One of the toughest things about WTF Disease is the isolation of it — the doing it all by myself. If I said to someone, back in the day, “I have a kidney stone,” I would invariably get, “Oh, you poor thing, I had one of those back in ’82 . . . ” or at the very least, “I know someone who had that and . . . ”
But now, if I say, “I have an undiagnosed illness that causes me to feel like I’m choking all the time, sometimes aspirate liquids, and causes bizarre muscle contortions and buzzing sensations in my throat, tongue, lips, and sometimes it’s very hard to speak clearly, and I’m hoarse most of the time, and sometimes my legs are very weak and I can’t walk, and sometimes my arms are very weak and I can’t lift them, and sometimes my thumbs, they aren’t opposable, I mean, they have no strength, so I can’t use them (I guess that means they’re oppositional rather than opposable?), and my muscles, from my face to my feet, they jump and twitch, many times a day, and my bones, they hurt. Especially the longer ones. You ever have anything like that?”
SILENCE. Yea, no, not so much.
Many times during WTF, people have said to me, “Oh, I know someone who had exactly what you have . . . ” The end of that story varies — they died, they just got better, they got diagnosed and treated, they spontaneously combusted — but ultimately, upon investigation, turns out they didn’t have exactly what I have at all.
Last week my Mom called me. She told me about someone (the daughter of the friend of a cousin) who had exactly what I have, and they never did find out what it was, and she got so she couldn’t walk at all, and her husband had to carry her around for five years
::tangent::Jif, better get your ass to the gym::end tangent::
and she couldn’t talk, and one day she just got better. No diagnosis, no treatment, just got better. Now she’s fine. Don’t you want to call her?!
Sure. “Howdy, stranger! I understand you were seriously fucked up for five years, and now you’re not! ‘Sup wit dat?!”
No, Mom. I don’t want to call her. If she had a diagnosis; if she knew a doc to see or a pill to take . . . or anything that I could DO, I’d be all over her like smug on a doc’s face. But she just kinda . . . survived until she got better. I can do that. Thank you for telling me, I mean, others have told me this, too, that sometimes weird things happen and we never know what they were, and they go away. That would be wonderful. I still believe that could happen. But I don’t want to call her.
There are some people I could talk to, who have had these symptoms. Well, that is, I could talk to the ones who can still talk. But I don’t want to. Because even though I (nor 20+ docs) have not been able to figure out what other illness could produce all these conditions, I still choose to believe I don’t have that one. (There’s no test for it; it’s a “wait and see” diagnosis, they tell me.) Most (like, 99%) of people who have that illness become much more seriously incapacitated than I, over the period of time that I’ve had WTF Disease. For most, it progresses very quickly. So I keep hoping for some other definitive diagnosis, or to be one of those people who “just got better.” Living with the cloud of that other possibility, though . . . it weighs heavily.
Going to the center for that illness at JHU is on the short list of next steps that my primary doc and I recently discussed. For now, I’m not making the appointment. That could change at any time. And if I do have it, I’m very thankful for this relatively healthy time (compared to most other folks who have that), and I’ll keep trying to get better and better at using this time. That’s a thing I want to do regardless of what WTF is. Time is precious. Speech is precious. I try (and fail, but keep trying), to only say that which will be helpful, productive, creative for someone. And not to bother with all the rest — the petty, the critical, etc.
My Christian beliefs get me through every day with WTF. Because in my personal theology, there is another who knows exactly what it feels like to be in this body. There is nothing we experience that Jesus did not experience (Isaiah 53:3-5; Matthew 8:17). And the One who made all the cells understands how they’re going wrong and how to make them do right. So I do have someone to talk to. And I also think that in some ways, living with WTF is not unlike living with any other frightening illness. No matter how many people are in your support group, at the end of the day, you live in your body alone. Unless you believe, as I do, that the Spirit of God is in there with you. That helps, when nothing else does.
Work helps. Laughter helps. Touch helps. Blogging helps. Listeners help. Hope helps. There, now I did it. I wrote “help” so many times that it doesn’t even look like a word any more.
But what I really want to know from you, is, what is your favorite line from a movie?