Here’s a poem I really like. It’s by Brenda Shaughness.
I Have a Time Machine
But unfortunately it can only travel into the future
at a rate of one second per second,
which seems slow to the physicists and to the grant
committees and even to me.
But I manage to get there, time after time, to the next
moment and to the next.
Thing is, I can’t turn it off. I keep zipping ahead—
well, not zipping—And if I try
to get out of this time machine, open the latch,
I’ll fall into space, unconscious,
then desiccated! And I’m pretty sure I’m afraid of that.
So I stay inside.
There’s a window, though. It shows the past.
It’s like a television or fish tank
but it’s never live, it’s always over. The fish swim
in backward circles.
Sometimes it’s like a rearview mirror, another chance
to see what I’m leaving behind,
and sometimes like blackout, all that time
Myself age eight, whole head burnt with embarrassment
at having lost a library book.
Myself lurking in a candled corner expecting
to be found charming.
Me holding a rose though I want to put it down
so I can smoke.
Me exploding at my mother who explodes at me
because the explosion
of some dark star all the way back struck hard
at mother’s mother’s mother.
I turn away from the window, anticipating a blow.
I thought I’d find myself
an old woman by now, travelling so light in time.
But I haven’t gotten far at all.
Strange not to be able to pick up the pace as I’d like;
the past is so horribly fast.
Pretty great no? It’s funny how some poems feel like they were written just for us, as if the author knew exactly where we’d find it and what it would do to us, hitting us in the gut in a coffee shop! Or heart. Our insides somewhere. I love this part of poetry. How fast it is. How in just a minute or two you can cosmically connect with a total stranger, dead or alive, and feel more seen or heard than you have by actual people. That’s powerful stuff!
I’ve recently been reading Anne Sexton–her history and her poems–and both are intense and curious and heartbreaking, but deeply resonant and I’m eager to read more. I plan to order someones cheap, used copy off of Amazon, and hopefully I’ll find parts that are underlined or circled with little notes in the margin. This is one of my favorite perks of reading (used) tangible books as opposed to electronic, kindle types; the human mark on the pages. They’re like little visceral clues of other life, but exceptionally personal. More confidential than say, finding someones grocery list, although there are treasures to find in that too. Maybe I am just an alien from another planet seeking signs of life and getting way too caught up in casual life leftovers. But somehow I feel less alone when I see a persons scribbles to the side of a page. Their unique handwriting next to that flat text against the page– It heightens the effects of the words. It brings the whole thing to life. It always makes me think that someone else sat alone somewhere, reading these same words and they were compelled enough to write themselves. Maybe it was there way of writing back, hoping someone somewhere along the way would read what they wrote and feel something. I don’t know, but there’s just something…nice, about that. Anyway, I think I will start with The Awful Rowing Towards God. Or maybe Live or Die and go from there. Did you know that Anne Sexton had two sisters, and one was named Elizabeth Jane, and the other one was named Blanche Dingley? BLANCHE DINGLEY?! I wonder if Elizabeth Jane gave Dingley shit about that.
Last Monday I returned from a trip to Miami where we celebrated a few things, including my birthday. Thirty one- the best yet! Maybe it was a birthday present from my central nervous system, but my body held up pretty well for me during my stay there. I’m also a little better at saying no to certain things when I know I’m close to crossing the invisible line. My threshold or whatever. Anyway I was able to partake in some awesome things that I dont’t always have the health for. I told my brother I wanted to snorkel for my birthday and he assured me this was not a problem. At the beach I submerged myself in the ocean and was immediately comforted by it. Water in general has always felt healing to me, but a warm ocean in the summer is at the top of the list. We could have spent all day out there. All day and all night if my body permitted it. There is something truly holy beneath the surface. I like the muffled silence and spotting darting fish and pretty much anything that moves. We saw so many different types of fish, and every time we’d spot a school or something I didn’t recognize, I’d make my brother Nick come to the surface and tell me what kind it was. I’d repeat it out loud, then we’d go back under. I’m really terrible at remembering the names but I’m trying to learn. I’ve already forgotten so many, but I can say with certainty we saw a crap ton of huge, colorful parrot fish, some barracuda, and a bunch of Nemos and Doris. (Technical names) It was Heaven. My three-year-old niece Olive requested that we find her a starfish and we both searched diligently and came up short. But my brother did find a baby sea turtle, and that was pretty righteous.
Isn’t he so cute? Anyway we came back to shore and had lunch, but most of the time I just kept thinking about getting back into that water. It’s almost Church-like swimming around down there. Somehow in spite of the beaming life everywhere you look, theres a stillness to it. Everything slows down and feels at ease–within me, anyway. I’d like to spend more time in the ocean, specifically underwater. I do well there. I think that’s my goal for this year.
