Book Update
You’ve been so very patient. I announced here, a long time ago, that I was writing a book and it was almost done. Obviously, I lied.
Given that this is a memoir, and given that I’ll only have one chance to tell this story, I’ve been rewriting and editing and tweaking. Finally, I am only a couple weeks away from being finished, at which time I will start looking for an agent or a publisher. That process will take months, but if I get no bites I will self-publish next year. I promise!
Preserving My Identity
I’ve been asked how it is that I maintain my identity – how it is I keep MS from defining who I am.
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.