (Chronic Fatigue Syndrome) or the fact that it effects mostly women, I don’t know or care anymore. All I know is that we’ve waited and suffered long enough. It’s a time to come together and solve this health crisis, and I know that we are capable.

There is no better time for these agencies to step in and deliver on what’s been promised. The NIH received a $2 billion dollar budget increase this year, and two independent reports from the Institute of Medicine and the Pathways to Prevention have emerged recently calling for An urgent increase in research funding for ME/CFS, both noting how dire and overdue this situation is.

Governing agencies have always played a huge role in how diseases find treatments and cures. Similar illnesses like MS and Lupus are allotted $100 million each, per year, and collectively they effect less people. Due to these higher funding amounts, both illnesses have diverse and far more effective treatment options under their belt. This is how it’s supposed to work, and I know the current SHHR and director of the NIH are the right people to step in and change the game. We can do better, and so we should start now.

I used to have a pretty outgoing life. I was able to travel in college, fall in love, live in France, enjoy SEC Football, and graduate. Now most of my days are sedentary,  spending a lot of my time in bed with my dog and best friend Monty (see photo)– reading, writing, or sleeping. Sometimes it feels like life is passing me by right outside the window. Truthfully I am lucky when compared to the many people who are sick with ME/CFS and don’t have the help or resources that I do. I especially write this campaign with those extremely ill people in mind–too sick to have their voices heard and suffering alone. The point in all this is that it doesn’t have to be this way. This is something we can change. The country loses billions every year in lost productivity due to this illness alone, and so many of us would want nothing more than to enter the workforce again, if we could only take a shower without having to spend the next whole day in bed recovering.

Please help keep the promise of bringing this invisible disease into the light and dedicating the much deserved attention and funding to it that it’s lacked for all these decades. By signing you will help give millions of sick people hope that they are not forgotten, and show our governing institutions that we trust in them to step in and follow through with improving the health of millions of people, many who are desperately sick. I know with the proper resources, this is something we can treat and ultimately solve. Please sign and share this petition. We can do better, and the time to start is right now.

Thank you.

Mary C Gelpi (and Monty)

#WeCanDoBetter

Click Here to Sign

 

This petition will be delivered to:
  • Director of NIH
    Francis Collins
  • Secretary of Health and Human Services
    Sylvia Burwell

Click here to sign the petition, and copy and paste the address below to share it any way you want.

https://www.change.org/p/ask-nih-for-increase-in-funding-to-help-cure-invisible-disease

Again, thank you. #WeCanDoBetter. So let’s do it.

Health, Happiness, CHANGE

Under Water.

I need to spend more time under water.

Last Monday I returned from a trip to Miami where we celebrated a few things, including my birthday. Thirty one- the best yet! Maybe it was a birthday present from my central nervous system, but my body held up pretty well for me during my stay there. I’m also a little better at saying no to certain things when I know I’m close to crossing the invisible line. My threshold or whatever. Anyway I was able to partake in some awesome things that I dont’t always have the health for. I told my brother I wanted to snorkel for my birthday and he assured me this was not a problem.  At the beach I submerged myself in the ocean and was immediately comforted by it. Water in general has always felt healing to me, but a warm ocean in the summer is at the top of the list. We could have spent all day out there. All day and all night if my body permitted it. There is something truly holy beneath the surface. I like the muffled silence and spotting darting fish and pretty much anything that moves. We saw so many different types of fish, and every time we’d spot a school or something I didn’t recognize, I’d make my brother Nick come to the surface and tell me what kind it was. I’d repeat it out loud, then we’d go back under. I’m really terrible at remembering the names but I’m trying to learn. I’ve already forgotten so many, but I can say with certainty we saw a crap ton of huge, colorful parrot fish, some barracuda, and a bunch of Nemos and Doris. (Technical names) It was Heaven. My three-year-old niece Olive requested that we find her a starfish and we both searched diligently and came up short. But my brother did find a baby sea turtle, and that was pretty righteous.

unnamed-2 unnamed

Isn’t he so cute? Anyway we came back to shore and had lunch, but most of the time I just kept thinking about getting back into that water. It’s almost Church-like swimming around down there. Somehow in spite of the beaming life everywhere you look, theres a stillness to it. Everything slows down and feels at ease–within me, anyway. I’d like to spend more time in the ocean, specifically underwater. I do well there. I think that’s my goal for this year.

Inevitably all that activity ended me up in a week-long hibernation for the last six days. It’s pretty normal to crash after I travel anyway. And eventually all the extra “curriculars” would catch up to me physically. But I was grateful to hold up for as long as I did. It’s funny, you’re always calculating with this illness. Saying yes to one activity usually means you’ll have to say no to some other one tomorrow or the next day. You’re always “borrowing” energy: allocating it as if it were a monetary budget. Going over, or spending too much, means you’ll pay. So you’re always considering cost and reward and whether the consequence will be worth it or not. You don’t always get it right, but you get better as time goes on. In the case of swimming and snorkeling and fishing that day, totally worth it! Still, I think there is a better way to navigate this illness than living the “push-crash” lifestyle. Doing what you want for a certain amount of time, and then spending at least double that amount of time in bed in the future. Most CFS’ers live this way, not because it’s the best or right way, but because it’s A way to at least do some things and not live your life in bed. Anyway, I hope to discover a more sustainable way to go about this, but it works for now. Kinda sorta. You get me.

On another note, I keep doing this thing that I’m trying to stop. I write and write and write and then I edit and edit and edit and then the essay goes in new directions and I want to keep everything a decent length so I start over and consequently end up with 6 different half-written, diligently edited posts, none ending up on the blog. It’s a pretty stupid system and I’m going to try and stop doing things that way. Sometimes my idea about how I want things to look or turn out hinders my goal which is not just to write well, but to write consistently and allow part of what’s happening in #marys sick life to inform my stories–even if what’s happening is boring or sad or awesome or mediocre. It’s a continual lesson in letting go that I’m still trying to grasp– write things out and then let them go. Although it’s easy to mistake for editing, I think I often look through my own words trying to take on the role of reader instead of writer, and I develop this anxiety that I’m not getting through accurately or perfectly representing myself, so I hold off on publishing. But I know this is silly because all I can do is be who I am and write what I know, and if I’m judicious about that then I don’t need to worry about the rest. The truth is I am the writer after all and some of writing is trusting the reader. Showing and not telling, yada yada yada. I think my incessant “reading over” and modifying is just another way to prevent me from putting myself and my words out there on a medium where they’ll live on their own and be subject to scrutiny. Could I really be afraid of criticism after all this time writing on a blog? Probably, which is entirely embarrassing. Because who cares! But pride and vanity are some powerful little devils, and the only way to move past them is to write on despite the superficial concerns.

I’m going to try harder to work and contribute to this space and not become too serious about the whole shebang. Especially to the point where it stifles things. It’s pretty silly getting so analytical about it, because it’s really just not that important. I care deeply about it, but when I zoom out and consider everything, this is just a ledger of one persons life. And pretty unexciting life, at that. I think my concern lies in whether or not I’m contributing meaningful things that will move me and others forward or if I’m just whining on a stick. I am hoping by the end, what and whenever that is, this will all will reveal something larger and more dimensional than a woman child’s diary about sick days and her dog. But even if it is that. Who cares? I only need to focus on what’s in front of me and stop pausing to consider a future I don’t have control of.  The one thing I don’t want to do is restrain myself or my words or the creative endeavors I want to pursue all because I’m worrying what it will all “look like” in the end. Concerns like those are what kills momentum, and good ideas, before they even get a chance to materialize. My truer goal should be simply to write and to allow the words to do what they’ve always done–help me to see things that my thinking mind can’t.

So, hopefully you’ll be hearing a lot more from me and I from you. I am feeling happy to be one year older, to know myself even better having lived on earth for three hundred and sixty-five more days as ME, Mary Gelpi. I’m becoming pretty good friends with myself and we’re getting along well. We’re practically finishing each others SENTENCES. Thank you Nick for exploring the ocean with me, and tugging me back to shore when I was too tired to swim back myself. What else are big brothers for?

Health, Happiness, Thirty One.

Homeopathic Migraine Fix

When you don’t have your medicine, or your medicine isn’t working, and you’re caught in the throes of the diabolical, all-encompassing shitstorm known as a migraine, this could help save you from the depths. It has relieved my mom (fellow migraine sufferer) and I on many occasions. This was a trick she learned from a neurologist in the 80’s when she first became ill and suffered lights-out migraines, for which there were no prescription migraine drugs at the time. (I cringe) Sometimes she would have to endure the pain for days at a time in a dark room or end up in the ER when it could not be controlled. It was a rocky road no doubt, but this trick she learned helped rescue her from some bad ones, and when she shared it with me I was surprised to find it alleviated my terriblest horribliest vomitiest of migraines. And it’s pretty easy to do. I just figured I would share it with yall and if it helps even one person out of the fiery pits of migraine Hell, well then, we’re all winners really.

Here's what a bathtub looks like, in case you're too sick to remember.
Here’s what a bathtub looks like, in case you’re too sick to remember.

1. Get in a hot bath. The hot water helps draw the blood down and away from your head. If you can’t get in a bath, try using a heat pack around your feet or soaking them in hot water, but I find baths best. Try to sit upright even though all you wanna do is lay down and die. I get it, but sitting up will redirect the blood flow faster. And when you’re under attack, speed counts.

2. Wrap an ice pack around your neck. If you don’t have one, use whatever you can find in your freezer– frozen peas or strawberries or deer meat from your uncles hunt last year. All is fair in love and migraines. Wrap the ice in whatever form around your neck at the base of your head. The ice helps restrict the blood flow to the head, which is where your blood vessels are spasming, and redirect it downward. Think South. You want to send everything South.

