Hangers On a Ledge 

I run these ideas through my head, trying to piece it together. I try to make sense of a history that began before me and most likely, I’ll never really be able to figure out. Whenever you’re trying to find where things went wrong and how you can make them right again, it can all feel too big, too long ago to find solutions that make sense now. But still, the red part inside of me that stirs as though it has a body that can do anything, tells me this is something we can fix. We can do better–those words, they play over and over.

I travel back in time, the early 80‘s I guess. That’s when it started showing up in different places and on unexpected people, and the powers at large weren’t able to connect the dots. It’s understandable of course–the thing is literally invisible. Maybe the lack of pressure, lack of genuine concern about the disease began there–at a moment in time where it couldn’t be ‘seen’ under microscopes and wasn’t ‘believed’ often by the people who were suddenly sick and then never better. Maybe it was that the thing wasn’t killing anybody. Nothing fatal. Just a flu. “A yuppie flu” they called it. Not only are the sufferers alive, but they don’t even look the part! They aren’t sick on the outside. And rearranging my position in all this, putting myself on the outside looking in at this “movement” of unexplained sick people, I understand how this notion worked against us–how it continues to today. I think of the old adage “What doesn’t kill you makes you stronger.” That may be true in many cases, but I can’t say it applies aptly here. Not in regards to our bodies anyway, which upon the slightest push can fall and not again get up.

What isn’t killing me is not making my body stronger. I am the least strong I’ve ever been. The medicine has caused weight gain that at times has me and my face looking like a bloated pumpkin. It’s hard not to feel at battle with the thing that is intrinsically connected to me, and between us exists a fine line of fighting it and not fighting it at the same time. The whole thing is an honors class in balance. Some days are better than others, and I wonder, am I stronger, or am I just less sick today? There remains a difference. But I’m probably focusing on the wrong area here. No doubt that in our minds, the adage applies. When every day is a battle, beginning with waking up, with sitting up in bed and planting your feet on the ground and taking those first few painful steps to the bathroom, and doing this day after day after day, for some of us years and decades, well then no doubt your mind will grow stronger. It can also grow cynical, it can become   bitter–but many times you’ll surprise yourself with the strength you find and the moments you find it in. If you can keep trying, if you can manage a smile and a laugh, to be happy for other people, to still believe in something good, then certainly you haven’t been killed, and the battle has made you stronger. But that is our mind. Or the soul maybe– An almost contradiction that is both a connected but separate faculty from the body. Refer to the ancient philosphers and you’ll find some disagreement on the subject. I think in either case, for the mind the body is only temporary. And this brings a relief to me. Whatever happens to me physically, I won’t be carrying it forever.

I think of all the others, sick like me, dreaming and hoping and feeling desires like the rest. It’s strange how our indignant heads are alive and full, swirling with ideas and goals just as though we had a body that could serve them all–make them all come to light. But at present time we don’t. So call us “alive” and say we “look well,” but know there is only a very small surface of which most the world sees. And the majority of life with this illness falls far below it, in a darkness underneath that very few see. Some can’t see it. Some don’t want to. Others just haven’t had the access.

It’s funny thinking about that word “alive.” Sure, we’re alive. But there’s an important difference between living and surviving. “Just getting by” physically, is hard to equate with living. And worlds away from thriving, which might be called a pretty commonly desired endgame. We, however, are hanging on by a thread, and it’s hard to call an existence like that “life” with any real conviction. It’s similar to hanging at the edge of a cliff and grasping it by one hand– would we really call that hiking?

That is the point where many ME/CFS patients are: hanging on with a half-steady grip, still breathing, still a beating heart inside, but stuck; Left with few options but, you know, to go on hanging there. It’s hard to have a social life or work a job or vacuum your living room when all of your mighty, tiny strength is being poured into hanging on to this cliff. It’s no wonder why so many people have it let go. There is just not enough hands at the top, not enough people offering help to pull you up, and no safety net at the bottom. And similarly, just as pulling a dangling body up off the edge of a cliff is a difficult but achievable task, a “problem” with more than one possible solution, curing the disease that has millions of people hanging by their own one or two threads is equally obtainable. It’s just to a larger degree. But it’s far from Impossible. And it would involve a few similar tactics: some people at the top, those say, for whom walking and standing is not a great feat, and who themselves are not also hanging off the edge of a cliff, combining their efforts and resources and intelligence and getting to work; finding a solution, in this case a cure.

