The Thick

Blindfolded, deafened, gone for more than 30 years, I think a native could return to Louisiana in the thick of summer, depart a plane at Louis Armstrong, inhale once and know exactly where he was. Despite the cliché, there is “something in the air” here, yes mostly humidity and probably some indisputable carcinogens, but something else in that first sauna breath you take–The one that wets your lungs with tiny beads of moisture and probably all your other organs too. That first thankless inhale of steam disguised as air: it’s as distinct as the creeping surprise of the Vegas lights after endless, sleepy desert,  unmistakable as the New York City skyline, tangible as the feeling of velvet soft sand on your feet in Destin, once again–it’s always the same. Maybe there’s where the comfort lies. No one ever doubted New Orleans is one city in the country with what we’d call ‘personality’, which is rare in itself, but that you can feel this elusive, geometric charm and how quickly it engages with you, within your first breath of arrival! It’s one reason I love calling this place home. I like the certainty of knowing just where you are. It’s maybe why Percy’s The Moviegoer is so perfectly set in New Orleans (and surrounding areas) for Binx Bingsley, whose fear is being a nobody, nowhere, or anywhere. He wants to be Somebody, Somewhere. And that characters angst always resonates with me when I’m doing something so Louisiana particular. Even it’s just arriving at the airport.

This is not to say there is charm in 98 degrees with 100% humidity and a “feels like temperature of 112!” laughs the thick banged weather lady. With certainty, this place is a gym sock in the summer. I’m writing from inside a gym sock. The cicadas drone outside, another distinct assurance you are where you think you are, their shriek understandably creepy to newcomers, but I think they’re mostly carrying on about the heat, like the rest of us. There’s also the two weeks of swarming termites, and cock roaches, and mosquitos the size of so and so, but it’s all a part of the agreement of summer and survival and Louisiana. You do actually have to make sacrifice to live here, bear things other places do not and would not bear, but somehow it adds to the solidarity of being a citizen here, like you must earn it if you weren’t born in it, and if you were, you might not see any novelty in what I’m mentioning at all. Maybe it’s that I didn’t always live here, had to re-gain my Southernness that I appreciate otherwise somewhat awful things, but even awful things can be special.

The weather is usually such a boring topic of conversation–a fill in topic with people on an elevator or someone you have absolutely nothing in common with. “Gosh..it’s so hot outside.” “Oh my gosh, I know, I was just telling Jerry here that I soaked through my shirt yesterday and you could see everything!” But the heat of summer in New Orleans isn’t weather. It’s air that was once alive and now is dead. Stagnant with no mercy, demanding that you find the least amount of clothes to wear while maintaining some amount of dignity, which has always been hard to do, but comes naturally to true Southern Belles. Especially the elderly ones with the delicate hankies for their brow. The ones with the good stories, who have almost literally seen it all. Their growling, thin-lipped faces, hardly tainted by the heat, probably look at people like me and mine in our cropped, spaghetti-strap tank tops and cut off jean shorts and think “What a shame. The decay of the Southern Woman.”

While it’s true my mom and grandmother actually did walk to school in the snow, Southern women lived when donning multiple layers of clothing was basically required, even in Summer. And if that weren’t enough, they persevered without air conditioning. How? Why? How? This makes me feel like even more of a pansy than I already consider myself, which is pretty high up there on the pansy scale. I call the air stagnant now, but how can when I have the ice-cold relief of entering an air-conditioned building or house, where I then actually get cold and require my handy feather-weight Gap cardigan! How did they do it? After three summers, why didn’t they head for Cali? They must’ve seen telegraphs about 75 degree weather year round! I imagine New Orleans on a beach and think it’d be by far the greatest city of the world, but of course, Louisiana could never ‘happen’ in California. We’re mossy and swampy but formal and demure, not palm tree’d and beachy and board shorted. And yet, we live on a coast. Which is disappearing! The excitement of it all!

It’s not just the stagnancy of air, but of people. Here in the dead pit of Summer, you see them in their cars at stop lights, tired eyes squinting because despite whatever direction they’re facing the sun always seems to be in their eyes, shining at them. Yelling if it could. If you took a photo of one of these persons, and I have been this person, it would be in black and white, evoking the feelings of depression-era photographs, and the caption at the bottom would have one word: “Why?” Condemned. That’s how they look. One degree from driving off the next bridge.

