I Feel Good

ALS is a cruel disease. It sounds trite when I say it, or write it. All disease is cruel. It's the level of cruelty that makes ALS stand out. It's the physical cruelty, where you see yourself diminish while your mind is intact and active. It's the financial cruelty, the costs of the disease and the losses from not earning an income. It's the emotional and mental cruelty, perhaps the worst cruelty of all, since it is mostly invisible, hidden from view behind a smiling face or a cheerful attitude.

This morning I woke up  feeling good, better than I have in several days. My arms felt good, I felt strong and capable, or at least as strong and capable as I could be. It's moments like this, mornings like this, which are, in their own way, the cruelest of all. This kind of a morning breeds hope. I actually feel like I could be getting better, like I could be the one person in a million for whom ALS recedes.

Then I begin to think about it, the odds of it. I begin to realize how dangerous hope really is, how much you can be let down if you anticipate. It's like holding a lollipop out for a child, then snatching it away at the last minute. It's cruel in the sense of unexpected loss. OK, I'm feeling good right now, but I won't tomorrow. For me, tomorrow's expectation is one of further decline.

ALS is like this. It's not a straight line decent, except for the unfortunate few. It's a roller-coaster ride, physical, financial, and emotional, with whipsaw turns that fling you about physically and psychologically. There are no second chances, no future plans. You don't think beyond what is right in front of you. And you avoid hope; it can destroy you.

Yet, as odd as it must sound, my emotions are in good shape today. The depression I've been battling for the last couple of days has lifted. Feeling better in my body definitely means feeling better in my mind. There is a direct link, mind and body. In a disease where I can look forward to so little, it makes a big difference to feel good today. I plan on enjoying it.