3. Drink hot black coffee. Not some frappuchino crap either. You don’t want the sugar. If you can’t do coffee, I imagine a strong black or green tea could offer the same result, but I have only ever used coffee, so I can’t really endorse that one. If you’re like me you get crazy nauseous and often vomit during a migraine, so eating or drinking anything is the last thing you want to do. But just start with one sip. This is your way out. Keep taking small sips, and soon you’ll feel the first tinge of relief and find your stomach has begun to settle. I am unsure what mechanism exactly is responsible for this relief, but it’s there. Perhaps it’s stimulation of digestion plays a part–not sure. But more importantly, it’s a major help in quelling those haywire blood vessels in your brain-effectively serving the purpose of an OTC or RX migraine drug.

Caffeine works in an interesting way. There is a molecule called adenosine that is responsible for dilating the blood vessels in the brain. Caffeine mimics this molecule and competes with it at the receptor site. Once displacing the adenosine, it gets in like a ninja and constricts the dilating blood vessels– the ones causing that UnGodly pain that no one should feel. But we do. Welcome to life homies! Not to mention, caffeine has long been used in conjuncture with pain medicines as it aids in their absorption, particularly acetametaphine. So in the least, it can give some your pain relievers a boost if you take them. There. Now you’re cured.

It’s all about the power of three here; one alone won’t cut it. The triple threat is your best bet. I am of course not a doctor clearly, and everyone is different; it may not work for all. And obviously miracle drugs like Maxalt  and the like are more convenient and don’t require a bathtub. But when you’re desperate for relief, try this. In my experience the the proof is in the pudding. It has without a doubt saved me from immense suffering on a few occasions and my mom on many more, even when the strongest meds have failed.

The sooner you react to one the better, so act quick. Get naked, get ice, drink coffee. And once you’re able, drink a lot of fluid. Dehydration is found to play a big role in migraines, so replenish your electrolytes and restore your fluids asap. Especially because you probably puked them all up. On that note…

Good Night and Good Luck,

Mary

Thanks mom!

How To Come Home

I’ve just made it home. My suitcase is still lying in the center of the kitchen floor.

It’s crazy how good home feels after you’ve been away from it, even when you’ve completely enjoyed your time away. Somewhere between waiting in line barefoot among rookie fliers who somehow forgot about the jug of water in their carry-on and the captain shouting God knows what into that fuzzy speaker, I start to feel my humanity slip like some kind of sock with lazy elastic hovering at the ankle.

Once upon a time, flying made me feel like a celebrity. The whole experience was a novelty and a privilege.  And somewhere in my jaded depths I know that it still is. The mere idea of humans taking flight on a bus in mid-air is still mesmerizing and I’m lucky to have access to it. And yet somehow,  the only celebrity I ever feel like is Ben Stiller in Meet the Parents. I’m all eye rolls and discouraged sighs, which sometimes emerge as a laugh–the kind of laugh you let out when nothing is actually funny. I try to keep my moans of discontent in, even when the automatic toilet flushes while I’m still on it and I’m sprinkled with fresh public toilet water. I try to breathe through the frustration of then not getting that same toilet to flush when I actually want it to and there I am dancing like some kind of monkey on fire trying to activate the motion detector that says just wave your hand to activate. It lies. I exit, I don’t care. I hate the toilet now. All I want to do is wash the Ebola off my hands and possible STD’s off my thighs, but the faucet requires the motion. And the soap requires a motion. And the dryer requires a motion. And what happened to handles? If I went on Shark Tank I’d reintroduce handles to public bathrooms. Anyway there is more dancing. More erratic behavior from inanimate objects. More laughing when it’s not funny. It’s like the DMV in there; the threat level of a Stage 5 freakout is just one toilet flush away in any given stall. You can sense it.

But not everyone confronts the airport bathroom circus. The old lady next to me doesn’t seem to have problems with her soap. I bet she’s been spared from the toilet water too. What is your secret, old white lady in the brown velour pant suit? What am I doing wrong? But there’s no time for philosophizing, I have to get to my gate. Guess where my gate is? Guess if it’s nearby or at the very far edge of the airport as in it has a separate zip code and everything. Guess.

Is it the tragedy that is modern American air travel that makes home feel this good? Maybe. Probably. I guess this account of flying would suggest I’m a young, old curmudgeon who has lost sight to how lucky I am.  But it’s always temporary. I am either going somewhere great or coming home to relief and love, and it’s just the in-between antics that can get a girl down. Once home nobody shouts the temperature and the toilets flush WHEN YOU WANT THEM TO. Of course, an 80 pound furry beast running around you in circles then through your legs and back, shoving every toy in the box in your lap and wagging his tail with enough vigor to knock over small children and feeble adults, well, that helps too. That’s the best.

I celebrated Thanksgiving with my best friend big brother Nick and Company in Miami for a week. Mostly I felt like death, but I was excited to go and the change in scenery did me good. It’s been a rocky few months. My health declined from mediocre to poor without discernible reason, and that’s just the name of the game with illness like this. I can’t pretend I’m not discouraged by it or tired of feeling really shitty when I didn’t overdo it or change anything, as if a person deserves bad health anyway, but I’m trying not to wallow in it either. I saw the specialist in Miami and there are a few changes we are making, but we won’t know more until the results arrive from the copious amount of blood I gave to test. Aside from that, my progressive boyfriend and I broke up. Ew, breakups.

It’s interesting that a decision you’re sure of it’s the right one to make can be just as painful as the wrong ones you’ve made when you didn’t know any better. And by interesting I mean shitty. We did the adult thing and “called it” at the appropriate time. We saved ourselves the tragedy of letting it slowly burn and die until it ended in hatred. I guess ultimately, even an amicable breakup is still a breakup. It’s an end. You grieve for them and you grieve for who you were with them. I experienced a whole new pain this time around that stemmed from not being my whole self in the endeavor. I pretended and concealed when the truth was ugly or getting a less than desirable response. I don’t think Id ever done that In a relationship before, but I’ve never been under the circumstances I am now and had to introduce someone knew to a world that took so much explaining, and defending in some cases.

It’s weird, I actually wanted to keep my illness out of the whole thing. (I wanted to live in Neverland, is how that sentence should read.) I had this fear it would interfere with things before they ever had a shot to develop. I feared it would be difficult and unbecoming; It would suggest I was someone inferior. I was even afraid it might be the demise of the relationship. And then, it kind of was. The weight of it became too heavy, it’s unrelenting nature became too repetitive and it’s lack of a solution wore out the seams and we broke. There were other reasons, of course. But my being sick was up there, it messed with things, it was a big a part of the end. And for a while that was a really crushing thought. It made me feel small, made my life feel lesser. I push and work to live my life in spite of this invisible force trying to take it away, and yet sometimes, it still comes out on top. It wins.

But hiding it was like doing a monkey dance in a cramped bathroom stall. (Kind of) It was stupid on top of exhausting, and I don’t know how I expected anything authentically good to emerge when I wasn’t being true to myself. I am not my illness, I know that. But it’s there, it’s changed virtually everything in my life the last four years, and nothing good has ever come from denying or dismissing it; from pretending it’s not there. And yet, sometimes I can sense that people want me to pretend it’s not there. They want to hear that I’m better, and no one understands that fantasy more than me. But pretending makes me feel like I have to hide a part of my life that I can’t control, and that’s not a healthy place to be. I don’t want long conversations about my illness. Ive had enough of them for 20 lifetimes. But I do need an honest atmosphere that doesn’t require apology. I need to be able to be sick when I’m sick and well when I’m well and not judged inbetween. It will always take patience, compassion and effort in order for my life to be understood and loved from the outside. It will always be hard in my relationships. But hopefully if I am really seen, my external circumstances won’t take up so much space. And that was half the problem, I never really felt seen. Instead I felt sorry, and that’s because I betrayed myself. By not putting it all out there, I made it nearly impossible for my life to make sense.  I am not jobless and living in my parents pool house writing on a blog called Twenty Five Pills a Day because of lifestyle choices. And that’s an attitude I confront a lot. I’ll work like hell my whole life to turn lemons into lemonade, but I didn’t pick the lemons, so I don’t think I need to apologize for that anymore. The weird thing is that in glossing over and skirting around this small part of me, so much more of who I am was stifled. Good parts! Fun parts! It doesn’t feel good not to bring your whole self to a party. In fact, that hurt the worst, and I did it to myself. I had a need that wasn’t getting met, and instead of accepting that once I knew it was true, I tried to do away with the need. Surprise surprise, that didn’t work. It’s OK to have needs. Love enjoys needs.

Now I am Stella getting my groove back. I see my health in the distance: a ship in flames slowly sinking into the ocean. Haha. That image makes me laugh. But this will pass. I’ll get better. Or I’ll get worse, then I’ll get better. It doesn’t matter, because I’m going to keep trying. I’ll attempt to transform all of this– pain, pleasure, toilet water– into something useful. Something fun. Because despair is boring and I’m seeking a creative life. The world doesn’t need more sad stories so I will find the good ones. I’ll trust what I’ve been given and let it fuel all my endeavors. Mostly I’ll breathe easier because I am who I am and I’ve made it home. I’m back. And I have so much to do.

Stay tuned.

Health, Happiness, Home.

10 Things Easier Done Than Filling A Legal Prescription In America

1. Buying Illegal Prescriptions/Drugs In America.

2. Teaching a Wild Bear to Play the Trumpet.

Yeah, You Read That Right
Yeah, You Read That Right

3. Buying a Gun

Guns: Much Safer Than Meds For Sick People.
Because Guns Are Safer Than Meds For the Sick. Duh!

4. Going an Entire Day Without iTunes Asking If You’d Like to Install the Latest Update.

5. Getting Your License Renewed Anything Achieved at the DMV.

6. Surviving a Breakup.

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Half true.