My house can’t cool off during the hours of 1 and 3. The AC just can’t keep up. Monty lies on the tile and pants the entire time, not even bothering for me to play with him because neither of our bodies could withstand the exertion while being smothered by a steam shower we never asked to take. You always forget how intense this heat is. “It’s just this humidity!” any tourist will tell you. And actually most locals will too. Despite the extended Louisiana summer unfolding somewhere near to this climate for at least the last hundred years, and it’s still boasted like humidity is new to the menu. Like El Nino is just making things crazy! And yes I know, we’ve had some actual El Nino and last year was the hottest year on record. But still, the difference between 92 and 96 degrees is slightly felt when you’re out under the sun. Even the Wal-Greens clerk reminds me, “Try to stay cool!” and I answer the same thing every time, feeling like I’m out of the fifties. I’ll do my best! Then I walk self-consciously to my car thinking how stupid a response that was.

Have we been commenting on the heat for the last 127 years? It’s possible. Nothing wrong with recurring conversation topics that survive the decades. I guess I’d rather not get into politics with the Walgreens clerk as I’m buying deodorant and Head and Shoulders. And why do I care anyway? This is just turning ironic because now I’ve written 1500 words on a subject I am questioning the very interest of and expecting somebody to read and find this interesting! Oh jeez. We’ve gone meta. Anyway.

I used to think Summer weather here was basically miserable, except that it provided an atmosphere appropriate for swimming, nearly required for swimming, which I have always loved. But I’ve come to appreciate it in new ways for a few possible reasons. One is probably because I’ve been feeling better, and when I think of the Winter, how I was sick and stuck indoors, cold with no recreation, I’m just glad it’s here– in all its steamy, hot-breathed glory. Whenever I return from a trip and step outside the airport, the first breath is almost the opposite of one. First you lose it, then you breath it back in, and this misty breath will always evoke home to me, and I feel grateful for the oxygenated relic. Maybe because I know or assume it will always be there- June through September at least- and it’s something you have to tough out. You don’t get to stay and party for free. Lot’s of people will come and go, speak about intolerable heat with good reason. And that makes me like it more. You know you have a clan of people who you’ll endure this heat with for four months, as though heat itself were some sort of natural disaster. And there’s a communal, club-like feeling to this. OK clearly I’m reaching. It’s not special, I know. For God’s sake, I’m talking about breathing air! I’ve just never encountered the immediate, difficult, distinctive Louisiana air anywhere else, or anything close to it. Louisiana has its own texture and smell and density, the tension of our past/present invigorates it as much as the coming summer storms. It’s all in there. I don’t have the answer for how. But Gary Zuckav says that the Universe is alive. He says there is an “earth consciousness that guides the cycle of life.” When I think of the ocean and all its functions and how it knows to operate certain ways, these words make perfect sense. At the airport breathing, (gasping) sensing something more than air, waiting for my ride, I hear his words with perfect clarity.

Health, Happiness, Heat
And this humidity!!

Brain Not Work So Good

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

Jellyfish-in-a-Trifle-WEB

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

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

sketch-spot-1-time-out-kids
Me Writing Crap

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

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

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

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

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

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

nyt-the-upshot-lisk-1050pxe589afe69cac-1
How fun is this dudes art? Check him out.

 

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

Let that simmer.

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

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

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

Now lets go blow stuff up.

Health, Happiness, Happy 6th of July

What Makes An Illness Invisible? I do I do!

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

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

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

Marc-Colaluce-DPM-300x240
I mean this is just a great picture

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

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

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

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

Health, Happiness, (In)Visible

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

Me Vs. Myself In My Own Campaign

I have to admit something that feels a little shameful, and since this blog seems to inspire little dignity in me and zero reverence I’ll go ahead and do it.

Lately I’ve felt a schism crack inside of me. I don’t know what it is, a Campaigner and a Skeptic. I’ve been advocating these last two months since I began the petition asking the NIH for an increase in funding for M.E. I can’t tell you how tired I am of just writing that sentence, and probably if you’ve kept up reading this, your eyes just glazed over. And then I feel bad about feeling exhausted by it. I believe deeply in the campaign and I want more than anything for it to do what it set out to, which is actually to change things in a quantifiable way. This whole thing has been fronted by social media, so I’ve spent hours posting it on every forum, every ME/CFS Facebook page, (of which it turns out there are like 4,000), tweeting to the same groups and other organizations I’d only just discovered,  and any and everyone involved in the CFS community, including celebrities who I’d read had the disease. This includes Sinead O’Connor and Olympic Soccer Athlete Michele Akers, but I didn’t hear back from either. I thought about singing a version of “Nothing Compares” to Sinead but rewriting it with lyrics that explained the issue and pleaded for higher funding. But I never did it. I head Glen Beck has ME, but I’m just not going there. I just…I can’t.

