The Multiple Sclerosis Paradox

The following first appeared on Multiple Sclerosis News Today:

https://multiplesclerosisnewstoday.com/columns/2022/07/04/the-multiple-sclerosis-paradox/

“Thanks, I hate it.”

Odd way to begin a column, I know. I suppose I’d better explain myself.

That phrase regularly appears in memes and other pop culture media as an expression of dislike for an image or tweet. No one seems to know where or from whom it originated, so I don’t feel too guilty about using it for my own ends.

For me, it’s an expression of both gratitude and abhorrence at the same time. For instance, you can be grateful for the spirit in which a gift was given while despising the gift itself (that sweater from your grandmother, for example). It’s a classic contradiction, and while I certainly don’t consider multiple sclerosis to be a gift, it works well to shed light on a phenomenon that I’ve dubbed the multiple sclerosis paradox.

Let’s look at a few examples.

For obvious reasons, I seek the majority of my camaraderie, advice, and emotional support from the multiple sclerosis and rare disease community. The people I interact with in this small community, via support groups, BioNews (the parent company of this website), online forums, and social media platforms, are some of the most wonderful people I’ve ever known, but I wish we’d never met.

Harsh? Yeah, it is. I’m afraid there’s really no way to soften the blow. Put a slightly different way, I’m so happy to be a part of this community, but I wish none of us qualified for it. There’s no animosity intended. It’s just a somewhat painful contradiction, and I don’t like it at all. Then again, I don’t think I’m supposed to.

As another example, my family and friends go out of their way to accommodate my disability, yet they somehow don’t make me feel disabled (a kind of paradox in and of itself). I am inexpressibly grateful, but I wish they never had to do so because I wish I didn’t need any accommodations.

Along those lines, I didn’t plan on it, but I genuinely enjoy being retired at 47. I love being at home with my wife and young children (I should say that more), but I’m not happy that having a disease was what made it possible. I can be a bit of a handful at times, but I think they like having me around, even if they don’t like the reason I am.

Moving on, I have wheelchairs, ramps, ankle-foot orthoses, reachers, an intrathecal baclofen pump, and so on. I’m glad these tools exist. After all, they keep me involved in my own life and the lives of my loved ones. I wouldn’t want to consider their alternatives, but I wish I didn’t need any of them.

I’ve learned a great deal about MS since I was diagnosed (you could say it has my undivided attention), but I wish I’d never heard of it. I like my neurologists, but I wish we’d never met. The research they do is fascinating and fills me with hope, but I wish there were no need for them to do it and for me to have hope in it.

These are just a few examples of the multiple sclerosis paradox. I invite you to leave a comment detailing your own examples. Thank you for reading this column, but I wish there was no reason for you to ever need or want to.