Confronting Change You Can’t Control (Part 1)

It could always be Great. 

My mom told me to write that on every wall and mirror around the house. I was on the phone with her, basically in a downward spiral of apprehension about a major change happening this year that is mostly out of my hands. Allow me to rip off the band-aid: My parents made the decision to move to Colorado this year, back to my hometown. Pause for dramatic effect.  

Many reasons played into that decision, a big one being that a majority of my moms family lives there and we will have a tighter community of support. Given that 2/3rds of our fam is sick and one family member is a dog, the move makes sense. It can be a tad isolating out here on the ol ‘farm’.

My moms casual reminder that it could always be great was a nice departure from the supposedly optimistic adage “Hey, It could always be worse!” I’m not sure that phrase has ever really made me feel better while in the midst of a struggle. It’s like “Well hey, both of your legs could be blown off!” “Riight. That’s true. I could have zero legs right now. Cool, thanks. I feel better.”

So yes, I have both legs, but I am still pretty afraid of the whole thing and I guess that makes sense given the scale of this. It’s a big change, and since I don’t have the health to live on my own yet, it’s one that’s out of my hands, which always adds a pinch of frenzy. I’ve sort of tortured myself thinking of ways to stay here, but I just don’t have the physical stability to do it. This last crash that’s held me down since Christmas just reinforces how mercurial my *health* is and how unreliable  I am as a result. A few weeks ago the crash finally let up for roughly a week, then returned angrier than before, and I’ve been essentially a half-living disaster since then. Yeaaaah wooooo! 

You can see how thoughts like that (I’m sick, my life is chaos, I don’t have jurisdiction over my own life) can play with your mind the way a cat bobbles a feathery toy around. It can take your whole outlook and shape it in many variations. 

One of the hardest parts the last few months has been maintaining an open mind that this might actually be a good thing. It’s meant a lot of reigning in of my thoughts, which tend to go default mode into armageddon type thinking. It’s as though some small part of me decided early on that since I didn’t choose this, it wasn’t a good idea and it would end in disaster for my life. And it’s pretty crazy how easy and quickly those thoughts can assemble, pile on one another, and leave me completely convinced that I’m going to melt away and die in my parents basement…or some other absurdity. I don’t know where that fear stems from—I mean I’m pretty sure they have internet in Colorado. 

I’ve had to work to clean up the useless, unhelpful thoughts that tend to mess with my mind and sense of wellbeing. By that I don’t mean I dismiss all the thoughts or feelings I have about this—which are of course, a lot. Certainly there is a legitimate sadness and type of grief that comes from leaving what’s been home the last 18 years. Those feelings deserve their own validation and processing because, damn, it’s sad to leave the people and place you’ve come to know and love so much. Louisiana has felt familiar and comfortable for a long time, and it will be tough to leave, even if I do plan to come back. ;)  

What I am referring to are the haunting thoughts, the ones that make you feel bad about things that are not within your control.

This kind of thinking totally blurs and limits my perspective about the life I have. It dismisses all the good and incredible parts of it, doesn’t see possibility or feel hopefulness or gratitude. It downsizes the significance and value of people and things just because they aren’t in line with what I had planned. (I think humanity might have an addiction to plans but that’s another day) These are just hypothetical scenarios based mostly on fear and a future no one can actually know. Like Tolle says, it is always more empowering to face facts. Even when the facts are scary or we wish they were different, it’s in acknowledging the real and being present in the now that we have access to our innermost power and strength. 

I realized early on how incredibly contrasting the outcomes are that emerge just from framing things in my head one way vs. another. This is something I do have control over, and it’s become pretty important that I put this ability to use, otherwise the ugly thoughts take over and down the rabbit hole I go. 

It’s been a good but difficult exercise to step back and try to just watch the way my mind can interpret the same reality in two completely different lights. The modern mystics would advise to consider the circumstance from the point of view of an objective observer. Watch your thoughts, but don’t become entangled in them. Allow them to appear, then let them go. Easier said than done, of course. But at any rate, the mind astounds me in its duality. For instance..

Here is one side of my mind thinking about the move: Reiterate the story that my life is out of control, that the disease makes all the choices, that I have no say so about things and thus can’t really be happy because it’s not up to me. My personal growth and goals and contentment will all be stunted or I’ll cease to pursue them because my lack of health and other people have the wheel and I’m just a passenger to my own life. What’s the point in trying? As a passenger I don’t decide where I go and thus my happiness isn’t my option but one left up to others or whatever new circumstances materialize without my consent. I don’t want to go. It’s not fair I have to leave what feels like home. What about my family and friends here? What about my dream to live in uptown New Orleans one day? Now it will never happen. I guess I’ll go eat worms. 

I can’t tell you how easy it was for each of those negative thoughts to formulate, one after the other, building on each other like a lego tower turning into a whole city…

Now here is my mind consciously thinking about the move: Colorado? That’s cool, I guess I’ll get packing. 

Could the differences be that dramatic? And is it actually possible to participate in your own life that way?  In The Untethered Soul, Singer makes the point over and over that of course it’s possible! We don’t always decide what happens, but we always the ultimate say so in how we react toward the circumstances of our life. And it’s those decisions, not what happens, that leave us either content, at ease, joyful, whole, or bitter, angry, jealous and depressed.

All it took was a few negative thoughts to quickly unravel into my making the choice to play no part in my own autonomy or the trajectory of my life. Just because I’d be living somewhere else, I removed myself from having any accountability in manifesting a life I wanted or that I could be proud of. That’s a crazy conclusion to make! But when you’re present and you actually break down your thoughts, you see what a huge majority of them are insane and simply need to be let go of. That’s not so easy when you’re hit with an onslaught of frenzy and angst, like a whirlpool that takes you down, where there’s no clarity.

So I have to practice at disarming the egoic force from taking over in my head, which I do by sword fighting the air with a Star Wars lightsaber. Just kidding. Like Tolle teaches, whenever I have a future based thought made mostly of fear, I replace it in my mind with facts that are actually true. I try to repeat positive reminders instead of playing a record of apprehension on repeat with a sad ending.

In other words, I do the thing basically all chronically sick people must learn to do at some point: surrender.

As always by ‘surrender’ I don’t mean give up–ever. I mean to leave a neutral space open in your heart and your head where good things can happen because you allow a new path to be paved even though you didn’t design it. If I had understood earlier on in my relapse that reality doesn’t really care about your plans, I might’ve saved myself a good deal of pain from what was already such a hardship. I thought I could fight things that were already in place and moving quickly forward. Life was just waiting on me to catch up to what was real, instead of trying so hard to hang on to the way things were.

All I know is that there is a pulse to life, a certain beat that resonates deep within us as individuals and as a collective. We can typically feel through that pulse a general sense of what direction life is moving in. We can resist. Be the fish swimming upstream. Or we can lean in and greet life with an open and adventurous spirit, despite limits and changes and things beyond our control. It’s true I am afraid and I’m sad to leave what I thought would always be home. But I have been shown over and over the miracle of surrender, of allowing life to ‘move me’ and the amazing outcomes that can result when we feel fear but move forward anyway. It always comes down to following that thumping compass we hear deep within and far beneath us.

Here’s hoping that it just might be great.

Health, Happiness, Hello Colorado

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Why Is It So Hard to Pee Into Those Urine Sample Cups?

Is it just me?

If it is, then I should feel pretty vulnerable and embarrassed after this. I’m sorry mom. I really do try and make you proud.

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It’s hard to say but I don’t think so. I do think requires more skill on behalf of the woman, I would think. Then again I wouldn’t know, I’ve never peed into one of those “specimen catchers” standing up. It seems like all you have to do is aim and shoot. Though I imagine splash-back could be a problem. Also I’ve heard dudes talking about the “split stream”, which would make producing a clean catch pretty tricky. But that happens to the lady folk too. So I’m a making a leap of faith in assuming I’m not the only one who has issues here. Right? Guys? Right guys? 

I’ve had to give so many urine samples via those small plastic lidded cups over the last ten years, you’d think I’d at least have a technique mastered by now. But there’s just so little prediction in the direction that things will go once the golden exit begins.

You know the order of operations. First you go a little to see what direction your body has decided for the sample to go that day. Cool, you have a good idea. Place the cup in position. Aaaand begin. Aaaaand what is happening. 

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Somethings gone wrong.

It starts to go awry when a renegade stream breaks off from the group for no reason at
all.
Whyyyy. I can’t yell at my pee mid stream and direct it on where to go! It doesn’t respond to verbal orders or worried yelling.  Why would half of this small waterfall decide to break apart from the its fluid crew and travel backwards? Return to the team you idiot!

 

Obviously, things don’t get better from there. The cup can’t catch the rebellious run off and the original stream simultaneously because they’re too far apart, so now I have to guess which one has a higher volume and catch that one. And because I’m indecisive, I start to get a little panicky, I can’t tell which is better. Now I’m going back and forth with the cup between streams because I’m worried the collection isn’t enough, and I’m right. I often miss more than I catch in the chaos. Great. Now there’s pee in places I’d rather there not be pee.  It’s just my hand don’t freak out. (I’m talking to myself now) I mean urine is sterile, so I hear. That was the whole point of those deep breaths I took before beginning the process. You can do this Mary, just pretend it’s a game at the carnival, you’re a competitive gal.

I liken the stress to that of being on a motor bike and panicking that you’re going too fast but in the frenzy you keep hitting the gas, gunning it, instead of the break. You increase in speed until you crash and your shoe flies off. That actually happened to my friend Cody and I once. My shoe really flew off!

Anyway I guess it’s just the stress of getting it right and knowing there’s a limited amount

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The Hell is she doing in there?

of material to work with that I end up internally yelling with my head down “WHAT. IS GOING ON DOWN THERE?! GET. IT. TOGETHER!” It’s like yelling at some kids I’m babysitting who I can hear are misbehaving in the basement. I hope I’m not accidentally
yelling that out loud in the stress of those 30 seconds. I can just see the nurses faces upon hearing the racket inside the bathroom, shaking their heads in resignation, Where did we go wrong with our children?

Now I have to place the cup on the counter, but why is the counter always wet? Is that someone else’s renegade pee? Impossible to know. Also, eeeew. So I awkwardly wipe down the counter, (still squatting on the toilet by the way), place the cup down, screw on the lid, make sure that’s wiped down and examine my sample. It’s like I want the nurses to be impressed with it. “Wow, did you check out Gelpi’s specimen cup? Not even a droplet on the outside!” I realize they’re wearing gloves and couldn’t care less about any of this.

