We All Fall Down. The Stairs. Sometimes.

This all feels like some cosmic joke as I write this, but the sh*t show must go on. I wrote this piece intending to pay homage to the last month, which has marked an unexpected bump in my functionality. All due to a small but sufficient amount of useable energy I encountered, as if finding money in the street. Look energy! Pick it up! 

For nine months, this invisible life force–something you almost can’t really know you have until you lose it–has eluded me. And then, subtly and seemingly out of nowhere, it flipped on inside me like a light switch.

For the last month I’ve been hard at work on an important story about the opioid crisis; the data driving it, the policy, and the affect it’s having on millions of chronic pain patients. I’ve felt compelled to write it and share a side of the narrative that’s gone missing from the national conversation. The point is, I felt functional enough to devote myself to this article in a serious way. Almost every day for two weeks week, I put on real pants and drove to the downtown coffee shop, the one with terrible art work on the walls and unforgivable price tags, where I’d work for hours at a time. Most of you know 2019 has been a garbage pail of health issues, not really allowing exertion like that on my part.

The joke is, I’m trying to write a piece on how great I’ve felt, in one domain anyway, and I am continuously interrupted by how terrible I feel due to one of the more severe migraine cycles I’ve had all year. Also the ice pack strapped around my head keeps dripping water in my eye. Just great.

Despite the newfound strength I came into, my physical symptoms persisted. Migraines, face pain, POTS, cystitis, the badder disaster–all alive and well. The catch? Having this new, albeit small and yes, limited, amount of energy on board has been a game changer in terms of dealing with all the pieces that go into life with chronic illness and pain.

Finally room opened up in my brain and body for a resilience to deal with the symptoms  proactively, or distract myself from them (insofar as possible), or just enjoy the rare freedom you feel when you finally have a choice in how you’ll spend even 1/3rd of your day.

The relief it’s brought has left me in tears of gratitude. Not a relief of pain, but of burden, of carrying this heavy, physical weight around for so long. And finally taking it off.

It feels almost impossible to convey how much more tolerable the experience became,  finally having some amount of energy inside to help take it all on. It’s still a difficult and daily battle, but when you suddenly don’t feel the active force of gravity working against your every move, well, that helps.

What doesn’t help? Falling down a flight of stairs at your cousin Kenny’s house, the night before his moms funeral. Wait maybe that’s the joke. You know, this story is just so Gelpi.

So, maybe my month of reliable energy has begun to wind down. I’ll go out on a limb and say that becoming entangled with an industrialized fan on the steep fall down the stairs and breaking that fan with my face at the bottom, did not help. I had grill marks on my face people! Like some piece of George Foreman meat! Good Lord.

The point in all this was to pay homage to feeling GOOD, and the things you get to do when you’re not stuck in a dark HOLE. And so it shall remain. I’ll tell the Tumble-Down-Kenny’s-Basement-Stairs story soon, I swear it. I’d never hide such comedy gold.

It doesn’t easily escape my mind how bad one day in August was, just two months ago. I couldn’t lift my arms above my head, the weakness and heaviness and dizziness were relentless. My entire head throbbed with pressure, and I felt a total desperation wrap itself around me, barely able to keep my eyes open laying on the couch. I feared the physical feeling of that day would never end. And then less than two months later, I end up here…

Attending a Saints game with family and friends, yelling in the Dome to throw the Cowboys offsides, and most importantly, enjoying the hell out of myself. How could such a transformation occur in such a short time?

I can’t know. I stopped taking one of my anti-vitals. My mom prayed a novena for me after an especially bad few weeks. I pray my Hail Mary’s every morning, waiting for my head to calm down. All I know is the very terrible day in August did end, and for a while at least, I’ve been gifted with enough energy to participate in my own life. I’ve paid a price for things, but at least I did something to pay for. Most of 2019 has felt like a constant hangover without a sip of alcohol.

I just want to remind anyone who’s sick and in a crash or experiencing a rough patch to hang on. I know how desperate and forgotten and isolated it feels. How insufferably long the time can take to pass. (Trust me, this is the first time in 9 months I’ve had some level of functionality) The truth is we just can’t know the future. But given a chance to play out, turning (inward) as a spectator to our lives when we can’t participate in it firsthand, it will usually reveal some incredible grain of truth that will make life sweeter, easier, and closer to whole. At the very least, it will make us hugely grateful for the tiniest of things–and it’s hard to be unhappy when you harness true gratitude from within.

So what does the letup of a nine-month crash finally allow for? Well, really dumb but fun stuff that makes me happy. Like a few weeks ago when I gave Monty a bath. We came inside and I brushed him while watching college football. I noticed the little pile of hair was becoming pretty dense and also that it seemed it could be arranged, as if I worked at it, I could shape it into a smaller, furry replica of Monty. So that’s what I did…

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“Won’t my mommy be so proud of meeeee!”