I did actually write a song, a two chord song on the guitar, so far titled “Chronic Fatigue Syndrome” but we’ll get to that later. Similarly I’ve been sending emails to both friends and strangers, asking them to do something. But doing this day after day can start to feel..a little desperate. Sometimes I didn’t like myself. It feels like I’m asking all these people to do something for me, people I don’t even know. But I’ve had to constantly remind myself, when I start to feel like some kind of annoying car salesmen with poor boundaries, this isn’t really for me, but for something so much greater. It always has been. One look at the comments page of the petition and it’s so clear that we need help, and we’ve needed it for a long time. So if I’m gonna go for it, I need to go for it. STOP BEING A PANSY, in other words.

pansy
Pansies are quite beautiful it’s a shame they’re synonymous with WIMP

Despite many people and organizations reading my story for the first time, I find myself rolling my eyes at my own account. And I think God, what’s wrong with me? Where’s my pride for this fight? I have to remind myself that this has been a 30 year injustice that started before me, and I am just trying to help fix it. And then I find myself even struggling with that word. Is this really an injustice? And I realize when I ask that, it’s coming from a failure of perspective. The insecurity considering my own experience with this illness, and my sense of normal, which is inside out and backwards. Even though being sick has been the hardest battle of my life, I still look around at things and think “But I’m OK.” Sick or not, I can find ways to make it all work. I have so many people and so much love behind me that I know I’ll be OK. But there are 2 obvious flaws in that thinking. To begin with, when I really break it down, I think

Mary, you’re living in your parents pool house. You aren’t able to work anymore. Sometimes weeks go by without leaving the house or seeing anyone even close to your age. You live in a town you have no connection to except for the pharmacy and three doctors. You hang out with your parents A LOT. Last week your own mother washed your hair for you in the bath because you were too weak to do it. And showers, let’s not even talk about showers. The point isn’t that my life not being normal is the problem, it’s that I’ve become so accustomed to what the illness has done with my version of normal. I forget, this is actually kind of a huge mess that I’m just living out as best I can, one day at a time. I don’t plan things, I can’t keep them. Somewhere, I sense a clock is ticking. It can’t last this way for long, right? And if it does, would I be OK with a life like that?

So is this an injustice? Yes. Read everything that’s happened with this illness pertaining to the CDC, HHS, and the NIH over the last thirty years, and it would be hard to call it anything else. Just because I’m surviving and ‘OK’ doesn’t say anything about the millions who aren’t.

And that brings up the second flaw in my perspective: I am not nearly as sick as so many others who have this disease. There is a scale to the illness in terms of intensity. A portion can function partially, but it’s hard to call those who are at the other end of the scale “sick.” Their bodies are shutting down. Confined to one room, unable to talk or tolerate sound, eating through a tube. Would we call that living? So many people have been sick for decades, their husbands or wives gone because life with this disease hugely impacts relationships. Some can’t understand it or even really believe it. One woman told me her husband divorced her because, he said, “I can’t watch you slowly die anymore.” People, especially husbands, hate feeling like there’s nothing to do for it, no way to help. And at this point, that’s basically where we are. You’re lucky to find a doctor who knows much about it. All of this reminds me; sure, you can make lemonade out of lemons, but there is a far deeper issue at play here, and it’s been slowly building into what is now a health crisis. It’s like the equivalent of the Velvet Revolution- a calm, quiet crisis. It’s gone on gently behind the scenes, behind the noise of other major news, of more important health issues, diseases with names that don’t make a person stop and hesitate whether it’s “real” or not. So I have to remind myself, this is beyond lemonade, and this fight reaches for things far beyond me. This is for the thousands of people who are far and away worse than me, who can’t fight for the change that has long been needed. “Sick” is such an understated way to describe them. “Slowly dying” is more accurate, just like the woman said.