7. Sitting Through the Entire Hour of “Marketplace” on NPR.

8. Teaching Your Grandma How to Use Twitter.

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Preach it, Granny

9. Admitting You’re Wrong in the Middle of an Argument.

10. Playing Golf On the Moon

moon-300x223
This Didn’t Even Require a Prior Authorization!

Health, Happiness, and A Million Miles of Pharmaceutical Red Tape

Jumping Off.

I’m never up at this hour. But at roughly 6:40 am as I drove across Lake Ponchartrain, one of only a few lonely cars on the 24 mile bridge, it struck me just how sacred the early mornings are. Of course over water, there are no distinct markers of distance traveled besides mile markers on land, but somehow over uninterrupted waves there were these distinct and momentary glimpses into the context of my life where all the working pieces fit together. The sense, however fleeting, had me second guessing my entire history as a bona-fide night person. Maybe there’s something to these early morning hours where people are drifting into the routine of their day or into the hangover of their night, and in the middle is me, not exactly doing either, but finding my place still–stumbling on a whole in lieu of constant and incompatible parts.

Yesterday I attended JazzFest and I remember walking around in no known direction, attempting to find a group of my friends, which is almost a miracle if achieved in such a clusterfuck of a public arena, and this thought kept trying to get a hold of me. “What am I doing? I have no business being here.” Over and over that thought, with every wrong turn and mistaken identity. What a sad thought! I couldn’t pinpoint the origin of it, but it probably had roots in my mostly confined and solitary past over a few years. And now sticking my head out, landing clumsily in the middle of the public world that not only didn’t stop while I was “out sick”, it also didn’t slow down at all either. And that continued, irreverent, incessant flow of time in one direction only all of the sudden felt very real and a little unnerving too. But I walked on. It’d be a lie to say I felt any confidence at all then, taking in every type of person of every age and origin.And even though none of them looked truly happy to me, none of them had a life that I felt cheated by not having, I was still odd man out.  I started to wonder if I had real friends at all that I’d find. Maybe I had imagined them up in a fantasy of my mind, and I’d walk tirelessly never bumping into them because there was no them to bump into. But I walked on. I pretended some of those thoughts didn’t exist. Maybe more, I just didn’t take them very seriously. I’d feel the sun burning my shoulders and I’d affirm that more likely than not I’d find my friends, I’d engage in young adult behavior, and feel a little better about my place in reality.

After 45 minutes of circles and flags and strangers, I watched a really drunk boy hoisted up by his friends, being dragged with his lifeless converse trailing under him leaving shallow lines in the dirt, the unfamiliar sights were piling up, and even I started to feel like a stranger there. But then– something familiar. Emily’s ponytail. Someone. People. Friends. They existed, and I was not yet proven insane. In that moment those thoughts I had didn’t carry any weight at all. Whether I found my friends or not had nothing to do with belonging in all honesty. Separateness is just a construct of ego and I know that, but it can stab you anyway. I knew that afternoon I could’ve really used some friends. And there they were and there I was. I belonged. I knew those thoughts were shit. Time to keep on living. Time to have fun now. Time to participate in the onward direction of time, and  attach to some other thought that experience will most likely prove wrong.

Maybe I should’ve mentioned it earlier, but I’ve never really been a live music person. Which makes me feel incredibly lame mostly. Just like I’m also not really into The Lord of the Rings. True “outsider” feelings emerge in me when this is brought up in public, and I feel like there’s some joke I’m just not getting. What is there to say about it? To each his own. Anyway, at every live music event I’ve attended, I find myself gazing off lost in observational mode of the people enjoying the music, instead of intrinsically enjoying the music myself. I can’t help it. There’s always some woman on the borderline of being “too old to be there” on some drug that’s a little too young for her to be doing, and I can’t help but watch her, dance carelessly, body parts hanging out, not giving a shit about what etiquette she’s breaking. Then I at once sympathize for her but also want to be her, because she is losing herself in something enjoyable, and she’s alone, and I’m the creeper at the concert not dancing but staring wide-eyed and blinking very slowly. I dated one of those music junkie type of guys for two years. He had an impressive collection of bands that you never heard of on his ipod and was always discovering music years before it became popular. (I on the other hand got my music from Apple Product commercials) He flew all over the country to catch his favorite bands at different venues. Sometimes with friends and sometimes alone and it was this small gap between us because this passion he fell off his seat for was somewhere that I just didn’t fit. And this schism in us always interested me, because at concerts we’d share a joint and then even more I’d separate from the setting and lose myself in the detach-and-detect humanity mode. He was good about keeping me down to earth and assuring me that dancing like an idiot was fine and encouraged, and that no, that guy next to me was not about to die from sensory overload regardless of what his face and body movements suggested. But there was always some wall with me at those shindigs. I could never really figure it out. Ultimately the relationship ended, and I wondered how much, if any, this disconnect had to do with it. Maybe nothing at all. Maybe a whole lot.

It’s funny how discovering clarity leaves with you so much to know still. My goal this year has been to find clarity of any kind, certainty of any measure. Because both of these things lack hugely in my personal life and it wares on me daily. It’d be nice to make a decision and know it to be right, or know anything at all for that matter and trust it to be true. But even with this goal in the forefront of my consciousness, it has still been incredibly hard, and so far, I’m yet to find either. I’m guessing the more things I pursue where the end is uncertain and there are no guarantees will help me to eventually get there, or in the general ball park. On the bridge this morning, the unceasing rhythm of a road bump every 1.5 seconds, I glimpsed certainty. I glimpsed knowing something at all, and it felt very good. But I don’t know if it’s possible to exist in this dimension full-time. At least half of life seems to rely on not knowing but jumping off anyway. Maybe love, happiness, success, peace..are all the outcomes of great risk and great faith. All anyone can do is make their best bet and go for it. Maybe once we let go of knowing anything for sure, the way I walked in endless circles yesterday, the way those waves went in no direction this morning, is how we find the happy end, whether we knew we would or could or not.

Health, Happiness, Walking On, Jumping Off.

Colby's Apartment
Colby’s Apartment

Don’t Forget to Do Nothing.

Two things happen when I start feeling better: My house gets really, down-to-the-baseboards clean, and my writing takes a hiatus.

For whatever reason, the last two weeks have been comparatively healthy ones. My energy is up and my pain level medium and manageable. Like most people with the illness, I couldn’t tell you exactly what’s changed. And if the past is any indicator, I could just as easily land on my ass tomorrow and be in a bed for a week. Of course, I’m not expecting that, and I’m enjoying the hell out of the newfound energy. My mom says it’s obvious when you start feeling better because suddenly you see all these little things that need tending too that you hadn’t noticed before. I’m sure it’s a defense mechanism of the body. You can’t exactly worry about dusty baseboards when your arms are too weak for teeth-brushing.

As I’ve enjoyed this accelerated momentum and stamina, I noticed I was forgetting to write. It’s easy to see why–often the trigger for me to write is either some sort of pain (physical or mental) that leads to enlightenment or offers some lesson, or it’s diverted attention to some very small detail that I usually notice when the pace of my life is slow, ie when I’m sick. It’s not that the requirement for noticing these deeper observations is sickness, it’s that when I am in fact sick, everything slows down. Out of necessity, I don’t really have a choice. The tasks on a to-do list, the chores, the logistics of physical life are put on hold while whatever broken part of me is on the mend. When I’m in this state, it’s almost as if some parts of my brain are turned up while others turn down. Like the static and noise of everyday life are quieted, and in that absence come the more powerful details and ideas. In other words, I’m tuned in to a different frequency. I’m looking for and sometimes finding answers and meaning maybe because it’s a way to feel alive and happy while waiting on my physical body to “catch up”. But I’ve discovered something in the last two weeks that now I’ll be paying attention to:

I shouldn’t have to be sick in order to be tuned in to that frequency.

The modern world is fast. The to-do lists are bottomless. And even when we die there will be unread emails in our in-boxes. This is why that conscious awareness I have while I am sick, the kind that the mystics speak of,  will have to be a choice on my part. (If I am to be well) If the last three years have shown me anything, it’s been the importance of that tuned in consciousness. Of living my life awake, not numbed or on autopilot. These things are easy to forget. Hell, I’ve been healthy a week and half and seemed to have forgotten just as quickly. But it certainly makes me examine the thought that all sick people have– could this be the reason I was sick at all? It’s not a theory anymore, I know with absolute certainty that without illness me and my life would be very, very different. I was a type-A personality; A competitive gymnast to whom school and other things came easy. Would I have ever slowed down? Would I ever have found Wisdom in the Day Lillies or saved the all those baby frogs from the pool everyday while examining the largeness and smallness of life that surrounds me? Would I stop to photograph plants like this just because it struck me as beautiful and that was reason enough for pause?

The Pink!
The Pink!

Well, probably not. And it’s not to say that me noticing the beauty of flowers or the fragility of life is so important or better than what I’d be doing otherwise. But I have to trust in the specific experience I’m having. Things could have been different, but of course, we can’t re-write our pasts. I’ll never know who I would’ve been. On bad days (on unconscious moments)  I fantasize that I would have been better. That my life would be a glamorous one and there would be little suffering and I would be the president blah blah blah. But that kind of thinking is mostly ego of course, and all fantasy. Projecting that all my happiness lies somewhere over there, if only things were different is textbook ego. And all that contributes to is a lack of attention to the present. It takes away my power and ability to see and navigate where I am with what I have. If our power is in the present and it’s indeed all we have like Tolle and his peers suggest, then the “if only” thought doesn’t get us very far. It’s rare that we stop to consider that without illness or without our painful experience, we might have been someone worse. Someone very unlike who we are today. Now when I consider why maybe this illness is a part of my path, it makes a little more sense. It’s what I needed to become awake. And clearly I’m still trying to get there.

