Note: This entry is pretty much one big whine. When you’ve been sick for ten years, you get a coupon in the mail that entitles you to one 1800-word whine. I usually try to be at least somewhat upbeat and hopeful on the blog; I’ve made no attempt at that here.
The Sunday before Memorial Day in 2004, approximately 18 hours into my first crash, I was struggling up the sidewalk to the emergency room of St. Agnes Hospital in Fresno, when a man coming from the building stopped in his tracks.
“You look really sick,” he volunteered.
And that lay diagnosis, ten years ago, was, more or less, the beginning of my life with ME/CFS.
Ten years. There’s something so final about having finally rounded out a decade with this thing dogging me. I knew a long time ago, long before the five year mark, that if people were to get better, they generally did so by then, and despite my early convictions that I would get well – that I, of course, was the kind of person who would get well – it wasn’t long before I knew I was going to be one of the ones who didn’t. (It turns out that chronic illness’s position is that your self-concept doesn’t mean squat.)
So I’m no less likely to recover than I was before rolling over this anniversary, but there’s a greater sense of my well self being gone for good now that I’ve arrived at it.
And on this occasion, I have a confession to make: I’ve been struggling to write for the blog of late.
Part of it is an effort toward keeping myself sane. Writing about being sick requires focusing on being sick, and most of the time I would rather be plugged in to all the things I do to help myself avoid remembering that I’m sick, despite that I lie in the same place all day and am really, really sick.
Another part of it is that I sometimes think I’ve run out of things to say about it. A decade in, it’s hard to come up with new content when life remains so much the same from day to day.
I have two choices on this front: I can write about the life that I have, or I can write about the life I lost. And in terms of the life that I have, because it’s so much the same from day to day, there are few noteworthy events to put into words.
And what more can I productively add about the life that I lost? It’s been receding in the mirror for long enough that I no longer feel it’s relevant or that I’m relevant. If I were someone who’d left the job market voluntarily and wanted to go back into it now, I would be significantly out of date. That comes through when I try to write – I’m so disconnected from the well world that I struggle to know how to relate. I know that I’m to the point that I don’t know what I don’t know about what’s changed out there.
It seems, more and more, like I’m turning into the kind of pathetic person who clings on to past accomplishments for the lack of any current ones. “Glory Days” is not an anthem to aspire to, after all.
My last paycheck, the last time I cooked a meal, the last time I went shopping, the last time I went out in public on a semi-regular basis – because of too much pushing for too long, all that was six years ago.
I didn’t do a good job of envisioning what my life might be like if I didn’t get better. For a long time, I attempted to keep things as much the same as I could and have ME/CFS disrupt my life as little as possible, thinking healing would happen nonetheless. That meant I wasn’t truly anticipating where I could be in five or eight or ten years. I just presumed that I would be able to keep on the way I was, with minimal adaptations. And that was the wrong call. The illness did not stay the same for me, and eventually it landed me solidly in this ditch.
It’s like living in a permanent Throwback Thursday. When friends post pictures and say “So long ago!” it doesn’t seem so to me. My well identity ends ten years ago; I feel like it must be still 2004 and any minute now my body will kick into gear and time will start moving forward again for me.
My well friends’ lives are going on. They’re past the point in life where most people are in entry-level positions. More and more of them are management, in executive positions, in business for themselves. They’re not rank beginners anymore, not just in a place of promise. To paraphrase Dave Barry: Once we were The Hope for the Future; now they’re The Hope for Right Now. I’m immensely proud of them. But it’s not a place I’m entitled to relate to; they’re not my accomplishments, I haven’t put the work in, I haven’t gotten to that level. And I’ve lost the promise I had. It didn’t pay out. I got sick, I lost my nerve, I crawled into a shell to protect myself. Eventually I had to retreat from the world entirely, and that’s where I remain.
