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Updated: Aug 14
Day +851 EDSS 3.0 (down from 4.5 pre-HSCT)
There is a moment in time that came back to me recently and it has been repeating itself in my head. I don't know why it had to be this moment that came back. I would have preferred a moment with my children that I had forgotten, but this is the one that returned and it's not leaving me.
As a kid I would forget something and say "it flew out of my head". That happens A LOT as an adult with MS, but first, let me explain what flew back into my head.
The back story: In 2017, my sisters and I flew to Atlanta to attend a portion of the American Society of Hematology (ASH) conference, where thousands of hema/oncs from a hundred countries can meet and share the latest research. At that year's conference, the doctors from Clinica Ruiz hosted a panel discussion for potential HSCT patients. My sisters and I were there to meet HSCT for MS warriors and get the low-down on their lives post transplant. As you now know, I also decided that day that Clinica Ruiz was the right choice for me.
After the Q&A, warriors and future warriors congregated in a little lounge area. There, I met a woman who chatted with me about her sister, who had a very high EDSS and was wheelchair bound. And this is what sticks in my memory: she looked down at my ankle boots, which had a medium heel to it, maybe 2 inches (it was winter in Atlanta-- I had left New England thinking I'd be fine without snow boots in Atlanta in December because, The South). Anyway, she looks at my boots and says "You'll be fine. If you can wear those then you don't have anything to worry about."
I was speechless. Did I just hear her right? Was I just MShamed?!
I quickly brushed it off because 1) She's not an MSer and 2) an MSer wouldn't make that comment. But then it occurred to me that 3) she's not an MSer and 4) MSers wouldn't make that comment, but a non MSer did, and non-MSers are people, too.
Here I am, 978 days later, and it still stings. My story isn't original, unfortunately. Just google "things you don't say to someone with chronic illness" and you'll read the stories. "But you look good" or "at least you're not [fill in disability here]". These, of course, are well-meaning comfort phrases of which I have zero animus (please, don't ask someone to stop complimenting you in efforts to make you feel better, that should never stop).
But it begs the question: is being a black card member of this MS club not enough that now I have some kind of ability guilt?
If you're reading this blog as part of your HSCT research, you've likely already at a point in your MS life where you've experienced a bit of ability guilt (was it a doctor? A friend? Yourself? All of the above?)
Let's talk this out and maybe get back into a healthier perspective.
If you're reading this blog for your HSCT research, it means you've come to a point where this disease is affecting your ability to some degree that is unacceptable to you. To you. Listen, this disease sucks no matter the EDSS or the number of lesions or if it's a walker or ankle boots. Don't listen to anyone who says you're not sick enough to justify what you're doing.
I don't know what to tell you to do when someone tells you "you're lucky you don't have..." or "at least you can..." but if someone tells me "but you look so good!" I can say "no buts, please".
I think the reason this memory came back to me is because of momentary bouts of guilt that I still suffer through. Yes, I can walk without a mobility aid 330 days a year, but I have daytime blackouts. Fatigue. Memory loss. My brain is shrinking from this disease and my medication has a side effect of cancer, but somehow I think it's not fair I can walk in a pair of cute little boots? I go back and read that last thing and I can't believe I even had that thought.
MSers, I know you know I know you know. But it sounds like we need to have a club meeting. Let's add ability guilt and MShaming to the agenda.
And let's help out our friends and family who aren't sure what to say to us. Like, while we're taking so long trying to find the word to finish a sentence we don't even remember starting, they could use that time to think of something witty to lighten the moment. We're tough, we can take mockery made into puns. We may actually use those at our club meetings.