Of course maybe you’re a student of the chaos theory, in which case all of this is just randomness unraveling in a one-time deal called life on earth. Some people are sick and other people aren’t. Life is good or life is bad and then you die.  I’ve considered this hypothesis but it just doesn’t work for me. It doesn’t further my vision or deepen my understanding of life and its complexity. In fact it seems to cut off at the very best part–the why. That’s a question I wonder if I’ll ever stop asking. Most of this experience only begins to make sense when I get down to details like a scientist would, and so that’s where my understanding is. Or where it begins. I am still searching for more answers, for more mentors and schools of thought to point me toward them. But I find it hard to accept a conclusion that appears to stop at the tip of the iceberg in terms of depth and understanding of all the elements of life that we cannot see. Love. Suffering. Belief. Surrender. Grief. Grace. Of course maybe I’m wrong in which case we’re all going to die anyway and I’ll never see you again. So, ya know, whateva.

There was only one day in the last week where I felt bad enough to spend the afternoon horizontal. As I write that I’m containing my excitement at how “good” I’ve felt that only one day this week I was on supine. Anyway, that morning I’d caught the eye of a tree frog on my kitchen door. For whatever reason I watched him a while and then took a picture. On my downtime that afternoon I kept thinking of that frog and the surplus of details on his little tiny body. So I wrote- a poem- for the next two hours. I don’t know whether it was good or not and maybe that doesn’t matter. But I do know for whatever reason, it had me feeling good to write it. I noticed then too, I’ve got to slow down. Even when I feel good, let some tasks lie. Let some calls go unanswered. Sit in stillness and quiet and let the questions come. Even if for ten minutes, I always feel better. Lately I’ve caught myself stuck on the guide channel of my TV, incessantly searching for a show that I feel will entertain or gratify me. I play one show in the window but continue to seek the magic program, while ads about Lipitor blare at unconscionable volumes. Suddenly, I’ll hit the power button, and the subsequent silence feels so. incredibly. good. That was the program I was looking for; silence! Life is noisy, and fast, and always non-stop. Sometimes it’s OK to stop and do nothing. Notice what happens in the stillness. It’s as if a whole other world exists right beyond the busy.

Health, Happiness, and Something Beyond the Nothing.

details.
details.

 

I Wanna Get Better

This strange thing keeps happening. This clear salty liquid keeps filling up in my eyes and overflowing down my face. I’ll feel a little overwhelmed and then a sense of loss, like I’m mourning someone. The liquid is an endless spring. I imagine I’ll run out, but I don’t. I have to drink more just to supplement all that salt I’m losing! It’s pretty annoying. I’d like it to stop.

The truth is I become a fragile emotional feather when I’m sick without relief. Gradually, after day and night and day of unrelenting sickness, it just gets to you. It starts to feel like dying more than living. I know that’s a heavy statement, and I use the verb feel very specifically. I am very much alive. Although it does beg the question. At what point do we say someone is “dying?” When their suffering outweighs their relief? That’s another question another day. I am for whatever reason, very alive, although I feel very dead. But dead people don’t cry so I think I can rule that out.

The real reason it’s been so hard recently is that being sick is absolutely and utterly exhausting. It’s overwhelming. And you know what I fantasize about? Being one of the people in my life right now that gets to offer help and suggest improvements and do random kind things. I dream of just being an average person in the functioning world. If you are that person, in anyones life, treasure it. It’s truly a privilege to be able to give to others. I might not have understood that had I never gotten sick. I want to give instead of take take take all the time. I’m tired of relying on help from others and constantly showing gratitude or kissing ass because I’m often helpless, unreliable, or burdensome. I’m tired of being high maintenance. I’m tired of all the pills I take, that work about half the time. Sometimes my stomach turns at the thought of them. I’m tired of being a bad friend in terms of what I am able to offer. I’m tired of what I am made to consider my “social life.” I’m tired of calling in sick to doctor appointments. Of seeing one or two hours of sunlight on bad days. I’m tired of my nightmares and high anxiety dreams every night. You’d think such a weighed down life would find respite in the dreamworld, but nope!! I’m tired of being 29 and relying on my parents as much as I do. Tired of feeling like I have things to offer the world but am too sick and small to carry them out. I couldn’t even hold a part-time job right now. And I’d actually love to. I’m tired of the answer being that there is no answer–there is no cure. I’m tired of being tired. And I know that those I rely on get tired of it too. The effects of all this go beyond me.

I don’t believe in whining and complaining and lamenting about life. Going on that way doesn’t really move us forward. But at the same time, there is pain here, underneath the pain, and if I don’t let it out I fear it will grow and take over my already sick insides. So I have to release it. I thought maybe if I write about it, these episodes of fluid filling up my eyes and clouding my vision and streaming down my face will cease. In other words, I want to stop crying at dog food commercials.

I am someone who loves solitude, thrives off of it even. But lately it feels more like loneliness, which is the third cousin twice removed from solitude. It’s a bad feeling. The difference between the two is that one is chosen and the other feels like the forced, only option. It’s hard to swallow when you’re constantly canceling on plans. And what you’re doing instead of being with friends, is being sick and alone at home. That’s not a fun thing to go through all the time. It wears on you.

I also laugh and cry at myself because I still want to see new places and try new things, meet new people and kiss cute boys. It’s like my heart doesn’t know I’m sick. It never gives up on the idea of new adventures. And then I wonder who would want to date me that has read this blog? I sort of leave my bleeding heart in the words here, and it’s a lot. It probably looks heavy. It can be, like anyones life. I feel vulnerable sometimes knowing that people have read such personal things about me without actually knowing me at all, but it’s part of the project. I told myself I’d always be honest, including when it got ugly. And I feel like it’d be dishonorable to discontinue that just for the sake of vanity. Still though, I worry and wonder if I’m cutting myself off from potential personal relationships by laying it all out there for the world to chew up. I worry where my life will go and how in Gods name I will move forward from here when some days I can’t leave the bed. But our boy Tolle is right: all we have is the present moment. All anyone can do is here and now. And if the present moment has me weak and in bed, (like it does right now) I can’t judge it or myself. This is where I am. I am doing what I’m capable of. Some days are going to look like this:

Not tired of this yet.
Not tired of this part.

I see where I’ve gone wrong. I’ve been judging the circumstances of my life which are beyond my control. I’ve been equating my broken body with who I am and my past as the teller of what my whole life will look like. Neither are true. But my circular thoughts would say otherwise, and sometimes we have to observe ourselves beyond our thoughts and feelings–as they are often flat-out wrong. At the same time, this life is just painful and hard sometimes, and I guess it’s OK to type that out loud. Just like I will type out loud when things change and life is better. Everything is temporary.

I also know that goals never hurt anybody. And I plan to make some more specific ones and at least feel  like I am playing a part in my health and happiness. There are small things that I can do and/or avoid that can help. Well, that’s what my mom says, and she is usually right. She’s also planning to give up TV for Lent which sounds great to me. I have a few projects in mind in lieu of the crap we would’ve been watching. Creativity never hurt either. In fact, it’s often where we find relief we didn’t even know we needed.

Also, listen to this song. It’s called I Wanna Get Better by Bleachers and I know the title is almost annoyingly appropriate but it’s a really fun and happy jam. And you can’t have enough of those.

Health and Happiness and Sickness and Sadness :)

Unwell, Unafraid

I know this feeling all too well.

A crash day followed by a crash day followed by a crash day. Somehow it’s worse when you’ve been feeling well.  All the years I’ve been sick, all the crash days and months, and I still can’t remember how bad it feels. It always pulls the rug out from under me–more so if I’ve had good health. Over and over, I forget. How incapacitating it is. How depressing it can get. When you’re moving and doing and performing tasks, you don’t think about these things. You don’t have to. You’re fitting in and alongside the rest of the functioning, productive world and that’s how you like it. It’s the best kind of fitting in. Someone asking you how you are is nothing more than a pleasantry and that’s how I like it. No reason to sugarcoat or think twice about the answer. I’ve yet to figure out a response that feels right, so mostly I lie, and I’m a bad liar. I cave easy. But this is one I get away with. I suppose it’s why anyone lies; it’s just easier. It feels good to give an answer that people want to hear. It keeps a hard reality in the blurry background, and that’s how I like that, too.

On day 4 of my crash, I’m laying on my moms couch in the office. My mom comes in and asks if I am still as weak as I’ve been. I quickly reply ‘no’ and that I’m feeling at least a small bit better. It’s a lie. I can tell because saying it out loud causes some kind of turning in my gut; where the truth would’ve provided solace maybe. I feel just as bad if not worse than yesterday. I’m short of breath for no reason and I’m weak down to my finger tips–peeling my banana earlier was way harder than it should have been. I’m dizzy every time I move. I get waves of nausea that are as close to puking without actually puking as it gets. But I lied. I said I was better. I’m left wondering why I did that. I’ve got some ideas.

Not having to think for very long, the answer came. It’s so easy: I’m afraid. I’m afraid that it could mean what it’s meant before. That it won’t go away. That I could be stuck this way the rest of my life. That I’ll never be able to fulfill all the dreams I have or achieve my notebook full of plans and ideas. I’ve had a one day crash turn into a week turn into 6 months. I’ve watched my life turn inside out and be emptied of the good parts. So often it feels like I’m watching it all happen from the outside. At 26 it felt as though the narrative of my life shifted from 1st person to 3rd, and that’s been hard to get used to. I said goodbye to things I wasn’t ready to. The illness took me over and then swallowed everything in my vicinity too. It was hard. It is hard. Some days, some weeks, some months better than others. It’s just been so “good” the last few months. It seems every time I crash I have to confront everything all over again. I think it will be that way until I fully accept and surrender to what my life might be. I already know the challenges I face, I also know it could be a lot worse. That in the end I have everything I really need. And while my life could be bad like I fear sometimes, it could also be good. great even. And the reason I need to let go of that fear is because what my life can be is up to me. Sick or healthy.