Never having the experience of rescuing a person dangling off the side of a high-up something or other, I imagine that a rescue is within the realm of human capability. There are many ways to go about it, and maybe I’m being sort of dense here, but I’d venture it basically comes down to people lowering themselves to the ground, extending their arms to the dangling human, and with a great amount of strength pulling the person up until he’s back on his feet. And while maybe the tactic is basic, the act itself requires a solid effort. Lifting a person from this particular state is like trying to maneuver deadweight– Much easier to carry a body which is alive even if incapacitated, than one that’s dead and stiff. I’d like to emphasize that I’ve never hauled a dead body around but I’ve tended to my share of drunk friends who had 6 too many, and it would take 3 of us just to get the person, alive with a LOT to say about the world and true friendship, into a car. The very obvious point is, saving the person who’s still hanging there off the edge while I write this, is a very doable thing. And I know I’m comparing apples to oranges, or apples to bowling balls, but I believe with every part of me that this issue of solving or at least better managing this disease has never been on account of inability. This is something we can do, we’ve simply chosen not to based on some very obtuse, very lacking scattered pieces of information that cannot be labeled as facts.

Me, I can’t rescue the hangers on the ledge. Of course I can’t, I am one. But therein lies the kind of rescue I can provide. I can hang off the ledge next to you. Because there is something undeniably comforting in knowing that whatever struggle you find yourself facing, that you’re not in it alone, and that others are in the same boat. Or off the same ledge as it were. Like I mentioned, you can’t do a lot while devoting all your energy into grasping your spot on the mountain and not letting go. I can’t march in front of congress demanding to be seen, nor can I carry out the hundreds of other ideas I have that I think could make a difference, could help change the state of things in a positive and progressive way. But I can do a little. And thanks to modern times, maybe my little could turn into a lot. As I write this, I am laying down in a dim room in my moms bed. I have a frozen ice pack on my forehead and around my neck, with a hot pack at my feet under the covers to help draw away the blood from my head, which is throbbing like always. And yet I am still able to write, thank you very much Steve Jobs, on this rectangular dense brick otherwise known as my phone. It’s often hard to sit up comfortably with the computer in my lap and so being able to jot everything down from just a small device is kind of a miracle. Very often, while either FaceTiming with my niece or buying dog food from my phone that will be at my door tomorrow, I this is it-we’ve arrived at the future. And yet, I don’t even know how a calculator works.

The point is, healthy or functioning or bedridden or whatever, there are little things we can all do, in our own way, that can help change things. And yes I hear how corny that phrase played out. Recently I watched an interview with an author and Benedictine Nun named Sister Joan D. Chittister. She was really inspiring to watch. An author of over fifty books, she writes about about many topics including spirituality, women in the church, and social justice. She is clearly leaving an amazing footprint on the world through her written and continued community work and is firing up others to do the same. She said she is often asked by people “What can I do to help change things.. To fulfill humanity or to better the world?” Her answer is very stripped down. “Something.” And her brilliance was immediately illuminated in her acknowledgment that speaking up for a friend is as big as a March on Washington. “Just do something. Wherever you are with whatever you’ve got. When you see an injustice or see something that needs changing, do something. It doesn’t matter how small, just do something.” Of course this answer resonated with me. I often get discouraged about the state of things concerning the disease and the state of my life and all the change I wish I could make happen but physically I am unable to. But I forget that small changes, small acts can have huge impacts when carried out diligently. I have so many big ideas, big dreams that I hope to achieve one day. But I also have to remember that one day is now, and it’s probably better to focus on what I can do today, as I am and with the resources I have now. And I think putting in the work that might feel small, that isn’t NY Times worthy, doesn’t mean it lacks the chance to make a difference. There’s a feeling you get when you pour yourself into something you care about, that seems to carry out a mission from deep inside you, even if you don’t know what that is exactly. I get that feeling every time I sit (or lay) down to write. I may not know for a long time what the role of all this is or how it will play out in the larger context of things later on down the line. I just know it’s what I can do now. It’s my something, so I’ve got to keep at it.