Inevitably all that activity ended me up in a week-long hibernation for the last six days. It’s pretty normal to crash after I travel anyway. And eventually all the extra “curriculars” would catch up to me physically. But I was grateful to hold up for as long as I did. It’s funny, you’re always calculating with this illness. Saying yes to one activity usually means you’ll have to say no to some other one tomorrow or the next day. You’re always “borrowing” energy: allocating it as if it were a monetary budget. Going over, or spending too much, means you’ll pay. So you’re always considering cost and reward and whether the consequence will be worth it or not. You don’t always get it right, but you get better as time goes on. In the case of swimming and snorkeling and fishing that day, totally worth it! Still, I think there is a better way to navigate this illness than living the “push-crash” lifestyle. Doing what you want for a certain amount of time, and then spending at least double that amount of time in bed in the future. Most CFS’ers live this way, not because it’s the best or right way, but because it’s A way to at least do some things and not live your life in bed. Anyway, I hope to discover a more sustainable way to go about this, but it works for now. Kinda sorta. You get me.
On another note, I keep doing this thing that I’m trying to stop. I write and write and write and then I edit and edit and edit and then the essay goes in new directions and I want to keep everything a decent length so I start over and consequently end up with 6 different half-written, diligently edited posts, none ending up on the blog. It’s a pretty stupid system and I’m going to try and stop doing things that way. Sometimes my idea about how I want things to look or turn out hinders my goal which is not just to write well, but to write consistently and allow part of what’s happening in #marys sick life to inform my stories–even if what’s happening is boring or sad or awesome or mediocre. It’s a continual lesson in letting go that I’m still trying to grasp– write things out and then let them go. Although it’s easy to mistake for editing, I think I often look through my own words trying to take on the role of reader instead of writer, and I develop this anxiety that I’m not getting through accurately or perfectly representing myself, so I hold off on publishing. But I know this is silly because all I can do is be who I am and write what I know, and if I’m judicious about that then I don’t need to worry about the rest. The truth is I am the writer after all and some of writing is trusting the reader. Showing and not telling, yada yada yada. I think my incessant “reading over” and modifying is just another way to prevent me from putting myself and my words out there on a medium where they’ll live on their own and be subject to scrutiny. Could I really be afraid of criticism after all this time writing on a blog? Probably, which is entirely embarrassing. Because who cares! But pride and vanity are some powerful little devils, and the only way to move past them is to write on despite the superficial concerns.
I’m going to try harder to work and contribute to this space and not become too serious about the whole shebang. Especially to the point where it stifles things. It’s pretty silly getting so analytical about it, because it’s really just not that important. I care deeply about it, but when I zoom out and consider everything, this is just a ledger of one persons life. And pretty unexciting life, at that. I think my concern lies in whether or not I’m contributing meaningful things that will move me and others forward or if I’m just whining on a stick. I am hoping by the end, what and whenever that is, this will all will reveal something larger and more dimensional than a woman child’s diary about sick days and her dog. But even if it is that. Who cares? I only need to focus on what’s in front of me and stop pausing to consider a future I don’t have control of. The one thing I don’t want to do is restrain myself or my words or the creative endeavors I want to pursue all because I’m worrying what it will all “look like” in the end. Concerns like those are what kills momentum, and good ideas, before they even get a chance to materialize. My truer goal should be simply to write and to allow the words to do what they’ve always done–help me to see things that my thinking mind can’t.
So, hopefully you’ll be hearing a lot more from me and I from you. I am feeling happy to be one year older, to know myself even better having lived on earth for three hundred and sixty-five more days as ME, Mary Gelpi. I’m becoming pretty good friends with myself and we’re getting along well. We’re practically finishing each others SENTENCES. Thank you Nick for exploring the ocean with me, and tugging me back to shore when I was too tired to swim back myself. What else are big brothers for?
I really didn’t think we were going to make it. Amelie’s due date was June 18, and my mom and I were scheduled to arrive on the 16th which, in hindsight, was cutting it rather close. She started having contractions on the 14th and by the next day I was convinced we’d never get in there in time. I prayed that he’d wait for us but it was pretty clear by then that the baby would arrive before we would.
Somehow, despite multiple airplane delays and three days of threatening labor, my mom and I arrive to California, pea still in the pod. He waited for us after all. We arrived late, and everyone was tired, mostly Amelie. As we all turn in for bed, I tell Amelie and Keegan to wake me up if anything happens during the night. I don’t want to miss a thing. I am weirdly excited getting into bed, the way you are on Christmas Eve as kid. I finally get to witness the miracle of life. Score.
Roughly 5 hours later, still very dark outside, I wake to Keegan whispering in a firm voice at my door. Mary. Mary! I am still half asleep, Wha? I mumble. Her water broke. We’re going to the hospital. Yes!! This is what I had waited for. I knew something would happen tonight! I dressed quickly but hesitate a moment about what to wear. Are jeans appropriate labor attire? In my peripheral I spot Amelie, walking ever so cautiously down the hallway toward the stairs. She’s in a bathrobe, moving like a ghost, groaning in pain. Are you OK? I ask, dumb question probably. Hurry, she says. We need to go. I quickly put her arm over my shoulder and we walk gently in unison, a conjoined ball of sisterhood floating down the stairs. Where’s Keegan? She asks. I assure her he’s coming. I lie, I have no idea where Keegan is, but I assume he didn’t run out on us.
