The Robot's Eye: A Huntington's Disease Story
Have you ever cried on the inside? I mean, have you ever felt the sheer pressure that a deep, sorrowful bawl from the inside that never shows itself in your face or posture can give?
I never realized how intense it could be until today. I don't know why it came today. Why today of all days? Yes, something incredibly significant happened today that prompted it but so many things have happened over the last 18 years and although they were seemingly equal or greater to today's landmark day, they never dredged up these kinds of feelings of sheer rage, contempt and pure unabashed sorrow.
Often we see movies about tragedies that are so terrible and how a group of people pinpoint a moment in history where that tragedy could have been averted. They then send back someone or a team of someones through a worm hole or in a time machine to change that pinpoint in history thus erasing the tragedy that would happen in the future. Today I discovered two pinpoints in history that could have changed our lives. Two life moments in my timeline that could have saved us all. A tragedy happened, or as our doctor so aptly put it, "A Shakespearean tragedy".
I know what you are thinking. You are thinking that when we found out that my wife was at risk for Huntington's Disease, or when she became symptomatic that this had to be the tragedy! No, it wasn't that. You see, people get sick, it happens, it's part of the human condition that in our imperfection sometimes people get sick and if they don't, well, they still grow old and die. For some, it's cancer, or it could be thousands upon thousands of other illnesses that will cause our suffering. Mind you, no one expects to get the monster of all diseases that is known as Huntington's Disease, but as bad as that is, that is not the tragedy.
I've often been known to say that HD ruined our lives, my entire family's lives, and today I came to a realization that I was so incredibly wrong.
I had a number of appointments today and one of them was with a geneticist from the IWK in Halifax that I would have at the Wolfville hospital but I had an hour and a half wait from my previous appointment with a physiotherapist. I left this appointment at physio feeling quite well with some of my pain having subsided due to the treatment I was given. But I knew I didn't want to waste fuel so I decided to wait in the parking lot of the hospital for my Telehealth appointment.
The appointment had to do with a blood sample taken from my wife 8 years previous. A blood sample that would have told us that my wife had HD or maybe not. I was thinking about that during this time and found it quite interesting that it would have been kept that long. A pang of bitterness coursed through me but I ignored it mostly and continued to think about this Telehealth thing. I had never experienced this before and was somewhat curious about how this would work and who I would be talking to.
My appointment time came and I went in to register and then shortly I was taken into what looked like a conference room. At the front of the room was a fairly large monitor with a camera on top of it. The very nice lady then showed me the controls and told me to wait for the call. I waited 8 minutes and then the camera whirled around to face me and a woman came on the screen. The camera was abrupt when it zeroed in on me like it had some kind of intelligence as it looked at me and then she began to ask me questions. She spoke very bad English and I had to spell out most of the answers to the questions. She never smiled, not once, and she didn't know if I was Sheila or Kevin, which took awhile to explain. This bothered me. I will admit I was annoyed. I could see on the screen her view of me. While my view of her was close up, her view of me was very small. I looked very small sitting at the end of a long table far from the camera. It was intimidating. And then she was gone.
I waited a few more minutes and a very nice young woman came on the screen. She was good natured and very easy to talk to, but I was bitter, as I said before, and she represented to me everything that went bad in my life even though she told me she had only been in this position for three years, I didn't care. She was the poison that made our lives a living hell.
My wife knew what Huntington's Disease was and she knew all the implications of having the disease. She saw her mother with it and she looked after her aunt who had HD until she died. My wife however, would never get tested because she hated anything to do with getting counselling and in order to have a test for HD in Nova Scotia you must endure counselling before hand so that you can give informed consent to the test that determines if you have inherited the defective gene that causes HD.
So you see, they had her blood, she had given it knowing that it was for "the test". But they had refused to test it because she would not submit to counselling and that seemingly small action caused a snowball to get bigger and bigger. Without that diagnosis we were doomed to have someone in our family with a disease that would drain us of anything we ever had and inflict damage unlike most people have ever seen and not be able to fight back. It would leave us homeless and prone to abuse from outsiders. The list goes on. It would also mean that she would suffer because she would go on to refuse any medical treatment, home care, as well as dental care etc. There would be nothing we could do about it except watch as she withered away and watch as our family fell apart. A once picture perfect family was ruined and none of us had the tools to even begin to deal with the onslaught of terror that would be Huntington's Disease.
And so I told this young woman what I thought of the policy and how that policy ruined us. Because you see, this meeting was to see about getting the blood tested, it wasn't a sure thing. I was still begging for help. I told her that basically it was like closing the barn door after the horse got away, but now I simply wanted a CAG count and I wanted to clear a hurdle for my children who are at risk, but I made sure that everything within me was empty. I poured it out as that robot's eye watched me looking so pathetic and small at the end of that table.
And I looked at her and told her that it was her fault. I told her that it was her fault that I could see nothing but darkness when my wife passes. I told her that it was her fault that this was even allowed to be. She said, "well no one has ever said this before!" I told her, "well now you can't say that." And as long as she says nothing about this policy, it is her fault and everyone who allows it.
I asked her, "Why is it that if she says I don't want a feeding tube that she has a right to not have the feeding tube, and yet if she doesn't want the counselling, then you can't find out what's wrong with you?"
And I cried...on the inside.
She simply lowered her head.
A geneticist came in at this point and told me that the blood will be tested and we will have those results within 3 months. Also, the results will be open to our children in the event they need them.
This policy needs to change.