Then you open that little stainless steel door to drop off your cup, and you see all the other specimens. Woah! I’m always surprised by the array of yellow colors that make up peoples urine. It’s like 50 shades of pee in there! I can only hope mine is the right shade of neon.

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This is clearly Ms Gelpi’s perfect clean catch. How DOES she do it!?

It feels like an unnecessarily stressful event that I’ve had to do so many times, I just can’t figure out why I’m not better at it. Is there some method I’m unaware of? I had to give a sample yesterday just like I did last week and the week before that and a month before that, for all kinds of fun reasons. And still, I entered that bathroom, wrote my name on the cup, took a few deep breaths, and once again the urinary chaos began.

At least this time I didn’t fall. Yes, that is a true and exceptionally unfortunate story. It happened in the E.R. and I’m pretty sure they gave me a horse tranquilizer or something close to it prior to calm down the excessive adrenaline. I was in SVT (Supra Ventricular Tacchacardia) and flopping around like a fish out of water. Then I was tranked and expected to give a sample without help! So yeah, I fell. Let that image settle in and make the rest of your day happy.

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Wait, where am I. 

Anyway, maybe I’ll develop a better method over the next few months. Or maybe giving urine samples will always just be one of those things we all have to do that are oddly more difficult than they should be, like hanging curtains. Don’t worry, because I know you might, I’ll let you know if there’s improvement. Stay golden yall! (I had to)

Health, Happiness, A Clean Catch

Lost: Life Force. Answers to ‘Mary’

*I Wrote this last week. I’m feeling better now ;)

Universe, God, sky, grey clouds, screeching frogs outside– helllp meee. Someone drained my life force in the night, and now I lack the will power to even use an exclamation mark. Not sure what happened. But I couldn’t go on letting myself be buried by the wet blankets of my mind. I had to do something. Something positive, and fight back against the road to stagnancy. I felt like I was slowly turning to cement! Hey look there, I used an exclamation point. 

Of course the weather is that in between weather that makes entire cities look like they could use therapy. Not sunny, on the cusp of rain but not raining, just a wet, grey, dish rag that drips sometimes and peeks the sun out in others and never definitively decides what it wants to do. So, can’t rely on the weather to help put humptey dumptey back together again. Find something else. 

I would bathe but I don’t have the energy. My arms are getting weaker. I need to lay down again. I’ll try to think of good things. 

***

OK, I’m back. It’s been almost two hours. I didn’t sleep. My willpower seemed to be dropping like a heartbeat beeping slower and slower on the heart rate monitor. Beep. Beep. Beeeeeeeeeep. She’s a gonner. It’s like all the feel-good, or feel-right chemicals in my brain have truly drained. The stuff that makes you want to go and do and play were drying up. Or already dried. 

While I’m a little weak, a little dizzy, the residual migraine still thudding behind my eyes, it’s not my body making today so hard. Well maybe that’s the setup for this mindset, but it’s calming my frenzied mind when I have no physical ability to match it that feels impossible to do. Keeping your mental sanity while waiting on your body to come back to you is probably the hardest part of all of this—a challenge that needs constant knowledgable reminding about from people who know better. I’m amazed how easy it is to forget simple truths. Clearly I’m still learning. I guess that should probably always be the case, if only I were a bit quicker at picking these things up. 

I feel the need to do so many things, but most of them aren’t doable right now. Then I feel doubly bad about not being able to do what needs getting done. I guess that’s why I’m sitting at this chair and typing, because writing is one thing I can do. 

I have learned that you can fight back against days like this. Despite nothing sounding good—for example, no type of music sounds decent to listen to, and the idea of watching TV or a movie feels even more depressing. (During the day) Even reading the book I’m thoroughly enjoying (19Q4) doesn’t feel right. I read fiction at night. None of these give the impression they would fit. If I were healthy I would go for a run, or to the coffee shop, change up the scenery and get those endorphins going. But since that’s a no-go, it’s another creative challenge to figure out that comes with the territory.

Sometimes just admitting that you’re having a crappy or hard time helps create the tiniest gap between you and the experience you’re having. This is what Tolle teaches—finding space between you and the circumstance so that you might see it from the outside objectively and not get lost in it and take all of it personally. (The Why Me Route) 

You can write it, say it, draw it, sing it, whatever it is. But transferring some of the weight onto some other medium helps prevents you from becoming tangled up and trapped in it—where every thought flowers at once and the idea of living the rest of your life frantically swirls around your head like a hurricane and feels impossible. The enormity of it all piles up because you think I can barely get through today…how will I ever get through the next three months? You start thinking 5 years into the future, your will power plummets, until something—in my instance, Monty scratching at the door— snaps you out of this useless futuristic angst and brings you back to right now. 

All I have to do is survive right now. Which sounds easy but when your willpower is at a zero, it’s actually a praiseworthy task to achieve. I survived another day!  I can’t survive anything 3 months from now, I’m right to think it will be impossible, because I can’t have a clue what will be in 3 months from now. It’s easy to think everything will be the same, and it might. Or it’s easy to see a dozen problems that all feel unsolvable. But all I have to do is look at the history of my life for proof that it can change in a snap, and 90% of the time, you don’t control the change, or predict it. You only go about figuring out how you’ll respond and adapt to it when you get there.

So how do I make now better? Unfortunately having a rebuttal for your mad mind doesn’t make it simply stop in it’s tracks and suddenly you’re grounded and fine. I’m not that good yet. Just knowing what’s helpful and what isn’t doesn’t immediately make you feel happy and give you your life juice back. But it might help slow that thought whirlpool down. It might allow for the smallest stillness to get through to you and allow the truth to calm your fast beating heart. Mostly it involves just having to live through the tension of the feelings and the knowing simultaneously that they won’t last. They may not even be true. As hard as it is to work against something inside you that feels like it’s actively dragging you down or drying you out, I know that trying anything is typically better than rotting on the floor like roadkill and trying nothing at all. 

On my two hour break, I listened to a podcast called Revisionist History by Malcolm Gladwell. I highly suggest listening to it, but it surprised me how just hearing someone else’s voice and someone else’s story can help pull you out of the thought whirlpool of your own. It’s nice getting out of your own head and being exposed to what people before you have met and endured in their life. I listened to Sammy Davis Jr.’s story A Hug Heard Round the World and hearing of his life and challenges put things in perspective, at least temporarily. This is the importance and power of story telling, I think. It straightened me out for a while.

I also downloaded some foreign language apps on my phone a few days ago so I can start to remember and re-learn french. I’ve forgotten so much of it and I miss it. I plan to visit France for a while when I’m better, so I’d like to get back to moderately fluent. I can’t wait to sit on the sidewalk again, drink my cafe au lait at at a table with a white tablecloth, and write in a fresh notebook Well, I’ve finally made it back to Paris. 

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I didn’t want the invisible vacuum of thoughts inside me to win, so I had to fight back and share these crappy thoughts with you, sorry guys. I guess writing these thoughts out was my way to create the gap. The ability to step back and watch today unfold was my way forward. Otherwise I was slowly being swallowed and nobody wants that. This was my version of winning! Hey look at that, I used another exclamation point. That’s my comeback for today, using an authentic exclamation point. A sign of life. Beeeeep. Beep. Beep. She’s back people!

I think for now that has to be enough. 

Health, Happiness, Surviving

Day 5

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*my general editors note here would be that maybe writing through one of my more serious crashes in the last few years wasn’t the best idea because I imagine it can become a little daunting on the reader to read over and over again. Of course, that is the reality of living chronically ill, and it’s surviving the resilient day after day after month after month that is the most difficult part. But also this wan’t exactly intended for people to read and enjoy, although that would be a SUPERB secondary outcome. It was to clean house.

BUT,  if I’m going to document such tough times, I have to be very cognizant about not letting the work feel tortured, even if I do. Torture in general is not the most entertaining subject matter, I think we can all agree. The point is not to let the sickness win and be the teller of the story. It should be the lens but not the primary subject matter. The challenge is to express and respect the experience authentically, be honest when it feels like torture, but allow enough distance and space from the part of me that wants to try to make this personal (the ego) so that humor and optimism and hope can carry at least half the narrative, the ‘happenings’–or ‘non-happenings’ as it were.

I thought I remembered by day 5 things were beginning to improve, and I read here that my weakness had finally started to just barely let up, and yet it was still an incredibly difficult day, mentally. I was still in really rough physical shape and I remember well just staring out of those windows and feeling an absolute absence of willpower–to do anything. I felt an emptiness inside and a certainty that anything I chose to do made no difference whatsoever. Talk about fun times! But I do remember seeing the bright red of that type-writer, this project I told myself I’d start and finish, and in my 1% battery charge of life force, I made my way and just started to type. It felt like a long exhale.

I actually remember the moment I began to feel better, in the midst of writing this piece. When I wrote “It seemed like a better idea to write at the type writer than to continue staring out the window, wishing things were different,” I realized how huge my role was in keeping my brain and mind active in positive ways when my body wasn’t strong enough. It makes a difference where you look, what you’re looking at, and how long you let your thoughts take the wheel away from you. In that paragraph I knew writing was a big way  of living through something unpleasant and of changing how I felt about it, just by making a lot of small decisions that were opposite of what I felt like doing.

That role is so crucial, and like baby-sitting a two-year-old, you have to sometimes run around after your meandering mind, make it sit in time out, and remind it of true and happy and important things. Facts, not stories. That’s where you find gratitude and humility and grace and remember love and kindness and hopefulness. (All below the surface) You have to reach down far, and the willfulness to reach is for some reason so incredibly difficult it feels next to impossible. And yet when you do reach and feel something reach back, your entire outlook, even for an hour, can change massively. I think done enough times, we can remove a lot of the unnecessary pain we feel no matter what we’re going through..

For me, it’s sitting in time out and not letting toxic thoughts convince me of anything that isn’t true. Its not that I can’t acknowledge how extremely hard this situation is or allow the deep emotional parts of it to rise and let them out. In fact I have to do that. All parts of the spectrum need an outlet.  It’s not about making those thoughts forbidden. It’s about acknowledging them but also then to keep going. Not to stay glued to some idea about fairness or unfairness that eventually keeps you from trying, keeps you from remembering who you are–buried underneath all the hardship that can feel piled on top of you. Writing is magic for me in the miraculous way it reminds me of the truth when I can’t think of or remember it on my own. It will literally turn bitterness into gratitude in just a few sentences, and that’s why it’s important.