We walk out onto the driveway, the tiniest bit of dawn peaking at the horizon. Amelie is barefoot. I help her into the front seat of Keegan’s man van. I climb in the back but notice there are car seats on both chairs. Obstacle! I wedge my large butt into the bigger one, which doesn’t really work, so I sit perched up on top of it with half of me hanging off the side. Just as she’s about to ask where Keegan is again, we both see him, a spectacle headed our way; Keegan, running out of the garage as the door descends on him, holding a giant blue rubber ball in the air with both hands, as though it’s a trophy. What is THAT? I ask. Amelie tells me it’s some kind of birthing bouncy ball thingy that helped progress her first labor. But I don’t need it this time! she says, but Keegan is already stuffing the large balloon ball in the backseat, trying to wedge it between me and the two carseats. It’s making the rubbery noise that balloon animals make when being configured. I am laughing but only to myself. I don’t know if laughing is appropriate yet. You never know! he says, and gets into the driver seat. As he starts to shift the car into drive, Amelie stops him with a request: OK, I need you to go slow over the bumps and turns and stuff. But seriously go fast because I don’t think we have a lot of time. I hear Keegans signature cackle. OK, he says, hitting the gas, but easing down the curb of the driveway like a champ.
Now we’re driving fast on the California highway and the roads are all ours. Amelie tells Keegan to call the doctor on the way. I am rubbing her back like a boxing coach, but she says it feels good so I stick with it. Keegan talks to a woman on the phone, which then Amelie takes from him. She tells the woman she’s “In full blown labor”– A phrase both her and Keegan will use numerously in the next hour. This also makes me laugh. Please make sure he knows I’m in full blown labor this time. Keegan has been running the red lights, but now we approach one and there’s a state trooper in the lane next to us. Planning to run the light and then continue speeding, Amelie tells Keegan to let the guy know so he doesn’t pursue us. Keegan rolls down his window and the trooper does the same. Keegan: My wife is full blown labor. Cop: OK. Keegan: I’m going to run this light and then speed. Cop: OK. The light turns green and we speed off in the van. Dude couldn’t have cared less.
I notice Amelie is taking really short breaths from the pain. I remind her to slow them down and try to exhale through her nose. It actually works, she begins taking good breaths. I don’t totally know what I’m doing, but I know deep breaths are better than shallow ones. And they say it in all the Hollywood labor flicks. I rub her shoulders and the big blue ball drifts over to my side again, crowding me back there. I laugh to myself again. I know I will remember this car ride forever.
At the hospital we get Amelie into a wheelchair outside and Keegan throws me the keys to go park the van. In the wheelchair Amelie informs the nurse that she’s in full blown labor and instructs the nurse to run. The nurse reminds Amelie that she is going to be OK but that they aren’t going to run. By the time I get the car parked and up to the room, she is being hooked up to IV lines and monitors with all kinds of wires emerging in every direction. There is a surprisingly large number of staff hurrying in and out of the room, performing respective tasks. Amelie has one concern; the epidural. I’m ready for the epidural as soon as possible. Can you make sure they know that? That I’m ready as soon as they are? They are asking her a ton of questions and typing in answers or writing them on a chart. I imagine that she wishes the questions would stop. I’m familiar with this position; being in pain, needing help that only someone else can provide, but first having to answer question after question–none of them seeming more important than the pain. The nurse tells her as soon as she’s checked into the system, she can have the epidural. The Holiest of Holy’s.
I am standing to the right of the bed, watching a machine hooked up to her which monitors the contractions. It looks like a seismograph. It strikes me what an interesting device this is. A qualitative way to witness someone else’s pain, to measure it even. This part sticks with me. I try to talk her through the bad ones. Since I can see them peak and descend on the monitor, I’m able to tell her when the worst part is over. I remind her to breathe deep. There’s not much else to do now besides refill cups of ice, which Keegan and I take turns with. It’s just like the movies. Amelie informs another nurse that she IS ready for that epidural, just so she knows.
Finally, the last of the questions are answered, and the man with the miracle appears in the doorway. He is glowing yellow and angels sing in harmony as he makes his entrance. Amelie perks up. Absurdly afraid of needles normally, she couldn’t wait for this one. It only takes a few minutes, and then the magic starts to work. You can tell because Amelie has color back in her face and relief in her eyes, as though she can suddenly breathe again. Not to mention she’s smiling, and much more chatty.
Now everything slows down. Keegan and I take a nap. I guess numbed up Amelie continued to labor. When I wake up a bit later, my mom has arrived with coffee and food. We eat and re-energize and prepare for the big show. Just a couple hours later, to the nurses surprise, Amelie is eight centimeters and the time has come. This is it! Yeah! The only problem is that the doctor is not here yet. He’s on his way from another hospital, but he is in traffic. Note: California traffic is different than Louisiana traffic. My mom and I sit at the bay window, on the lookout for Doctor James as the nurses quickly turn the room into a saran wrapped tent. There’s another doctor there in case hers doesn’t make it, but Amelie likes sticking to plans. It’s kind of her thing.