And YEAH, I’m proud of my work, mkay? It took some real finessing. As you can see, the first few editions were not quite right.

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A bit too wispy…
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A bit too 1950’s mouse cartoon…

You can call this a waste of time and probably not be wrong. The thing is, when you’re feeling well enough to exert yourself in creative ways beyond just surviving, nothing feels like a waste. Things take on a new lightness and enjoyability. Even bathing the dog. Of course Monty was a wonderful and willing model. Speaking of which…

Monty’s good looks should have been earning us money ages ago. Thanks to the Aunt Becky scandal, I learned that “Instrgram Influencer” is a real thing and decided Monty needed to be one. We haven’t turned it into cash yet, but we do get a discount on merchandise from these brands that saw his picture and posted them on their pages. So yeah, we should be earning hundreds upon hundreds of dollars any day now.

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Who. Dat!
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This is what Monty thinks 23 hours a day.

Anyway, I’ve done more than make small, furry replicas of Monty and model him in bandanas. I finished The Snows of Kilimanjaro, which had me enamored for three days straight and I need more Hemingway to read. I’ve continued to work painfully slow on completing sudoku puzzles, as well do a lot of swimming because it’s October and 93 degrees and that’s just, you know, reality now.

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Panting. In the Pool. In October.

In the end, yes, I fell down Cousin Kenny’s stairs. But you know, the fact that I was well enough to be at Kenny’s in the first place, and subsequently do acrobatics with a fan down his stairs–well, that says something. Something good, believe or not.

Here’s hoping the recovery isn’t so bad. I write this as much as a reminder to myself as to others, of how fleeting all this is. That idea used to frighten me, as though nothing were solid and reliable. But now I find it revealing of a truth that’s freeing, a relief. This was always temporary. Changes can come hard and fast, but looking with creative eyes and a depth of perception, we can often find that they’re in our favor. We have to stay awake though. Give life a chance to show you how things turn out. As the adage goes: In the end, it will all be OK. If it’s not OK then it’s not the end. Cheesy, yes, but I can be on board with the idea. So march on soldiers. As always, we will get there.

I’ll just take the elevator wherever we’re going.

Health, Happiness, and the Bruise on my Thigh Has Given Me Three Butts. Three.

Navigating Healthcare When You’re Chronically Sick *and a Chronic Pain Patient (1)

When I say the seven days of last week were the epitome of an absolute disaster of epic Murphy’s Law proportion, I’m not exaggerating. I am psychologically traumatized by the amount of roadblocks that emerged in just trying to carry out seemingly easy decisions the doctor and I agreed on.

It’s hard to convey how defeated it feels to be so desperately reliant on a health care system that appears to lack any incentive to see that you’re taken care of. Pull yourself up by your own bootstraps is a phrase I’ve heard all my life. There was a time when that was possible and I had no excuse not to be totally self sufficient. But that all changes when you lose the reliability of your body. It’s like trying to beat a video game with a broken controller in your hands. 

I feel trapped. Chained to a medical network where in every domain outside of actual face time with the doctor, I am a policy and not a patient. Whether I have access to what is necessary to maintain any health seems to have become almost anecdotal.

My time and energy are consumed by the position of full-time liaison, constantly navigating the logistics between the doctor, the doctors own front desk staff, the pharmacy, the insurance company, and adjusting to the perpetually changing federal laws that affect the dispensing of my medications. Maybe it’s this easy to fall because there are so many gaps between doctor and patient, and they’re widening all the time.

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See? Here I am enjoying myself at the urologists office.

I can’t remember when this part of life with chronic illness became harder than managing the physical illness itself, but that’s where I am now. I’m also realistic and understand that in the context of a multi-systemic disease like M.E., a lot of my time will go to doctors and exams and bloodwork and prescription refills and pickups and insurance appeals etc. etc. etc. That’s simply part of life when you’re sick and I accept that part. (See photo)

What I struggle with is the fact that maintaining my healthcare has become a battle. Keeping up with the aforementioned aspects of my health between doctor appointments is a fight, as constant and reliable as the disease I wake to everyday. 

This probably all sounds generic and obvious to say; But I’m not actually referring to the conventional financial or accessibility issues of our system. I have health insurance. I’m not talking about having an inadequate plan or the absurd price of prescription drugs or the lack of access to good doctors. On the whole I have great doctors. So why, when it comes to that crucial part of fulfilling the medical plan that a doctor and I have decided is in the best interest of my health, am I met with constant resistance from the moment I step out of the exam room?

That resistance fought me at every turn, every day last week. Beginning Monday, the said battle of having my health needs met ensued due to simple administrative mistakes, systemic gaps, and changing federal laws that made shitteth hitteth the fanneth. I will share how the system tends to fail with the slightest pressure, but first I think it’s important to explain my current state of health and why I require the doctors, treatments, and care that I do.