Well, I’ve veered off track again. I just felt like taking some notes that maybe I’ll refer back to in the future.

Dammit, I just remembered the Super Bowl is tomorrow and how as a Saints fan I’m boycotting it, but as a curious person I’d like to watch some of it and also observe what 15 million dollar commercials the ad people came up with. I imagine my mom will be dressed all in black and if we had an American flag on our porch, you can bet it would be hanging at half mast. Hah. Football.

Ok Mary well it’s been real. Yeah Mary I agree. Have a happy Saturday. Yeah cool you too. See you tomorrow. Same bat time, same blog place.

 

Day 3

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OK, there’s a lot of crap in this piece that needs to be re-written or scrapped. Taking on a writing project in the midst of a heavy crash may have been a bad idea in terms of writings to share because than crap like this emerges and I told myself I’d stick to the rules. Even reading it now I can see how convoluted my mind way, how easy it was to stray off topic. I’ve begun to improve since Sunday, particularly cognitively, and the writing really does emulate what’s going on during fog. I had to cross some out because it just meandered and was so clunky and unclean, it was very far from conveying my ideas properly at all. Anyway, as uncomfortable as I feel posting writing I don’t like and probably 2/3 of which I would change, or burn, this was partially the point of the project. So just trust and let go. Besides, there’s like 11 people reading this. I think we’ll all be OK.

Anyway, hopefully I’ve written a little better for day 4, or perhaps I’ll have more crap to share! Either way, it might be enjoyable. Just let go Mary. OK, I’m going. So go then. I’m gone. So go! I’m going! Just. Press. Publish. You Nitwit. Alright, see you tomorrow.

A Few Things Happened

Let’s talk. I’m just going to write in list form. It’s easier on my brain for whatever reason right now.

  1. I SHOWERED.

I can’t explain how good it feels to be clean to such a degree as an hour shower will get you. But even better is the smell of my shampoo emanating from me now. I have so little to brag about, but I have to convey how good it feels to smell this FRESH people. It needed to happen, I was too sick for a while, and now finally it has. I sat on a geriatric shower chair instead of taking my typical bath. My wobbly, cinderblock legs are smooth. My skin is clean and feels almost cottony.  I spent more than 30 minutes picking out Shampoo at Walgreens a while ago, searching for the perfect scent and I seemed to have found it. It’s left my hair emanating the scent of some subtle, tropical, white flower with tiny pink buds (and no nitrates!) Whatever that means. The scent is what Jennifer Anniston’s scarf closet would smell like. A shower is nothing, I realize. But in my bite-size, do-nothing world, a shower and this residual perfume of the Gods makes headlines. “Local Girl Smells Good!”

2. Secondly, in insanity news, the SAINTS JUST LOST. (Pause. Pour some beer out.) It was no one’s fault, it’s just that sometimes a defender leads with his helmet and interferes with a receiver in order to prevent a reception and somehow he doesn’t get called on it and essentially the whole outcome of the game changes. The non-call smelled like the opposite of J Anniston’s scarf closet. It smelled like what an old Southern man with leathery skin would say as he put down his beer with his eyes glared at the TV: AH HORSE SHIT!

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3. Oh good LORD, my hair. This foresty, soapy, new car yet feminine fragrance…How is it even possible?!

4. OK. It’s not like the Saints losing was any one persons fault. These things happen. I mean just like sports writer Jack Baer wrote “If it wasn’t pass interference, the helmet to helmet hit almost certainly should have been called a personal foul. Either way the Saints should have received a 15 yard penalty and a fresh set of downs with a minute 45 remaining, which almost certainly would have effectively ended the game.” See? These things just happen.

5. Idea. Maybe I could charge money for people to smell my hair up close. This is how I can pay for the research that the NIH will not. $100,000 per whiff. It’s also how I can earn some kind of money if my Sofia-Dorothy relationship with my mother goes South or she dies in her sleep and I need to make money to keep the farm afloat. Either one. (Kidding mom, you know you’re my hero and you can never die)

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“Hey Can I Smell Your Hair?” “Yeah, it’ll be $100,00. Make it quick.”

6. I can’t believe that non-call just happened. I still feel so shocked and bummed about it. At the same time I feel so hashtag blessed to smell like flowery beechwood that it diffusses the sadness a decent amount. What if I smelled bad and the Saints had a playoff game that was STOLEN right out from under them? Talk about feeling crappy and smelling like craigs-list. I mean I wouldn’t say the game was stolen from us…it’s just that

7.

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The New Orleans Causeway Tonight. We’re subtle with our emotions.

8. Monty has gas. I realize Monty always has gas, but this seems specific and particular gas. It’s smells sad. It feels like especially offended gas that could only be expelled for a special occasion. He’s looking more sad than guilty, as though farts are the only way he can physically grieve. They are the tears of a game getting blown. The gas makes me sad, but then I smell my hair and feel glad. It’s funny that smells can make us temporally happy or sad. The realm and cause of human emotions is really pretty extraordinary.

9. Were we really supposed to lose that game or was it a comic hiccup? Some existential mistake? Tolle would say it was no mistake that we lost, because it’s the experience we endured. “The fire of suffering becomes the light of consciousness,” he says. But I fear tonight the light will burst from cars lit on fire and a ref that requires a 24/7 security detail. I joke I joke. I believe

10. I wonder if my shampoo truly comes from Maui. Something tells me it doesn’t. But due to the beautiful potency of its scent how could I care from where it emerged?

11. Cleanliness is Godliness.

12. Monty’s gas has begun to transition into “It will be OK. But that call was true and authentic stinky bull-dung.”

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“Just can’t help my grieving gas!”

13. Like my mom says, at least we don’t have to be tense next week.

14. BUT MOM I WANNA BE TENSE I JUST WANNA BE TENSE WITH REFS THAT MAKE SURE THE PLAYERS DON’T BREAK EACH OTHERS HEADS!!!!!! Fine I’ll go to my room. No, YOU’RE being obnoxious! …Yeah I have some darks I need washed.

15. Saints, I’ll be your forever fan. Next years is ours. But on a personal note, you’ve given so many of my Sundays a happy distraction from what hasn’t been an easy year or years. Watching you play has energized me to a happy place, and I’ll always BELIEVE DAT you’re a team of good men, win or lose. I’m grateful you’ve made it as far as you have. You’ve been the joy of Sunday’s for much of my family and I, and I hope you feel the pride of the whole city behind you, my dog Monty, and me. See you next season.

Health, Happiness, Who Dat

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Thank You for a great year! 

 

Two Way Radio

God help me, I think I lost the signal.

Writing is my two-way radio, particularly since I spend so much time in solitude, which really depresses me only four to five times a year. A very specific void opens up and I know I need to see and visit with people who find the same things as funny as I do.

Otherwise, Monty and my parents and staying up late drawing or reading or writing have taken up a lot of my life. It’s been a hard but good life, and I imagine all the time what it will be like when I’m not sick anymore. I watch people working their everyday jobs, knowing they can’t know how lucky they are to do such mundane things without a second thought. That’s the typical way, and it will be a really incredible moment when I shower and don’t give two thoughts hesitation until I’m applying face lotion later and realize I didn’t have to plan that shower I just took.

But back to my two-way radio. Something happened. I’m on one channel and the world is on another. Somehow the signals became switched over the last few months, maybe years…I’ve lost count. I only know it was much easier once, this writing. Suddenly the process became very arduous and tied into webs. I still write everyday. I still turn to it. But I know I’ve grown afraid, I’ve let the voices inside get to me and keep me from sharing what I’ve written out of fear. That’s pretty foolish Mary. Thanks, I know. Which is why whether this post is good or bad, I apologize but I have to post it. It’s the only way I know how to hush those voices and thoughts. It’s the only way to grasp some kind of momentum, move on, and not lose my inner voice completely and my ability to hear the world through my radio. I haven’t stopped listening, it’s just been harder and harder to make sense of the output.

This is halfway because my cognitive function has felt toyed with. I lack mental clarity ken-wong-art-painting-goldfish-girl-design-inspirationand trust and staying on route. My thoughts meander and pivot like goldfish in the back of my head and it’s impossible to catch one before they’re swimming in a whole other direction. It’s so easy to convince myself there’s too much at stake (really there’s kind of barely anything) and throw in the towel when I’m inches from the finish line.

I’m going to try hard to stop doing that. I’m going to go ahead and hang my dirty laundry out to dry, that way it can’t convince me in some corner of my mind that a fleeting thought should make up such a definite decision.

I can barely keep my eyes open. But I promised myself I would finish this, because I know I’m the only one who can get myself out of this sticky web that has me all balled up and disoriented.

It’s been a terrible a day. I’ve been crashed for weeks and weak as hell. I finally regained a little strength today, but when trying to fill two prescriptions at my old stomping ground, Walgreens, one was denied by insurance and the other has some manufacturers shortage. They told me to try calling back in a month to see if they would have it then. A month? It’s not socks lady, it’s medicine I need and take everyday! All my energy and emotion went to trying to fill this simple prescription, and my poor mom was back at putting out fires all day while still trying to recover from the Holidays herself. Matt has been a lifesaver with his reassuring voice and enthusiasm to help–an encouraging voice that we’ll get what is needed. I’m lucky to have good people in my life. I know it.

I have enough medicine to last me until tomorrow. If Walgreens doesn’t come through tomorrow, I don’t know what I’ll do. Figure it out like we always do, but I hate how much of such precious, limited energy I have all goes to figuring out how to fill a prescription that life is not doable without. This medicine controls my extreme restless legs/body and the skin crawling I get on top of it. It is pure hell trying to exist without some type of medicine to quell the feeling. It’s also hell that suddenly you call to refill what should be easy and are told there’s a manufacturers backorder and “good luck finding that.” It’s a complicated world, and every month is like this. Never is it a simple refill and go.

Still, I’m lucky I don’t have to handle all of this on my own. But it’s just too much some days, and all you can do is let out a good cry and remind yourself it will be OK. It’s just overwhelming, and this is one aspect of navigating an orphaned disease I wish the NIH could see. This tiny aspect of it–nothing compared to what others endure– and still the amount of time and space and energy it takes up in my tiny little life is uncanny. You’re left to fight battles left and right, but you’re not left with any energy to do it. If you’re lucky you’ve got someone to help you–but that is pure luck it seems.

