It's difficult to separate myself from ALS. I know that my having this incurable, terminal disease shouldn't define me. But it kind of does. I know that I'm more than that, even if that's how I'm seen. But in my own head, I have a hard time separating the two: me, and ALS.
When I read "ALS sucks" or "Fuck ALS," it almost feels like an insult. This monster's been with me for over a decade; it's had a greater impact and is a bigger part of me than anything else. We've gotten quite cozy. Is this Stockholm syndrome?
Maybe it sounds like semantics, but it's too strong a feeling to dismiss. Who are you? What is it that makes you, you? How does the world see you and how do you see yourself?
Describe yourself to a stranger. What do you say? Is it what you do, what you like, or your physical appearance that matters? It's all of these things, of course. But if you're like me, one three-letter monster has come in and changed them all. Could someone walk you through London after the Battle of Britain, or New Orleans after Hurricane Katrina without mentioning those tragic events?
Of course not. Widespread bombing and flooding change everything. And that's how I feel. ALS has changed what I do, and therefore what I like; and most notably to an observer, it's irrevocably changed my appearance more than any mere disaster changed a city. And so, how can I say it's not a part of me?
I can't. It's inarguably the single biggest factor in who I am. People ask me if I like to write; some of them scrunch up their faces in disgust at the thought. I like to communicate; that's what it's about more than anything. But the truth is, I don't know if I like it. It's something I've found in my circumstances. If I could walk and run and hike and ski and golf and had a career and a family and could travel on vacations; if I could do what I wanted, how much time would I spend grinding out words in front of a screen? Not much.
If ALS is the cause of every moment of my day, the things I do and like and my physical appearance―even, perhaps most powerfully, the thoughts in my head―it is me. It's undeniable. I don't know who I am without ALS. I don't have a clue where I'd be.