I am writing about this not to pettily vent or point an ambiguous finger—believe me, I’d rather forget it ever happened. But last week was not a fluke. This happens constantly, and it will happen again. But if a chronically sick person with good health insurance and good doctors has to fight this hard and often lose when it comes to basic needs– like prescription refills and scheduling timely follow-up appointments– something is broken. Maybe by highlighting how laws, policies and medical personnel affect the health of an actual person, it may somehow in the end help fix or improve them. Maybe I’m dreaming.

**State of the Human**

Most are familiar with my physical circumstances. Quick status:  I’ve been fighting a chronic disease that lacks treatment or cure since I relapsed a decade ago. As a result of many things going awry in my body, I am in pain all the time. Without precise disease treatment, the best we can do is manage the many symptoms of M.E. In my case, fighting chronic pain is the hardest part.

In both legs I have something called small fiber neuropathy. This is a deep ache, basically everywhere there is skin, and typically a burning in my feet and calves, especially if I stand for more than 15 minutes. My feet often get physically hot and sometimes swell, as though I were some pregnant broad, but nope! All of this began around age 25, when the restless leg syndrome also worsened at the start of my relapse. It’s like an electrified current running up and down both legs that won’t turn off. 

Untreated, my legs ache and burn constantly, but worst of all, they make sleep impossible. At best it comes in one to two minute fits and bursts before the pain wakes me again. Imagine being pricked five times by a safety pin every 90 seconds throughout the night. You’re getting there…

Beyond my legs is my head. Or my brain I should say, because that’s where the pain feels like it’s emerging from. It’s as though my brain were swollen and pushing against my skull from the inside. It’s a chronic pressure and pain with very frequent migraines. Five years ago the pain moved into my face—not an acute pain, a widespread pressure pain like a tension headache, but beyond my forehead it extends to the top of my head, down to my cheeks, jaw, and even my mouth sometimes. On bad days it’s just my whole head.

Some other treatments have included steroid injections in my head and back of my occipital nerves, as well as lidocaine injections in my face to help control/ disrupt this pain.

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See those little bee stings? Those are injection sites. Is it fun getting shots into my temples and face? No. But neither is 24/7 pain, so a few seconds of needle pain is nothing in comparison.

Perhaps underscoring my head pain are the issues with my neck. I’ve had a “bad neck” the way a seventy-five-year-old has a “bad back” since high school. There’s a good chance some of these neck issues are driving the head and face problem, but we’ve not been able to land on anything definitive. Trust me, we’ve tried, and we will continue to. We’ve spent years and years searching for answers, visiting doctors, & trying a lot of techniques—from chiropractors to physical therapy to acupuncture/cupping to two weeks of ketamine infusions (That’s a story I’ll tell soon because…Damn.) 

Lastly I’m dealing with chronic interstitial cystitis pain that resurfaced in December with an infection. We treated and “cured” that with antibiotics, but the pain and symptoms of IC decided to stay. In July those symptoms worsened drastically and have added to my pain load. I am hoping and praying and trying a lot of remedies (including homeopathy) to get the IC under control, but it’s not been easy. I didn’t know it was possible to pee more than 30 times a day but guess what? I think I hit 40 once.

We recently had my MRI’s looked at by an M.E. literate 3rd party who pointed out abnormalities on my brain stem and cervical spine. One included a minor CSF blockage and bursitis on five disks. These structural issues would likely explain a lot of my pain problems and may even be responsible for other symptoms like those from dysautonomia.

Some of these abnormalities can be fixed with surgery, but I have to see a specialist who would decide ultimately the best course of treatment. If it meant the possibility of an end or improvement of this pain, I’d go under the knife tomorrow. I’m ready for my life to start in so many ways, and I do believe we will find an answer to all of this. In the meantime…

Due to this constant high level of pain, I see a specialist and take prescription pain medicine, as well as undergo nerve blocks, trigger point injections, and live with an ice pack on my head to help find relief. This combination of treatments help keep my high level of pain down to a more manageable one so I can have some quality of life. I have not changed the medicine in eight years or the dose in more than four. Want to see what I look like after a nerve block?

Creepy, I know.

I’ve provided my situation regarding pain because this is where most people have a strong opinion one way or another, and more often it’s that you’re just being weak, don’t really need it, or you’re treated like an addict. Often that attitude comes from front desk staff or a pharm tech filling my Rx! I wish this perception would change and that people understood there are millions like me; prescribed to this medicine for the reason it was created: to alleviate physical pain. We take it as prescribed and there’s no misuse. It’s a matter of livelihood. That’s. All.

Having to rely on medicine to evade my natural state of pain is not something I’m happy about or proud of. I’m also aware it’s not a ‘solution.’ But I do know my life would be unequivocally crappier and less functional if I had to face the world fighting such a high level of pain 24/7.