Anyway, this was supposed to be a post that explored my response and take-aways to the NIH reply to our petition. But I’ve been trying to finish the last 10% of that blog for a month now. Everything is slowed down–mind, body, talking for gosh sakes. I will finish it, but first I have to find a way to get the medicine I need, then I need to slow down long enough to get my radio back on the same channel as the rest of the world. It’d be easier if I had some strength and didn’t feel weak as feather carrying a stone of a body, but I imagine that will come back to me in time.

I can’t stay awake anymore. But I didn’t want to let the voice, the hindrances win. The web tangle me up to where I couldn’t emerge whole. I’m the only one who can get myself out of this writing mess, so I’m hellbent on doing it. I ask you to wish me luck that tomorrow goes better, and I can concentrate on ideas and not convincing Walgreens reps that I’m no drug addict and would just like my medicine so I’m not living in misery, with a cherry on top, please.

OK, I’m sorry this isn’t more substantive. It’s just the first step through this damn ring of fire keeping me from doing what I know I’m capable of, what I feel called to, but I’ve somehow been convinced there’s not any value in. I’m breaking through the wall, if only to remind myself that fear gets me no where and if I could just trust myself like 10% more, I’d probably feel better about everything.

At any rate, thank you to those who’ve stayed with me through these writing ups and downs. I know there’s been a lot of downs, but I believe there will be more ups to come.

Health, Happiness, Goldfish In the Brain

The NIH Response to the Petition/Package

Since not everyone receives emails from change.org, which is how the updates regarding the petition are delivered, and it’s the beginning of the year, I wanted to make the NIH response available here so everyone had a chance to see it. Get everyone up to date and on the same page. I can’t thank all of you enough for helping make this happen. I’ll post my and some advocates responses to the letter in the next post. So stay tuned.

The response from the NIH was interesting for a few reasons. Just for clarity’s sake, I’ll say it was not an official response–it was a personal letter emailed strictly to Matt. While they never mention the package and only briefly acknowledge the existence of the petition, I know that Collins receieved the whole kit and kaboodle. How? Because a receipt was sent to my email that the package was delivered and signed for by none other than the big MAN himself! Santa Clause! Or Santa Collins…you know what I mean.

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So, now we don’t have to wonder. Anyway, I’ll begin by posting the letter Matt wrote (rubber-banded to mine) that we included inside the box. Following it is the response from the NIH.

Matt’s Letter:

Dear Mr. Collins,

My name is Matt Tyler. Until just a few years ago, I had never heard of anything called Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. And that’s kind of what’s so crazy about the disease. It’s hidden from the majority of us. It wasn’t until I ran into an acquaintance from my younger years, someone who had sort of disappeared from my circle of friends when I was in my mid-twenties. I just assumed she had relocated, had become consumed with beginning a family or a career. You know, normal late-twenties life stuff. Turns out she was dealing with ME/CFS. She had faded into the background not because she had other things in the background to do, but because she was forced to recoil into a bed by a mysterious disease that most of us had never heard of.

I’ve grown very close to her recently and in turn have grown very close to the life that suffering from Myalgic Encephalomyelitis brings with it.  She’s not even on the most severe end of the spectrum, but it still baffles me how she’s able to get up every day (most days, some days just have to involve being in bed all day) and deal with the pain and exhaustion that she feels just because she’s awake. Because she made a sandwich and then walked to the couch.  Because she needed to bathe. And she never complains or whines about her circumstance. She has every right to, but instead she fights however she can. She does things like create the included petition. She exerts the very limited supply of energy she has to give a voice and some hope to the millions of people suffering with this debilitating disease. The millions of people who have been robbed of years of their lives.

You once lived a life where you searched for hidden genes responsible for these types of things. I remember reading once that you would put a sticker on your motorcycle helmet every time you discovered a gene responsible for a disease. I’m sure it was a proud moment applying the sticker representing Cystic Fibrosis. I know that’s not the life you live anymore. Now you get to direct and inspire young versions of yourself. Young scientists trying to make a change in the world. That’s why we need your help. Your influence. Your voice.

The reason for this petition is simple: Allocate more funds toward the research of Myalgic Encephalomyelitis. That’s what we are asking. That’s what the people behind the more than 50,000 signatures are requesting. But I’m sure you understand more so than most of us that by doing that, you are immediately impacting all those millions of people who have been pushed into shadows. If this increased funding happens, not only will the impact happen long term with better diagnostic tools and possible treatments, but you’ll give the people suffering an injection of hope. Hope that they can return to their jobs. Hope that the life they once had and enjoyed is not forever lost. Someone with as much prominence in the scientific world as you making a decision to increase research funding and speaking out about ME/CFS spreads the word about the disease. It might inspire some grad student somewhere to decide this is going to be something they want to attempt to tackle. Some blossoming scientist might decide they want to put a dent in or even end this terrible disease.

I understand that giving more funds to ME/CFS research likely means another diseases’ funding might be reduced. I don’t envy you having to make those decisions. But I can say this. I would imagine in the world where your career exists, the phrase “return on investment” is not foreign. I run a small family business and it’s something I have to consider almost daily. I’m sure it’s a much more difficult metric to calculate in the domain where you must apply it. But I’ll leave you with this: any additional money put towards ME/CFS research, especially if some sort of formal announcement or press release is attached, will yield an exponentially higher return on investment than most other diseases. Because outside of simply robbing people of their careers, health and happiness, ME/CFS robs people of hope. And a life without hope is no life at all.

You have the chance to not only bring about scientific change to help millions of people in need, but the chance to reinvigorate them with hope.

Thank you for your time,

Matt Tyler

P.S.  If you do decide to do what is being asked for in the petition, I will design, make and hand deliver a sticker representing ME/CFS for your motorcycle helmet in hopes that in the very near future you’ll be able to apply it.

***The NIH Response***

Dear Mr. Tyler:

Tell your friend Mary and the supporters of this petition and the me/cfs community to go find the fattest worms they can find, take a seat on a nearby stomp, and eat them at a slow, slow, pace. OK? Thank you and we’ll check back in with you in roughly 10 years from now, mkay? Happy Holidays gbyyyyyyyye!

KIDDING. I had to. OK, Here is their actual response.

Dear Mr. Tyler:

Thank you for your letter to National Institutes of Health (NIH) Director Dr. Francis S. Collins concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  We appreciate your kind words about his work.  Dr. Collins requested that I respond to you on his behalf.

I am sorry to learn that a friend of yours has ME/CFS.  Your description of her experiences underscores the devastating effects of this disease.  With your letter, you included a petition that asked the NIH to increase funding for ME/CFS research to $100 million.

We at the NIH understand the necessity of improving diagnostics and finding effective therapies for ME/CFS as quickly as possible.  We agree that there is a tremendous need for quality research in ME/CFS.  It may be helpful for you to know that the NIH system is open for any researchers to submit their best ideas for funding excellent science in ME/CFS.  The NIH grant system primarily funds work performed in individual laboratories or clinics by teams of scientists working at academic, medical, and other biomedical research institutions, including industry.  Individual investigators interested in pursuing ME/CFS research can submit detailed proposals through their institutions to answer a broad range of research questions.  Proposals can be submitted three times per year.  Proposed projects undergo a rigorous peer review process at the NIH and are then considered for funding.  Investigators receive critiques of their proposals and have the option to revise them and resubmit.

The Trans-NIH ME/CFS Working Group recognizes the acute need to cultivate more research and investigators to work on ME/CFS.  In pursuit of this goal, NIH plans to bring scientists together with patients and ME/CFS advocacy groups in April 2019 to discuss the opportunities in ME/CFS research.  We also plan a meeting intended to engage early-stage career scientists in ME/CFS.  More information about these meetings is available at https://www.nih.gov/mecfs/events

In addition, the NIH is conducting a study on ME/CFS at the NIH Clinical Center in Bethesda, Maryland.  This study, led by renowned neuroimmunologist Dr. Avindra Nath, is exploring the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression.  Recruitment of healthy volunteers and people with ME/CFS is underway.  The study is currently recruiting patients who have had ME/CFS for 5 years or fewer.  You can read about the study at this website:  https://mecfs.ctss.nih.gov/index.html  The following site provides a contact email address and the telephone number for the NIH’s Office of Patient Recruitment:  https://mecfs.ctss.nih.gov/contact.html

Please be aware that the NIH generally does not stipulate the amount of funds for specific diseases.  There have been times when Congress provided funds to the NIH for specific purposes, but those instances have been rare—HIV, cancer, Alzheimer’s disease, and more recently, the crisis resulting from opioid overuse disorder.  In special cases there are NIH-driven exceptions, for example, when one or more NIH Institutes set aside funds by issuing a Request for Applications (RFA).  The RFAs for the ME/CFS Collaborative Research Centers (CRCs) and Data Management and Coordinating Center (DMCC) are examples.

As a result of the RFAs, in September 2017, the NIH awarded four grants to support the creation of a ME/CFS research consortium composed of three CRCs and a DMCC.  These centers will help to build a strong foundation for expanding research on ME/CFS.  The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS.  The data will be managed by the DMCC and will be shared among researchers within the CRCs and more broadly with the research community.  You can read about the awards at https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research  We hope that the new centers and other NIH efforts will attract researchers from other areas to propose research on ME/CFS and increase the number of young investigators entering the field.

The awards are just one result of the NIH’s efforts to advance research on ME/CFS with the goals of identifying its cause and finding biomarkers to study disease progression and monitor response to treatment.  You can read about these plans in the following NIH news article from October 2015:  https://www.nih.gov/news-events/news-releases/nih-takes-action-bolster-research-myalgic-encephalomyelitis/chronic-fatigue-syndrome  As part of these actions, the NIH has renewed the focus and efforts of the Trans-NIH ME/CFS Working Group, which is carefully exploring the gaps in our knowledge and identifying the opportunities for research on ME/CFS.  The Working Group will continue to discuss next steps to attract more researchers to this field and expand research on this disease.  You may wish to visit the Trans-NIH ME/CFS Working Group website at www.nih.gov/mecfs

The NIH continues to post research funding opportunities related to ME/CFS in the “Funding” section of that site.  In addition, the information at the “Resources” section of the site may be helpful.  If you would like to receive periodic updates about NIH activities related to ME/CFS via email, please go to that website and click on the link to “Join our listserv” at the bottom of the left sidebar.  The NIH hosts regular telebriefings with the ME/CFS community to provide updates on our activities and answer questions.  Announcements about upcoming telebriefings are emailed via the listserv.

