Recently in the space of just a few days I saw two unrelated posts on Facebook in which people expressed relief that they had not been diagnosed with MS. In both cases, commenters said things like, “That’s wonderful news! Such a terrible disease.” Which it is. I know from personal experience because my mother had MS, and I spent my childhood watching her strength fail, slowly but steadily. She was in a wheelchair by the time I was thirteen. When I was in college, she got a motorized chair. She died (not directly of MS) when I was twenty-seven. I was closer to her than to anyone in the world.
But part of my brain read those comments and thought, “Well, if you’re going to have a chronic disease of the central nervous system these days, relapsing/remitting MS isn’t necessarily a bad one to have.” I didn’t think this because I’m flippant, or because I’m unaware that MS can vary widely from person to person. But I’ve been very lucky, at least so far. There are some excellent preventive drugs out there now, and either my MS is naturally very quiet, or the drugs are working, or some combination of the two. (Doctors can’t say for sure which.) I think it’s safe to say that if I didn’t tell you I have MS, you would never know.
But of course no one would choose to have MS. Probably the most frightened I have ever been in my life was the period of many months before I was definitively diagnosed. I knew from my mother how bad the disease could be, but I didn’t know about the drugs that now exist. We were on an adoption waiting list and I was terrified that a diagnosis could mess that up. Would I never hold a baby of my own? Would I be the reason my husband would never have children? Would he be pushing my wheelchair in a few years?
That was over ten years ago. I read early on that research shows that if your MS is quiet for at least ten years, it will tend to continue on in that way. So I am hopeful, without, I think, taking good health too much for granted. And I still sometimes worry. I still sometimes say to my husband, “I’m just exhausted. Do you think it’s the MS?” To which he usually replies, “Could be…or could be the fact that you’ve been chasing a three year old all day. And stayed up way too late last night.”
I’ve looked back more than usual lately at those early days, because of those Facebook comments. And I think that MS has been teaching me one teeny tiny thing, forcing one teeny tiny bit of possible character development, and I’m not saying it makes it all worthwhile (yay! Go get yourself a case of MS!), but it’s something I would never develop naturally, and it’s been useful as a parent: a tolerance for ambiguity.
I first learned the phrase “tolerance for ambiguity” in grad school when studying to teach English as a second language. It turns out that being able to live with ambiguity–not knowing everything for sure, not having everything nailed down–is a huge advantage for second language learners. It’s obvious, isn’t it? If you have to know everything for sure, every second, it’s going to slow your language learning down to a screeching halt. Language learners have to take risks. They have to utter sentences that aren’t perfect. They have to ask questions, make guesses, and move on in order to make real progress. And I remember thinking at the time, I’m just terrible at tolerating ambiguity. I want to know for sure what’s going on, and what’s going to happen.
Well, nothing gives you a whopping dose of ambiguity like a pending or actual diagnosis of MS. The often mercurial nature of the disease is renowned. Many people don’t know when or if they will be hit with another relapse, how the relapse will present, how long it will last… fun, huh? Things really can be fine for a long time, and then wham: things aren’t. A relapse can cause lasting nerve damage. Or not. Relapsing/remitting MS (the more common and usually more manageable kind) can evolve, eventually, into secondary progressive MS. But it often doesn’t.
In those early days, waiting to see whether I really had MS, waiting to see what it might do, I had no choice but to live with the questions. When I would go for a run, it was now an act of defiance toward the disease. I remember finding it reassuring that my feet would hit the pavement hard, as if I were thinking with every step, “SOLID. I’m solid. I’m not falling over. I’m not paralyzed.” I wondered whether the next step would be solid, but it had to be enough that this one, and this one, and this one, was.
I’d had a taste of ambiguity already, of course. You don’t go through infertility without a whole lot of ambiguity. You don’t sit on an adoption waiting list for three years without ambiguity. But somehow MS was the big one. This was my health, and it could impact everything else.
In a way, finally being diagnosed was a relief. It was an end to at least some of the ambiguity, and it was the start to treating the MS aggressively. (Thank you, Dr. Goodman.) But the question of how the disease might progress still loomed large. I learned to inject medicine daily. I waited on that adoption list, grateful that the diagnosis itself wasn’t enough to bump us off. I learned a tiny bit about taking things one day at a time.
We decided not to put life off: we went to Germany and Austria. Walking through Marienplatz in Muenchen, I would think about MS, what it might do. I would think about babies, whether there was one out there for us. I prayed.
A year after my diagnosis, we got our first baby at just under a month old. It was joyful; it was terrifying. And it turns out, so is actual parenting.
Every parent knows this: you don’t know from day to day how things will unfold. Your baby gets sick, and your plans spiral out of control. Your toddler develops a severe peanut allergy that will change how you live. Your first grader has a gift for drawing that you never could have imagined. Suddenly you’re dealing with something that drives you to your knees or brings you great joy. You learn to expect the unexpected.
I’m still not naturally great at tolerating ambiguity, but I’m still making progress, little by little. And the MS is still giving me the chance to practice it, whether I like it or not. The main way this manifests itself today relates to the injections I now give myself three times a week. It turns out that the drug I’m on has one potential post-injection side effect: within a minute or so of injecting, if the medicine enters the bloodstream faster than usual, you might feel like you’re having a heart attack and a stroke all at once. I’m not exaggerating. It would take a whole separate post to describe the experience adequately, but suffice it to say for about three to five minutes you will think you’re dying and want to call an ambulance. Then it’s over, and you’re fine. No damage has been done. It’s just scary as hell.
This rarely happens; maybe once every six months. But every time I inject, I wonder if it will happen. I say a prayer; I mention it to my husband. And then I inject anyway.