The nurse tells us he drives a gun-metal grey sports car. Of course. No sign of him yet, so my mom and I start singing Amazing Grace aloud in a two part harmony. She taught us this years ago– something about the vibrational energy of that song. We have sung it ever since when we’re in a bind, and somehow it always comes through. There we are, Amelie trying to hold off pushing, the nurses preparing the room like busy birds, and two women at the window singing in decent enough harmony, (I may have been a bit flat). By the third verse, a small silver sports car pulls up and a tall doctor rushes out. He’s here!! We all cheer. Amelie looks like she’s about to have a baby.
The doctor can barely get his blazer off and the scrubs on before she’s on her second push. I stand to the side between the doctor and Keegan. I even hold a leg! It all happens really fast. On the third push we can see his head. It is crazy. Amazing. Five pushes later, he is out. He doesn’t cry right away and the silence is paralyzing. I am worried but don’t say a word because neither the doctor or nurses seem concerned. It feels like forever but was probably four seconds. As Amelie gets both hands around him and brings him to her chest, he finally cries out. That weak, pathetic, entry level cry. The cry of alive. As soon as I hear it, I start to cry too. I never used to be emotional like this. But it feels good. Happy tears. He doesn’t even cry long. He gets swaddled and passed around to everyone like a perfect soft package. I watch his parents hold and love him, both grandparents, and then it is my turn. I can almost feel the love he’s been given already radiating from him. I think about his entrance to the world–how every baby should be this lucky. He’s alert, blinking slowly as he takes it all in. How he can already smell so good, I have no idea. I hold him and cannot fathom that any of us were ever this small, this helpless. Why do we ever convince ourselves we are meant to do this alone? Holding him I feel solid relief. Not just that he’s OK, but that the world is OK. In this moment, he embodies the world. Everything will be fine. He’s here. It’s perfect.
I’m writing from my iPhone, supine on the couch. It’s the first time doing this because up to now I’ve experience so much frustration typing on this keyboard that the idea of writing a whole blog post on it felt out of the question. I could just imagine the many many predictive text failures and me growing angry and tired. But, alas, I can barely move. I don’t feel strong enough to sit upright and feel comfortable. All my limbs are weighted, my head feels like a bowling ball supported by a twig. All my appendages hang like deadweight to the floor. Mostly I feel really brittle.
I had a bunch of nerve-racking dreams last night with intermittent nightmares. I wake up with 5 or 6 vivid memories of all these scenes playing out in my mind. Many times it’s in the middle of the night and I wake up to the sound of my own voice saying “Mmmmmm” but unable to get the word out, my jaw straining and my mouth tight. This is also happening in the nightmare; I’m unable to speak, often unable to move, and I’m trying to call out. The “Mmm” sound is for Monty. He is who wakes me out of the dreams. Almost always I awaken, sweaty and afraid, and next to me is Monty, standing close to the bed panting loudly. A few times he’s pawed at the bed or whined to get me out of it. He is my relief. I pet his head and slow down my mind, my breath. He grunts and quickly goes back to sleep. I’m continually amazed by his visceral nature and intuition. He’s more than a therapy dog. He’s a rescue dog.
So many times, when I fall back to sleep, I return to the terror or anxiety or the inability to move, or be heard. Sometimes picking up right where the last dream stopped. Even when they’re not nightmares, they’re usually taxing and filled with angst. Or I’m just too sick to keep up with the characters. This morning just before my eyes opened, I was trying to keep up with my brother and sister who were packing up and moving from our house. My brother was mad that someone had dirtied the bathroom walls and I had a washcloth, sluggishly trying to wipe them down but struggling with my shaky arms. I could barely complete the task. I explained I was trying my best and to go easy on me, that I was exceptionally weak. ‘Why are you so weak?’ he asked, looking me straight in the eyes. ‘I don’t know’ I said discouraged, returning his dead pan. That was it. I opened my eyes to Monty on the bed and my whole body aching, but worse was the heaviness over me. It was so hard to move my cement limbs. It took way too much effort. As I struggled to get out of bed and merely stand up I thought “Ah, well, that explains the dream.”
In fact I think my dreams have deeper meanings than just their physical implications, mirroring my condition. But certainly my symptoms heighten the scenes and details. A while ago I dreamed that metal shards were sticking out of my kneecaps and my legs had a bunch of broken glass stuck in them. (Having glass shards in my skin is a recurring detail) When I woke all my joints were aching, most of all my knees for some reason. The rest of me had that general ache, and it was interesting how my subconscious was using those symbols to reflect my physical reality. Anyway, when I think back on them later, I think, did I get any restorative sleep? I wake up feeling like I ran a horror marathon all night! Not all nights, but most. And it’s interesting to me. Many of my days aren’t filled with a lot of action, but it’s like I have this whole other life when I go to bed at night. And sometimes it’s really amazing. This year in particular, I’ve been able to ‘decide’ to fly and I do it a lot now. It truly feels like I have actually flown, I am amazed and exhilarated in the dream, knowing it’s an incredible thing. As soon as I believe I can (like thinking a happy thought in Peter Pan)!or remember that I did it in another dream, I do it. And I experience it fully.. Looking down at roofs of houses, flying and landing onto branches of tall tress. Last night was theatrically hilarious: I flew real high up above this pool, turned upside down with my arms out like Superman and nose dived while doing full 360 spins into the pool. And I knew that I looked like those Olympic divers who land perfectly into water without hardly making a splash. I was showing off, and it felt great! This was just before I realized we had to leave and I was heavy and weak trying to get out of the pool. I didn’t seem to function on dry land. That flying part was fun though.
