I'm Still Upset

I am still feeling the weight of the comment by the fireman Wednesday evening. "We are an emergency service." Here I am dying from one of the worst diseases known to mankind, a terminal illness virtually without exception. Even the dreaded Ebola virus has roughly a 30% survival rate. Only a few cancers kill the way ALS kills, but it is not an emergency.

Certainly the situation was not an emergency; I even said that when I called the non-emergency dispatch number. Yet here I am, dying slowly and certainly, with no treatment or cure, and it is not an emergency. It's not an emergency because it is a slow killer. It is not an emergency because there is nothing the medical community can do. It is not an emergency because it takes its toll over months and years, not hours and days.

If I had a terminal gunshot wound, it would be an emergency. If I was having a heart attack, it would be an emergency. If I was bleeding to death, it would be an emergency. Dying from ALS is not an emergency.

All I want to do is live as much as I can before I can live no more. All I wanted at that moment was help; help to get up to my apartment, help to feel like this slow and brutal death wasn't the only thing in my life, help to believe that I am more than ALS. The irritation and annoyance in his statement pummeled my spirit, battering me further into depression and helplessness.

His comment touched a very raw nerve. Saving my life is not an emergency. It's not an emergency because I am dying slowly, one little piece at a time. It's not an emergency because there is nothing to be done. I'm doing my best to understand that he did not intentionally touch that nerve, that once he was able to digest what I was telling him he did his best, that I may be overly sensitive in this area. I am trying really hard to deal with the fact that it's not all about me. Unfortunately I am failing.

I get up each morning knowing that I am less than I was yesterday. I go through my day wondering what part of me will fail next. At the end of each day, I perpetually want to give it all up. It takes very little to hit a nerve with me these days. They all still work. It's finding a working motor neuron that presents the real challenge. And there isn't a single fucking thing I can do about that.