I have to remind myself often that a lot of this is out of my hands, which I have to be very careful with. That kind of acknowledgment requires perspective and reflection and it should never be an excuse. This is surrender, it is not giving up. They are two different animals and mixing them up can heavy the suffering. It doesn’t mean you call it quits and accept that life is shit. I’ve had to draw a lot lines between surrender and giving up and so often I’ve gotten it wrong. I’m ready to start getting it right. Apart from what we’re doing in our lives, the way in which we examine them makes all the difference in its joy or sadness. You’ll know whether you’re surrendering or giving up the same way you’ll know whether you’re telling the truth or not: one feels like relief, the other like defeat. One has roots in reality, the other in fear of it.

I have to stay aware. I have to remain conscious about the choices I am still free to make, and remember that I do still play a part in all this. Of course there are many parts of my life I would change were I able. But how I go about living the rest of my days is in fact up to me. Actually, it is only up to me. Will I choose to react? Will I choose to be a victim? Will I make excuses for myself to justify poor decisions? All of these are possible. And every day I wake up I can think of 100 reasons to choose a darker path. To stew in my own sorrow, to stop trying, to be defeated by something difficult, as if no one else alive is faced with their own challenges. Some that make mine look like a splinter in my pinky. The opportunity to go another route will always be there. You’ll get in trouble thinking that if you choose one good thing, you won’t be tempted by so many other bad ones. You will be. Everyone is, in their own way. Every person has demons to manage and a truth that isn’t easy to sit with in silence, but truthfully this is half of being alive. It’s why you’re a human being and not a turtle in the mud or an insect reacting to stimuli; flying toward whatever is bright.

The funny thing is, what most humans want is control. We like to think we make our own lives and everything is up to us. I disagree with that notion on a few levels and agree with it on others. I know for certain we play a huge hand in our own happiness. But when we get dealt things we didn’t plan for or wouldn’t have picked we feel like we’ve been royally screwed. Robbed. So often I fail to realize it’s not about choosing my hand but how I play the one I got. That has been and always will be up to us.We get to choose how we talk to people and who we surround ourselves with and what we’re going to give our precious energy to each day. What mark will we leave? What will we contribute to the world we’ve been given? Scientists and theologians continue to debate whether we chose to come here or not. Regardless of whether we’re the product of an all-knowing creator or consciousness or the random assimilation of atoms and space, we know for certain our time here is temporary. Loving or hating our life won’t change whether it ends or not. It will end. We don’t get to stay forever. We don’t get a say so in some of the things that were done to us. Every adult has a childhood. Every child had parts that weren’t fair or right. At one time or another, we’ll question every truth we’ve held onto and every drop of optimism we’ve carried. At times we’ll have to fight for our purpose, even if it’s just to get out of bed and make yourself eggs. (That was mine today. Yeah!) We get to choose what we do next with what we have. Will I find a reason to be happy or a reason to be mad? Because I will find both. I can always find both.

I have plenty of reasons to be both. But the last thing I need is to be afraid of what is real. Even if what is real is scary. Life is scary stuff dude. Have you been outside lately?! Even in small doses. Sometimes I have to chop it up smaller and smaller and smaller until it’s digestible enough for me to get out of bed and face the world and find my path and keep going. Doesn’t matter that I know where, so long as it’s forward. The truth moves us forward where lies keep us in the past. Surrender smooths the road for us to navigate with eyes anew, where giving up halts us, traps us in static pause.

I have no idea why even small truths are important, maybe for the reason that even small lies can cause damage. My small truth is that today is the 5th day in a row I feel terrible, and I live in fear that I won’t emerge from it. That the illness has the steering wheel and I’m passenger side. I fear what all the pills I take is doing to my insides. I fear I’ll live with my parents forever. (Sometimes I think they fear it too :) And all of these things are O.K. There’s no need for me to sugarcoat it, lie about it, or fall dramatically somber in acknowledging it. In fact admitting the fear almost instantaneously makes it smaller. Takes away a little of its power.  Today I’m unwell, but I’m also unafraid. I expect to get better. Being quiet and afraid won’t rid me of what I fear. So perhaps better to be loud and honest. Life will go on regardless. What I want to be assured of, and what I imagine so many of us want to be assured of, is that we tried. That we didn’t take being alive lightly. I know I don’t live all of my days like that, and that’s a change I’m working on. Imagine if we could all live in our truth, whatever it is, and embrace each day as though we’d never lost. What might our world look like then? Our lives? Our Facebook Statuses?!

This has all stemmed from one small lie I told one afternoon that followed me around all night and morning. Funny that me confronting a grand truth began with a dumb little lie. But something about it makes me feel in my bones that these things matter. Sometimes I see and feel in myself and others that we’re starving for things that matter but are constantly being fed things that don’t. I don’t know how to begin a shift, but I know to make changes on a big scale, we must first begin with ourselves and live honestly. It’s our job to dig deep within, listen to our intuition, and be human for one another, not at one another.

I’m still tying all of my thoughts together. Still looking for answers and often coming up short. Sometimes I can feel the strings of my reality ever so slowly weaving together and making something whole from many mismatched parts. That’s what so many days feel like. Raking through the muck and finding the good parts. Then making sense out of the bad stuff left behind. The fear and pain and anger, there’s a lot of answers in them.

I’m sharing this beginning with anyone reading. (All six of you)  Maybe somehow, it’s something we all work towards together. And whether this is just a stepping stone or a small premise for something bigger, it doesn’t matter. This can be the start of something new, even if it’s very very small. And I can look back at this oddly cold day in January, where besides the frozen leaves outside, it would have been business as usual. But it wasn’t. It isn’t. Where a small lie would have left me afraid, a tiny truth burrowed out instead. And in my repetitive life, maybe this is the start of something new.

Health, Happiness, and I Ain’t Scurred

I ain't scurred
Just Kidding I’m Still Scared

Fall Yall.

They say the only thing constant is change itself. And when seasons change, particularly Summer into Fall, I always seem to feel a change on the inside as I watch the atmosphere play out it’s own changes. As if my circadian rhythms, my organs, my soul knows that things are going to change. I’ve always liked the feeling. The transition from Summer into Fall and Fall into Winter has always been the happiest time for me. That first gust of cold air. Pulling out old sweaters and cardigans. Cuddling in close to whoever you’re with. (I’m talking to you mom!) And there’s that slight reminder that the Holiday’s aren’t so far away and if you’re like me and ridiculously elated by Christmas, then it’s a good feeling to pick up on. I’d say if I could choose a season to fall in love, as if you could ever choose these things, I’d pick Fall. It also seems most likely to happen then in my eyes. A girl can dream. I say that a lot.

New Orleans weather is really weird. And by weird I mostly mean crappy. Our summers are long. Just too long really. And unrelentingly hot and humid. It takes your breath sometimes. Every time I fly into Louis Armstrong and exit baggage claim, my lungs get coated with a Southern sheet of bayou film and I have to remind myself how to breathe. It’s all part of the fun of calling Nola home. And I mean that. Our Fall is very short, much like the Spring. And Winter is fickle. A cold day comes. Everyone dresses as if the blizzard of the century is approaching and the cold due to the moisture in our air is penetrating and bitter. And then two days later it’s 70’s degrees and uncomfortably wet. If I could present our seasons through words arrangements it’s like this:

 

S   U   M   M   E   R R R R Fall W I N TER Spring S U M M E RRRRR

 

So maybe the climate isn’t our major selling point, but I also don’t hate it. Cold days are such a novelty here, and the excitement brought on by temperatures allowing boots and a chunky sweater is contagious. Nothing gets a Southern girl excited like Sweater Weather. Just say those two words to one and watch the magic unfold. It’s true we don’t have four equal and distinct seasons; we have summer with a side of spring or winter sometimes. But we still get a taste of everything it could be much worse. We also get extreme thunderstorms, and I truly love rain. And not just the grey drizzly days. I’m talking intense thunder and lights flickering and those storm clouds that somehow turn up in shades in green. I love those days. Monty prefers to spend thunderstorm time in the bathtub, and I say whatever floats your boat homie.

Anyway I’ve been cleaning the leaves out of the pool with a net as Monty swims despite the water temperature having dropped majorly. To me, this is the quintessential image of Fall at home. Brown leaves floating in an empty pool. It’s perfect. I drag the net through the water and I get these bursts–an urge, an inspiration–I’m not sure exactly what it is. But I think maybe if I were a tree, I’d feel like shedding my leaves. And then suddenly, for one brief clear moment, nature makes sense. I continue to sweep the pool for miscellaneous debris including a Gatorade water bottle that monty dropped in and has sunk to the bottom. Since I don’t have leaves to shed, I went with the next best thing. My hair.

Pardon my selfie skillz.
Pardon my selfie skillz.

I chopped it. And got blonde added to it too. Mostly because, I felt that thing, that very internal tinge of electricity. The thing I think trees might feel. And I had to do something with it. I didn’t even care so much about the outcome once I made my decision. I just had to go for it. And leaves grow back in the spring–my hair grows fast. I’m 29 and I’ve never colored it. I’ve had long hair for so long that it was starting to look sad to me–sick even. It was reminding me of being sick. Suddenly I wanted the weight gone. Something lighter. Something new. As the hairdresser snipped my first 6 inches off, I remember my ex-boyfriend telling me he didn’t like my hair short. I shut my eyes and listen to it all come off. It felt good. It felt great. It rejuvenated me somehow. No more sick hair. Sick thoughts. Time to be happy and try new things. Time to act on positive impulses. Time to finish things I started and stick to things that I know are important. The leaves have fallen and my hair has lightened. (See what I did there?) I feel good about things. Good things are in the works. I encourage yall to make a change too. Do it for me. Do it for you. For Fall. Why not?