Unfortunately the rest of the day so far has remained in a crash state. Extremely weak and fatigued, super dizzy every time I stand up, with my hearing becoming totally muffled and my heart doing all kinds of weird things. I’m short of breath and winded even though I’ve barely moved at all. I was supposed to go to a wedding which I was looking forward to tonight, but I knew exactly what would happen if I pushed it and went, so here I lay, with Monty next to me waiting for any movement that looks at all promising .
Days like these are hard, but they used to be much harder. I’d fight them, racking my brain for a way to make it work– to keep plans, to fulfill my own or others expectations, to demand that I was in control and not my body. If I gave in and said no, I’d torture myself imagining all the fun I was missing, and grow angrier at my circumstance. I’d feel hopeless and my mind would exaggerate the ‘unfairness’ of my life with this disease. But saying yes always yielded the same bad result–a deeper crash and an extended amount of recovery time. Which would make me miss out on even more. Now I feel more in touch with my body–I usually know deep down whether or not I can or should do something, and when the answer is no, I spend as little time harping on it as I can. I’ve practiced surrendering faster and divertig my attention to what I can do while I’m in whatever state I’m in. And honestly there is plenty– the iPhone alone can busy you for hours. Yes it stings to miss out, but my wisdom in making the better decision and my acceptance with whatever that is has grown. I think with an illness like this it’s almost a lesson you’re forced to learn. The alternative is just suffering on top of suffering, and ain’t nobody got time for dat.
I’ve got two good books: A Return to Love by Marianne Williamson and Dance Dance Dance by my favorite Murakami. There is Mad Men Season 6 I haven’t seen yet. There are rain storms that continue popping up that I like to close my eyes and listen to. There is food in the fridge, (my mom texts me,) and there is the gift of time I’ve been given to rest and recover through days like this. And it wasn’t always that way. I have to reming myself what a gift that actually is.
As for the dreams, I’ll try to write them down, and since I’ve learned how to fly, perhaps I’ll learn how to shed my physical issues in that world too. Or I won’t. Either way, in this sedentary life of mine, sometimes those active dream-filled nights give me an adventure that invoke my mind and heart, and that’s pretty cool in itself. (Minus the glass shards.) Especially because I remember them so vividly. Anyway, sometimes it takes stepping back and changing the filter through which we see our experience to see all the treasures that it contains. For me that comes with writing, and having the chance to do that on a blog and being able to connect with people is one of the greatest gifts I have right now. So thank all of you for being so supportive and reaching out often. It’s been huge for me.
I noticed an article in The New York Times recently titled “World Health Organization Urges More Care In Naming Diseases.” In early May, the WHO issued new guidelines for naming infectious diseases in an attempt to avoid damaging inaccuracies and stigmas that often the name alone can cause. They emphasized caution and symptomatic detail when choosing one; no animal names like ‘Swine Flu’ or peoples names like ‘Lou Gerrigs Disease.’ The new guidelines are a proactive attempt to prevent “Unintended negative impacts by stigmatizing certain communities or economic sectors.” They also mentioned that “The best practices apply to new infections…for which there is no disease name in common usage.”
Of course I read the article expecting to see CFS as a prime example of how damaging the effects can be from a poorly named disease. When Myalgic Encephalomyelitis was renamed “Chronic Fatigue Syndrome” in the early 80’s, it solidified an environment of dismissiveness, doubt, and critcism. A new stage was set: everything from the publics skepticism to the medical establishments cold shoulder were put into place, and little has changed in 30 years. Now if you had the misfortune of being sick with this disease, you were going to have two battles to fight.
I don’t just hesitate to say those three words out loud, I feel anxiety about it. Sometimes in doctors offices, I feel shameful saying it out loud, as if I’m confessing to how many packs of cigarettes I actually smoke each day. When I’m forced to say it, I swear I can hear any perceived validation deflate out of the room like a popped, zigzagging balloon. The words don’t hold any water on their own; they necessitate explanation that ends up sounding like defense. The words “Chronic Fatigue Syndrome” are not only misleading and insultingly trivial, they sound like a hypochondriacs failed attempt at making “tired” sound serious. And that seems to be the general consensus–that this is a “disease” where people simply feel sleepy all the time. Sleepy is for kittens and babies, and the primary symptoms of this are far, far beyond the bone crushing fatigue we experience. But this is the problem with labels, namely inaccurate ones. There is damage in what the words imply and even more from what they fail to say.