For that reason, I’m grateful for my doctor and for medicine that provides some relief. Until science catches up with understanding my disease and treating it, this allows me not to be tortured at all times. I don’t think that’s anything we should have to feel shame about.

There, now you’re caught up…on one part of the battle ;) More on last weeks clusterbiff and how to prevent it, coming up.

Health, Happiness, & a 10 on the Pain Scale

 

Summer Part 1: The Bill Always Comes

**The Summer of The Winter of Our Discontent**

There’s this key moment in Sudoku, when you find a clutch number that gives way to the others and begin to just fall into place like a waterfall. Much like the card you play in solitaire where you know you’re about to crack it. I had just written in a 6 I’d been trying to find for way too long. So began the waterfall, and I filled in the other boxes proudly– possibly smugly because this puzzle felt like it was out to trick me personally and now I had it in my hands! Until I didn’t, and in slow motion realized I had two number 7’s in the bottom row, and I just wanted to hit myself.

I tried to work backwards to fix it, but it was irreparably blown. I blew it. So, there went the last two weeks.

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Somewhat of a Doodler 

Of course, I’ve been up to other things. It’d be funny if after a month break all I had to show for it was a failed puzzle. Can’t all be winners.

For starters, summer reading. In July I was booklets after finishing Killing Commendatore, and sad I didn’t have more Murikami to lose myself in. Finally I scanned my own bookshelf for unread potential treasures and picked up Steinbeck’s The Winter of Our Discontent, which doesn’t sound like much of an apropos Summer read, but it’s just that. It’d sat idle on my shelf for years, even though that white house on the cover had caught my eye a thousand times. I had no idea the brilliance I was missing! It’s like suddenly realizing an old painting in your closet is worth some absurd amount of money. Once I dove in I didn’t want out, which surprised me when it shouldn’t have. It’s a classic, what did I expect?

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The book was written in 1961, and given the passage of time I expected a natural  disconnect. I’ve been so wrapped up in modern fiction– for too long probably. Yet somehow the America and the People and Assumed Human Decency that Steinbeck depicted 60 years ago were all completely recognizable today. You wouldn’t have to drive long before finding a sister town to “New Baytown”or look very hard before confronting modern replicas of his primary characters. Ultimately he tapped into the problems, desires, personal demons and moral choices most all of us face at some point– it’s just astounding to me that Steinbeck unearthed such deep, quiet struggles and could discern which ones were engrained in us and would stand the test of time.

Maybe that’s a litmus test for what makes a book a classic; if the suppositions and ideas can weather the decades and remain solidly true, unbothered by time, then you’ve got yourself a winner. I guess that’s pretty obvious, but it felt remarkable to come across.

The book reads a lot like a memoir of protagonist Ethan Crawley, who is so likable, in the first place, it’s hard to put down. I felt a relief knowing there was someone else who felt these ways –about money and politics and social hierarchies and expectations. He makes a joke out of probably 85% of his replies, and rarely does anyone get it, or choose to acknowledge it with a laugh anyway. That felt… familiar.

I feel similarly when I watch SNL sketches that crack me up. It’s not in the scene itself, but in the imagining of the writers who wrote the sketch, and knowing that real people out there recognized absurdity the way that I do. It’s easy not to feel seen in the world, but knowing other people see things the same way you do, even perfect strangers, feels like the twin brother to feeling understood. One scene in the book hammered this feeling in…

Crawley and his wife have been invited to another couples house to discuss “business”, i.e. money, but they have to go through the obligatory song and dance first.  That means a formal serving of tea and then petty small talk. Everyone sipped tea and each delivered some anecdote on the subject of tea. He’s bored to tears. When it became Ethan’s turn to chime in, he brought up Danny, the town drunk, and a terrible nightmare he’d had about him. I laughed as he described feeling his wife’s quiet anger that he didn’t keep up the supposedly pleasant tea talk, and now everyone had to comment about a despairing subject. I wonder how many pleasant bouts of small talk I’ve Debbie Downer’ed with an some morbid comment that I found funny? Probably too many. Anyway, it’s a perfect scene.

A few of my favorite passages:

“So many old and lovely things are stored in the worlds attic, because we don’t want them around us and we don’t dare throw them out.”

I don’t suppose there’s a man in the world who doesn’t love to give advice.”

(Ethan)”Is Marullo part of the group?”

(Wealthy friend) “Certainly not. He goes his own way with his own crowd.” (The Italians. Marullo is an immigrant)

(Ethan)“They do pretty well, don’t they?”

(Friend) “Better than I think is healthy. I don’t like to see these foreigners creeping in.”

Sounds familiar eh?

“There is no such thing as just enough money. Only two measures: No Money and Not Enough Money.”

“No one wants advice–only corroboration.”

“I always put it down to fact that a wife never likes her husband’s boss or his secretary.” “All men are moral. Only their neighbors are not.” “Not only the brave get killed, but the brave have a better chance at it.” “For the most part people are not curious, except about themselves.”