In addition, the National Institute of Neurological Disorders and Stroke, which is the lead Institute for the Trans-NIH ME/CFS Working Group along with the National Institute of Allergy and Infectious Diseases, has recently formed a working group of its advisory council to provide scientific guidance on how best to advance ME/CFS research at NIH.  The working group includes basic scientists, clinicians, Federal partners, advocates, and people with ME/CFS.

We hope that the steps the NIH has taken over the past 2 years and the future progress of the Centers will grow into a major scientific effort in ME/CFS research funded by grants submitted to NIH.  We look forward to working with the community to gain further insights into ME/CFS that will lead to the development of effective treatments and improve the quality of life for people coping with this disease.

Sincerely,

Walter J. Koroshetz, M.D.

Chair, Trans-NIH ME/CFS Research Working Group

*****

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“This is great! We got a response from the NIH!”                                                                        “Yeah, this is a big deal!”                                                                                                                                 “This is bullshit.”

Don’t worry, this may not be exactly what I/We might’ve hoped for, but this provides us good information straight from the horses mouth. There is a great deal of value in seeing how the NIH looks at this issue and what they consider “enough” in terms of how they’re approaching the situation around MECFS. Since some of their advice involved going to congress, this letter can help convey the exact issues we’re talking about when we say there’s a lack of urgency and an overall tone-deaf, dismissiveness when it comes to this disease. Either way, I’m very happy and grateful we received this response, and trust me when I say it will be put to good use. Stay tuned.

Health, Happiness, More to Come!

I’ll Take ‘New Years Eve From Bed’ for $1000, Alex

Sometimes life is so tragically hilarious that you could laugh or you could cry, but when you’ve shed enough tears to fill a pool, laughter is nearly the preferable way to go. If you can swing it.

I’m laughing because it’s New Years Eve, I’m in 5 day old pajamas and have only left the house by being driven by my parents to urgent care over the weekend and for x-rays, blood work and an ultra sound at the clinic today. Now I’m at home, listening to the coonass neighbors set off what sound like homemade bombs, Monty is never more than a foot away from me as he’s afraid of what I can only assume he must assume are the end times out there…

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This is basically the funniest picture of Monty I’ve ever seen. It’s like he’s trying to play it cool like he’s not scared, but it’s all gone horribly wrong 

OK so then on top of this somewhat sad, funny setup, there I was watching The Antique Roadshow with my parents. Marc was already half-asleep in his chair. Well, I’m 34, I’m going to kiss Monty for NYE, and it’s anyones guess how late I’ll stay up. Then around 10ish my mom told me she was exhausted and going to bed. I’m at home now, attempting to write, which I’m deathly afraid I’ve forgotten how to do so excuse the caca that may emerge through the next few posts while Stella gets her groove back. The point is, I’m 34 and peeing every 20 minutes and I doubt I’ll make it to midnight. Unknown  Now that’s comedy! At least we’re not watching My 600 Pound Life…that show can really get you down.

Anyway, I wonder how many other asses were kicked besides mine due to the intrinsic chaos attached to the Holidays. Because you can considered mine booted. Crashed and burned. And it’s raining outside! Some easy reasons to be blue, but rain is actually a huge part of why I love living in the south. My dad always said rain was a sign of balance–and on every occasion some small shower falls from the sky and comforts us all in some way that he’s still there…still looking out for things, even when they’re a catastrophe. Maybe this year it means the scales will tip a little further in the direction of help for the MECFS demographic–help even the ‘playing field’ when it comes to our efforts for change. Maybe I’m just a hopeless romantic. But hey, he’s helped out before.

The biggest bummer besides my body failing is that cognitively it’s been spaghetti brain all over the place a lot of this year. Especially the last 6 months. And it seems like the brain needs rest the same way a physical crash requires one. But writing is my outlet. I feel angst when I don’t write here. Doing it forces me to remember, be patient and grateful and most of all, to help restore my hope. It’s aways been something I can do despite being sick. So to not feel like I can creates a void among voids I’m already fighting. It’s hard to know when to just stop and take a break, or when to just keep writing through it, even when it seems to kind of…suck.

I write through a lot of it and post very little. I tell myself I’ll stop doing that because that fear of bad writing can really tailspin into no writing, and that’s the worst you can do. Inspiration can hit you in the middle of doing what feels like crappy, worthless work. And it seems less likely to be struck by anything meaningful when you’ve turned your back on trying because you’re afraid it will be bad. Sometimes it will be…I think you just write through it. Or you become a lowly loser blogger whose only readers consist of your sister and your aunt Amy. They were the first followers of this blog :)

Writing and thinking and speaking coherently have become so much harder this year. Half of it do to the meds I have to take to control the RLS and skin crawling, where life is just not possible without the treatment. When I picture my brain I see a six lane highway with bumper to bumper traffic that spans for miles with no way to exit besides getting out and walking. It’s so cluttered up there, forgetful and all out-of-order. Luckily it is the pace of writing, its’ patient ability to wait for me to think of words, that allows me to continue. Unluckily, it takes me so much longer to write than before, and by the end I can’t gouge if it makes any sense so I skip it and say I’ll come back to post later. Guess who doesn’t post later? So there’s about six….thousand… of those suckers just open on my computer, waiting to go somewhere. I just need to stop being a pansy and post. What’s with this damned hesitation? Good grief.

It hit me this year how hard it is to be around people who aren’t sick simply because it brought me up close to what a typical life looks like. I tend to forget how dysfunctional mine is. I watched as they would make breakfast and listen to loud music in the morning and carry babies and take showers like it was nothing. Of course it’s nothing. That’s what a healthy life permits you, and so it can be a bitter reminder of the things that are marathons for you, when you see just how easy they could be thoughtless tasks. But this is why sickness is always encouraging consciousness if you’re to live with it and find peace at the same time.

If you kept a list of “can no longer do’s’, you’d run out of paper and possibly lose your mind. In day-to-day life, you have this *creative challenge* we’ll call it, to just hang tightly on to what you can do, what you have, and squeeze the hell out of that lemon for all the juice inside it. Years ago I had to learn to start counting up, not down, in my everyday life in order to keep going. To find momentum, purpose, laughter, creativity–all that cheesy crap they write on picture frames at TJ Maxx–you’ve got to find your small pieces of joy and feed them until they start to return the favor tenfold.

It would be easy enough to be depressed on a day like today. It’s New Years Eve, and I know my friends are picking out fancy outfits for the night. They’ll drink and dance and party. Since we spent most of today at the doctor getting x-rays and ultra sounds and blood work after a bladder infection seemed to move to my kidneys, I think it’s safe to say there’s no partying for my NYE. But that’s OK. I mean it sucks, it’s OK to say it sucks, but it’s OK too. I mean here I am talking about my bladder to strangers on the internet! Should I get into my bowels? I won’t, they’re fine.

I really wanted to write tonight because I was thinking of all the people in similar situations as me–particularly all the sickley’s out there. I just wanted them to know that if you’re feeling low, well 1, that’s understandable. But 2. try hard to remember you’re not alone in all this, even if you’re by yourself. I know it’s difficult  to take that seriously. But I also know how isolated it can feel when you turn on the TV and see two million people partying in Time Square while your miles away in PJ’s, in bed, etc. I hope you remember how many others of us there are, going through the same or similar experience, missing out on overhyped parties and whatever else is happening out there.

We’re still connected to each other in some way, and I don’t know how to convey it exactly in a way that really eases the loneliness that nights like these tend to reinforce–but the numbers don’t lie. There are millions of us, all in similar boats. And we don’t have to know each other deeply to know we’re out here. I’m one right here!

Let’s also not forget, we tend to imagine these elaborate parties with tigers on leashes and super models serving champagne on a rooftop with views of NYC, but they’re never as good in reality as they are in our minds. Tonight is just a change of numbers. Tomorrow will be back to normal.

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The difference is that it’s 2019, and I plan on working so hard and creatively with my efforts in getting the NIH to see what they don’t appear capable of seeing. -We’ve already made a breakthrough, (more on that next time) and established an important connection. Was their response satisfactory? Haha, NO. Not by a long shot. But this was just one of the first steps, and there will be many more to come.

I would ask anyone at midnight to just stop and focus their attention for even a few seconds on major change for MECFS. Think about the things you want to happen, even if it seems obvious, and send it out into the world. Maybe the desperate changes we need will converge somewhere in the universe, meet over some remote place above the Atlantic Ocean and help make things work in our favor. I believe we can do what we’ve set out for. We just have to continue to help each other, support and carry one another through when the work is too heavy, and never lose hope that we will get through to the right people and that the work we’re doing is crucial.  We will attain the change we need, I know it. At midnight that’s what I’ll be thinking of, and I hope you’ll join me.

I truly hope everyone had a happy holiday, sick, well, or in-between. I’ll see you tonight in the stars somewhere. I wish you all the best, and if you’re like me and you’re going to kiss your dog at midnight, maybe also make your wish, kiss your fingertips, and blow it out into the cosmos. I believe in the power of energy if nothing else. Whatever you do, don’t lose hope, as impossible as that can feel. Try to imagine how amazing it will feel when our efforts come to fruition. The advocacy world has made some major progress this year. Now, we just need to get the government to follow our lead :) easy peasy! I think 2019 will have much bigger things to come, so hang in there with me. I need ya.

Health, Happiness and HapPEE New Years!

**I promise this is the last blog that’s so long. I’m fixing it, ok? My brain is thinking in non-sequiturs. I’ll fix it.

Meaning in the Mud

Family, Friends, Strangers, Enemies, Grandmas, and the future class of 2019: hi. I’m not dead. Figured I should get that out of the way.

It’s been so long. I’ve missed you. I’ve missed writing here. I have an underlying angst that eats at me when I know zero words are emitting from the blog of roughly 12 readers a day. Still, I don’t like it. Mostly because I still so often spend hours a day writing, , but reading it back over it the next day, the coherency is lacking and it’s clear my spaghetti brain is hindering a collective blog, so I don’t post it. The next day I write, I try to edit, and the process just repeats itself. All of it resulting in DEAD AIR! Boooo.

