A Story about Shoes

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.

I remember very clearly the tears that were in my eyes when I banished the fabulous but precarious shoes to the back of the closet. My frustration and sadness ran much deeper than footwear. It didn’t feel like putting shoes away; it felt like putting away the version of myself that I’d known for forty years. I didn’t know who the next version of me was going to be exactly, but she was going to be facing some serious physical and emotional challenges, and it didn’t look like she was going to have very much fun. And she definitely wasn’t going out in those shoes.

In the months following my diagnosis, I said goodbye to many things. Some were physical, but most of the physical goodbyes were really just symbols of all the ways that I thought I needed to change my world before it was changed for me. I was just a couple of months into being a person with multiple sclerosis, and speaking frankly, the future looked grim. I didn’t want to think about ways that MS was going to change me or impact my life, so when I saw a bump coming, I cleared the road. Better to stop wearing the shoes than to risk falling in them.

Now let’s fast forward four years. I’d like to say that my balance has improved and the shoes and I have been happily reunited, but that is most certainly not the case. I still have no business tottering around in four inch heels. But when I found them in my closet, I wasn’t sad or disappointed. This time I just gave the shoes away.

I’ve learned that there’s no need for me to create some kind of artificial buffer between myself and this disease. Yes, there have been changes in my life over the past four years, and some of them have definitely been the result of physical symptoms. There’s no way to hide from that. But who I am at my core has not changed. There isn’t a “Katie Before MS” and a “Katie After MS.” I wasn’t defined by my athletic abilities or my fancy shoes before this happened, and I’m not defined by my lack of those things now.

Having stopped trying to protect myself from the “what ifs” of MS, I’m free to try harder instead of turning away from challenges. The fear of failing isn’t a reason not to try. For me, trying harder might mean taking a longer walk every morning, even if it’s scary to feel my legs growing weaker on the way home. Or it might just mean engaging in more open and honest conversation about my needs and my future. I’m trying to let my actions be guided by actual limitations, not my ideas about what those limitations might be.

I know I don’t have this all figured out. My perspective has been in constant evolution for the past four years, and I can only assume that it will continue to change in the years to come. For now, I’m claiming a balance between realism and highest hopes, and I’m more comfortable with the idea that MS is a part of my life, but not the whole of it.