I must have underlined half the book.

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Next I read Hemingways The Sun Also Rises, another of the greats that’d been collecting dust not far from Steinbeck. When finishing it I wondered why I haven’t read more of the classics, because this was a damn great book too. There’s no good reason I don’t have more of them under my belt, except that I didn’t take enough literature classes in college I guess, and I hardly know what the real classics are. So, I’ve begun a list. Who cares. Anyway I won’t go so far into this one. As tribute to Hemingway and his distinguished, succinct style I’ll say this: The book is rather great and you should read it. You’ll have a swell time. 

 

Especially if you love Paris, Spain, the Pamplona Fiesta, fishing, Bullfighting, and forbidden love. Hemingway was clearly a romantic. Did you know he was married four times? Only a true romantic gives marriage that many goes. 

The passage that stuck:

“I had been getting something for nothing. That only delayed the presentation of the bill. The bill always came. That was one of the swell things you could count on. …You paid some way for everything that was any good.”

If that’s not the truth I don’t know what is.

I kept thinking about it’s application to health. That very often, when you have your health, it’s free. They say your health is like your breath–you don’t pay attention to it until you lose it. I think back on life before the relapse, and how I’d done nothing to earn my state of ‘decent’ state of health. I’d also done nothing to earn the relapse that eventually followed. It felt like someone at my door, come to collect a bill every day, when I hadn’t purchased anything. When well, I was getting something for nothing, without even knowing it. Once sick I had to begin paying for those somethings, and surrender what I couldn’t afford.

My hope, and I think my belief, is that it doesn’t have to mean the surrender of those things that matter most. When you’re forced to give things up, it feels just that way. But learning to live without them has been an ongoing lesson in letting go of what I thought I needed in order to live a life I liked. You end up finding a whole other you behind those old roles. It offered a strange opportunity to see my own self without these external identifiers. That allowed me to see the world differently too. I’m (still) learning it’s up to me, more often than not, how I choose to see both.

But, as the man said, you paid for anything that was any good. Many things that allow me to feel alive and good come at a cost. It’s like a tax on fun, in the currency of health. Actually I also pay the tax when I haven’t had fun. REAL COOL BODY THANKS. At any rate, I feel fortunate I still have people and places and experiences to (sometimes) overindulge in at all.

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Like him. He’s worth it.

I imagine everyone has their respective “things” or indulgences for which a bill reliably comes. And maybe depending on what point we’re asked, during the playing or the paying, would we consider whether or not the juice was worth the squeeze. For me, mostly, paying the bill feels worth it when I’ve decided to splurge. Girls gotta live sometimes.

Health, Happiness, Paying the Tab

One Arrow Only

Want to hear a funny story?

Well first, some housekeeping. It’s been more than a while, I know. I feel like an idiot bear emerging from hibernation 3 months late and everyone’s like Dude, what have you even been doing? Getting crushed, that’s what.

A health update for 2019: mine is still mostly missing. Hate it when that happens! 2019 has continued to be a slow-rolling, sick train, punctuated by outings to every type of doctor, assuming I don’t call in sick to the appointment. Calling in sick to the doctor; what an absurd reality.

This elongated crash state feels like some kind of warped dream when I reflect on it. I would blame this on the repetitiveness of days that can start to feel indistinguishable from stagnancy. It feels like…

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Day
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After day…
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After Day…
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After Day…
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After Day…
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After Day OK I think you get it…

That last photo was on my way home from a cystoscopy, which they put you under for, thank Gawd. But I was a little…out of it. The procedure is supposed to help the interstitial cystitis, but low and behold, I still find myself having to pee like a racehorse a LOT, soooo, maybe it’s just taking a while to work. Here’s hoping.

As always the creative challenge of life with chronic illness continues. What a strange conundrum, living with a body that doesn’t know how to function as a body. So, what to do?

Reading Murikami’s 19Q4 followed by Killing Commendatore, which I’m sad to have just finished, have kept my imagination wild and busy, and I wish I could thank the guy personally for what joy he’s brought into my life. Reading Murikami’s stories doesn’t just give you ideas to reflect on–it’s a really involved experience just reading one of his books. It’s very involved somehow. As though a real exchange were taking place, but I don’t know how that is possible.

Before walking home from my parents some nights, I think of the characters inside the pages, waiting on me to get into bed and open the book so they can get on finding their way. It’s by far the deepest I’ve fallen into a body of work, fiction anyway, and I have absolutely no idea how he does it. I’m just glad to get lost in something so positive. It’s too easy to fall into counterproductive thoughts or habits when you’re so physically limited. So as always, it takes a good chunk of mental exertion to stay on the right side of the experience and to be cautious in how I tell myself this is all unfolding.