Anyway, as you might’ve guessed, I’m still crashed. Or on very shaky ground anyway, and I’m not really sure why. Weakness comes and goes, my restless legs/crawly skin is constantly flaring, but it’s this damn pain in my head that is consuming, constant, and just plain exhaustive. More than weakness or any other symptom, it’s a resilient pain like this that keeps me from writing long enough to edit and post, which makes me hate it all the more.

This head/face pain started to get to me psychologically a few months ago. I’d find myself looking forward to sleep given the escape it offered from the pain. That’s not a grrrreat way to live, but it is A way to live, so there’s that. It’s just the reality right now, but I do genuinely believe we’ll find the answer to this. Or we’ll at least find a remedy for the pain. Even if it is some South American JuJu bean sprout mixed with Norwegian honey bee oil and antler-fuzz brewed into a tea. I’d drink that crap-tasting tea 10 times a day. The point is, I know it won’t feel like this forever, so I’m just hanging on and HOPING THAT A FIX COMES ALONG PRETTY QUICKLY. Sorry I thought if I shout-typed it that God or someone might hear me better.

For now there is pain medicine, dousing my face in peppermint oil, and putting a frozen ice pack on top. Then I lay there, like a useless slug waiting to get stepped on. I’m destined for greatness!

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#Useless Slugs Unite

On Monday I had my face injected with steroids and lidocaine to see if that would do anything. I do think it helped the back of my head, but so far not a lot of luck on the face or top of the head. Although the injections did give me temporary human horns, appropriately in time for Halloween. This picture is actually after they’d gone down a bit.

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She-devils Unite!

Walking back into the waiting room I told the secretaries not to judge my she-devil horns and they burst out laughing. I guess in a place that is usually so serious and nearly tense like the sign-out counter at a doctor’s office, something about that interaction made me feel lighter. 

Other than that, life remains a constant search for balance in-between hope and despair. Obviously, it feels much better to be hopeful. But damn if despair doesn’t grab you by the feet like an anchor and drag you under. It can be so easy to fall down that hole, and much harder to make your way out.

I know I write about it a lot, but it’s because chronic illness is such a marathon. Staying optimistic, believing your life can be good, finding meaning in the mud, laughing when it’s funny even though it’d be just as easy to cry, are all your job on top of the physical battle. It’s so hard not knowing where the finish line is or what it even might look like once you get there. If you’re like me, you’re always trying to calculate how your life might go if you’re sick 2 more years, 5 more years, 20 more years. It’s infinite…

It’s an impossible hypothetical that will only leave you confused and anxiety-ridden. Marc Nepo said confusion is the result of trying to make sense of things too soon, and I am constantly trying to do that. Make things fit before they’re fully formed. It’s hard to trust that wherever you are is where you’re supposed to be, and yet in hindsight, it seems that somehow it always turns out that’s the case, even when things have resulted in pain or anguish.

Nepo also said the repeated hindrance to joy in his life over and over has been hesitation. So I’m continually trying to just live the moment I’m in–1 because honestly it’s all I can handle. But 2 because when I start thinking too far into the future or assuming I could possibly change things that have happened in the past is when I actually suffer. When I interrupt my thinking and say Mary, all you have to do is make a cup of tea right now, I’m brought back to the only thing that matters and where I have any power, which is now.

It’s been an interesting experiment, this whole chronically sick life thing that I think I may have signed up for ambitiously before I was born because I’m stupid and don’t think things through. Still, it’s interesting, because it’s a perpetual challenge, especially creatively and in thinking. Like this idea–that you can be in a lot of pain, but also laugh hysterically in your living room, alone, at something you’ve seen twice before. This week I was watching jeopardy casually with my parents and I filled up with an overwhelming sense of gratitude, and despite my raging head and restless, squirming legs, such a strong positive feeling made it’s way to the surface anyway.

The same happened when Matt brought me lunch out of nowhere on Tuesday, because he happened to be eating at a place nearby. I had a migraine, but when I woke up I had a meal to eat and didn’t have to think about it or muster the strength to make one. Just deciding on food can be totally exhausting. My gratitude was overflowing. And when Monty was afraid during the rainstorm and I laid with him on the floor, because I could, petting his velvety ears as the poor guy shook with fear at the rumbles of thunder, the love I felt for him welled up inside me, to where I could feel an actual warmth in my chest. I think how lucky I am to have such incredible people (and dogs) in my life and it makes the physical pain feel less powerful.

There are many, small moments like that, where gratitude and humility and laughing out loud at something stupid all pop up and show their beauty despite whatever physical pain I’m feeling. The dichotomy of those two things and experiencing them at once is an intriguing piece of the puzzle that’s teaching me how to be a human being. I think I’m getting pretty good! But I’ll never be as good as Monty, the happiest, most grateful, and present person I know.

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Actually Destined for Greatness

Case in point, he was not at all upset when his ball became stuck under a huge flat rock that was filled with muddy rain water underneath. He spent 30 minutes digging and splashing and maneuvering for that ball, and a half hour later he came trotting to the porch, a newly chocolate lab, victorious with said ball that was almost a goner. Seeing how happy, proud, and brown he was made me laugh so hard, I couldn’t help but feel happy to be alive, despite feeling like death. Witnessing the fulfilled, unflinching life that Monty lives, it’s fair to say that dog does not hesitate or miss lifes’ moments. His joy is infectious, and I will always be grateful he’s been by my side for as long as he has.

My head is starting to fill with pressure and expand like a balloon, or so it feels, so it’s time to slug it up for a while. Then maybe I’ll enjoy Wheel of Fortune with my parents. See? I have to laugh at it. Was this the life I envisioned at age 34? Would I have chosen this? Maybe not. And yet I am learning, learning, how to find a sense of fulfillment and wander in the unchosen existence that is uniquely my own all the time. Each time I inch toward trusting this experience, the more momentous life becomes, the brighter the mundane moments explode into something special, and the more my soul awakens at how incredible it is to be here at all.

Health, Happiness, Muddy Waters

Some Months Are Like This

I always forget
how bad it can get.
Then it roars it’s ugly head,
And I’m awake but stuck to my bed

my limbs feel like they’re made of lead
this pain, this pressure, constricts my head
it wakes me up,
but for a while it fled
in school-aged dreams
where some phrase a girl said
is useless but on repeat, inside my head
over and over,
your bones are made of bread

I crack my back
my knuckles and toes
how long will I stay here
nobody knows

don’t worry about me
I have big dreams and wishes!
its either a long, arduous bath
or doing a sink full of dishes

I’ve swallowed my medicine
drank all the water in the bottle
the pills are crawling down my throat
like a large elderly fellow, I begin the waddle
down the hall to fill the bottle
with more water I’ll need to drink
my wrist is shaking I’m so stupidly weak

I get angry at these limp noodle limbs
that seem to break at the slightest bend

Made it back to bed
where Monty sleeps because he knows
We won’t be playing outside today
I adjust the pillows then away I will go

But first I lean my head against his
and feel his velvety ears
And he stretches all four paws out stiff
I whisper I’m sorry but I don’t think he hears

He seems happy when he’s asleep
or fetching or resting or taking a swim
And never does the boy feel guilty
for a day spent alive, up to the end.

I’m learning from a dog
from the pain and redundancy
I’m finding surrender and grace
In and between my glass dreams abundantly

What would Monty do?
He would live anyway
sometimes life is like this
Every beginning the test of a day
For now the test is listening well
What does this pain have to say?
Maybe if I truly hear it
I’ll awaken and poof
It will go away

Mostly my prayer
Is it’s not all for nothing
Lying in bed all day
the ceiling whispers it’s something
bigger than you, and me, and podcasts and Netflix
something untouchable, but true, that will make Per Finks head fixed

I’m falling asleep
Good night
dream sweet

The Wait of the World

It’s almost 1 pm and I’m still in bed. I’ve eaten breakfast, drank coffee, taken all my medicine–but still everything feels so weak, heavy, and drained when I stand. The idea of going anywhere except the nearby living room couch feels daunting. But alas! These are how crash days go, and for whatever reason, the last 2 months have been a constant see-saw between crash-recover-die-come back to life—you know, the norm.

Monty is laying on the cool tile floor, waiting. He’s half-asleep right under the middle of the door frame, his front half in my room, his back half in the hallway. So whenever I get going, he won’t miss the opportunity to try and get me outside. He’s pretty convincing, even on crash days. How can I resist this face?

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I mean REALLY

What’s been toughest is managing this head/facial pain, which I’ve had for years but has really intensified over the last two. It either keeps me from falling asleep, or wakes me up at 3 AM, but mostly it just makes just trying to navigate through an ordinary day stupidly hard. It’s more than a distraction. Pain, even “small pain” (think tooth ache) turns consuming, completely exhaustive when it’s chronic, no matter what level of intensity it is. Just trying to elude and quell this pain that’s constantly knocking from within my brain makes what should be easy feel insurmountable. You’re always learning how to live around it, through it, under it. It’s a silent fight between you and this invisible pain, but damn can it be crushing.

That is how it feels by the way; that my brain is swollen and pushing against or “knocking at” my facial skull. This is how I explain it to doctors, to which they say “hmmmm…intersting..” And then they do some thinking and examining. But they’re ultimately stumped and it’s understandable why. The MRI’s show tiny abnormalities but none that would explain the kind of pain I’m having or why it’s worsened.

I often wake to a text from Matt asking how I am today, and I tend to refer to my body as a limp noodle and describe my head as volcanically explosive and oozing. And then very recently, this emoji came out!

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The world is a funny place. Now I don’t have to use words at all! I’m just going to turn these emojis into my doctor instead of the 1-10 “pain scale.”

Anyway, it’s hard not having answers. It’s hard not to look in the mirror and ask “Am I crazy? Am I imagining this?” Humans like a little thing called proof, and it can be discouraging trying to convey pain to doctors when I can’t hand them a test that says “See? I tested + for Volcanic Brain Syndrome w/ Idiopathic Oozing.” We like to see a cause so we reconcile the effect, even if we can’t cure it. But there are just so many unanswered questions with this illness. You have to learn how to trust your pain, and by that I do not mean indulge it, but trust that you know your body, you know what pain feels like, and whether a test comes back positive or negative doesn’t determine your physical reality.