Here’s an example. A few months ago, the Institute of Medicine released a 600 page report devoted wholly to examining and better understanding CFS/ME. The committee not only provided new diagnostics guidelines and better disease management, it acknowledged the severity of the disease and put to rest the idea that it is at all psychological. Surprising many, they acknowledged the issues stemming from the name CFS and suggested a new one: Systemic Exertional Intolerance Disease. (SEIDS) It doesn’t exactly slide off the tongue, but it does finally address a discerning symptom of ME, which is the adverse reaction, down to a cellular level, to even mild exertion. This is far different than general fatigue. An exhaustive study like this one from an Institue with no previous involvement with the disease is a huge step in the right direction. The validation it provided for many sufferers was big, and the recognition of the staggering lack of science and funds to support it will presumeably apply more pressure at the federal level for a major increase.
I happened to read about the IOM’s report and name suggestion from NPR News, which I follow on Facebook. When I saw the hundreds of comments underneath the article I decided to look, and they weren’t anything out of the ordinary. Out of hundreds of responses, most of them were like this:
I know it’s a leap to project the reactions of a few Facebook commenters onto the general public. But in this case, these attitudes are not at all the exception. They represent a ubiquitous perspective most people have, whether online or in person. And maybe it’s redundant to say, but this is simply not a normal response to sick people. It just isn’t. It’s easy to see why sufferers hesitate to say the name out loud at all. Look at the environment we’d be entering into.
So, is this of any consequence? Does it really matter that the general public understand a disease? Not really, besides the demoralizing and crappy way it makes already sick people feel, no, it doesn’t. These people aren’t doctors, (most of them) and so who cares really? Besides basic human kindness, is this of any real concern?
The thing is, yes, I think so. Namely because this attitude pervades more than an uninformed public. This lack of concern, eye roll response travels all the way up to the federal level. Or maybe it trickles down from it. It’s hard to say anymore. Irregardless, by now the two are in some osmotic relationship– One fueling and informing the other. And when this is the attitude at a federal level, the effects are far more detrimental and consequential. $5 million allocated toward research for the last five years from the NIH is a detrimental effect. No cause, no cure, and zero FDA approved treatments are all the result of a disease not getting the attention it requires. Ironically, people who are sick with this don’t want attention at all. They just want to get better so they can have their lives back. But the shot at finding a cure relies heavily on the desire to find one and fund the science for it. When the perception of it is so casual and misinformed, it contributes to negligence– it prevents that possibility of a cure the way it has for the last quarter century.
I can’t help but wonder if the same outrage would exist from people if the disease went by its original name: Myalgic Encephalomyelitis. Would people scowl at its existence and call someone with the diagnosis a lazy-ass complainer who just needs to eat better? Would they judge them for being too sick to work? No, because those responses are not to a disease called Chronic Fatigue Syndrome. They are responses to feeling fatigued; one is fire cracker, the other is an atomic bomb. I realize all of this may seem a little petty. It’s just a name and there are bigger fish to fry when it comes to this illness. But I cannot help but wonder if what’s fueling the size of those fish is at the core, a simple misfortune of a name. It’s crazy to think that a label could do such harm or have such far reaching effects, but I don’t doubt it in this case. The evidence is right there, in this abnormal anger healthy people have against sick people as if they’ve chosen to be sick.
The point is not to harbor on issues I cannot change and I know that. Forward is the only direction now. But there’s such a lesson here in accepting things at face value and the harm it can do when we trust that we know better, before knowing much at all. It’s not just a poor social stigma we’re dealing with. It’s having a totally debilitating disease which costs the country roughly $18 billion a year in lost productivity, and the lowered chance we have at getting better because it just doesn’t appear or sound serious enough. This is where labels have much larger implications than just confrontational dialogue and ousting sick people. It’s bigger than that.
It makes me think of the way I perceive things and other people in my own life. How easily I make up my mind sometimes, one way or the other, about all kinds of things. I think of hearing or reading about issues and people and how fast and automatic a decision or feeling arises inside me. Sometimes I’m proud, thinking I know better about something, even when I hardly know that much at all. I think, if I never would have gotten sick when I was nine, were I still a healthy, functioning person 30-year-old, quick thinking and totally capable, and I heard of a “disease” called “Chronic Fatigue Syndrome,” what conclusion would my mind jump to? What feeling would I get? If all I had to go on were those three words, given that I wasn’t a doctor or otherwise well-versed in diseases, what would that label say to me? That name in its own twisted way, appears to say everything, enough for people to hold up their hands and say “I’ve heard enough, thank you.” Enough to feel decidedly one way or another without hesitation. Quick decisions and judgments like that do harm for all kinds of people with respect to all kinds of issues. I think we can learn from this one, and do better in the future across the board when it comes to making up our minds but remaining strictly at the surface.
Illness is not something to undergo alone, and anyone who has experienced it long-term will tell you that. When people email me about their families dismissing them, doctors referring them to psychiatrists, or marriages that crumble because someone is suffering from a disease with so few options and a world that just doesn’t quite “buy” it, I feel angry and discouraged. Mostly because I believe in the good-heartedness of people and I know we’re better than this. We can do better. Turning your back on someone who is sick is more than insult to injury. It causes its own tragic pain, separate and worse than the physical kind. It’s a new kind of loneliness, in a time you need people the most. After twenty years of being sick, the last five being the sickest, the hardest and most demoralizing part is battling something that so invisible to everyone else, all the while your whole world is crumbling.
