Safety Railing

The toughest thing about dealing with ALS, at least for me, is the emotional stuff; the uncertainty, fear, doubt, anger, frustration. The worst thing of all is the continuing feeling I have of being alone. Take these emotions, mix in a fair degree of exhaustion and the daily physical challenges of life, and you have a perfect recipe for serious depression, the black hole kind of depression where you cannot, no matter how you try, see a way out. That black hole, that deep, dark place that weighs on you heavier than the earth on Atlas, that is the hole that Robin Williams gazed into.

I gaze into that hole on a regular basis. It takes very little to tip me over that edge. I fear so much. I fear the loss of my abilities, the loss of my community, the loss of my family, the loss of my life. Oddly enough, dying is probably the lowest thing on my list of fears; it's still there, it's just nowhere near the fear I have that I might be, or am, driving my friends away as I deal with this illness. It would be much easier to be dead than to face a life alone, lonely and afraid. It would be much easier to be dead than to live with a lively mind trapped in a body that simply cannot function.

Of course all of these fears, all of these things that cause me emotional pain, can be refuted, argued away, explained off. My friends say they will stick by me and it is true that I have what many would consider a vibrant social life. My children visit me and Kate lives here in Calgary now, plus I make the trek to the coast as often as I can to see them, along with Mom and Ray and other family. And look at Steven Hawking, the most brilliant mind alive today trapped in a body riven with ALS, fully supported by machines and technology.

While the fears can be explained away, argued away, it doesn't make them go away. In fact to argue with me or to dismiss them simply makes me feel worse. Now not only am I afraid, I am being foolish too. Rationalizations won't help either; I spent 32 years married to a woman who rationalized away every desire, thought, feeling or need I ever had. I will have that no more. In fact the only way to deal with my fears is to move forward, to keep living, to see if it will be different tomorrow.

That's why, when I look at the pills on my dresser, knowing what will happen if I take them all at once, I consistently say to myself "not today". The black hole that I stand next to has a railing, a railing I cling to regularly, a railing that keeps me from stepping into the abyss. I don't really know what that railing is, nor how long it will hold me. It's there. That's enough for today.