Report back. And rock on.

 

Health, Happiness, Fall.

WILD FRIDAY NIGHT

This just happened.

That sounds intense and nothing big really happened so maybe that’s a false setup.

It’s Friday night and I am alone and having one of those days. If my disposition were weather it’d be grey and off and on drizzly. If it were a band it’d be Coldplay. If I were a reality show character I’d be Bruce Jenner in those transition lenses he wears. OK so the point is it’s just been kind of a depressing day. For no particular reason but a few small ones and others I can’t pin down. I’ve had this headache which is also all over my face–for a week– and it’s not responsive to pain killers and it’s not a migraine. My whole jaw hurts blah blah blah. It’s been tough trying not to let the pain get me down. I think at some point it’s not the pain anymore that gets to you, it’s just not being able to offer your focus and energy to other things. It’s like a hangnail. Even a small pain just steals your thoughts, and after a while its annoying and exhausting. This is the point where my friends would make a joke about how bad my headache must hurt because I have such a big head. And then I’d say “thanks guys” and then we’d watch The Kardashians.

Anyway, for someone who loves being alone, thrives at being alone…I suddenly had that empty lonely feeling. And I don’t have it a lot. I really treasure solitude. But suddenly I had that feeling that I was the only person at my house at night and the world was at this party the world was partying and I was missing out and it made me a little sad. You know what the worst part of being single is? It’s not having someone to do nothing with. See a Friday night stayed in and watching crappy TV with someone you love is great. Or it feels fine anyway. But alone, crappy TV can get real sad. The other issue I might have is that I have a total addiction to my dog admittedly and I think it might be a problem. I can’t tell if it makes me the most kickass dog owner ever or the worst human being. I hang out with him a LOT and take him basically everywhere. And I worry about him when he’s not around. I wish I could nonchalantly yell “Oh it’s JUST A DOG” like so many people I hear. When does it become concerning? I think I’ve reached the point of concern, I’m not sure though. Although I DID go on a date last week and we ended up at a bar called the Bulldog because they allow dogs there and I definitely took Monty. But come on that’s normal. I’ve always let Monty pick my men. I’ll tell you about that date later. I guess. I just realized I don’t know who you are or if you’re reading and also why I’m writing this blog about absolutely nothing especially on a nothing night like tonight. But I’m in a careless enough mood that I’ll keep going. I mean clearly I have nothing else to do.

So it’s Friday night and I’m sitting on my couch and there is shit on TV. Alaskan Women Seeking Men, I Hate My Butt!, Last Call With Carson Daly. (How is that show still on?) I’m antsy and looking around at the walls of my living room. Disconnected thoughts are filing in and out of my mind. I consider rearranging the pictures I’ve hung. I consider rearranging the furniture in different ways. I wonder how many headache meds I would have to take in order for the pain to go without shutting the rest of my body down. Too many, I’ll try ice. I consider cutting my hair. I wonder what book I’ll read next. I want to read more. I need more books. Then I look at Monty. He was licking his butt. He felt me looking at him and stops and stares. “Monty,” I say. “Am I the most boring person in the world?” I swear to God, he yawned one of those huge yawns that’s like too large for his face and makes it vibrate at the end. Then he looks at me a few seconds more and goes back to licking things. I can’t explain it but I completely busted out loud laughing. Maybe at the tragedy of it all. How pathetic the night is and how even Monty knows it. Monty comes over, jumps up on the couch and laid his head on my lap. It felt awesome. I know I might have a problem with not pushing my boundaries enough socially and being a homebody and yada yada. But sometimes it’s just so nice; just us two. I know I need to try harder, but honestly, this often feels like enough.

PARTY TIME
PARTY TIME

It’s funny how small we can feel sometimes. When you think about the entire earth and how many people are on it and all the important things everyone is doing you start to question if you’re doing enough. Especially when you’re watching Alaskan Women Seeking Men. I don’t think we were put here just to play around. It’s a recreational world too and we shouldn’t forget that either. But I think it’s time for something new. And maybe that just means a haircut or changing my living room furniture or doing something significant like taking a risk and doing things that aren’t comfortable. I don’t know yet. But for real the seasons are turning and something is turning in me. Truly it was an OK week. I got a lot of writing done and  hung out with my dog a lot and I picked flowers when it was nice outside. I am alone on a Friday night. And for a second that felt awful. And then it all felt like enough. And for now, enough is enough.

Health, Happiness, FRIDAY NIGHT BABY!

Prepare Yourself, This Might Get Sappy.

There were a few things I was going to write about this week. One was a response to an article that’s gone viral about why Generation Y is so unhappy. I almost wholeheartedly disagree with it, but I couldn’t finish. The second post was a “Breakup Playlist” that was really just a list of happy songs I composited that get me excited and I can’t help but dance to when they come on. And sadly, yes, a lot of the dancing I do these days is alone. But I enjoy it so lay off! The third was an observational piece about how impersonal life can be in the digital age of social media, where so many things are taken at face value and how someone’s online presence can be so far from the person they actually are yada yada yada. I began writing on all of these topics as my scattered mind couldn’t focus on just one, but there was something more important that kept nagging at me while I worked. Finally, I pulled the plug on these ideas. I’ll work on those later (unless they end up terrible which right now they are), because this post is for you, the reader. Because even though I sometimes have these grand ideas I I can’t wait to unleash, sometimes something else comes knocking and demands to be written. At that point there’s not a lot I can do except listen; type out the words and let my heart do the talking. There’s plenty of time for break-up playlists. This was something I needed to say now.

I’ll be honest, having a chronic illness, especially when it’s at its worst like it was for me most of last year, can be terribly lonely. As much as I love my friendships and romances and strong family bonds, it’s nearly impossible to keep them all up when you’re sick. One but more likely all of them will suffer. Last year the relationship I was in ended and as my health steadily declined, so did my social life. I remember just not answering the phone when it rang. I felt like I didn’t even have the energy to explain my mood, my condition, or apologize yet again for being a crappy friend or sister or whathaveyou. One of the hardest parts of the illness has always been what it’s done to me and the outside world. Last year was a dark one, but I was lucky enough to have family who took me in, and friends who were understanding when we went months without talking. I always liked that definition of a friend- someone who knows you but loves you anyway. :) I’ll say that being sick sort of dwindles down who the key people in your life are. Some survive the storm and some don’t, and it’s not really anything personal. Some people have needs you’re not able to meet with a condition like this, and truly you can’t blame them. I am an admitted flake, terrible at keeping up and correspondence, and I cancel at least half of the plans I make. This is mostly the fault of the illness, and it’s understandable why not many friendships are upheld through it. My circle is small, but I love everyone in it dearly, and they certainly love me back considering what they tolerate.

I think last Fall was one of the hardest times in my life. I was living in my sisters house in California. Home away from home away from home. I initially planned to go there for a month, but when my crash worsened and things like walking became hard, I ended up staying until Christmas, and everything felt out of control. Because it was. I was a difficult person then, and I feel a little bad for my behavior. My sister would always ask me to go eat dinner with her at my brother-in-law’s restaurant, but the thought of small talk with people I didn’t know was overwhelming. Sometimes it put me in a bad mood just thinking about it! I actually preferred being alone. I often felt more alone when surrounded by people but completely isolated on the inside. I hated who I had become–such a solitary hermit. But I truly just didn’t have the energy to even be polite. It was easier, and better I think, for me to just stay home. Which sounds terrible and depressing. Healthy people won’t get it. But truthfully relationships of any kind take work, they are two-sided, and I just didn’t have enough to give at that point. But the real reason I’m writing about this is because, beyond all the crappy days and reclusive tendencies, there was this community built on the blog. People reading it and commenting, people sending emails of gratitude or support or encouragement or all of the above, and it was truly remarkable to receive feedback like that, especially at a time where I felt really alone. I knew there were others like me and I wasn’t suffering alone. And although I didn’t know any of you truly, I knew of you because you reached out and were honest, and I read every word. It meant the world to have complete strangers rooting for me, some in other countries. It felt incredible not purely for personal reasons, but because I saw just how much positivity and love and support could be garnered by so many people who didn’t even know each other. It still gives me chills to this day; it shows what can happen when human beings come together for something good and optimistic. I think we’re all looking for a reason to be good. And while no, it didn’t cure me or fix all the problems, it did give me a real sense of hope that I could get better, that it wouldn’t always be like this, and even at times that if I never got better, this wonderful energy was still created and circling around the world. I didn’t do it, we did it. We put that out into the universe, and there’s something kind of magical about that. We’ve created some good together, and I think it’s something to be proud of.

Last week I posted about a promise I had made to myself years ago: that I would celebrate my 30th birthday in Paris. When I read people’s responses and support and encouragement for me to do something purely because it would make me happy and in turn, them happy, I felt the most love I ever have laying in bed and looking at a computer screen. Strangers telling me to go for it, that they’d donate money for me to do it, and insisting I go regardless of circumstance, was truly inspiring to me. I felt connected and after such a crappy year last year and feeling so far on the outside, watching everyone else live their lives while I felt like I was crumbling internally, that was such a powerful thing for me to feel. And needed to feel I should say. It’s easy to get stuck on your story, to live life from the outside looking in, to let things pass you by. But after seeing such a positive reaction from people, and seeing how me going after my dream and living with purpose was encouraging others too was simply unreal. But mostly, it was an inspiring and and abundant source of love to feel on my end. And that’s stuff you just can’t buy or put an amount on. It is truly priceless.  So for that I want to say thank you. THANK YOU. THANK YOU A LOT. I felt a very long time ago that this blog wasn’t really just about or for me. It was for something greater. And I know that now more than ever. It’s about all of us.