The truth is even though it’s still massively lacking, there is more research than ever going on, and thanks to recent reports like the IOM’s and the Pathways to Prevention, pressure is building to invest more into solving this thing. My hope is that in the meantime people will be at least a little diligent before ousting an entire population of sick people as hacks. I hope if you’ve got major beef with the illness, you haven’t just heard the name and stopped there. To learn more about it, Cortjohnson.com is a great resource with vast information, including current and future studies and well-written dictations about their meanings. To those who are sick and discouraged, I hope you’ll read this and have faith that you’re not alone and that the answers will come. Progress is slow but it’s moving. Until then, please don’t lose hope. Worse than being sick is the thought that our life is over if we never get better. There is value to gain in all of these experiences, whether you’re sick defending yourself or dealing with someone who’s sick with something you don’t understand. But try and remember we’re all brothers and sisters here. We need each other. Maybe the history and politics of this disease hasn’t been our kindest hour, but we can still turn it around, even if it’s one less person casting judgment or turning someone away. As is the case with all social change, it always begins with one. We can all do better, and I’ve never lost hope that our future will be far brighter than our past.
Labels and categorizing are important, they exist for a reason. But in the case of CFS, and the WHO’s new guidelines for naming disease with caution, help exemplify the power and possible harm of labels. They must be chosen wisely. The CFS label was not, and it did an injustice to millions of disabled people. But it doesn’t have to stay that way. And despite how long and twisted the history is, it’s not ever too late to turn it around. Slowly but surely, I believe that change has begun and we’re on the cusp of something major. Despite my bad days, I believe in the awesomeness of humankind. We can do better. So let’s begin doing it now.
A little while ago, I was swinging on our porch swing while Monty did acrobatics with a stick and ran laps in the yard. I had been down for some time, but I couldn’t place exactly the source of the sadness. All I knew was that I could feel something missing and the result was not a loneliness but a “looked over” kind of feeling. It’s not uncommon for me to feel lost and uncertain about the direction and usefulness of my life, especially when I’m in a crash period. This feeling felt like it had roots in that. As I let my thoughts wander and my mind clear, these words entered my head and seemed to quiet the residual buzz: “I just want to make myself proud again.” It didn’t repeat itself like an incessant thought, rather the words just stood still in bold print, front and center in my mind. And then all at once I knew what that void I’d been feeling was. It wasn’t just a lack of pride, but the lack of pride and purpose that usually comes from working. Uselessness is a terrible feeling, and I know it arises sometimes from the fact that I don’t have a real job anymore. I haven’t in some time. And yet through this whole ordeal, that loss continues to cuts deep. It has me constantly wondering what I’m doing here and where I’m going and how I’m ever going to get there. As a working girl my path felt so clear-cut. I catch myself daydreaming of my desk and my business cards and the “importance” they implied. But once the crutch of a job was gone, everything inside me felt upside down. Who am I if I don’t “do” anything?
Sitting in my bosses office and having to admit with a quivering voice that I “just physically couldn’t do it anymore” was one of the hardest moments of my life. My whole goal up until then besides getting better, was to find a way to hold onto that job. I knew if I was forced to leave it, it meant everything was irreversibly real. It meant despite what I planned or wanted, the illness was making decisions that I couldn’t change. It meant the scales had tipped and I was no longer in control. (Maybe I never actually was, but the illusion felt good) But now here I had come face to face with the truth that clinging onto the job was only causing me more suffering, besides largely effecting the quality of my work. Were I smarter I would have given in earlier and dedicated myself more seriously to getting well. But I was in a sort of denial up till then. I kept expecting to get better. I didn’t want to believe that this was truly going to be the new state my body. No one really wants to accept something like that, I think out of an inborn fear that doing so means you’re giving into something crappy and letting it take over–That you’re giving up on the possibility of getting well. But it was more just coming to terms with a reality and giving my health the attention it needed. Everyone around me seemed to know the time had come and were just waiting on me to call it, so I finally did.
I can remember solidly a few things from that conversation. I can still see his big sappy eyes as Andrew listened to me speak, and the honest calmness in his voice when he said “It’s been hard to watch. I just can’t understand why this would happen to you.” I tried very hard not to cry but the tears fell anyway, much like they are now just remembering the whole interaction. We hugged goodbye and I tried to compose myself. I remember, I think in an attempt to lighten the sadness of that goodbye, him saying to please stay in touch and to come back and visit often. I said I would, knowing I probably wouldn’t. Knowing that life at the gallery would go on without me, while my own life was drifting into scary, uncharted waters. I punched out for the last time and felt totally numb. The French Quarter had just turned dark, freezing and damp, but I didn’t feel the cold at all. I paid the nice parking attendant with whom I normally joked around without even looking him in the eye. He made some comment about cheering up or smiling but I couldn’t bring myself to respond. I moved on autopilot like a robot. Once in the car all the terrible questions made their rounds. What would become of my life now? Who would I be now, sick and unemployed? What if I never get better? I tried to drown them out but the noise of the radio bothered me. That 40 minute drive home over the bridge felt like a dream. Once home, Monty ran up to me and my mom was sitting in her chair in the living room. Our eyes met and I lost it. “Well, I guess I don’t have a job anymore.” And that, as they say, was that.