Last Monday, the pain had been extremely intense all day. I had a doctor’s appointment with an ENT that afternoon, and as much as I wanted to call in sick, my mom helped me get ready and drove me to the fancy doctors office. The clinic did botox and other procedures, but mostly for aesthetic reasons, so you bet your booty it was extremely well decorated. Anyway, I was super nauseous the whole time, wanted to stick my head in a bowl of ice, and just lay down with the covers over my face as we sat in the waiting room. My head stormed inside. I was dizzy and heavy and short of breath. The doc checked my sinuses–all clear–but scheduled a CT scan to get a better “picture.” I’m highly doubtful there will be any findings, but like my mom says, at least it will be just one more thing we can rule out–cross off the list. The 347 item long list.

As we drove home, everything worsened. It was early evening and the sun pierced my head through the windshield. I felt on the verge of ralphing, but was also strangely  hungry at the same time, craving salt. I ate a little on the drive, and by the time we pulled in the driveway my mom asked “Should you just come to our house?” I groaned “Yeah, I guess.” I collapsed on the couch in the office with ice packs on my head and doused my face in peppermint oil. I took the last dose of pain meds I was allotted for the day, and just prayed in the quiet that any of it would work, would be enough. Tears streamed down my face, but I really wasn’t sad. Maybe overwhelmed, I don’t know. But I took deep breaths and Monty laid right next to me on the floor, like always. One of my arms dangled off the couch, intermittently petting his velvety ears. It always calms me down.

Roughly two hours later the pain had lessened, the nausea lightened, and I moved like a sloth to the living room couch to watch The Voice with my parents. Because THAT’S living the 34-year-old’s dream people! It’s an addictive show, I have to say. Then we watched Better Call Saul, and in the middle of it everything seemed to slowly start to erupt again, the damn volcano emoji!  The nausea was up to my throat, but I couldn’t throw up. My head and face felt like a thick, wide rubber band was wrapped around it five times, and all my hair was being pulled from the top. By this time it was 10:30. “Do you need to sleep here?” Marc asked. And just the thought of walking home made everything hurt more. “Yeah, maybe so,” I muttered. “Maybe we should get you in the bath?” My mom suggested. The idea exhausted me, but the symptoms were just too much, tired as I was, I knew I wouldn’t be able to sleep in that condition.

My mom drew me a bath. I got in her big tub, and she brought ice for my neck and head, and coffee, the old-fashioned migraine remedy. Monty laid right next to me on the other side of tub. Every once in a while he’d stand up and stick his head over the edge, lick my hand and even sip the bath water, which is probably pretty gross but it made me laugh anyway. I waited for the warm water to calm things down, and Monty waited with me. My mom would yell out from her bed every ten minutes. “Mare?” “Yeah.” “Just checking.” “Still here”

After an hour, the hot water seemed to make serene all the internal chaos. I was sweating in the bath and I just prayed that somehow I was detoxing– that whatever poison in me causing such a volatile reaction was exiting the building. I prayed each bead of sweat was a tiny drop of pain leaving me. Maybe it was a mixture of all of it, but it seemed to work well enough.

My mom brought me pajamas to borrow and I crawled into her bed. I couldn’t help feeling like I was five years old again. I remembered if I’d wake up sick in the night, I’d crawl into my parents bed, or even sleep on their floor. Now here I was at 34, the behavior hardly unchanged. Would it always be that way? Probably. We brought Monty’s bed in her room, so he squeezed between the armoire and the bed, every once in a while walking over to my side and just sitting there next to me, quietly panting. I’d pet him a little while and then he’d go lay back down. Poor dog, never knows where bed will be.

I was tired but couldn’t sleep yet, so a PBS documentary on Harper Lee played quietly on the TV in the background. “Just wake me up if you need something,” my mom said softly. I patted her shoulder, “Mom, thank you.” I just kept thinking how ridiculous it was to be the age I am and still need my mom so much, but more than that, how could I feel anything but extreme gratitude to have a mom capable of seeing me through so many dark days and nights. Particularly that one. Though it was far from the first one in the last few years, hopefully we’re growing closer to “the last” of nights like these. I thought about how much fighting we had to do, how much longer would we have to wait, but mostly how tired I was and maybe think about advocacy efforts at some other better time. What can we do in the meantime but love each other fiercely and just be grateful we’ve got anyone to hold our hand through it.

I am lucky, but I’m also painfully aware that all of this takes a toll–not just on me, but on my mom, on Marc, even on Monty! My mom was crashed for a few days after Monday, as was I. Despite my stepdad being unexpectedly hospitalized for four days not even a month ago with heart trouble and requiring a stent be put in, it seems like he’s the healthiest guy on the farm. Life is ridiculous.

I laid in my moms bed and said prayers of gratitude for the help I had. For the relief. Prayed that the cost of what happened wouldn’t be too much on anyone, though of course we paid our prices. Sometimes I guess, it’s just unavoidable.

The soft-spoken, gentile southern voices describing Harper Lee and her first novel which would change the literary world, To Kill A Mockingbird slowly put me to sleep. The ice packs rustled every time I changed position. Besides the discovery of her second manual in 2014– Go Set A Watchmen– no one could figure out why Harper Lee had stopped writing after creating such an important work as Mockingbird. I thought how hard that must have been, to feel you’ve reached the top on your first try, how maybe she felt she had nowhere to go from there. The power of self-doubt scared me. It had been such a long, persistent struggle, that day and night–these last few months. I prayed to Harper Lee. Give me the strength to grow bigger than the pain.

Maybe somewhere in the cosmos, ol Miss Lee heard my humble prayer. My mom let out a 18-harper-lee-monroeville.w529.h352.jpglittle snore, and I was relieved to hear her finally asleep.

I saw this photo on the TV just before turning it off, and something about it made me feel stronger after the day would finally end. I guess they call that losing the battle, winning the war.

Health, Happiness, Keeping On

 

Petition On A Mission

I realize not everyone receives the updates sent out on the status of the petition from change.org, so this is a basic copy and paste of that update with a few additions so we’re all in the know. It shares  the latest action we took and where things stand as of today.

I’ve been effectively in and out of a crash, and trying to manage pain that seems to have surpassed manageability. This has made it difficult to be the sort of advocate that executes all my ideas, completes so many goals, and more simply, publishes all the writing I do but bury in miscellaneous places.  I will be better at posting here like I used to do. Apologies for going AWOL a while. I suppose that’s another matter altogether. ANYway…

***

The box was too big for Matt’s car, so we assumed my moms car would suffice: a larger mid-size sedan. Still the corners jammed against the dashboard and window panels. The trunk? No, the trunk would not contain it either. So finally we had to put it in the bed of my step-dads old Toyota truck. I say ‘we’ but who am I kidding? Matt did all the literal heavy lifting. I actually took a photo by accident that perfectly depicts this point.

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On the way to Kinko’s, storm clouds of a distinctly Southern nature darkened and began thickening across half of the sky. A small part of me worried it’d start to rain and the box would get wet. But a bigger part of me felt more alive and hopeful than I’d felt in a while. Finally this thing was happening. But let me backtrack.

On Friday morning, (Sept 14th), I sat at my type writer fuzzy-headed after a crappy night of painsomnia and two hours sleep. But I was determined to finish this letter and write the words I felt Francis Collins would ultimately read. Something about that day, despite my feeling like a rotting banana, told me this long-ago set goal needed to happen without further delay. Time for that damn ginormous box that’s turned into a veritable piece of my living room furniture to finally leave. Time to begin the vital journey to its’ intended recipient in Bethesda, Maryland. (The NIH) (Francis Collins) (You get it)

This all took much longer than anticipated– to finish this part of the project. We printed the rest of the accumulated signatures since hitting 50,000. (!)  Printed the hundreds of pages of public comments left on the feedback page. Painstakingly blacked out all personal information on the 350+ prescription bottles I’d be using in lieu of packing peanuts. We’d completed everything but the personal letter to Collins I wanted to go on top of everything, Should he see or look through none of the rest of it, my hope was he would at least read a letter. A last attempt, if you will.

It was so hard to know which route to take in writing to him–what angle would really reach the guy. So many ideas had swirled through my head for weeks every time I laid down and stared at the ceiling, a hundred different drafts sat waiting inside me. I had to trust that the right words would emerge that day.  So I sat at my desk and banged at the keys of my typewriter. Intuition told me it might speak to him in a more immediate way for some reason. By the end it looked like a telegram to the president in the 40’s on the status of the war. (Not so far off, hardy har.)

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My healthy ally, close friend, and now fellow ME/CFS advocate Matt, told me a week earlier he’d also written a letter. We could include it if I wanted to. When I read it and saw how incredible it was–saw the effectiveness and resonance of words from someone watching this disease from the outside, I knew it needed to be included too.

Anyway, it was time to finish this last part of the job. When it was done, I began to pack the last of everything.

***

The box was filled with two tall stacks of paper on the bottom, comprising more than 2,300 pages of printed names. That’s what 51,000 signatures of support looks like. Cushioning and surrounding those bricks of names were the hundreds of empty pill bottles. (We don’t have recycling in my parish so I mean, why not?)  On top of the orange plastic ocean sat a brown box, just about the size of a Life cereal box. Inside were nearly 500 pages of your words–everyone that signed who had something to say. Voices of support for change, personal stories, loved ones stories, people sick for decades still holding out hope, and people sick at the end of their rope.

I was surprised how poignant and succinct so many of these messages were. These were the voices our government needed to see and hear (an ongoing need), so that box of papers went on top. Then of course, our letters.

The point is, we did it. We all did it. We came together and hit more than 50,000 signatures. People spoke up. The pill bottles piled up. Letters written, stories shared. Everything made it’s way into that box. And on Friday the whole kit and caboodle was taped up, sitting in the bed of a truck to Kinko’s, about to begin it’s travels to NIH. I kept looking out of the back window at it, as if it were a dog we were bringing to a farm for a better suited family to adopt.

At Kinko’s, a mostly disinterested, monotoned man asked us the typical questions and entered my uncertain answers into the computer. I was told to double check the info before hitting “accept.” National Institute of Health, Office of the Director. It felt dreamlike. I forget this man actually exists. Accept. And just like that, all that work, all our voices–in a box and carried with a grunt over to “outgoing.” Not without a picture first, of course.

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This mission so far has been possible because of the digital world we live in. Undoubtedly, none of it could be achieved without the accessibility and capability to assemble provided by the Internet and social media. For that, I am so grateful to live in the age we do.

But by putting this work onto actual paper made this crisis and our words come to life. I am one of the “millions missing”, and yet sometimes I have to remind myself my life isn’t normal. We can just do so much better, and the simple act of printing out each of your names made this reality, this need for change take on a visceral urgency in a way that names and numbers on a glowing screen can’t always do.

