These two topics complement each other in an unexpected way.
First, the recent death of fellow myalgic encephalomyelitis sufferer (or person with M.E., if you prefer) 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.
I have many friends with either 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… Professor Mark Loveless served as Medical Director of HIV/AIDS Programs at Oregon Health Sciences University, and in 1995 he said in his Congressional Briefing that someone with M.E. “feels effectively the same every day as an AIDS patient feels two months 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, with her knowing that if she got hospitalized it’d be the worst possible thing to happen… Then sure enough…
I wonder if they’ll have hospice options for people like us in the future.
My “Lymie” friends say that even when they were at their absolute sickest with Lyme disease, 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. How do you cope with the pain of hearing someone with the same disease as you–your sister or brother in this struggle–enduring that for so long, to be on morphine from so much pain, only to not make it through?
Had she not had 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. 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. A lot of people stabilize after that. Most stabilize after that, actually, into a moderate or mild affliction. It’s just this 25-30% that get it really, really bad, and it continues to progress over time; almost all the deaths occur from this group.
The thing is, 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: from“Chronicling a very special way of life, that of someone living with severe M.E.,” to “living with M.E.” I remember a year ago, just wanting to be able to brush my teeth whilst standing up. Now I have a chance to get better still than I already have, but if I even so much as look outside, I can’t help but be reminded of all the people who can’t even do that, due to this disease. There’s certainly some degree of survivor’s guilt, here.
In my day to day life, it’s not often I have to really 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, but after hearing of this, it brought me back to the reality that even once I get the Lyme subdued, I’ll still have this terrible, terrible, disease.
My niece, who I live with, has been sick with a viral-induced cough, and I’ve been thinking, at least it’s not 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 it was a viral ear infection that also sent Sophia Mirza into irreversible relapse, all the way to her death. So there really is no such thing as a “better” virus when you have ME. On top of it all, there’s now the paranoia of living with an immunodeficiency disease, and the anxiety of knowing the consequences if I were to catch something so minuscule…
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 has found a way to enjoy painting, despite the muscle weakness:
“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 exasperated with anger.
It’s just another example of how you’re only allowed to be a “worthy” disabled person 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 television 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.” 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; like the person I have been and will be again one day; like Emily, when she became too ill to even eat on her own.
I found that article because I was wondering if there were any tricks to navigating muscle weakness that might allow me to still do artwork, besides just taking an excruciating amount of time to complete things. With its similar progressive muscle weakness, muscular dystrophy was the closest thing to myalgic encephalomyelitis I could think of that might have 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, if I can’t “and yet still,” I’m just lazy and not strong enough in character!?
It was infuriating, and the reason I wrote about “Media Portrayals of Resilience in Disability and Illness” two years 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? Am I still strong if I cannot do? Are we not still worthy? It’s awful being reminded–and now, of all times–that there are people out there who think you, as a human being living with a disability, are inferior, weak, and lazy, for the sole reason that you dare to exist without also inspiring them.
As fellow blogger and severe M.E. sufferer Laurel stated in her post, “In Memory of Emily,” she 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. There were causes she thought important enough to spend her very valuable resources on, but when she became unable to continuing doing in her last years, that did not make her any less strong or determined.
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 devastation first hand.
In closing, 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.
♥ a rainbow at night