Friends, family and faithful readers (both of you): You’re giving me too much credit.
I got a lot of wonderful and gracious feedback about my strength and grace yesterday, but I feel like I need to come clean. I don’t feel very graceful, or strong, or brave. I’ve spent much of the last two months in deep denial that anything serious could be going on, and much of the last week laying around on the couch like a wet paper towel. If I try to my wrangle my emotions into some kind of coherent form, this is how I feel.
1. I’m betrayed. A mutiny has begun and I’m Captain Bligh. It has started very quietly, in my right foot. But I have to assume that my right foot is down there stirring up trouble with my right ankle. Maybe with the left foot. And once those two get together, who knows what’s next. I have a sense that over time, I will feel that more and more of my body parts are asserting their independence from the civilized and reasonable direction my brain provides — how very rude and undisciplined. And it’s an incorrect feeling, since in fact this whole thing originates in my brain, not my foot. But my feeling is there, all the same. I blame the foot, which has let me down.
2. I’m different. We’re all different, of course. We’re gay or straight or pink or brown or married or single. Cheerful. Crabby. But in my heart, I feel like there’s something that’s different about me now in a more fundamental way. Partly, it’s that my body is running a different kind of show. Things are going to unfold in a non-traditional way for me. But more profoundly, it’s that I’m aware of my potential and my potential limitations in a way that (I believe) is different from most of you reading this post. There will never come another time when I’m not thinking about what might happen next, and trying to be ready for it. That’s not a good or a bad thing. It’s just something new.
3. I’m streamlined. Starting around the same time that we learn to talk, we’re always wanting things. To be a cowboy, to be a cheerleader, to meet that boy, to get into a good school, to get that first job. Maybe to be thinner, or to make more money, to get a bigger job, to get a bigger house. A baby. Another baby. We’re always wanting the next great thing. It’s human! For me, at least for the moment, I find that my list is suddenly much, much shorter. I just want to be happy. It feels pure and simple — kind of liberating — to focus only on that one thing. Once the newness of this MS business wears off, I’m sure I’ll get back to a longer list. The spots on my brain have not burned away pride or vanity or ambition. But just for today, I’m grateful for the clarity.
4. I’m self-conscious. Not in the way that you feel when you’re over-dressed at a party or have to walk into a meeting that’s already in progress. I mean this in the most literal way possible. At every moment, I’m acutely — almost excruciatingly — aware of my own body. What is this ache? What is this twinge? What is this tingle? Is it a disease? Is it a drug that I’ve been taking? Is it permanent? Should I call someone? Does anyone else notice? I’m assuming that this will pass, as well. A human body, after all, is a magical thing but also mundane. We have to live with them every day, and for the most part, they get the jobs done without notice or comment. Most days, they’re not worth discussing. That will be nice.
5. I’m loved. We walk around touching other lives all the time. Childhood friends, camp friends, college roommates, colleagues, neighbors. Life being what it is, these are usually passing moments. We graduate, move, get busy, have a baby, change jobs, and throw all our cards up into the air, never really knowing how they’ll land. Somehow even our nearest and dearest may end up being people we speak to every month, or maybe less. But this week, I heard from people from every single moment of my life, all with messages of support and love. Getting these messages is like a hot, sunny day in the middle of winter. Like a fuzzy bathrobe for my soul. I’m incredibly grateful for the strength of the bonds between friends and family, and for the love and warmth that remain even when time and distance stretch out between us. And I’m lucky. It feels pretty great to be sent love and good wishes from everyone you’ve ever known. I wish everyone could get a week like this, although hopefully for a different reason.
6. I’m tired. I had to take some drugs this week that made me not sleep very well, but more than that, it’s just hard to settle your brain down with all this going on. I’m behind on everything and my house is just about out of control. So be warned: Christmas cards are coming late this year.