***

For no good reason at all, I get into bed at night and truly believe I’ll be improved tomorrow. I imagine all the things I’ll do. All the catching up and even what clothes I’ll wear while I’m busy bustling around the house. I can see myself cleaning out closets and on the phone, checking things off my list–Monty following me, room to room. I can envision it all, and drifting off, I always expect that tomorrow will be better. And yet for roughly 120 tomorrows, I’ve awoken to mostly a repeat of the day before. Oh real great Universe! 

Now and then I receive some improved feeling that I’m finally rounding the corner of this thing and the worst is over. Perfect! Then either hours later or two days later, I’m paying a high price for what feel like very petty offenses. The invisible line of this thing– it’s the most frustrating part. It makes any kind of management of it feel impossible.

It’s like driving through a backwoods town in the middle of the night without any headlights on. The “warning signals” of this illness are meek and inconsistent. You have to pay such careful attention to what can be a trigger, but even still, it seems sometimes you crash for no reason, or have a full month of migraines for no good reason. It can be hard to see straight at all and you wish you could just turn your danged headlights on!

I  am surprised this crash has endured so long. But maybe it’s silly to be surprised. It’s certainly worthless to take it personally, and yet it’s easy to feel that way. Waking up to the same fight day after day can easily fuel the ego, which will try to convince you of just that. That it’s personal and unfair, and going down that route doesn’t do one bit of good. I have to keep things straightened out in my mind and brush off ideas that are useless and untrue. Maybe the truth is simpler more often than it’s complex. As Tolle says, “It’s neutral. It always is as it as. Nothing more.”

The truth here is, this is the nature of the illness I have. It waxes and wanes, so there’s no reason to be caught off guard or believe I’ll never improve. The fact is this is a disease behaving like a disease. The physical toll and reality are hard enough, no sense getting hit with a second arrow, right? The second arrow is feeling bad about the first arrow. The first arrow is being chronically sick in the first place. One arrow only, please and thanks.

Defaulting back to simple truths is how I’ve been trying to handle all of this, psychologically, but of course it’s not always so easy. Actually it’s never really easy, but it is meaningful when I can find joy and purpose despite it. I’m happy to at least know what ideas and thoughts aren’t helpful to the situation and to vanquish them before they have a chance to take hold and grow. I’m happy to have the counsel and ear of my mom, who hears me out and comforts me when the struggle feels too big, without me barely having to say a word. Talk about gifts you cannot buy.

Despite knowing certain truths consciously, I find myself always questioning myself. I lay in bed thinking This is obnoxious. There must be something I can do. But some days really are just bed-to-bathroom days, and I have to be honest about what I’m capable of. My life feels split in two sometimes, because so much of my communication with people is through text. So I’ll be lying in bed feeling deadly, but texting smiling emoji’s with plenty of exclamation points to show my love and enthusiasm for other people, and I think how strange it is, the dichotomy of the life I project sometimes and the one I’m actually living. I imagine maybe everybody struggles with that, in their own way. We all contain multitudes.

The timing of all this is crappy, of course. There’s never a good time for a crash, I suppose, like there’s never a good time to break up. But there are worse times for each. Being this crashed in the middle of trying to pack and prepare for a move is like the timing of getting dumped on your birthday. Oh well. Even after birthday breakups, people recover. I think.

***

The story!

Last week I was tired of waking up and feeling like I was on my deathbed, naturally. So, I figured there had to be some good meditations on waking up and getting your body psyched for the day. Right now, waking up feels like I went to sleep by getting hit in the head hard with a frying pan, like the characters in cartoons. I’ve also been very weak in the mornings and getting out of bed has been really challenging.

So, I find a mediation easily on youtube, geared toward waking up and energizing the body. It’s 15 minutes. Great. I press play. 25 minutes later, I wake up to a commercial playing and realize the meditation meant to wake me up peacefully sent me back to sleep. Swing and a miss! So, I try another.

This one is also 15 minutes and looks promising. Energizing! it claims. So, I make it through the first 13 minutes. I’m having a hard time focusing because I’m really weak, I’m fighting the bone-crushing fatigue and my migraine is back. But on with the show. The woman guiding the meditation says to repeat the phrases she’s about to say out loud. OK… “Repeat after me” says the slow, assertive voice emitting from my phone. “I feel strong and powerful.” I can’t help but let a smile melt across my face. I say it anyway. “I feel strong and powerful!” “I feel energized and ready to take on the day.” My smile grows bigger. “I feel energized and ready to take on the day.” Now I can’t help but actually laugh. “My body is healthy and my state of mind is focused.” Ummmm…

At this point I am half repeating and half laughing, because I don’t feel these things the woman is saying, like at all. But the fact that it’s making me laugh feels like a success all on its own. A few minutes later, I fall back asleep. BUT, it’ a very peaceful sleep. So maybe it wasn’t a total loss. I imagine once asleep I was “energized and ready to take on the dream.” ;)

Maybe when I’m a little stronger it will work. I don’t think it will be long now, yet I still have no idea why I think that. Owell, it feels good to believe it anyway.

