Not Normal

There are things about living with ALS that are different, the kinds of things that one would not find in a "normal" life, even a normal life for a paraplegic, which is what I have become with the progress of this disease. There are things that are striking, that will never leave my memory, like hearing the diagnosis for the first time, the prognosis and projections, having to tell my friends in what some of them now refer to as "the night of crying", having to tell my Mom and Ray and my children.

Since those moments of striking abnormal, moments that stand like a pure black marble obelisk on the gentle white plain that was once my life, a beacon of difficulty, I have worked hard to make my life as "normal" as possible. The transition from walking to wheelchair, I told myself, was something lots of people go through. They still live a full and normal life. The loss of my career was simply retirement, something everybody does. The DVT and Warfarin were not all that unusual; even my son-in-law, near 30 years younger than me, had these kinds of issue.

I've tried to create a normalized framework around my life, one that recognizes what is happening to me while still letting me live a regular kind of life, a full life. I've tried to live with the internal lie, like the rest of humankind, that death was far from me. I've tried to pretend that it was at bay, that I could live as long as I wanted.

Then, every once in a while something happens, another dark shaft arises, striking from the depths to cast a black shadow, burdening the landscape of my life. When my Case Manager arrived with my first wheelchair and walker in preparation for what was to come, when I went to my first ALS clinic; these kinds of events are not normal, even in the most generous of contexts.

Today I got a call from Home Care; it was the Palliative Care Nurse. This is not normal. No matter who you are, no matter what illness or affliction you have, no matter how young or old you are, you don't get a call from the palliative care nurse unless you are dying. This is the kind of thing that steals my normal, that shakes me and reminds me that I am not just living with ALS, I am also dying from it.

When she called, we talked for a moment. Then, in a rather desperate attempt to preserve what normal I could, I said "I don't think I need palliative care yet." It's rather a pathetic try by me to preserve my internal myth of immortality. She replied "I don't think you do either, but it's probably a good idea for us to meet and talk about things, to make some plans." We agreed that she would come to see me tomorrow afternoon.

I can do this; I will do this. It is a part of my process, the process of living with ALS. It is something which must be done, something that I must do. I wonder though. Is this where I stop living with ALS and start dying from it?