As summer turns into Fall, (unless you’re in New Orleans in which case it’s still 90 degrees and there’s a tropical storm headed our way) I am reflecting on where I was last year at this time. I had no idea that some of the hardest months of my life were about to unfold. And in the darkest of times, moments where I couldn’t find myself in the world, I would always come across the words in a comment or an email from a reader that reminded me of something very simple but very important– I wasn’t alone. And if you’re reading this now, going through a hard time caused by anything- health, heartache, loneliness, insecurity, whatever- I hope you’ll know that you aren’t alone either. It was in those very dark but small moments, that the tiniest crack of light would shine in and let me know, we truly are all in this together. We’ve all got our battles, and we all experience things that make us question who we are and where we’re going and if we’ll ever get out of the hard time we face. I’m here to tell you, you do. I did. Many times actually. And the hard parts aren’t over. I am relatively young and life won’t stop throwing boulders or pebbles across my path. (If you’re listening God, I prefer pebbles. But, you know, do what you gotta do.) I just feel that one of the most important things that could ever so slightly drag me out of the dark, was this interconnectedness I’d feel with humanity, even though I had no social life…at all. Granted my sister tried, but I was mostly a grumpy curmudgeon. Sorry Amelie! Anyway, things have gotten better. My health, while still a major hurdle, is not nearly as bad as it was this time last year. I’ve reunited with friends. I wear pants a lot more now. ;) But it feels good to know that while last Fall was let’s face it, a shit show, I re-emerged. As we all do and will, if we can only hang on, remember that nothing is forever, and as lonely as it can feel, we are never truly alone. I mean it. And I’m alone a lot!

So, that’s it. Among all my other ideas, this one wouldn’t leave me alone. And I want to tell anyone reading, I read every comment on this blog and every email regarding it. I don’t always respond (I told you I’m a flakey friend and terrible with correspondence!) but I honestly take time and read all the feedback sent my way. And I LOVE hearing from everyone. The funny thing is how many emails begin with “I’m sure you get thousands of these but…” I assure you that’s not even close to the case. A few a week at best!! All of you have your own battles and wonderful, sometimes sad, sometimes hilarious, stories of tragedy and triumph, and I relish in reading them. I wish there was a scientific or spiritual way for me to prove or convey this, but all of that positive and loving energy sent my way goes right back into this project and the world at large. It’s such a cool community we’ve set up here. Remember this all started with two followers: my sister and my aunt Amy. And look at us now! :) Thank you for reading, writing, laughing, and crying with me. The community we’ve built is invaluable, and I always turn to it when I feel myself leaning towards seclusion or sadness. I hope you do the same. Because half of writing anything is having someone to read it. I think we’ve done well. Again, a million times over, thank you.

momo
Monty was very excited to take this photo.

Health, Happiness, Merci.

*P.S. On September 26th, this blog turned two years old. Yaaay.

The Paris Promise.

Have you ever promised yourself a gift? Something unnecessary, something perhaps even excessive, but something just for you, from you?

When I was 22, I left America to study a spring semester in France. I had always been drawn to Paris– the French, the language, the lifestyle–but I could never pinpoint why. I just felt I needed to go one day. I became so philosophical about wanting to go there and not understanding what was fueling my desire that finally I called my brother Nick in a strange self-induced panic. “I want to study a semester in France.” “Great!” he responded. “But I have no idea why!” A pause. “Who cares?”

It was my freshman year, and I often called Nick with my college-born troubles. I remember him telling me with such sincerity, “Mary, don’t think to hard about it. You want to study in France, so study in France! You’ll know why once you get there.” He was correct. Three and a half years and a crap-ton of paperwork later, I packed two ridiculously sized suitcases and prepared for life abroad.

Technically, the timing couldn’t have been worse. I felt very troubled leaving. It had been one of the hardest years of my mom and I’s life. Just less than a year earlier my step-dad died suddenly, and everything sort of stopped. None of us were prepared for that. As if that wasn’t hard enough, a few months later my black lab Brusky, who had just turned one year old, developed an infection and also died suddenly. Brusky was one of the only positive things my mom and I could count on that year. When things became intense or overwhelming or sad, he’d always do something to make us laugh. He was truly a wonderful dog. He was my sunshine. And when he died that morning, I really felt forgotten. There was an empty feeling of chaos inside. I watched the world spin on but I felt stuck standing still. I was jealous of happy people. I was doubtful for our future. And I was losing faith that we could ever be happy again. It was partially the reason I went to France. At that point it felt like I didn’t have a lot to lose.

But I was the last kid left in Louisiana. Most weekends I drove home from school to be with my mom. There are so many logistical things to tend to after someone dies. Just cancelling his cell phone with AT&T took months and months. My mom always told me to stay at school. That I didn’t need to come home and that she’d be fine. But when you see a parent lose someone they love, you see a piece of them go too. She’s tough, and she rarely reaches out for help. And that was mostly the reason I went– so she wouldn’t have to. When I received the acceptance letter to a university in a small town in France called Besançon, I was immediately excited and then immediately distraught. How could I leave my mom at such a pivotal time? She insisted I go. Insisted she’d be fine. The last thing she wanted was for Roger’s death to hinder us. I grappled with the idea of staying and the idea of going.  Finally it felt like I had to go. If I stopped exploring, learning, living, loving, trying, then I’d have let fear and doubt and melancholy take over. We had to keep living, both of us, and maybe while I was gone, something wonderful could happen to her too. It didn’t make our goodbye at the airport any less sad. I held it together as best as I could, but still I felt the fear and the doubt and sadness right there on the surface. We hugged goodbye and I prayed all the way to Paris. It was the only thing I could do to keep my confidence alive in a decision that I wasn’t outwardly sure about.

Once in France, my brothers words rang true. Meeting amazing people who are still incredibly close friends. Watching the first snow fall. Cafe au lait and croissants and vin chaud and ridiculous business hours and cafes and little French children. It was perfect. All of it. I fell in love. With the country, with a boy, with my friends, and my life there. “This is why,” I thought. I’d found my answer. Something in my soul must have known I’d find happiness there, at a time where I’d forgotten what happiness even looked like. I lived in a space maybe half the size of my bedroom now with a twin bed and a desk, and I have never been happier. Best of all, I felt vibrantly alive for the first time in a long time.

Happy, oui.
Happy, oui.

Not only that, but while I was gone, my mom said yes to a coffee date, with extreme hesitance.  A friend convinced her it was only coffee and so she went. The coffee date turned into a dinner date. Which turned into an every meal date, and falling in love and happily ever after. Would that have happened if I would’ve stayed? We’ll never know, but I’ll always wonder.

When leaving after an adventure like that, you make a lot of promises. You think you’ll go back. You think you’ll stay in touch with everyone. You’ll carry on traditions. But these are more optimistic than realistic. The real world resumes on when you return. (It’s awful!) Although I made two best friends there, one of which is My Stupid Friend Jess, very few of us stay in real touch. We reminisce. We get sad when we think about the fact that if we all went back now, it wouldn’t be the same. Our experience was wonderful, carefree, spontaneous– but impossible to repeat. It was five and a half months of not living in the real world as we know it. School was very easy, teachers were lax. They encouraged you to immerse yourself in any and everything, and if that meant missing class, pas de probleme! I loved it. It was truly perfect.

But I did make one promise that I have always intended to keep. I promised myself that I’d return to Paris and celebrate my 30th birthday there. I’ve thought about this promise throughout the years, and I think over the last two years I’d sort of lost hope and resorted to the idea that Paris wouldn’t happen. But when I turned 29 this year, that promise seemed to reignite inside me. I realized it’s only impossible if I say it is. I have a year to make this wish come true. I have no idea why I made the promise for my 30th birthday. I probably assumed I’d be wealthy and successful by then. Hahaha!!! Life is funny.

So I’m not exactly wealthy and successful (yet) but I still have 10 1/2 months until my 30th. A lot can happen in that amount of time. I know that work is required of me. I know there is a way for me to have this illness but still contribute in a meaningful way and support myself and Monty and pay back all the debts I’ve incurred along the way! I truly think it’s possible. I constantly see items on TV or in magazines and think ah, when I’m a millionaire, I’ll totally have a temperpedic mattress and my own jet for travel so I’m not subjected to modern commercial air travel. They are fantasies, sure, but something tells me they could really happen. It’s not like this type of success doesn’t exist. It’s not impossible! It’s just going to require getting creative. Most people don’t make millions from bed, but it’s not that far off the radar. I mean the Kardashians did it!

Anyway, I don’t have the money yet but I haven’t aggressively tried to get it. I’ll need to strategize. And maybe I won’t be in great health, and it will be different than last time and I won’t be able to walk the city as freely. But I’m going to turn 30 no matter what. Here or there. And if I’m sick here, why not be sick there? I don’t mind being sick in Paris! And if it’s just me, alone on a terrace, watching the Eiffel from afar, that’s great too. As long as I am choosing life, and honoring my passions and keeping my dreams alive and not stifled, I don’t think I can really go wrong. I don’t know how this is all going to fall in place, but somewhere deep, someplace where I once felt that initial drive to go and didn’t know why, I feel that it will happen. And if I keep letting the illness infringe on every dream, I’ll never get anywhere. Things will stay the same. And  once you stop dreaming, what is the point really? This was a promise I made to myself. Not for a boy, not to prove anything, just a gift I promised to my soul. Last time I left, it was a troubling time and I was uncertain, but once I arrived it all made sense. It appears to be that way again.

The only question left to ask? WHO’S WITH ME?!   :)

La Santé, Le Bonheur, et La Promesse

 

The Eighty Year Old Twenty Year Old

How come no one ever warned me about how hard your twenties are?

