by Ann E. Wallace
It is raw, too new, to make sense of. I do not even know where to begin. And that is unusual for me. I can always find a line, a snippet of conversation, something, to get the story going. I am a writing teacher—I know how to ask questions that lead to a place of meaning. But here, in this moment, I struggle. I do not know where this narrative is meant to go. And, without that, I do not know where this narrative begins. This is a story that is hard to tell.
It could begin so many places. Perhaps here. One month ago, I began having severe vertigo. All the time. Every few minutes in fact. Over the next few days, my hands started to cramp up. Then my arms went numb. Next my peripheral vision seemed to go. And I began forgetting things. Little things, like the funny comment my two-year old made last night. But also bigger things, like the end of the year meeting at my five-year old’s school.
A week after the vertigo had begun, I had an MRI and was diagnosed with multiple sclerosis. Now, MS is not the end of the world. It is not exceptional. It is a very livable disease. But it is incurable, degenerative, unpredictable. And it is lousy. It is really, really lousy. Because it has thrown my whole sense of who I am, of what my story is, off course.
Until MS, my story—or at least the story of my body—had a very specific arc. It hinged on the fact that I had ovarian cancer when I was 22 years old, just as I was graduating from college. Most women die of ovarian cancer. Those who survive usually go through early menopause. But I had an eggplant-sized tumor removed from my right ovary, endured six grueling months of chemotherapy, and was fine. In fact, I went on to have two children. I was, what, lucky?
Exceptional? A miracle? If nothing else, I am a story, a wonder, to most medical professionals I meet, to anyone who knows anything about ovarian cancer. I, too, am sometimes surprised by my own story. It almost seems fantastic, in its combination of suddenness, intensity, and triumph. I never had time to think about why or how any of it had happened; I had cancer and the task ahead of me was to get better. It was not an easy task. Certainly not easy, but it was clear.
But MS, this is the piece that makes me feel I have gotten a raw deal with this body of mine. Hit hard, twice, before age forty. My body, which seemed so strong in the face of not only cancer, but also miscarriages, appendicitis, broken bones, the list goes on, has proved that it is not ultimately resilient. The fact that a degenerative disease like MS could take hold within me, rooted within my brain no less, well, I do not yet know what to do with that. It does not fit into my image of who I am, or where I am headed. And the task ahead is not so simple. Because there is no getting better with MS. Unlike cancer, it is incurable.
For the first time in my life, I have lost control over my body. Most immediately, if you look closely, you will see my fingers curl into a tight claw as they rest in my lap. You will see my hand shake as I reach for a glass of water. You will see my eyes close as I wait through a moment of vertigo. And if you look very, very closely, you will see me pause, to reassure myself, before picking up my toddler, bracing against that same spinning that could send us both toppling to the floor. All of these effects are bearable right now, today. But where they lead, and whether or how much or when they will abate, those are the questions that leave my story without that arc, culminating in a tidy ending, that I so desperately crave.
But that’s not all. The true terror of my MS is that its effects are not limited to the physical. The true terror is in the unpredictable effect on my brain, on my thinking, on my focus. Some days, I think clearly. But most days, it takes an effort to focus myself, to commit to following through on a complex idea, an abstract thought. For a teacher, an academic, who spends my days grappling with words and ideas, it is deeply unsettling to think that this disease could eventually upset the course of my life in ways that extend far beyond the physical.
For now, it would be—it is—so easy to slip into the self-pitying, solipsistic moment. But that is an impulse I reject. And yet, MS is forcing me to reframe my sense of who I am. Cancer is the story that set my adult life into motion. Now, I know I have always been a fighter, a little girl of strong will in a large family of boys. It is impossible to know whether cancer made me into the woman I am, or if I dealt with cancer the way I did because, at 22, I was already becoming that woman. But, whichever it is, cancer has fit easily, smoothly within my conception of who I am. Now, MS—it changes the story in ways I do not yet fully appreciate. It is a story of slipping away, of losing control. And while I am sure I will eventually incorporate it into the broad rhythms, the larger meaning, of my life, right now I do not know what to make of it. Because it is a story without the possibility of resolution, of completion. And that is not one I could have ever imagined for myself.