This was one of my major intentions in sending a box with everything printed. I wanted something people at the NIH could feel the literal weight of, could touch and hold. Something concrete they could carry with their hands. They’d be able to see what thousands of names demanding change looked like, and read our actual stories on paper. Holding our voices and stories and pleas for help in his hands, maybe Collins and those at the NIH might realize our fate is in their hands, too. They have the power to fix it. This is so much more than just a box of names.

My other point in all of this was to disrupt in a way that was not easily ignored. I wanted to get our truth and demands and personal messages delivered in an unconventional way–one that for instance, couldn’t be sent to spam. So thank you for providing me with material to disrupt with. A 24 x 24 box weighing in at just under 50 lbs should at least spark some curiosity on their end. So long as someone opens that box, I think something important is going to transpire.

I want you all to know, I realize this mission is far from over. The petition will stay open and running for as long possible. Sending this obnoxiously sized box with the things it contained was just one attempt at reaching the NIH. It’s certainly not the last, and I realize it may not work. But to really try always involves taking a risk. If this doesn’t work as intended, I can’t see it as a failure. It will only make me try harder.

So. 48.8 pounds. $100. And a lot of hope and prayers this box reaches the target. Thank you to my healthy ally Matt, for doing so much heavy lifting in all this. And thank YOU, if you’re still reading. For signing, sharing, speaking up, and helping demand change. It’s because of you we have something concrete to disrupt with. My gratitude is immense.

Out of everything, we cannot underestimate the power of our voices in this fight, and I intend for this petition to stay open as one channel where we can come together and say what needs saying. Thank you all who have spoken up and continue to. Thank you for making all of this possible.

Health, Happiness, O’ Little Town Of Bethesda

Need Some Funny In Your Life?

I have not seen this film, and I don’t think I actually need to. This trailer is so extraordinary, I think it might ruin how much laughter it brings me if I were to cross the line and actually watch it. If you need a good laugh, please watch this trailer, from a real movie made in the 80’s. (Not ironic) GYMKATA promises to bring a lot of things to the table. I don’t know what all of them are, but fighting from a pommel horse in the middle of a village and laugher are foremost.

Just knowing this film exists brings me comfort and is somehow a reminder that everything will be OK, even in times when it feels far from it. I don’t know how, this is just the power of humor people! And I believe in it, wholly. So, here it is, the film trailer that will save us all. Or at least make us laugh, which counts for something.

Health, Happiness, the 80’s

*Thanks to Matt, for showing me this glorious trailer one boring afternoon. It has brought me so much joy.

Cutting Down Trees Won’t Stop the Wind

77969e290ad545088eeb06c11ef0ce88When I was little, I thought wind was created by trees. I watched the branches bend and break sometimes, as I felt the currents move over and past me, blowing my hair around like I was a passenger in a convertible. A very strong force, what those trees could do. It wasn’t so long before I learned that wind existed in the desert. Whoopse. Naturally I then learned about currents and the true science of wind. Trees were indicators that it was windy, but were themselves were not creators of the wind. Duh.

So, how does this tie into the thinking around a disease I have? And secondly, why am I always writing about this damn disease?! So boring, Mary. But hey, this is my notebook after all. But mostly because there remains a lot of thinking to be done around this subject. The public’s view in this case matters, particularly the medical establishments. *Inconsequential anecdote, it’s very windy out here! It’s also really hot and I’d rather write indoors, but Monty made me come outside. In this case, the wind helps.

So, imagine for a moment that wind is a disease. It’s not so hard to do—sometimes you can feel it wholly, you can watch the effects of its existence in past and present form, you can even predict it to an extent, but is of course itself, invisible. That’s the start.

A powerful and controlling school of thought pervades many minds surrounding this disease; it confuses the behavior of trees as the cause of wind. Or it says that the reaction of trees to this wind is maintaining the wind itself. In other words, doctors—mostly psychiatrists, a lot of them British—are thinking the way I did when I was four. OK six. You get the idea. 

This dominant school of thought looks at the symptoms of this wind, some of which can be quantified through tests, some of which are subjective (self-reported) in the absence of diagnostic material and a lack of conventional biomarkers, and a lot of it hiding in plain sight somewhere, yet to be found. We’re getting closer, but that’s beside the point. 

Instead of seeing tree branches swaying violently as an effect of wind moving through them, this school of thought sees the behavior of trees as having something to do with the cause or sustaining of it. A common case of conflating cause and effect. Hence, their idea is to cut off the branches. Or in other cases, to just chop the tree down. So they do it. They take a chainsaw and remove the branches, one by one, and then stand outside next to the stripped down, naked tree, or in more unfortunate cases, the mere stump that remains. Outside, what happens? A blustery wind snakes up through the air, kicking up the leaves around their feet then letting them settle, blows their hair around the way a roller coaster does. Sometimes it makes a haunting, high-pitched howl. Still unseen, there’s no disagreement that the wind is making a nearly aggressive presence. In spite of all that chopping! Other times it arrives as a gentle breeze. In any case, they witness the wind despite their efforts. And for the little value it’s worth, the tree stumps says “Just an FYI, I um, I can still feel the wind.” The tree stump is generally ignored and a bird then craps on it. 

But they try other versions. They tell the tree stump to quiet his thoughts, imagine no wind is blowing. Or accept the wind, and live life as he always did as a tree…with branches…and leaves, despite not having those things anymore. He’s been reduced to a tumbleeed and being asked to live as a 30-year-old flourishing Live Oak. In spite of feeling like a tumbleweed, he attempts to live outside in the wind. He’s told to go slow, be cautious. But it doesn’t go well.

The wind blows on, the psychiatrists scratch their heads. They go back to the drawing board. Cutting off the branches, chopping down the tree, and still these powerful gusts of wind! It’s hard for them to wrap their heads around, and they’re not the only ones. This is a complex wind with a lot of strange behavior and variables. Particularly, standing in the middle of the desert where a wild wind blows, so forceful it’s difficult just to walk, none of it seems to add up.

Frustrating as a disproven hypothesis can be, it doesn’t have to be that way. It’s still an answer. A real scientist knows you go back to the drawing board despite you’re hypothesis being “wrong” or “right”, or more accurately, true or not true. You don’t throw it out, but by ruling out one idea, you make more room for the true one to emerge, right? It’s all useful information. Knowing what works and what doesn’t. For instance, Well my humble colleagues, it would appear the behavior of wind is not based on the behavior of trees. Let’s look into one of a thousand other ideas we have. It would seem that’s how progressive science would go. 

But…

Alas…

No.

Back at the drawing board, they can’t give up the ghost. They’re stuck on the idea that trees either make the wind or maintain it somehow. They’re convinced that stripping the trees, changing the trees thoughts, encouraging the tree to do things he’s hardly capable of, even if just slowly at first, will eventually make the wind stop. In the meantime, forrest are demolished, the wind blows on.

Hopefully, one day, this school of thought will be carried away like a fine dust caught up in a large gust of wind and patients with MECFS won’t be subjected to it again. Like in Aladdin when he drop kicks the magic lamp containing the evil genie into some other universe. It’s not that what they’ve found can’t help the people with this disease. Every finding is useful in it’s own way. But something like psychotherapy being touted as a treatment for this disease is as effective as cutting down forests in expectation of the wind to stop. It won’t. The studies that say they have are chock-full of issues, and the patients speak for themselves, if we’ll listen. Typically ruling out one theory means pursuit of another. It also means letting go, if you’re really seeking answers and aren’t attached to outcome. 

This BPS model has dominated the whole scene: the narrative helped shape the media coverage (and vice versa) that CBT (cognitive behavioral therapy) and GET (Graduated Exercise Therapy) were helpful treatments for those with MECFS.  It informed policies and advocated for “treatments” that don’t work, for a disease causing immeasurable harm to millions of people. And yet, they can’t let it go, convinced somehow, if we trim the branches like this or hack off the top like that, eventually this will work! If we continue to pursue this idea some perfect way, eliminating the tree will eradicate this wind. It won’t. They have worked this idea to death.

Specialists of this specific wind will tell you, will show you, that’s not going to work, because the wind is due to underlying geological processes. The people, the TREES, having their lives destroyed will tell you the same thing, but their voices won’t be heard as loud or clearly. Doubt has muffled their voices for decades. As such, there has been a lot of loss.

Like Peter Paul and Mary Sang:

The aaaanswer my friend,
Is blowin’ in the wind,
So pleeeease stop
Decapitating treeeeees

Very slowly, this historically dominant narrative is finally starting to change, despite opposition, which has doubled down on their bet that CBT and GET are actual treatments and helpful for sufferers. They will disagree with what I’ve written here, but that is nothing new. The BPS model, (biopsychosocial model) has reigned long past what it’s warranted, but in an historical absence of biomedical research and answers, it’s been easy for that to happen. We know better now, we know so much more, thus it’s far time we let that model go concerning MECFS. And for the sake of sufferers everywhere, we definitely don’t tout it as a treatment, when we know that this “treatment” can and has made patients worse. For many the damage has been irreparable. 

We are getting closer and closer to real answers, thanks in particular to organizations like the Open Medicine Foundation and the handful of specialists who’ve dived deep into the heart of this disease. But this organization runs off the charity of the public. I’ve said it time and again, but real scientists and doctors working as hard as they are, shouldn’t have to protest on the weekend so they can get their work done throughout the week. This is the whole reason for institutes like the NIH, which the public already pays for. 

The paradigm is shifting and I’m grateful for that. But charity alone is not going to pay for what is needed in the way of biomedical science. When you continue to pursue a model that’s collapsing in on itself, that’s half of how you’re harming sick people—by taking away already scarce resources that could be allocated toward research that has an actual chance of providing answers, and putting them toward a method that’s already yielded results. Those results aren’t the answer here, but there is one. There many be many. Answers lead to treatments, and hopefully, eventually, one day a cure. We need resources to go there.

I believe that will happen. I can only hope in the meantime that we hear and validate patient voices, recognize more humbly what hasn’t worked, and that we use past research to lead us in a new direction of what will.

Health, Happiness, Save the Trees 

 

**Please add your voice to the petition if you haven’t, especially if you’re an MECFS patient. Your story is important. We’re very close to 49,000 signatures …Good stuff yall, good stuff. THANK YOU.

https://www.change.org/p/increase-research-funding-for-me-cfs