Health, Happiness, and I FEEL STRONG AND POWERFUL

 

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 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! 

 

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!

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.

IMG_8406 2

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

New Study I Made Up Finds Letting Incoming Calls Go to Voicemail Won’t Stop World From Turning

Modern Manners For New & Changing Digital Millenia…

Next Time: The Downfall of the Handshake, With Detailed ‘How To’

(We Seem to Have Forgotten Leaving Many With the ‘Soggy Bread, Flaccid Finger Shake’…shutter)

In the meantime, here is a flowchart highlighting results from the study, and may help you decide whether to answer your phone, or allow a call to go to voicemail so you can call text back at a possibly more appropriate time. This study comes from the University of Life and may be published in the Lancet–still waiting to hear back Screen Shot 2018-07-30 at 2.06.09 PM

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Health, Happiness, Sorry the Font Isn’t Bigger-I was limited. Party On.

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

The Catch-Up

A suitcase lies open in my hallway still. Anyone care to guess how long it will stay there? Mine is a week and a half, but who knows. Maybe I’ll get energized this afternoon and lug it to my closet, where I’ll continue wearing clothes out of it as though it were a portable dresser. That’s basically what it’s become. And hey, that’s OK!

Returning home from travel has it’s perks—like climbing into your own bed, returning to a dog a like Monty (who, if I’m being honest, exhibited roughly 5 seconds of excitement and then acted as if I’d never left at all). Walking into your own place of familiarity and taking a deep breath. Ah, so this is what my place smells like. Not bad! Even if you’re sad to have said goodbye to the people visited, a grand relief always seems to accompany coming home. Unexciting, mediocre, quiet, deer-less home. What’s tough about it is the game of catch-up you’re about to play.

As soon as I enter the front door, all the projects that have been mentally stacking up, making their way onto various to-do lists over the years seem to glow brightly, asking to be next. I feel a wave of inspiration- paint the sunroom! Organize my closet! FINISH PART 1 OF THE PETITION PROJECT. (More on that later) Paint the armoire! Return my 10,000 plastic bags to the grocery store. And these are just simple tasks, even if some are bigger, more time-consuming than others. I bought the paint for my armoire, Parisian Grey, two years ago. It’s been perched on top of it as though it were real decoration. And none of these include the creative endeavors I’ve been dreaming of starting or working on or finishing the last few years. They’re just things, most of them. And yet they take years to do. Years! Again, ridiculous.

There is so much I feel I have to do. I have to finish. And ever since entering the world of advocacy, those tasks take an obvious precedence and a new urgency over the rest. But traveling means you not only ‘check out’ of your little world a while, it also means you don’t get to return to it just because you’re back living in it again. You have to recover first. I always feel a small sense of guilt when I travel, because I know it will be a hindrance to finishing the important things. I always fear a loss in momentum, so I go over my plans in my head like a song on loop before falling asleep. Until they melt and I can’t remember what I’m even thinking about anymore. But I’ve written about plans before—they’re about as solid as jello. Anyway, the plans are a basic timeline of the things I’ll do when I get home, but that means about as much as saying “one day.” Still, you know how making a list makes you feel organized, even if you do nothing on the list? I guess it’s like that.

Because where do things lie, actually? For starters, my suitcase lies open with clothes spilling out like the innards of a science class frog. I couldn’t even be bothered to wheel the thing to my closet or bedroom. We arrived home just after midnight- Marc wheeled the suitcase to the hallway and that’s where I laid it down, put on my pajamas, and immediately climbed into bed. From there I spent three days. Poor Monty, a boring few days for him I imagine.

I was out of juice. Is this a poor excuse for leaving a suitcase in the middle of the hallway? Sure, fine, an excuse. I don’t care what you call it, it’s simply the case that when you’re physically weak, in pain, running on empty, your priorities become very compressed. They almost become easier to sort and identify, because your options are reduced. A lot of people seem to be under the impression that more choices are a good thing. But when I stand in front of the toothpaste aisle and there are 40 different tubes to choose from, I sort of just wish there was one or two. If there’s only two to choose from, or if one costs 5 bucks and I’ve only got $3, well then there’s not a whole lot to think about. That kind of thing.

You know what else is on my list? Laundry. Nothing but a regular old chore that I, like my mom, happen to enjoy for some reason. (I also love ironing, if I can sit…) However, the washer and dryer are at my parents house. That means walking the approximate 20 steps there and back and there and back holding a basket of heavy clothes. Darks, whites, delicates. Are you bored yet? Me too. Is laundry a hard task? Of course not! If you have the energy to do it. But when you’re playing catch-up, calculating every move as if it were dollar bills you had according to a daily stipend (or see the spoon theory) then there just isn’t enough money for tasks like this. At least in the beginning. And I was considering painting an armoire! Hah. Hah.