So, I need to stop feeling apologetic for fighting for this change. Yeah, it’s probably annoying on Facebook News Feeds, but I’ve seen my share of weird engagement albums of couples in urban settings, and political rants and pictures of peoples lives that are awesome that make me feel incredibly small and boring. So, I guess it’s OK to annoy with a petition for a while. It doesn’t mean I have to become a full-time advocate, but I need to see this thing through to the end, and getting petition signatures is really only phase 1. I need to participate (at least virtually) in the protests this week, because it matters to me, and I don’t know why I feel like I should keep it a secret that it does. The real work might just be beginning–getting the big dogs on the phone, and in person, and making the case. I will say, I feel more far more confident reaching out to these people with 33,000 signatures behind the request. Printed out, that’s over 1,500 hundred pages of names. That’s impact! And that’s what I was looking for. So Thank You, all of you. A petition doesn’t work unless the people sign. The next phase will be interesting and could take a while. But, as always, I will keep you posted.

I see big change up ahead. Monty too.

Health, Happiness, Justice

“Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we’ve been waiting for. We are the change that we seek.”            -The man, Barack

Breaking News

(Not Really)

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

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

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

Anchorman_140Pyxurz
(Not Rob Masson)

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

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

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

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

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

Health, Happiness, HEY MOM IM ON THE NEWS!

The Campaign

OK, so I can’t actually link the above image that says CLICK HERE TO SIGN to the page where you would actually CLICK SOMEWHERE TO SIGN. Blogging problems amiright? In other news, you can click here to sign.

If you haven’t heard, I’ve begun a campaign on change.org. I’m petitioning the head of the National Institute of Health (Francis Collins) and the Secretary of Health and Human Services (Sylvia Burwell). If you have heard, and you probably have because I posted it everywhere for a while there, I do apologize for the redundancy. But for the first time, it seems like the right people are at the helm of the organizations that can immensely influence the potential for way more research (funds) for ME/CFS. I’ve written previously about the shaky if not scandalous history of this weird disease and the mishandling of it (i.e. neglect) on a federal level. As a result of being dismissed and grossly underfunded for so long, treatment-wise we are exactly where we were back in 1987. That was the year my mom got sick, when the disease was hardly even heard of. But it’s a new age, and there are a lot of people fighting out there, and this is just one more way of attempting to be heard, influence important change, and help increase awareness. Plus Monty pressured me to do it.

I’ve never thought of myself as an activist, and I still don’t really, but for the first time I’m feeling the strange pressure to make something happen. Anything. I wrote the campaign on a day when I was feeling really sick but also really hopeless and discouraged. I thought, I can’t sit here and feel bad about this anymore. I had to try. It’s interesting because on one hand, I can’t rely solely on the discovery of a cure to make me happy or my life complete. I forget that even healthy people have a hard time. Life, as discussed and agreed upon with most friends and family, is just really effing hard. It just is. Even if by all accounts you have everything one would require to be “happy” or feel whole. It’s so easy to just assume that everyone else has all their shit together–that they’re drinking champagne on a yacht somewhere with good looking friends and laughing, or having family day in the park with their soul mate and three perfect children. Is that a thing? I don’t know.

32336913-vacation-travel-sea-friendship-and-people-concept-smiling-friends-sitting-on-yacht-deck-Stock-Photo
“Isn’t life easy?” “Oh my God I was just thinking how easy life is!!”

But I’m guilty of this. Many times when I’ve felt deeply the challenges of my experience, I’ve felt even more wounded by the idea that the rest of the world is at a party that I’m too sick to attend. And that is fantasy. Sure, there are definitely people out there who have it way more together than me and are probably experiencing more joy than I am in the current era I’m going through. Even so, health, marriage, children, careers–these don’t necessarily equal happiness or fulfillment. Everyone is carving out their own unique path through this chaos, discovering who they are and hoping to live a good life they can be proud of in the process. I’m not positive, but I think “happiness”, or maybe I should call it “inner peace” or contentedness, develops when you are operating out of your true self, that inner person that we catch glimpses of when creating or carrying out our passion or holding the hand of someone we love. It can be anything, but I think there is person within all of us, a 100% unique super-person made of ultimate consciousness that we’re all striving to become. And when we follow the whispers of that super-person, it feels right. It feels stable among a lot of instability.

As I grow older, I think the biggest revelation I’ve come across is that everyone is figuring this thing out as they go. They’re putting on their pants in the morning and going to their job or raising their children or poaching an egg and some part of them has their fingers crossed that they’re doing it right. That they’re doing what they’re meant to. And somehow it can easily seem as though everyone else knows absolutely what they’re doing, where they’re going, and how they’re getting there. But even these people can’t be completely certain. There’s no real way to know, no standard form of measurement that says yep! you’re doing it right! We’re all living this particular round of life as each of our weird selves for the first and time. All we can do is our best, and follow that invisible thing that usually presents in the gut, telling us to turn left or right or that you’re talking to a crazy person or to get the hell out of some place. There’s an inner compass there, and we probably don’t listen to it enough.

