These two topics complement each other in an unexpected way.
First, the recent death of fellow M.E. sufferer Emily Collingridge has shaken me. And I’m ready to be honest about why. Usually I would skip this part and post the conclusion of my thoughts, but it’d probably be therapeutic for myself and for those reading (whoever you are) to read a different part of the process.
There are many friends I have with M.E. (or, what is supposedly M.E.) that have never known the level of sick that even I have, much less something like what Emily endured in her final years. And that’s good, really! But it’s scary to think that this could be me, because of my susceptibility to this level of sickness. (And goodness knows not anytime soon, because she had the illness twenty-four years and I’m just at ten, but…) It’s not even the death itself, but the way it happens.
Most illnesses so severe will take you out quicker than this. There aren’t many that drag on and on in such a way… In 1995, as Professor Mark Loveless served as Medical Director of HIV/AIDS Programs at Oregon Health Sciences University, he said in his Congressional Briefing that someone with M.E. “feels effectively the same every day as an AIDS patient feels two weeks before death; the only difference is that the symptoms can go on for never-ending decades.” It broke my heart to hear of her suffering so much, for so long, and, just like Sophia, knowing that if she got hospitalized it’d be the worst thing to happen… Then sure enough…
I don’t want that. I want to be home, wherever that might be by the time I’m at that stage in my life. Who knows, maybe they’ll have hospice options for people like us in the future?
My friends say that even when they were at their absolute sickest with Lyme, they could still listen to music softly or watch television with sunglasses on, and they can’t imagine being that ill and suffering that much, not being able to do anything whatsoever. I can’t imagine it, either. I was only like that for a short amount of time, my symptoms being exacerbated by the trauma of those additional infections, and it just sucks all the happiness out of you (being unable to listen to music, in my case, was particularly difficult). It’s so hard to hear of someone enduring that for so long, to be on morphine from so much pain, and to not make it through… Had she not the illness for twenty-four years, she likely would have been able to bounce back to a less-afflicted state of sickness as she previously had, as many do, going in and out of the severity levels. Yes, she was young, but it is still a quarter-century’s worth of disease affecting her body even as it was still forming.
When you get it young, like Emily did, like I did (though certainly not as young as six years old), you usually do experience a remission (most, at around four years after the onset) and a lot of people stabilize after that. Most stabilize after that, actually, into a moderate or mild affliction. It’s just this 30% that get it really, really bad, and it continues to progress over time; almost all the deaths occur from this group. Some never remit, but for the others, something usually triggers it again after the remission or semi-remission, but that could be anything from a year later to a decade later (like a cancer might stay gone for long lengths of time, or come back within months).
I started this blog with severe M.E., my condition having been worsened by secondary infections, and I was very privileged a couple of months ago to remove the “severe” classification from my blog description, “Chronicling a very special way of life, that of someone living with M.E.,” instead of “severe M.E.” Even when I look outside, I can’t help but be reminded of the people who can’t… I remember a year ago, just wanting to be able to brush my teeth whilst standing up. And I have a chance to get better, still. I’ll be in the moderate group, if I can beat the Lyme disease into submission, and that would be good. (Well, not good, but, given my options…)
I never knew Emily personally, though I was a big fan of her her book for sufferers of severe myalgic encephalomyelitis, and linked to it here several times. It is an indispensable aid to those forced to navigate these unstable waters, one that could have only come from someone who knew its unpredictability and cruelty first hand.
It’s really not often I have to think of the M.E. anymore, because the things I do to keep it in check are just.. routine, after all this time. Really, fighting the Lyme disease is my focus and takes up most of my energy. I suppose that’s why being brought back to the reality that even once I get the Lyme subdued, that I’ll still have this terrible disease, has startled me so.
My niece, who I live with, has been sick with a viral-induced cough, and I’ve been thinking, at least it’s not like the flu (which would hospitalize me) so it wouldn’t be that serious if I did accidentally catch it… But then I remembered that it was a viral ear infection that ultimately made my M.E. relapse five years ago. And again, Sophia Mirza, too, was striken into irreversible relapse by an ear infection. So there really is no such thing as a “better” virus when you have ME. Just the thought that if I were to catch something so miniscule…
It was a lot of triggers at once.
And it came at a particularly awkward time, after reading an article about a woman with muscular dystrophy who paints:
“With her condition, most people would just be vegetating, watching TV, enjoying checks from the state. But she does a lot of work. She stays strong.”
I was furious at this.
It’s just more proof that you’re only allowed to be disabled and worth something at the same time, if you still do things. If you can’t, if you’re really, really sick, then you’re just “vegetating and watching tv and enjoy checks from the state.” Nevermind that we need those “checks from the state” to survive, or that watching tv might be the only relief we have from the every day, nonstop suffering…
People don’t want to hear of the severely disabled. They only want to hear of people who are disabled and yet still do things. They don’t want to hear of people who are bedbound to the point of being unable to do anything at all but exist, like so many people I know, and the person I have been (and will be again, one day). People like Emily, when she became too ill to even eat on her own.
Finding that article all started because I was wondering if there was any way I could still do art with the M.E. besides just taking a very long time to complete things. So I googled muscular dystrophy, which, with its similar progressive muscle weakness, was the closest thing I could think of to M.E. that might have more information out there about how to manage it while being an artist.
Then I find an article whose interviewer says that if I can’t do it, I’m just lazy and not strong enough in character!
It was infuriating, and the reason I wrote my “Media and Resilience” rant a long time ago. I really don’t take it as a compliment anymore when people say I’m “so strong” because I’m still doing something…
Because what, when my M.E. gets to the point that I can only lie there and breathe, then I don’t matter anymore?
It’s just horrible being reminded that there are people out there who would look at you and think you, as a disabled human being, are inferior, weak, and lazy, for the sole reason of you existing without also inspiring them.
As fellow blogger and severe M.E. sufferer Laurel stated, Emily embodied “strength, spirit and determination — all of which she continued to demonstrate to the very end,” and which was not determined by how much she did.
She did do a lot when she was physically able, even though it took so much out of her. She thought her causes important enough to spend her very valuable resources on them, but when she became unable to continuing doing in her last years, that did not, and does not, make her any less strong or determined.
Lastly, I would ask you to take the time to read Emily’s Appeal, which she wrote over the course of several weeks while she was still able. Additionally, Emily’s story, from her own words, can be found here.
I’ve no idea what kind of conclusion statement would be appropriate for such an entry… Most of this post is a combination of things I’ve written in other places over the past week, that I edited to make into a blog post. So that so much needless sickness no longer occur, I hope that things change for us in the near future.
♥ a rainbow at night