Sunday, November 13, 2016


It was yesterday morning about 9:00 AM as I tooled around on my computer writing my November President's report for the Board of Directors when the phone rang.

Saturday morning phone calls get my attention for some reason, with all the weekday sales calls I get, so I answered this one. It was a call about a gentleman I know for over twenty years, who is lying in an ICU in a hospital, slowly dying. The reason I got the call is because I co-chair a guardianship committee in which this gentleman is one of our guardianees. His name is not important to you since you don't know him, but for this purpose, we will call him: ‘D'.

As I got to the hospital I found him like I never hoped to see him, unconscious, tubes down his throat and nose and all kinds of electronic monitors surrounding him, screens beeping out pulses and counts of all kinds, most of which I could not understand.

After the shock of seeing ‘D', I went to the nurse's station where his nurse sat chatting with some personnel like ‘D' was not there as a patient but a visitor. Carefree and non-challan she rested partly on a stool, her radiant blue eyes accentuating her dark hair, I wondered: How can you be so happy with ‘D' laying in a bed fighting a losing battle for his life. It seemed to me to be almost a criminal act, I wanted to shake her and tell her to get her ass in there where ‘D' is and do something to make it better!

We chatted and she answered all my questions, confirming where she could and being non-committal where she could. All the news was bad I thought, so I retreated back into the room and sat with ‘D'.

‘D' is a man with developmental disabilities about 75-years of age, his I.Q. is unknown and although he is verbal, he has a limited capacity and needs supervision since he is also blind. But with all that afflicts him, he is my hero, my kind of guy.  When you enter his presence, you get the sense of a man who could be someone's Jewish uncle, sarcastic, funny and yet loving.

I first met ‘D' when my daughter Ellen entered her first group home and he was a resident in it. He was a funny sweet man with a need to be busy. The story goes by the staff of the house that he could feel his shirt and know what color it was. His language that like that of an old stevedore was salty and hilarious at the same time.

One year we invited the home to my house for Christmas dinner, and when ‘D' arrived, he was carrying a huge stuffed dog, which he immediately placed on the floor next to the chair he was sitting in and said: "He was a bad dog, $#i+ all over the bus!" This, of course, mortified the staff who came but left me rolling on the floor.

When I visited him in his home, he would sit at a typewriter and type on used sheets of paper, rolling one in, typing on it and rolling it out to insert the next page. There was no ribbon on the typewriter but he was happy until one day the State inspectors came on their annual audit and made the staff remove the typewriter because it was an inappropriate use of the typewriter. If you ever read a State memo, you could tell they knew an inappropriate use of typewriters better than anyone.

And so ‘D' lays on his deathbed, struggling to stay alive, no family, a product of the "Willowbrook class" as they are designated, soon to be forgotten just as he was left at the door of Willowbrook.

In my mind I spoke to him in a way, asking where the years had gone to, remembering the first times I met him, around a dining room table singing Happy Birthday, giving him and his housemates cake and ice cream to celebrate. He knew my wife and I and hated my daughter because she was a little unhappy at first. "I hate that woman!" he would say. We laughed and loved him anyway, he was just a harmless man in a punitive body and mind.

There are many like ‘D' who have to fight disabilities, pain, and suffering all their lives, who have no real rewards except death in the end, because it is in the end that we will all be equal, without judgment, without discrimination, and without pain. But in my heart they will always be loved, they are innocent, tortured by what Mother Nature has done to them.


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