My “path” the last five years, which continues now, has been finding a balance; finding a way to manage and tend to this illness and still construct a life that I like; one where I can sustain loving relationships and do some good and make a meaningful life I can be proud of. The balance is also about not letting my life or identity revolve around the illness. This is hard because truthfully, it effects everything. It just does, it should be called Pain-In-the-Ass Syndrome because that’s what it is and you kind of become one out of necessity.  But I know there is a way to use it to become someone better without letting it define me or my life. I know in order to grow and become the most conscious, full version of myself means experiencing every last drop of what is thrown in my path, including the insanely hard stuff, like life-altering illness. My mom reminds me of this when I get really down. Try to take everything you can from this, because these are the unique teachers that help shape who we ultimately become. And it matters that we grow into ourselves, that we become who we’re meant to. Otherwise we’d all be born with the same talents and passions and personalities. We are so awesomely diverse just to begin with, innately, and our experiences through life are even more unique, and this is what informs our distinctive selves for the better, if we engage it whole-heartedly as an opportunity to grow into who we’re meant to be. I don’t write that as though it were something easy. It’s one of the hardest things in life: to accept pain and struggle with open arms and surrender to it as a pathway to being better, more conscious, to living a more fulfilling life. Maybe that’s how to know if you’ve done it right..if you ring out the rag of your life at the end and not a drop comes out.

This post was meant to simply re-post the campaign, but it’s been a tough few weeks mentally and physically. What am I saying? It’s been a tough year. And there’s always words that need letting out. Otherwise cobwebs gather up there. Anyway, last week there was such an amazing response from family and friends, (and total strangers), to signing and sharing the petition, and that was truly humbling. I cried. Like a lot. I don’t know if this will work. I don’t know if it will get enough signatures to get the attention of important people. I just know I felt an ache on a particularly hard day that craved a bigger change and I had felt it for a while. So this was a place to start. I also wanted to remind people suffering out there that there is a lot of action being taken toward working with these agencies and finally getting the support and attention that the disease has needed for so long. Don’t lose hope. We WILL get there. Wherever there is. The good news? We surpassed 1,000 signatures! What does that mean? Technically nothing, except that 1000 people took the time to sign it and comment and share, and that is an awesome feat in itself, and I hope we can keep it going. I will post the campaign again here, and maybe find a better spot somewhere on the homepage where people can sign. I’ll figure something out. In the meantime, let’s all put on our pants, (or PJ’s if you’re sick) and pretend we know what we’re doing. In other words, let’s try. I have to remember to try. And you do too.

And then sign the campaign.  Pants not required.

Thank you, thank you, thank you so much to everyone who has signed and donated to help circulate this campaign. I think my sister is responsible for half the signatures herself that she reached out for. She’s a better campaigner than me, maybe I should hand it over. Thanks Amelie! And thank you to all of you. It truly means so so much, every single signature.  I will of course keep everyone updated. Mostly, I’m filled with humility and gratitude for all the support my family and I have received. Keep it going guys, I can’t tell you how thankful I am, except I just did and I’ve said it 10 times now so I’ll stop. But it’s really nice for people to feel that their voices have been heard, especially sick people who can’t get out there and fight, and I think this campaign is a way to facilitate that. OK ENOUGH TALKING GOD. Here it is. Sign it for Pete’s sake!

Health, Happiness, Pants

Below is the link if you’d like to copy and paste the campaign to send in an email. Otherwise, just click here and sign it. Thank you. I love you. A lot.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure?recruiter=12447733&utm_source=share_petition&utm_medium=copylink

 

 

 

 

You Know What To Do

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

Friends, Families, Duders,

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

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

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

Unknown-2.jpeg
Let’s Run and Raise Some Money People!
But then in a matter of, oh I don’t know, 5 minutes..the scene would inevitably change.

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

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

Petitioning Director of NIH Francis Collins and 1 other

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

All I want to do is take a bath.

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

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

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

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

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

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

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

Thank you.

Mary C Gelpi (and Monty)

#WeCanDoBetter

Click Here to Sign

 

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

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

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

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

Health, Happiness, CHANGE