I realize that people with a shallow knowledge of MECFS might roll their eyes at this ‘predicament’ if either of us would even call it that. (I wouldn’t actually, I’d call it the simple and unfortunate state of things) Yeah, laundry is a pain in the ass. So is unpacking. 20 steps to your parents? Get. Over. It. In fact sometimes I think these thoughts myself! But, they don’t really help, so I let them go. The point is, I can see why this thought pervades so many people’s minds, which is to say, I can see how much work still remains on our plate when it comes to this disease. The Post-Exertional-Malaise part of this—the hallmark symptom and also another name doing zero justice—is also the part that no one sees.

I realize I’ve written about this before, and it’s not my intention to be redundant, but it’s not as if this is a publicly, well-understood or moot point. It’s one of the biggest features of MECFS that people have the hardest time making sense out of. That includes people with the condition! Both are understandable. Unless you live with someone who has this, you don’t truly witness the price attached to attempting to live in the real world a while—which if you’re moderately functional, or can play that way at least a little while, you’re always going to try. The soul needs what the soul needs. But the body pays a price.

This doesn’t even mention that you could be one of the hundreds of thousands, or more likely millions of people who return from some normal life event and pay a price in the form of a crash; weak, heavy, dizzy, pain, brain-slow-as-sap—and they do live with people who see it. Does this mean they believe it? No, it does not. In possibly more cases than its’ opposite, the sick person is assumed a malingerer, lazy, aloof, or hysterical. (Ah, if only I had the energy to be hysterical. Wait I’m hilarious, I take that back) I can’t imagine the crushing doubt from people I love, stacked on top of a crash I’m earnestly trying to climb out of. And the fastest way to regain your strength is honest-to-goodness rest. And guess what laziness looks like? You see the problemo there. In this way, I’ve been extraordinarily lucky. It doesn’t mean people ‘out there’ always smell what I’m cooking, but how could I care? I’m hardly out there. The people closest to me are helpful, supportive, encouraging and compassionate. You know, the things you crave when you’re sick. Imagine being eight months pregnant and no one believing you. On top of it they’re suggesting lots of herbs and yoghurt or something. Wouldn’t that be weird? YES IT WOULD.

Anyway, I’m writing about this not because I face it in my own family, but because I’ve become so aware of the staggering amount of people who do. The emails I get and the stories left on the petition page are crushing, heartbreaking and keep me up at night sometimes. I’ve got insomnia anyway so, what gives? This isn’t about me, it’s about doubt, and the incredible amount of damage it has done to people’s lives. Vulnerable people who need help and encouragement, where they’re getting skepticism, judgment, and advice. This is why we have to get it right. And like 40 other reasons, but you feel me.

The nice part about the suitcase in my hallway is that I laundered the clothes before I came home, so they smell like Colorado! With a touch of Southwest Airline Zest. The advocacy has to come before the painting and the laundry and the bath I really would like to give Monty because he’s beginning to smell like a dog. I don’t have the energy for all of it at once, but I can do a little at a time. People have emailed to tell me the petition is a waste of time and won’t do any good. They might be right, but even if they are, it’s a little too easy to shout from the sidelines, isn’t it? Also, is that maybe a waste of time? We can at least say, if you’re not trying, your chance of changing anything at all is zero. And I sincerely don’t believe that. Maybe this project won’t work, but I don’t think it will hurt. So, I’m going to keep trying. If it doesn’t work, I’ll try something else.

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BONUS: We’ve surpassed 48,000 signatures on the petition. Boo Yah!

Unfortunately, it takes a very long time to scratch out all the personal information on over 300 prescription bottles. And since I’m sending the 2500 pages to Mr. Collins in this box with these “packing peanuts”, the process is taking longer than I thought. At least I can scratch out info on a bottle even from bed. I promise I’m working on it, and will deliver on what I said I’d do, which is to attempt a genuine disruption. Emails are a little too easy to delete. Tweets are easy to ignore, if they’re read at all. It doesn’t mean we stop those things, but I’m trying to think outside the box. Hardy har. This, I’m hoping, will take a moment of consideration before it’s thrown in a dumpster or lit on fire. Either one. That’s the hope, and at least when you’re trying, there is some hope to hang onto.

There are so many of us in the M.E. world looking for something to grab onto, particularly through those dark times of despair. I’m hoping to add at least one hand that will reach back when they are searching for a way out. We’re going to get there, so hang on.

Health, Happiness, and Catching Up

P.S. The petition has been gaining signatures and is now over 48,000. My reliable calculator says we have only 1,643 before reaching 50,000. I say we make that happen! If you haven’t yet, please sign and/or share the petition. Every name, story, comment helps. Thank you, all of you.

‘Swearing is Caring!’ Cursing For Charity

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

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

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

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Serious Biz

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

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

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

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Wait, how do you pronounce Meekifs?

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

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

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

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

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