It’s been a pretty sick and trying few weeks for me, and I feel often that accessible moment of how easy it would be to just throw in the towel, or to become hardened by the relentlessness of the experience, but I want to remind the other hangers on the edge out there to hold tight, because not only are there rare gifts to find within all this, things will change. They have already begun to. Today will become tomorrow. And one day soon enough, this will all be a memory of something that yes, didn’t kill us and made us stronger. Hang in there. Hang on. It is going to get better.

Health, Happiness, Cliffhangers 

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An Open Letter to Myself, To Be Read 10 Years From Now

Dear future self,

Congratulations, you’ve made it to 41. If you’re still living in your parents pool house, don’t feel bad. We all move at our own pace. I hope this letter finds you well. You know, I normally hate that line, mostly because it’s hardly ever genuine except as an ice-breaking device used in emails just before asking for something, usually money. But I mean it. ‘Well’ is pretty relative term, but you know what I mean–better. Better than today. It’s November 5th, 2015.

For record-keeping, I’ll set the scene. I’m writing from bed, the computer in my lap and Monty sleeping on the edge in his spot. I am achy, heavy-bodied, and nursing a head-ache that now spans the entirety of my face. It’s strangely resistant to pain medicine so I use frozen peas to numb it. I feel the force of gravity pushing against every move I try to make. Standing up makes me dizzy and faint, so I’ll spend most the day sitting or supine. (POTS) My brain is fuzzy and clumsy. My thoughts come fast and then stutter and mix up on their way out. Writing is better than speaking. It’s more patient. My heart mimics hummingbirds and butterflies. It makes this audible “clicking” sound whenever I lay down, like my own cardiac stopwatch in which to keep time! My blood pressure spikes and drops, making simple things hard, like showers and teeth-brushing. (Dysautonomia) So I stay horizontal–a term my specialist uses and advises on days like today. But the Interstitial Cystitis makes this part harder. I peed 12 times last night! A new record. But who’s counting? This is how crash days go. Another part of the disease that goes mostly unseen.

Greetings From 2015
Greetings From 2015

But let me interject. The point here is not to belabor on about life with illness. This is simply the physical state of things, and the more important point I am making is that I am OK.  I’m not living a life that looks anything like the one I planned for, (haha, plans) but I’ve found meaning here too. I’ve forgiven what my life was supposed to be, and grown into the one I have. It’s smaller-sized than the one I dreamed of, and it bewilders more people than it impresses, but I’ve actually learned to like it here. Every day despite health and money and a recently sad surplus of dead animals in the pool, I crawl into my bed at night and it hits me that I’m OK. A small flick on the side of my head.

Is it a contradiction to say you’re fine but also expect change on a large scale? I hope not. But it’s partly the reason I’m writing now. I detect a shift underway. I hear a slight buzzing sound behind the drone of everyday life, and it hints at considerable change to come. I hope in time this letter will be a relic from an era long gone. I hope it will be a nearly humorous account of the way things used to be once, but that it won’t sound all too familiar. I hope that physically I’ll just barely be able to recall it, like the name of a childhood teacher on the tip of your tongue. That’s my hope, but who can know? Just in writing this I can feel my future self alive somewhere; that she exists on some unknowable plane, and that when she reads this letter it will make her happy.

It’s my belief that if I’m not cured by the time I read this, that my mom will have shot me like I made her promise to. Only joking calm down. If I’m not cured, I expect at least to be a much higher-functioning version of my present self. I should be able to work at least a few days a week, to attend (and dance at) a wedding, or to go on a bike-ride and not crumble for days after. I don’t see this as wishful thinking or as the result of divine intervention. I see FDA-approved, effective treatment options as an only natural, foreseeable byproduct of the serious research to come by governing agencies like the NIH and the CDC. As I write this, there are zero approved treatments. My 25 pills a day are mostly bandaids on a broken knee.

Up until now, the world hasn’t quite known what to do with someone like me, like us; chronically sick people who don’t get better and don’t die. And I understand their unease. This is all relatively new, and we just haven’t developed the etiquette for it yet. But a bigger issue exists in this realm, and it’s having a disease called Chronic Fatigue Syndrome, a name so comparatively small and demeaning, I don’t even like to say it out loud. It’s hard to keep my own eyes from rolling. Instead I call it Shit Turd Disease, which feels no less valid or serious, and has the added bonus of a cackle at the end. Out in the world, I don’t really feel like a person who has a disease. I feel like someone with a strange secret to keep–Something to talk about in hushed, apologetic tones. Or something better not to talk about at all. Explaining and defending it takes an energy you just don’t have. So you stay quiet, but there’s a loneliness in that choice.

