How quickly we acclimate

I have told you about my quadriplegic brother and how he came to be so. The very night he was lying in the emergency room, my Grandmother and step-grandfather were the first to arrive at the hospital. Now, we are talking about a completely different generation here; but one of the very first things my Grandmother said to me, as it was very clear I had been crying, was, “what kind of mascara do you use – it doesn’t seem to run”.  Funny the things that stick with you. I was flabbergasted.

Now, truth be known, I was never fond of my Grandmother or my step grandfather.  First, we had to call them by their first names. Phyl and Al. You see she married a guy 25 years younger than herself, and they were married until she passed a few years back. So, I’ll give her that – they were married over 40 years, and that was a pretty ballsy thing to do back in her day. And she wasn’t no feminist. But Al, my step grandfather’s comment on the very same night was even worse. He looked at me and said without any expression other than moving his thin lips, “it would have been better had he died”.
I suppose older people were more accustomed to death and illnesses.  It didn’t make much difference that this was a young man, their grandchild even.  As for me, for the first few weeks, I would lie in my own bed and try not to move a muscle. I would try to see what it must feel like to be my brother. Then I would cry myself to sleep.

Skip ahead a couple of years. I’m in my office – I was a television commercial producer at the time – and I am on the phone with one of Phillips Doctors.  The conversation goes like this:
Me – “Well, he would be a lot easier to pick up if he didn’t have his lower legs – so where would you be thinking about removing from?”.  A colleague passes my open door, and I thought that he continued walking by.  Still on the phone; Me “well I really don’t see what the point of cutting his feet off alone are, I mean the atrophy has extended to his calves and shins so wouldn’t you have to do a second operation at some point?”

It really struck me that I had become accustomed to just about any kind of conversation and/or medical situation when the colleague that I thought had passed my office, walked into my office and asked me if what he had just heard, was, actually – what he had heard?

As it turns out, Phillip nixed any decision to amputate – and of course it was his call. When I thought about it, I understood that he still wanted to appear and feel whole. And, it wasn’t that I was being callous. The Dr. did call me to discuss this – I did not initiate it.

My point is that when you have a severely handicapped person in your family, it is not just their world that changes; it is their family, their friends and a veritable schmorgasboard of professional health care people who are all making decisions about how to better accommodate the afflicted one.
A couple of years later, Phillip got a Hoyer lift, which helped enormously. Up until that point he had to be carried or lifted any and everywhere. The milestones of getting his first electric chair, hand cuff, air mattress – so many apparatus/apparati?.  We figured a way to let him smoke, even though he only had one lung working.  He chose to live alone for the last two years of his life.  I was astonished that he had the right to demand this. How could someone who could do nothing live alone? Up until then our Mother had devoted her life to his care. But as it turns out, it was completely legal, and he had the services of 8 hours a day of out care.  Those were terrible years. How could you not worry?

The day he passed, his morning home care worker called us, and when we arrived we saw him on his bed, head turned to the side, with a cigarette in his mouth. It seemed perfect somehow.
Phillip, his non and handicapped friends, and cigarettes is another story altogether.