Politics – FibroM.E.-Awesome

The Catch-Up

Published on July 11, 2018July 11, 2018 by Mary Gelpi2 Comments

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.

unnamed-5 — 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.

Cheers To a Slowly Dying Christmas Tree and the Start of Something New

Published on January 23, 2017January 23, 2017 by Mary Gelpi8 Comments

My Christmas tree is still up. We might start there..

Two Fun Facts. Even when your Christmas tree begins to shrivel and sadly die in the corner of your living room:
1. The decorative lights still emit that magical glow when turned on at night and you’d never know their was death lurking behind them.
2. It still smells like Christmas! Even while dying, that one of a kind sap-infused, woodsy, cinnamon smell still infuses the room from the corner where the tree sits, but looks more like it’s floating.

I still catch random whiffs of Christmas when walking by or while reading on the couch. It’s like the original air-freshener, and since the scent is so sporadic and only comes around once a year, like Girl Scout cookies, encountering it feels uniquely special. Like glimpsing a shooting star or seeing a bald eagle. Sometime its feels like a nice gift the tree is sending my way. I think, Hey thanks tree, you have a good day too! What I’m saying is, you begin to talk to things that are not human when you live alone, and that’s OK. It’s bound to happen. I think. I’ll ask Monty.

I tried deciding whether a Christmas tree still hanging around on January 22nd that also happens to be dying is depressing conceptually or not. I say conceptually because I can say from an actual standpoint, it most definitely is not. It still brings all the joy it did from day one. I am a Christmas enthusiast and my fervor has always extended to the art of holiday decor and the unmistakable enchantment of a Real Live Christmas Tree. Everything about them makes me happy. Until I start seeing them on the corner of peoples driveways laying on their side next to the trash can– what a tragically depressing image to encounter. Or it always was for me, growing up. I feel that keeping the tree around this long and seeing it to its final days, I’m squeezing every ounce of wander out of what Christmas trees have to offer. It’s like The Giving Tree! Except in this case at the end, we burn it in a large pile of leaves and miscellaneous dead foliage and branches out in the prairie. But I find this to be a far less sad ending to the tree than awaiting its demise on a driveway and being tossed in a trash truck full of rotting food and discarded junk. I wonder if it freshens up the smell of the garbage truck? Probably not. Anyway burning the tree returns it to where it came, and whether that works out scientifically or not, for me it feels like a much kinder fate. And symbolically more appropriate.

As for outsiders, seeing a dying Christmas tree still lit up in my living room might look like a lapse in civility or domestication on my part– some kind of improper etiquette. Like having dishes in the sink or a mess of a house when company shows up. It’s always a little shameful when people visit, especially unexpectedly, and your place isnt tidy. Somehow it feels like a reflection of you– whether clean or dirty, we’ve come to see dishes in the sink as a little pitiful and a perfectly sanitary house as the height of a life in order! But order doesn’t imply anything moral or productive. Then again, a really dirty house does start to make you wonder about the direction someones life is going. If you haven’t done laundry to dishes in over three months, it might be time to talk to someone. It’s funny how having a clean house gives us a sense of pride and sends the message of “I’ve got my shit together and things are great!” Somewhere deep down, don’t we all secretly wish our homes smelled faintly of Pier One Imports? THAT is a fresh, successful smell if there ever were one. Unfortunately you can’t detect what your own house smells like, you can’t discern your own smell, so you kindof just have to keep up with the cleaning, pray that your pheromones mix well with your dish soap and the wood of your cabinetry and whatever else is informing the air of your house, and hope for the best. Many houses I can think of from growing up have distinct smells to them, that are still there when I visit today. It always elicits memories of certain times way back when. Funny how just a smell can be so tightly tied to a person or experience. I can still remember the exact smell of my grandma baking homemade bread. It takes me right back to childhood, to punching down the raised dough in those huge seventies-colored bowls, and to that first piece warm out of the oven. Son of a nutcracker I am hungry now.

Anyway, I imagine somewhere in a book of manners and proper social behavior, there is a responsible cutoff date for the Christmas tree, and if yours is up past that date, forget it. You might as well quit your job and stop tying. For me I don’t have a real job so there’s a personal loophole–if in fact, Jan. 23rd is past the cutoff date for tossing out the tree. Anything after that is an obvious decay of domestication. Or maybe just poor manners. Maybe I’m still in the clear because it’s still within 30 days of Christmas, and if I can still technically return a gift to Target, then I should be squared away with the tree. Either way, none of this actually matters and obviously you should keep your tree up as long as it makes you happy and does not accrue mold. Isn’t that how we justify killing them for the purpose of holiday decoration in the first place? By enjoying and appreciating their beauty and assorted pleasures for as long as possible, we sort of redeem cutting them down. Sort of. I don’t know, what is the environmentalist take on real Christmas trees? Is real or fake the greener choice? Probably fake, right? Let me check.

