Many of you won't like the title of this post, but it's been squirming around in my head for some time now, and I really feel the need to let it out. I mean, here I am, diagnosed with a fatal illness, and I'm still walking. I'm still skiing. Still doing many of the things I've been doing all my life. But in the eyes of the medical community anyway, I'm a dead man walking. What an incredibly surreal feeling, almost like I just dreamt the whole ALS thing. Don't I wish.
What's really going on here is part of a somewhat unspoken debate going on within the ALS community. Should a person with ALS go around telling everyone that they're dying? Many say no. That because doctors have no way of telling us how long we have, we should assume we're going to live a long time. In some rare instances, people have lived up to 30 years with the disease. It's the 'your attitude is your altitude' way of dealing with things, wherein if you assume you are going to die, your body will find a way to make it happen. And if you keep a positive outlook, you'll live longer. And we do indeed see examples of this happening all the time, for most every disease out there.
On the other hand there's the medical data, which will invariably tell you that ALS is fatal, with death occurring 2 to 5 years from diagnosis on average. One article I read said that many people die within a year or two. And of course the tone with which such pieces are written is clear: sorry to say son, but you gonna die. So you tell me, how in the hell am I supposed to react to that? I mean, all the positive attitude in the world isn't going to save someone from getting rundown by a speeding bus is it? Some people have said, after reading this journal, that I seem to have a good outlook, that I seem to be dealing with things pretty well. On any given day, I'd like to believe that's the case. But I promised you brutal honesty, so I'm sorry to report that on some days I'm pretty much one wave short of a shipwreck. I'm terrified. I'm sad and depressed. I have serious doubts about having the strength to deal with it all. I feel like I'm about to go mad and I should just give up, give in to reality, lie down on my deathbed and wait for the inevitable.
But that's the irony here isn't it? In our dialogue about fatal disease, in our struggle between hope and acceptance, we seem to so often forget that death is inevitable. For all of us. It's simply a matter of how and when. So it's really a bit naive of us to talk about dying in such exclusionary terms isn't it? So and so has a fatal illness. The rest of us are fine. I mean, in reality, aren't we all 'dead men walking'? I see the pity in some people's eyes and I want to tell them to keep it for themselves. I don't mean that in a negative way. But having to stare down my mortality has caused me to notice how little others seem to acknowledge their own.
I of course mean no disrespect to those that cannot currently or have never be able to actually walk. It's just a metaphor for my situation that I've been brooding over for several months. One that usually gets stuck in my head and gets me down. On those bad days, and every day starts out seeming like it might be, when I look in the mirror and think "You're dying Scott", I hear this little voice in my head say "But not today." And I feel a little better. I just hope I'm not tempting fate by saying that!
Wow. Dear reader, I want to thank you for listening. Writing about this has really lifted a weight off of my shoulders. Today is a good day. Today I feel strong. Today I will NOT let my illness get me down. I will NOT give up on my life. I will fight with everything I have, and I will go to sleep happy and content. Dreaming of the arrival of my little girl. Of my beautiful wife. Of whatever time I am granted with all of you. I will live my life hoping for the best, even while preparing for the worst. There will likely be a day when I am no longer walking. And inevitably a day that I will die. But not today.