Even though I fought it, leaving work was the right thing to do and in my condition, was just a matter of when and not if. In the beginning it was a relief– not to have to fake well, to call in sick, to let down coworkers, and to constantly apologize. But not so long after, I began to feel this noticeable hole, like the gap your tongue slides through after you’ve lost a tooth. I had all this new time to kill but couldn’t spend it how I’d like. The adjustment was extremely difficult. Besides giving me purpose and pride, my job had contributed to my identity and livelihood. There was a little space carved out in the world called Mary, and I was useful there; I fit. I did what was expected of me and was paid every two weeks. But now I no longer occupied that space and I couldn’t make sense of what place I held in the world. Without the distraction of work, I also had to learn to just “be” and accept these new circumstances, which was also hard. When you’re sick like that you can’t just leave and go for a drive, or go get drinks with friends to feel better about it. It makes you confront your life head on since there aren’t the typical escapes. I had to begin accepting my experience and not thinking of my days sick in bed as total wastes. I’m still learning to do this, but it is possible. It began with adjusting the expectations I held for myself, and redefining what my definitions of “work” and “purpose” really meant. For so long work was something you did 40 hours a week and got paid for. And our culture nearly defines who we are by what we do. I no longer had a satisfying answer to that question. “Uh, Unpaid blogger I guess?” It took adapting to where I was at that point and not in the past.I was always going to feel shitty comparing my life sick to someone’s who was well. I had to get real about my truth. Still, those adjustments were hard and I am still learning them.
Life with illness means a lot of time on your hands and a lot of solitude. You have to learn how to be still, which I’ve learned very few people know how to do. You’re away from the typical distractions and noise and chaos often, so there is a lot of “being” and not “doing.” It also means getting to know yourself really well. Luckily, I like myself. We seem to get along. But all of this new vast time without a lot of outside expectation took a long time to really understand and warm up to at all. I had to remind myself that being sick is a part of me but not who I am. That took time too. As time went on I would grow more worried that I hadn’t re-entered the workforce. Or I’d feel these waves of inadequacy like I did recently. But sometimes I wonder if it isn’t the purpose of my soul that’s getting carried out because I have a body that doesn’t allow me to be busy and caught up in the regular tasks of life.
This experience has taught me big things and continues to now. It continues to teach me to let go of things, to be still and not be restless, to be OK being alone, and to accept myself as worthy even if I’m not doing anything impressive or achieving BIG things. Most of these were learned because my body wouldn’t let me achieve all I wanted to, and the lesson in humility has actually made me happier in some ways. All of it has made me come to terms with things that I truly find important, things outside of a job where the ultimate goal was money. If I look at this time away from work another way, it feels more like a gift. It’s allowed me to find and develop my voice for writing, which was my passion all along. It’s let me explore many other parts of myself that were not a part of my life when working. Even small things like learning to play my dads guitar and spending more time with my family that I wouldn’t have otherwise. It’s forced me to find the same joy and fulfillment from the small things that I used to require in the bigger or louder stuff. Today it was just being outside in the sun with monty and appreciating the moment.
I think it’s easy to look back on my life with a “real job” through rose-colored glasses. I was “bringing home the bacon”and dressing in nice clothes and looked and sounded like someone who had it together. But I can still remember sitting at my desk sometimes and thinking is this it? This is what I do the next 60 years and then I retire? I’d be naive to say things were perfect and always made sense then, too. They didn’t. But it looked better on paper and gave me stuff to talk about when people asked what I was up to. Those conversations are funny now ;) I was still wondering about my purpose and the meaning of things then too. I was still asking those same questions. The only difference is, I don’t have the disguise anymore. I am clearly not headed in any predictable direction and I truly don’t know what the plan for my life is. But, at least I’ve got some time to figure it out. All kinds of time.
Still I wonder, were I to be better tomorrow, totally healed and ready to emerge back into the quick-paced world, is that what I would do? Go back to work at some job, have office birthday parties again and two-week vacations, and then all my problems would end? I doubt it. What I mean is, I don’t think that’s what this experience is about. There is something more to it than a temporary roadblock for my life. I know it has more to give me than suffering, and my work is to try and bring light to what has felt very dark. I think by learning to navigate any experience the right way, it’s never a total loss. Sometimes it’s the very thing that propels us or makes us better. There is always more meaning and a path to discover if we stay devoted to following the thing that makes us feel alive– this usually leads to finding our purpose, our spot where we fit. I guess it’s the days when I know that who I am is bigger than the things that have happened, that I still have things to offer the world, and I accept the course of my day even in its smallness, that I make myself proud again. It’s often not in what I do anymore, but in how I receive each day and whether I live it out as a gift or not.