Ask Me How I Am Feeling, Not How I Am Doing.

I must be tough for people to greet at times. I know it's tough on my end. They come up and say things like "How are you doing?' or "How's it going?". I know they are simply expressing the banal triviality that is feigned interest, at least some of them. There are many who are truly interested, yet even they must fear the response. I know that they are just looking for me to say something positive, like "Doin' well!" for "Fine."

Asking me how I am doing is dangerous. You might actually get a true answer. My condition has deteriorated. Last week I could lift my left leg just enough to pull myself into the passenger seat of my truck. This week I can't. Yesterday I noticed that standing up was just a bit more difficult that a few days ago. Last month I could turn over in bed without assistance. Now I need the hand-rail which I have had installed on my bed to help me complete the turn.

I could go on. There are a myriad number of small losses that I could describe. There a dozens of little things that I notice which you don't see. I feel the thickness in my throat, I hear the challenge of getting some of my words enunciated. I sense the loss of strength in my diaphragm as my voice grows softer when reaching the end of a lengthy sentence.

Every greeting that comes from me could be one of sadness, one of loss, one of diminishment. Beware, for when you ask me how I am doing, I might just tell you! The answer will always be that I am worse than the last time you saw me.

My sense of social grace suggests that most people really don't want to hear these things. What they want to hear is absolution, relieving them from the responsibility of hearing more about my suffering. I know this is true because I would do the same; no, I do the same. I am just like everyone else. I have enough of a burden to bear. I don't want to carry more.

Politeness demands "liteness". It's just the way it is. For me, the real answer is now, and will ever be until my death, the same. I am a little bit worse than yesterday and a little bit better than tomorrow. Each and every day is a step down the slope of ALS.

I don't want to live a life where I spread this gloom. I can carry my own burden although some days it is so much that I must unload some of it. I want people around me; they won't want to be around me if I am a constant dark, brooding cloud ready to hail down. So I smile and say "Fine".

Do me a favour. Next time you see me, don't ask how I am doing. Instead, ask how I am feeling. Most days I feel pretty good. That is something I can happily share, at least most times. Because most times I feel pretty good; I'm just not doing all that well.