To a large extent, I don't.
Earlier in my disease progression, MS was a minor player in my life. It was an afterthought, an asterisk, a postscript. It rendered my identity a bit more interesting than it otherwise would've been, but that was all.
As the disease began to have a profound effect on my daily activities such as walking and using my hands, it became more and more difficult to keep MS from shaping my personal identity. So I didn't fight it. I embraced it.
I am a husband with MS, a friend with MS, a brother and a father with MS. I am a blogger with MS. Note that MS doesn't supplant my identity; it enriches it. Don't get me wrong. I'm not saying that having MS is a good thing. It absolutely sucks. But embracing the fact that I have MS doesn't.
Granted, for some people with MS it may be important to keep the disease out of your public identity, often for reasons having to do with career preservation. I get that. The only advice I have for you, if you need any, is this. When MS needs a chunk of your time – whether for doctors’ appointments or naps – give it what it demands, then return to your other interests without apology or guilt. I did that for quite a few years, and I was largely successful.
I'm not only a guy with MS. For brief periods of time I’m able to put the disease out of my mind. The best distractions are quality television and movies, books, conversations, writing, or any task requiring concentration (even though my ability to concentrate is diminished).
How do I identify myself in my dreams? It's a mishmash of walking Mitch and wheelchair Mitch, often switching back and forth indiscriminately.
I'd like to think that people I'm interacting with, at least for brief periods of time, can also forget about the disease. But to imagine that it's ever far removed from who I am would be an act of denial.
Please consider the notion that accepting these changes to your identity does not represent failure or defeat. It may simply be the best way to deal with a new reality.
I'm now that guy with MS, and being identified as such is not a bad thing. It's just a thing.
Posts
Well said Mitch. I do believe that if one doesn't let MS define you, others will see you and what is great about you and not see the MS. -Kathy
ReplyDeleteKathy, you are spot on. We can accept MS as part of who we are, but it can't be all that we are.
DeleteThoughtful and insightful as ever, Mitch. When I tell people about our friendship (which I do often), I always mention your MS. Not for the sympathy it produces, but as a backdrop to how remarkable you are as a human being. On the other hand, when we are deep in conversation, or chatting as we perambulate to our eatery of choice, it isn’t at the forefront at all.
ReplyDeleteStuart, yours are most reassuring words. I'm comfortable with the fact that when my name comes up in conversation it would be unrealistic not to mention the elephant in the room. I'm glad to know that when we're together, the elephant fades into the background.
DeleteI was thinking about this the other day when I had a business meeting with a stranger. I arrived early, wobbled into the restaurant with my cane and installed myself in a booth before he arrived. The meeting went well. Then I could see his surprise at my halting, awkward exit from the booth and walk to the door. It was only then that I admitted to myself that I had been early on purpose.
ReplyDeleteBut after reading this post, it occurs to me that it's far more important that I know myself to be a capable human being, than that others do. We don't just steer that conversation, we direct it by how we are in life.
Daphne, great observation. Thanks for sharing. You are correct in that we can steer the conversation, but I would only caution that it's okay for us to arrive early to the restaurant once in a while, simply because we don't want to deal with the issue that day. It's just not a good way to live all the time. Right?
DeleteAgain, remarkable you sharing your story - thanks!
ReplyDeleteMrs. Reed, if one of the reasons I share my story is so that I get feedback like this from people I love and admire, does that make me a bad person?
DeleteI can't seem to not be the ----- with MS, especially as my wheelchair won't go away - well, it does in my dreams. I also escape it by writing fiction, but that is becoming a problem now. Plus I now have blood cancer to fight. But reading your post does uplift me.
ReplyDeleteRoland, I'm so sorry to hear about your health problems, but I'm happy I provide some temporary distraction.
DeleteMitch, you're not only a guy with MS, you're a heckuva guy with MS. Keep rolling, brother…
ReplyDeleteMarc, coming from one heck of a guy with MS, this is a high compliment.
DeleteYou nailed it, Mitch!
ReplyDelete