Well first, let me say hi. I returned last week from a medicinal tour of America. Yeah! I had to see my doctors in Colorado and Miami–Which means I had to take part in modern American air travel which means I felt like crap a lot. I went to Colorado and felt absolutely terrible the whole time I was there. The funny thing is, despite feeling awful, I had a really great trip. I stayed with my grandma at her assisted living residence. But judging what my days were like and what her days were like, you’d guess I was the 83-year-old and she was 28. She lives a very active, involved, and social life. She wakes up by 5 and it seems like she doesn’t stop until she sits in her recliner chair at night. She can hardly keep her eyes open through the news. Me, I slept mostly. She brought my food at normal food hours and finally after being completely fatigued and short of breath for 3 days, my uncle Mike hooked me up to her oxygen tank she uses at night.  So I looked like this most of the time.

 

Air please thank you.
Air please thank you.

The extra oxygen helped, but I was still out of sorts the whole time. Weak, Dizzy, Fatigued Yada Yada Yada. Luckily my grandma is one of the easiest people to be around. We talked a lot while I was there. I love hearing her stories. I love how happy she is at her age. I love that grandmas exist. I used to fear growing old, but watching her, I don’t anymore. In fact, I’m ready to stop being young and stupid.

I ask about a warning I never got because this Saturday I will turn 29. The last year of my twenties. It seems typical to freak out a little when the big three-oh approaches on the horizon. I sense that a bit. But at the same time, my twenties have been really hard. And nobody warned me! Though I don’t know who would, and it wouldn’t really make a difference would it. There’s been tragedy and heartache and some things I didn’t think I’d find my way out of. But, alas, I survived. I laugh because the more people I ask about their twenties , the more I hear people say that those were some of their toughest years. In fact most people said their 30′s were great and my grandma insists your 40’s are the best. Hers were anyway. I don’t know what makes them so, tortured, your twenties. Mine have felt mostly uphill. You know how babies go through the “terrible twos”? Well maybe your twenties are the adult version of that. I think it’s an odd time. You’re no longer an adolescent at all, but the college experience isn’t quite a real-world experience. I went to a University of 30,000 people, but still, it felt like a bubble. After leaving, it felt a little, anti-climatic? It’s like you’ve got all these credentials to prove that you’re an adult now, and the world expects that from you. But there’s still so much to figure out. Then again, I guess everyone is still trying to figure it out. The most important thing is to figure yourself out. I guess by your 30’s you’ve got a pretty good grasp on who you are, and that makes things easier in general. Have you ever hung out with someone who is unsure of themselves, who needs approval for everything? It’s exhausting, and it stems from not having a good hold of themselves. Sadly, we’ve probably all been there. I have to say that not really having my own home or my own money sort of stripped down my identity. I had to start over in a way. It was humbling but it also helped me get to know myself better. When you lose all these external things, it forces you to go within.

Then again, I can’t deny that my twenties had some amazing parts to it. I fell in love for the first time. I lived in France. I published my first article. I traveled and I made incredible, life long friends. I wrote a blog that became bigger than me. It’s had its perks. But I must admit, a part of me is banking on it getting a little easier in my 30’s. Like I’ll really get to enjoy all the wonderful things I’ve gathered with me along the way. A girl can dream.

A few days ago, I found a journal that my dad kept. It feels like I found lost treasure. Of course it’s always extra special when you’re reading someones written words after they’re gone. I read it with such a sense of wonderment. I was only 12 when he died, so I wasn’t really able to experience who my dad was an adult. I feel sad to have missed out on it, but at the same time, reading this journal has helped me to know the man I wasn’t able to know as a kid. I admit I completely idolize my father. It’s easy to do–he was a wonderful person and anyone who knew him would tell you that. He was a lot of people’s best friend. I’ve only ever heard of the wonderful things he did and the amazing person he was. I remember him yelling only once, and that was at my sister for not eating the disgusting buckwheat pancakes he cooked for breakfast. That night he bought her yellow roses, apologizing for having gotten upset.

In other words, he was Mother Theresa. And I often wonder if I am living up to how good he was or how generous he was. Furthermore, I compare other people to who he was, setting a really high bar particularly for the men in my life. Which is for the most part, good. It’s fine to have high standards. But sometimes I wonder if the bar is set so high that no one could live up to it. I need to remember that my dad was still human. He got upset sometimes. He judged people sometimes. He even cursed at our dog Bacchus while throwing rocks and chasing him down the street in his suit and tie. He slipped up like we all do, and I need to remember that. Reading the journal has brought to light the very human nature of my dad that I sometimes forget was there. The best part was, in the journal he describes each of my siblings and me and what makes us each unique. There on the last page were his words about me. Reading them was such a gift. It felt like I was sent an early birthday present, from somewhere over there. :)

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Anyway, I’ve become a little distracted. I try to write but I just feel more an urge to read.  Which is OK so long as this doesn’t turn into a writing breakup. I need to stay focused. But it’s been gloomy and grey and rainy out–so it’s perfect read and nap weather. Know what I mean jellybean? Anyway, all this reading and napping jazz has me worn out. I’m off to dream world.

Health, Happiness, Twenties.

Life In My Parents Pool House

So if I die I want that to be the name of my memoir. Isn’t is perfect? It’s funny yet sadly true. A sick girl-turned-woman living in her parents pool house and on their dime. With a dog. Wait am I a girl or a woman? Now I know how Britney Spears felt when she sang that song. In any case, it sounds like a Fairytale to me. I wonder how this one ends.

What I’m really getting at is that life in my parent’s pool house is great and I recommend that all 28 year olds or young adults in general try it. I had my first night in my new place three days ago. Waking up the next morning in my bed, in my own house was basically spectacular. You have to understand it’s been 2.3 years since I’ve been able to wake up under those parameters and having to wait so long and go through what I did has made the moment even sweeter. If felt like finally exhaling after a ridiculously long tunnel. I laid in bed for the next hour with a pure feeling of gratitude, and that’s all I can really do in these instances. Breath, reflect, take it in and give thanks. If you don’t they pass you by, and you find yourself years later realizing how good you had it only in retrospect. I realize how lucky I am to live in a beautiful house, to call it my own, to have a pool, and to be given help and time to heal, when my givers know I can’t really pay it back. I guess that’s what you call love isn’t it. Did I mention Monty loves it too? He’s also deathly afraid of the polaris but not enough to stay out of the pool.

Woo!
Evil Polaris EVIL POLARIS

Moving into a house when you’re a sickly takes a very long time. Also having this month-long headache still isn’t helping, but who’s counting? I was overeager in the beginning. I wanted to set up every room and unpack every box and start painting walls all on the first day. It took a little overdoing and paying the price later to realize OK, this needs to happen one room at a time. Sometimes one piece of furniture at a time. And mostly one drawer at a time. It’s ridiculous to me how many times I have to learn that lesson. That overdoing it will be costly and painful, and yet I continue to overdo it and pay the price. And the funny thing is, most people I speak to with this illness (like my mom and everyone at the support group) say they do it constantly. You’d think we’d learn after all these years. We’re a bunch of stubborn dum dums!

Anyway I think the most exceptional part about living by yourself is the amount of time you can spend without pants. Like that first day, after I spent the hour of gratitude in bed, I got dressed and began unpacking and organizing and having these grand fantasies in my head like “And in this room I’ll have scrabble tournaments and in this room I’ll serve afternoon tea.” All of which will probably never happen. After a while my pants were really beginning to bother me. Don’t ask why–sometimes it’s noises and sometimes it’s clothing. And then it struck me that I could take my pants off and keep unpacking because THIS WAS MY HOUSE and at my house PANTS ARE NOT REQUIRED. So I took them off and unpacked in my underwear and soaked up the amazing feeling of being able to do what I want in my own place because I make the rules now. Yeah! Other rules include:

  1. No Bill O’Reilly (Not even an option because I’m poor and don’t have cable but still)
  2. Peeing in the Pool Is Actually Allowed. I know you’re going to do it anyway and come on, we use strong chemicals in there.
  3. No guns.
  4. All dogs allowed! In fact, no humans without dogs.
  5. What happens at the pool house stays at the pool house. Like swimming. And scrabble.

So basically, there are no rules. I just want it to be a happy place and an open door to the people I love. I can’t guarantee I’ll be wearing pants, but hey the world has bigger fish to fry. This other cool thing happened while I was touching up paint the first day. I found my ipod from like 5 years ago and thought I’d play songs on random and be entertained from my 5-year-old playlists. The first song that came on was “Let It Be” by The Beatles and I totally stopped what I was doing and belted that song as loud as I could. I’ve heard it so many times before, but suddenly all the words felt like they were being sung just to me and my life. The lyric that really spoke to me was There Will Be An Answer. Because there will be. One day. Maybe not for many many years, maybe not even in this life on earth, but we will see what our lives mean in the grander scheme of things and we will get an answer to our pain and sorrow. I dream about that moment of clarity and revelation all the time. In the meantime, we just have to hang on. Pick up the pieces. Keep going.

Anyway, I played that song about 6 more times really really loudly and sang it really really loudly because that’s another rule: You can sing as loud as you want. Standing in the kitchen. In your underwear. In fact I recommend that’s how you do it. So below is the song Let It Be and I suggest you play it and belt it and let those words remind you that everything is OK. Even though, I know it’s not. My life is a mess. The world is a mess. I watch the news and I see it. I see war and poverty and violence and corruption and it all makes me feel very small. Very powerless. All I am is a sick kid who calls it a success if I take a shower frequently enough. But it reminds me of a quote from Joseph Campbell. He says:

“When we talk about settling the world’s problems, we’re barking up the wrong tree. The world is perfect. It’s a mess. It has always been a mess. We are not going to change it. Our job is to straighten out our own lives.”

It’s not the most romantic theory about life, but it can be reassuring. When I think about what the world has evolved from, (think even from the Civil Rights Movement to present day) it gives me hope that we will continue to grow. It’s all going to be OK. We’re here. We’re awakening. We’ve survived this much, and that’s what we’ll continue to do.

Health, Happiness, Pants.