The Catch-Up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Health, Happiness, and Catching Up

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

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The Reward and the Wake of ME/CFS Advocacy

Two weeks ago, my family came together for an advocacy event coordinated by incredible friends and family in our old hometown, Grand Junction Colorado. The function was a success and took a lot of hard work by people who cared and put in major time and heart behind the scenes. My sisters friends Avery and Jordana, Jordana’s dad Harry (awesome dad name) and my Uncle Mike who was under the impression that months earlier he’d retired (Nope!) Besides them many more came together, helped fund, offered services, and sponsored the event in order to make it happen. As for me, I sort of just had to show up.

Beyond friends and family that put in the effort to sort out logistics doing an incredible job, the article in our local paper impressed me majorly–not just with it’s advertising of the event, but by publishing a full page color spread, covering our families stories respectively and including a digestible narrative about the reality of MECFS and giving it a wider context. I felt happy and surprised to read this article right out of my humble hometown, when such a surprising amount of press from noteworthy and “big league” media can completely miss the mark.

The dense, nearly unbelievable history mixed with present political roadblocks and numerous scandals all under the M.E. umbrella make the disease particularly hard to write about and convey in one article without writing a novel. Not to mention the personal, human interest side of this, and the toll it takes on patients and families. Very few articles contain both, and many more are simply clumsy, neglecting essential facts or even accurate data. Due to our general lacking presence in the media, I know someone might think “Well any press is good press, right?” But I struggle with that adage. When you’re fighting a thirty year old false narrative, not all press is good. In fact it can easily be bad by perpetuating fallacies, inaccuracies or misconstrued data, and even celebrate studies (like the PACE Trial) or treatments which have done the MECFS community incalculable harm.

So I guess, no, not all of it’s good. Too often I’m excited to see press about MECFS only to be disappointed beginning just the title, which will call the disease “chronic fatigue” or in the first line, inaccurately label the number one symptom as tiredness. *facepalm* But I digress, I didn’t mean for this to get into the media missing the mark, or the missing media in general, because today is about advocacy. And when people with this disease, their caregivers and loved ones, researchers and doctors are out there fighting for it, none of them will get it wrong. All of them know the numbers, the history, the truth, and the unfortunate personal toll.

The event in Colorado was a success. And maybe I’m a romantic and would call it that if even 3 people showed up, because that’d be 3 more people who were aware of something that is so rarely seen, heard, talked about, or understood. But many more showed up, family and friends we hadn’t seen in decades, strangers too, all to learn about a disease on a Sunday night, when it would be so so so easy to stay home and just forget it. It’s hard to express the humility and gratitude you feel seeing people show up, tell you they’re thinking or praying for you or your family, or even a stranger offering his hope and encouragement for the future. It all meant a lot, really. So THANK YOU again and again.

After the screening of Unrest, the 3 of us (my mom sister and I) spoke and were followed by Linda Tenanbaum, the CEO of the Open Medicine Foundation and human firecracker, who infused hope back into the audience, who were probably mostly thinking Dang, this is a shitty situation. Shituation?  She closed out the night before it was on to the reception. The firecracker (Linda) is an amazing speaker and doer, and having her attend the event only amped it up. Getting filled in on the OMF’s work and most up to date findings was a truly optimistic breath of fresh air.

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The OMF is at the forefront of research and work purely off donations, as in every cent goes into the science. All participants–brilliant researchers, doctors, scientists and logistical coordinators work on their own dime. Why? Some of them have a child or loved one with this disease, others just a determination to find answers to something with so few. Due to the explicit lack of urgency in the government when it came to MECFS interest, when submitted applications for funding biomedical research were repeatedly turned down by the NIH, these guys got together and decided it was time to do the work themselves. And thanks to the generous donations of so many people, they’ve been able to achieve and find incredible things. There is still a lot to do and this kind of science will require a lot of GREEN. But hey, maybe the #MillionsMissing protestors out there today in the streets will help change studying a disease with public charity to adequate funding provided by the Agency whose job it is to fund.

When we attended another event much like this one in California in October, it took me roughly 30 days to recover. I know because I videotaped myself everyday for a month to track how each day went after we returned. It’s a long trip and these events, while incredible and worthwhile, take a toll. The socializing alone is just like physical exertion, and the event in GJ lasted roughly 6 hours. While I’ve recently undergone an upswing in my health, I watched my mom that night—speaking and catching up with many old friends. Sitting as much as possible, not having even one glass of wine or “playing with fire” by any stretch of the imagination. She played it safe and did what she could to pace herself. You’d never guess anything might be wrong by looking at a photo from that night.

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Yours truly, My Sister Amelie, Linda Tenanbaum, Mama Gelpi, and my Aunt Amy. You probably know her.

Yet at 6 AM the next morning, I woke up on the couch just in time to see her collapsing, my stepdad with his arms outstretched underneath hers, catching her as she slowly went down, muscles twitching and trying not to pass out. She’d woken with a crushing migraine and often if she doesn’t take her medicine in time, some epic vomiting is soon to follow. She’d taken the meds but sometimes the migraine wins and all you can do is endure it until it’s had its way with you. She’d run to the first bathroom feeling her mouth start to water and knowing what was to follow, but my brother had just moments earlier gone in to shower before his early fight home. (Way to go NICK)

So she was on a quick race to the bathroom on the other side of the house, but midway through started to black out, and was luckily caught by my stepdad from behind while her muscles seem to go limp and the room blurred in and out. I can’t remember what was said but I knew she was going to spew quickly and ran as fast as I could for a bowl. I made it back just in time, with a casserole dish, which isn’t the best of bowls to puke in if we’re getting technical, but hey, better than the carpet.

After a nice little vomit session on the floor, we both pulled her up to the chair where we put ice on her neck and wrapped her feet in heat packs to try to get the blood to flow downward. She sat with her eyes closed, as though she were concentrating hard on something. But when you’ve experienced that kind of pain, you know just what it looks like, and that was it. She waited and Marc sat nearby for anything she might need. After an hour she was finally able to walk back to the bed and eventually get back to sleep. So, that was her morning.

And from what? From doing what healthy people do all the time. Watching a movie, catching up with friends, eating, hanging out. This is what put her over her envelope. Watching her I just kept thinking about the invisibility of it all. That no one would guess the woman they were with last night was in the extremely painful and scary position she was in now. But this is the story MECFS and those who suffer with it live it all the time. You see us when we’re well enough to be seen. Otherwise most of the suffering goes on behind closed doors, and no one presumes otherwise.

Today is #MECFS Awareness Day, and thousands of people around the world are taking part in the #MillionsMissing protest thanks to MEAction and many more. I wish I were one of them but I just couldn’t make it happen. So I made my sign with shoes attached on behalf of the three of us in the family to represent. It was only a tweet, but it was the best I could do.

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I hope anyone reading this who participated in the #MillionsMissing event knows the immense gratitude and unity from millions of us who couldn’t physically be there. This kind of advocacy isn’t easy, particularly on those who have the disease. They will all pay for it in terms of their health in big and small ways. And yet it’s what must be done in order to make the invisible seen, give the silenced a voice, and the truth a solid platform on which to land. My gratitude runs so deep to all those who organized to make THIS happen, and you know as well as I do, it doesn’t end here. We’ll fight even if we’re left beat up until things change the way they’ve needed to for decades. Hang tough, all of you. The Gelpi’s are with you in spirit. Thank you for your bravery, for caring, and for risking your own health so that we might all have a chance at actual health in the future. Thank you, in every language ;)

Health, Happiness, In Solidarity–Happy May 12th