Think of people that you know who have a habit, condition or lifestyle that has a regular impact on their physical well-being. Runners, yogis, vegetarians, people with allergies, pregnant women. I bet you can think of many, many more. I think of these as sidekicks. My brother and his sidekick, CrossFit. My colleague and her sidekick, veganism. If you have a friend or a loved one with a sidekick, you’re going to know a heck of a lot about it, because you care about that person. Understanding the sidekick is part of your relationship. Sidekicks are often so much a part of a person’s daily life that they come up in conversation all the time.
Well, here’s the thing. My sidekick is MS. It’s something that has an invisible but constant impact on my physical well-being and my state of mind. You can bet that I’m thinking about it for at least part of every day. But even after a few years, I still struggle with how much to say about it...
This is a story about shoes. My favorite shoes. They were deeply impractical, very high heels. But they were full of good memories — parties and weddings and the feeling of being all dressed up with somewhere to go.
The truth is, I hadn’t worn these shoes in years. They were dusty and creaky when I found them in my closet recently, behind some sweaters, where shoes have no business being. That’s where I threw them, almost four years ago, when I was diagnosed with MS...
Before I found out I had multiple sclerosis, I told my family, my friends and my boss what was going on: the weak leg, the doctors, the MRI, the spinal tap. When I found out that the tests were positive, I pretty quickly told them that news as well. I was scared, but I was never alone with this.
I’ve learned since that some people take the opposite approach. They feel that they’re managing this disease well if they never have to tell a soul. And there are others who fall somewhere in between. MS is something to be mentioned only to those close people who really need to know...
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...
This weekend, I'll join my team, Walk Steady, for Walk MS in Burlington, Vermont. I decided to do the walk to show my support for other people who have MS, especially in my state, where the number of people facing this disease is higher than average. If raising a little money and generating a little visibility for MS can help in anyway, then I want to participate.
Now that it's getting closer, I'll admit that I'm nervous.
What if it's cold? My leg gets stiff when it's cold.
What if I can't walk three miles? I think I can, but I haven't lately.
What if I have a limp? I limp when I'm tired and that would be embarrassing.
What if I trip? It wouldn't be the first time.
What if I'm sad? Because having MS is a hard business....
When it comes to doctors, I always follow instructions. When I’m sick, I take the medicine they give me. If I have a pain, I rely on them to tell me how to get rid of it. When I was pregnant, I didn’t even bother with those pre-natal classes. My entire plan was just to do whatever the doctors told me to do.
When it comes to MS, my usual modus operandi is letting me down. I’ve been very surprised about how much has been left up to me. Particularly since the “me” in question is a fairly uninformed rookie when it comes to serious medical issues. What drugs do I want to take? Do I want to modify my diet? Is physical therapy the right choice for me? Do I want to take vitamins or supplements?
I’m approaching the one year anniversary of my diagnosis with multiple sclerosis, and as you can imagine, it’s on my mind a lot.
Although I don’t know if there’s any way to really be prepared for news like this, I obviously knew that MS was a possibility. I’d been asked a lot of questions about “numbness and tingling” and it takes about 10 seconds and Google to understand exactly what that means.
I fell on my stairs last week. Truth be told, I was going down the stairs in the dark when I fell, wearing slippery slippers and texting as I went. Basically, I was asking for it this time. But it wasn’t the first fall, and I doubt it will be the last. For many of us who have MS, falling seems to be part of the package.
I was diagnosed last winter, but I’ve been falling for years. I’ve skinned knees and elbows. I’ve ripped some really good jeans. I’ve twisted both ankles. I’m lucky – I haven’t needed stitches or broken bones. But in retrospect, I can’t believe I didn’t wonder earlier what was going on. Most people don’t have so much trouble staying on their feet.
I’ve been thinking about labels a lot lately. Specifically, the ones I use for myself. We all have them, don’t we? Especially with the inevitability of social networks these days, we’ve had to get more comfortable putting some kind of picture of ourselves forward to the world. And even if you’re a very private person, you probably know which boxes you fit into.
Me? I’m a woman and a sister by birth. I’m a Southerner because of where and how I was raised. I’m a wife and a mother because I chose to be so. I’m a reader and a writer by nature and profession. These are intrinsic, unchanging pieces of me, and have been for most of my life.
Fall is coming. The fields and farms out past my house are starting to look like they did last year, when I took a long walk in the late summer and noticed that one of my feet was dragging a little bit. When I walk out there now, and see the seasons changing, I can’t help but think about everything that’s happened in the past year -- my initial MRI, diagnosis, all the subsequent appointments, and the start of the medication and a different diet.
In a few weeks, I’ll have a follow up MRI and another appointment with my neurologist. Maybe the medication is doing what it should. Maybe all this healthy eating has done some good! If not, it’s back to the drawing board (maybe after a giant ice cream cone) and we’ll see what might come next.