Well that was a hellstorm. I’ll save you some googling time and just say the conclusion to ten articles on this very subject is that the science is still out on conclusively naming one or the other as better (or worse) environmentally. Worth noting is that artificial trees are created using this special ingredient calling PVC (polyvinyl chloride) which is not recyclable nor completely biodegradable. Also vinyl-chloride is listed as a human carcinogen. You have to use the artificial tree anywhere from 7-20 years (there are multiple conflicting studies) in order to make it less harmful to the environment than using a real Christmas tree. Also at least 90% of real Christmas trees are farmed, which keeps the natural population healthily sustained. Hmm, one can emit hazardous fumes in too high a dose, and one provides magical Christmas dust that enlivens the senses and makes miracles. So I am biased clearly, but I still say down with artificial arbor. Go real. Go green. And inhale that magical smell until March if you want to.

Its funny, but even though Christmas is well over, I’m still recovering from the festivities I partook in. Some of it is my fault; I have a hard time doing what’s best for myself in terms of the illness, and doing what is fun and adventurous and happy in the moment. This disease is so insidious, it doesn’t let you know how much you’ll have to pay until you’ve already done the damage. Its like going swimming today, but not having to hold your breath until tomorrow. Say you swim in the ocean and get distracted by the tropical fish. You go under water following them around, and all the while you think “I haven’t been under that long, I’ll definitely be able to hold my breath this long tomorrow when the time comes.” You think that because you’re stupid and you didn’t learn your lesson from last time. The next day comes and you have to hold your breath for all the times you went under water, but on some of your sub-surface excursions, you were distracted by awesome sea life and stayed under like 3 minutes. Now you’re trying to hold your breath for three minute stints and you’re blue in the face and passing out and thinking, why did I go under the water. Why Mary WHY. So, that’s one way to explain it. Anyway, Christmas is happiness and this year it was a great one. Sometimes the dive is worth turning blue.

I’m not sure what it is exactly, but I’ve had the feeling for a while now that 2017 is going to be a very special year. I can’t say how specifically, but I sense that big changes are in store. Important changes. Great changes. And that the start of something new and big has already begun its course. It’s only an intuition so what do I know. Maybe anything compared to the dismal 2016 will seem auspicious by default. But something tells me it will be more than that.

I never saw myself in the world of advocacy or politics, but tomorrow is the first day of a very important journey that I suppose will include both. It’s the first time I will meet with a politician to talk about me/cfs and address the funding issue, in person. I’m meeting with the Louisiana state director, Brian McNabb, who works in the office of Senator Bill Cassidy. I have no idea how the meeting will go. Of course, I have my talking points prepared and there is only so much my brain can store. My main is goal is to tell the truth and leave a lasting impact. In my imagination the scenario goes like this:

We start with some charming banter yada yada yada, he pours two glasses of whiskey, and as the ice clinks in our glasses I say “Look McNabb, we need $100 million from the NIH for this disease. Minimum. And we need it yesterday.” He thinks a moment, sips his drink and says “You know, after reading the riveting history of this disease, the outright neglect, and the heartbreaking stories of so many who’ve been devastated by it, I’d like to offer $200 million toward biomedical research. It’s actually the more appropriate and fair amount.” I walk over, raise my glass to toast to this proposal and say “Wonderful Brian. You’re doing a really incredible thing.” Clink!

“How soon will the funding come through to the NIH?” He thinks a moment, “I’ll have to get a few documents in order, but I’d say by tomorrow around 4. Does that sound alright?” I begin to put on my jacket to leave. “Sounds fine.” He opens the door, “I’ll let Mr. Collins know about the funding change. Anything else?” Walking out I hesitate, stop, then turn around. “Actually, I have these parking tickets in New Orleans I never paid-” “Ms. Gelpi! Don’t be ridiculous! I’m not a genie I can’t just say ‘poof!’ and fix everything!” I blush from assuming something so stupid. “You’re right, I’m sorry. It was foolish to ask. Forgive me.” I turn my head away a little embarrassed. He nods affirmatively and ushers me out. Before he closes the door I yell inside just to be sure “But we’re still on, $200 mil to the NIH tomorrow by 4? Right?” He already has a phone to his ear and looks distracted by some new matter. “Right. 200 mil. 4 o clock. G’bye now.” The door shuts and I turn to walk out, grabbing a handful of Worthers Original candies from the crystal bowl on the secretaries desk. She doesn’t mind. Outside it’s chilly as I walk to my car and my legs are already aching, but I don’t mind, it’s too happy an occasion. I arrive at my car and immediately notice a boot on the front tire because my meter expired while I was inside. There’s also a notice that says I have dozens of unpaid parking tickets and my car has been seized. I turn around and march back toward the tall marbly building. I dial my mom, walking up the steps. “Well?” she answers with anticipation. “Mom! I’ve got good and bad news, which would you like to hear first?”

The End

That sounds like a reasonable scenario, right? I’ve heard that’s how Washington works so, I’ll keep you posted. :)

Health, happiness, GREEN.

Brain Not Work So Good

Published on July 6, 2016July 8, 2016 by Mary Gelpi5 Comments

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.

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

Me Vs. Myself In My Own Campaign

Published on May 26, 2016May 26, 2016 by Mary Gelpi5 Comments

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