Instead of realizing my potential, I’ve been busy continually failing to improve. I know it’s “not my fault,” but if you’re sick for any length of time, you will find out it is your fault. Because you will be told dozens of things people have heard worked for someone’s aunt’s friend’s sister, and you’ll have a constant nagging feeling that one of those dozens of things must be the thing that will work for you, and you’ll be racked with guilt since you haven’t tried all of them because if you don’t, how will you ever know, even though you’re at 100% of your energy allocation just getting through the day and trying to deal with the inevitable unforeseeable frequent crises the disease throws at you, and you’ll get one more email saying your aunt’s friend’s sister did whatever for your current crisis and then the useless and overwhelmed and utterly defeated sensation will descend on you all over again.
Well, maybe you won’t find yourself there. But I have. And honestly, there is only so much you can try while taking care of yourself and staying sane and well (to the limited degree that “well” applies). When the decision for what you use a week’s energy on is between “see a loved one briefly” or “have a short phone call” or “try a new thing,” what do you do? When everything you might do takes at least a week’s energy, and every year you lose at minimum a couple weeks to each doctor appointment, then a bunch of unforeseeable periods of unpredictable length to random downturns, and some additional weeks to carefully changing to new bottles or brands of things you already take (because the only way to identify problems is to change one thing at a time), how do you ever get ahead with those maybe two dozen weeks a year?
The truth is, you don’t. I don’t, I’m not, at least. I’m just trying to stay in place. I’ve fallen below the invisible line where I believe significant improvement is possible (and your aunt’s sister’s friend will tell you you’ll never get well if you don’t put the right energy out into the universe, so it’s a self-fulfilling prophecy). For years I’ve kept thinking that in another year I might be just housebound instead of bedridden, but with my loss of the garden walks I managed the previous two summers, I am forcefully reminded that even some of the best care available anywhere and an enormous, supportive network of family and friends is not always enough to even stay in place.
Over the last ten years, I’ve lost touch with what made me a good writer in the past. Some of this is the cognitive dysfunction of the illness; I can remember it eating away at my insight and ability to make connections as far back as the first couple years I was sick. I used to think of myself as bright and perceptive, and those make interesting writing possible, but I feel very far away from bright and perceptive now. All the stuff I take to keep me alive – the half-dozen soporifics I swallow for sleep every night – half of those are psych drugs, and one of them has an especially bad rep for leaving you feeling lobotomized. But it’s what’s keeping me alive, so I stay on it and deal with my brain being made of Play-Doh. I know those parts are in there, but when I try to reach them, I have no access. It’s like running with a kite on a still day; you can try and try, but if there’s no wind to catch, you’re not flying anything.
The effect of the sleep cocktail is more severe (in terms of how much it cuts me off from higher functions) but less emotionally alienating than the Prozac I took in high school. On Prozac I could still get to some of the creative parts of my brain, but I felt like I was rolling around in one of those balls you put hamsters in to give them exercise. I could experience the world, but none of it affected me emotionally. With the current cocktail, I can feel the world a little bit more, but the creative part of my brain is not there as it was in the past.
The bit of emotional numbness that comes along with the current cocktail is somewhat helpful, in truth. I work to keep the world from affecting me, because I don’t have the energy to deal with the emotions that it might engender.
I wish I could say that there were a set of Great Truths I’ve learned over the past decade. After all, that’s what our culture thinks we get out of dramatic, life-changing illnesses – turned into a minor-league Dalai Lama. I could tell you all the ways I’ve adapted, or the things I appreciate more than I did – I have in the past, and maybe I will on some other occasion. But those are just things I’ve been forced to do. If you’ve gone through a personal trial – and all of us will, sooner or later, probably more than once – you’ve done some of them too. It doesn’t make me any more noble or wise than the rest of humanity. In truth, my fragility has made me more selfish and fatalism has made me more cynical.
The Great Truth, in the end, is that this sucks and it’s unfair, it’s eaten ten years of my life, the brief span of existence I’ve been granted is largely going to waste, there are no miracles on the horizon, it’s likely to suck to a greater degree for me again in the future, it’s making a lot of other people’s lives suck too – more of them, each and every day – and we need to do a lot more about it.