Sometimes... (Myasthenia Gravis Update)

This will not be food-related. I'm entitled to the occasional indulgence in that way, I assume. I'm ready now to write about this:

I've previously updated you on some of the ways myasthenia gravis was affecting me. But I didn't tell you that it also began attacking my legs. That's taken some time to absorb. I'm still not sure I've come to terms with it, but I have come close enough to having it sink all the way in that I can write about it.

I think it started when I began to notice that my feet were often powerless to hold my covers up at night. I would wake up with my feet pinned underneath them, in pain because you're not supposed to keep your toes pointed for hours. Or maybe it started when I began to notice that sometimes I couldn't get up the stairs to my apartment without pulling on the banister--occasionally with both hands. In the evenings, my legs began to feel heavy, like dead weight. I couldn't really pick my feet up off the floor. I would have to hug the wall when I got up to go to the bathroom at night, because I wasn't strong enough to keep my balance. (Symptoms of myasthenia gravis are worst in the evening and at night.)

After firing the first, argumentative neurologist, who just told me none of this was really happening (I am so tired of doctors who dismiss symptoms as just not happening!) I found one who saw, with an actual exam, not only weakness in my legs but several other things, some of which I hadn't even observed myself. And he was confident this was neurological, not psychosomatic. Progress! (Sort of.)

And so I got a cane. I still have good days, and those are cane-free--when I wake up strong enough to walk at the pace I set in my mind, to hold my feet up off the floor, to go up stairs without pulling on the banister--and I also have bad ones, when I am not strong enough even to hold my balance standing still without the cane, when I can't ever get comfortable even lying down because if your legs are partly paralyzed you can't really change positions when you're uncomfortable (and I haven't lost sensation, so I can feel all of it, I just can't do anything about it). I have to get enough rest to even to rest properly. A lot of the time it is somewhere in between, when I can walk without a cane but only very slowly and probably appear to most outside observers to just be extremely lazy. It's more than a little crazy-making.

The relative strength of my body now dictates my activities. I seize the energy of good days to clean and cook for the bad days when I can't. I returned to the fine art of complicated cross stitch samplers because it's a nice activity to do when I'm spending so much of my time in bed. I have learned to chop vegetables sitting down and fold laundry lying on my back. I'm figuring out how to manage this.

But I often think about how, when I was first diagnosed, I stood in the Atlantic Ocean and battled the waves, and there are many days now I am confident the sea would win. Maybe I knew that would happen, somehow, and wanted to have that last chance, that last feeling of holding my own, to know what it felt like and to have the memory of what it was like to have muscles that do as they're told, even if you aren't fully conscious of telling them what to do.

In medical limbo while my new neurologist runs a lot of tests the previous one should have already run if he'd bothered (and I went on an almost futile quest to get a subspecialist to run the ones he can't, finally locating what seems to be the one hospital to have one who will, which means I'm going to have to make the trek to Philadelphia soon), I wasn't sure what else to do for myself, so I got a temporary handicapped placard. The new doctor would have signed the application for a permanent one, he said. Maybe that's one indication I haven't come to terms with my limitations. Hope is a form of denial, and I have some theoretical hope. Myasthenia gravis does sometimes mysteriously go into remission.

Sometimes... Such a strange, torturous hope that word has in it. It has a flip side, too. Sometimes it is a lot worse for people with myasthenia gravis. Sometimes people don't get good days. Sometimes people need wheelchairs. Sometimes people don't go to work anymore. Sometimes people can't bathe themselves. For me, it is still a mild form of this disorder. I probably won't need medication to stay alive--and this is good, because the medications have all sorts of terrible side effects. I'll struggle, but I probably won't be one of those people who goes in and out of hospitals on a constant basis. So the terror of "sometimes" hasn't fully overtaken the torturous hope of it.

When a good day comes after a few weeks of not-good days, it is a shock how easy life is--how easy, I think in wonderment, mine used to be. My life has never really been easy for a lot of reasons, but getting up to walk to the bathroom hasn't been a journey requiring planning and foresight until recently. So on a good day, when I want to walk faster because it is cold and I don't want to be out in it longer than I need to and my legs respond to my desire by actually walking faster, I feel a kind of joy I doubt I ever would have without the loss. On those days, I park in the regular spaces and am free from the fear that someone will see me and not see what is happening and judge me for parking in the handicapped spaces. (This is a thing people do, and it is not cool.)

I can see the good. I mean, cross stitch samplers are delightful but I never would take the time to do them without all this bed rest. Having clearly delineated times to do household chores takes away some of the stress of making decisions about things like that. My cane is super snazzy (see for yourself!). And all of this does make me cherish the little things on the days I am more mobile. Yet I'd be lying if I said I don't also feel the loss profoundly. I'm still grieving, with new losses to grieve all the time. I rage against my own body for doing this to me. I tell my immune system, in futility, that it is trying to kill the wrong things.

I keep much of the depth of my feeling to myself because of its rawness, and I project confidence and contentment with my lot, out in the world. I'm not lying when I do this, because that is definitely a part of my experience, and a big part. It's just not the whole story.

It is hard to quiet the voice inside that demands to know why. But I know there are no answers, or at least none that help. Why? Because I fit the demographic. Why? Because this sometimes happens to people, especially young women. Why? Because people who have had more adverse childhood experiences are more likely to develop autoimmune disorders. Why? Well, why not? There's no answer to that, either.

So you see why I needed a mini vacation. As Jimmy Ruffin sang, "I know I've got to find some kind of peace of mind." But I still have a job to do and I can still work, so back I go, and things will go back to normal on Food for Dissertating for the time being. Work often helps me find that feeling of confidence, too, because I do happen to be pretty good at my job.

What the future holds is a mystery to everyone. Heartbreak comes to all of us in some way at some point, and now it's my turn.