And there are consequences to it. For decades, the voices of the sick have been drowned out by the loud, proud professionals with strong opinions about our disease. Their ‘efforts’ are continually led by the notion that we can be cured with exercise and positive psychology. This was what the influential $8 million dollar Pace Trials set out and claimed to prove. Exciting! But upon 3rd party inspection, methodological flaws were found throughout the process, basic but crucial scientific protocol was neglected, and there were blatant conflicts of interest: Trial scientists had longstanding financial ties with the disability insurance companies who’d rather not foot the bill for those with Shit Turd Disease. And yet these trials still helped solidify the narrative that these “non-treatments” were legitimate. For more than thirty years, this idea has fueled study after study, it has shaped public opinion and policy, but it has not actually made the sick people better.

But here is where I detect the buzzing. Our attempts to improve public awareness and patient advocacy are hindered by the obvious: We’re a sick, slow-moving crew, and many of us are house or even bed bound. Fighting to be heard requires a vigor that’s diminished when you’re sick. I imagine a CFS Race for the Cure! would be more like a Saturday Night Live skit, with an embarrassing amount of joggers passing out on top of one another thirty seconds after the gun went off, half of them being hauled off in ambulances. But we’re living in the age of technology now, without the prior limits that hindered communication and networking. Now our collective voices can be heard without us leaving the house, and that matters here. The digital age provides for a new accountability and transparency where there was none before. Maybe now that professionals know their work will be seen by many sets of eyes, they’ll be less inclined to make those silly mistakes like those of the Pace trials that deeply effected the lives of millions of people. All of this helps to balance out the power. This is how we change the direction of the fruitless path we’ve been on. We have always had the right, but now we have a platform–thank you internet– where we can be seen and heard, and we have to use it.

Of course, people will stick to their guns (even in the face of gun laws they’ll do it!) And that’s OK. This isn’t actually about proving anyone wrong. No, that is the egos fight and it doesn’t belong here. This is about knowing that silence never yielded progress, and that to enable the truth we have to listen as much as we talk. It’s about ending an era that has ignored the complexity and vulnerability of what is true for the convenience and righteous facade that comes from salaried opinion. At a basic level, this is a humanitarian cause. What does it say about us that we treat the sick this way? What we do to each other we do to ourselves. So let’s do better.

Curing and treating this disease has never been an issue of capability, intelligence, resources or technology; It’s simply a matter of the right people having the committed willingness to try. If we begin there, it will be enough. But that means really beginning. It means treating this disease like an actual disease, and not some commonplace complaint or nagging ‘woman’s issue’ to be fixed with yoga. It means at least 10 times the amount of annual federal funding toward research. It means leaving the politics and scandal and doubt in the past, and surrendering the ideas that have proved ineffective. Let’s begin with purity of intent–to understand and cure it so people can get their lives back. Then I can stop writing these weird letters to my future self.

There are a lot of different ways that the next decade might play out. I could very well be cured, married with babies, living the kind of fast-paced, busy life I watch other people live. I always imagined I’d have a daughter and name her Catherine after my mom. Of course I might still be sick, an unpaid blogger still living in my parents pool house. I’ve already reconciled both possibilities. I’ll be OK. But then again, I’m not alone. This is much bigger than me.

This is millions of people at the mercy of a disease with a bad reputation and a worse name. And I’ve realized it’s useless to keep crossing my fingers about necessary change. This letter isn’t written out of hope, but as a nod to the future that I feel called to make better, starting now. It’s a reminder that change is possible and it always starts small. It’s my own refusal to stay quiet, especially on behalf of the many sick people far worse off than me, too sick to speak up. When I read this again, it shouldn’t matter whether I’m sick or cured. If I’ve done the work, I’ll be reading it from a better world; where sickness is not a secret, where we gravitate toward the truth, and where the silenced voices are finally heard. If that’s the world I’m living in, this will be the reminder that we did it, and that we’re OK. A small flick to the side of the head.

See you in ten years,

Mary
And Monty