I originally wrote this post for the MS Connection blog.
I’m sentimental about endings. When I know I’ve reached one, I pause and hold on as tightly as I can. The last time I sat on the floor with my friends and sang at summer camp. The last time I had dinner with my roommates before we graduated from college. The last night I slept in my own bed at my parents’ old house. These are moments to be marked and savored. They give you a chance to say goodbye.
The endings that you don’t recognize are even more poignant. The last time I said goodbye to my grandmother, not knowing that I wouldn’t see her again. The last time I kissed a boy, before an argument that ended everything. I think about these lost endings, which skated by so casually in the flow of an ordinary life. I want to go back and put a mark on those days. Plant a flag. Recognize them for what they were: not always sad, but always important. Moments that defined and framed chapters in my life, even as it changed to become something new.
As I learn to live with multiple sclerosis, I find myself thinking often about unknown, unseen endings. I wonder how many ‘last times’ I’ve passed in the last few years, not recognizing them as they passed me by. The last time I casually checked all the “healthy” boxes on a doctor’s form. The last time I wore very high heels. The last time I ran a mile. The last time I took the stairs two at a time. These were endings, too, though I didn’t know it at the time. By the time I looked up, I’d missed them.
Living with a progressive disease, no matter how slowly it progresses, means living with a lot endings. They may be tiny — unnoticeable even to me — but they’re always there. I find this to be a heartbreaking concept. It’s one of the things that has been hardest for me to come to terms with in the past 18 months. I’m surrounded by these fleeting moments, unsure of how to recognize them or whether to acknowledge them when I do. How can you say goodbye when you’re never sure what’s leaving? Would you want to, even if you could? This feels like something that could consume me if I let it, but I won’t.
I find that there’s a pull from MS to spend a lot of time thinking about myself and my health. It’s always in the back of your mind, isn’t it? Or people are asking how you’re feeling in that very concerned and sympathetic way. But I won’t do it. If I start to pinpoint and mourn every small change in my body, I may never stop. I don’t want this dumb disease to be the main thing I think about. I don’t want it to be the only topic I write about. I don’t want the possibility of disability to become my primary preoccupation.
When I insist on a perspective that extends beyond MS, it’s so easy to see how many things are just beginning. Last weekend, my son and I walked on a path in the woods that neither of us had ever seen. On Monday, I tried something at work that I’d never had an opportunity to do before. This year, my husband and I are tackling a project that I never thought I’d have a chance to take on. There are always new books to read. New foods to try. There are endings, but there are also places where I’m just getting started. There’s plenty to do that doesn’t require me to take the stairs two at a time.
I recognize that in the coming years, there will be times when MS intrudes upon my life more insistently than it does right now. I’m honest with myself about the fact that there will be many final moments — days when I lose things that I once took for granted. But I hope that even as that happens, I’ll remember what I’m learning now. To accept and mark the endings, but to deliberately and joyfully seek the beginnings as well. With or without MS, I think that’s what life is for.