Today I was at a group meeting with the therapy group I’ve been attending every other week (excluding the odd misses, exam periods and the six weeks I spent in New York City last spring) this past year and last couple of months. I was there to tell the others about the death of my father.
The participants are all young people with terminally ill parents. There are other groups for young people with dead parents. We were six today, which I think is the highest number I have ever counted there. Myself, a girl who has been there since august, one I had met once and three I had never met before. I will not detail the stories of the other participants, even though they would never find out if I did.
All meetings begin with the psychologist asking if someone would like to begin. I have never liked beginning, but am not sure exactly why. But I would likely reject explanations such as “I want to make room for the others” on grounds of beeing poorly disguised vanity.
Today one of the new ones started. She talked for about half an hour while the psychologist asked questions. Then one of the other new ones took over. Then the last of the new ones. Then the psychologist looked me in the eyes for a while, and I asked her if I should say something about what happened.
She thought that this would be a good idea.
I started by addressing the ones I hadn’t met before. I told them that my father had suffered from ALS for 10 years, a progressive, incurable illness which causes degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement, which in the end leads to death due to different complications (thanks to Wikipedia for much of that description – in reality I said something like that, but less concise). He was in a wheel chair from 2004, from the summer of 2009 (I think) in a motorized one.
During the years, he gradually lost the use of his limbs, the ability to speak (it disappeared entirely 3-4 years ago), and there were gradually more and more things he couldn’t eat. Tomatoes and boiled potatoes for year of getting them in the wrong throat and choke to death, steaks because he could no longer chew them.
The last of our court dishes (as he called them), before soup was the only choice, was mashed potatoes with an italian style ragù. If you ask me, I got pretty good at making that dish. We stopped eating the soup because it got cold before he could finish it. I made it through three and a half bowls of soup in the time it would take him to eat one. In the beginning I left some for him in the cooking pot, should he want it. We both knew he was not going to want it. In the end, I ate it all in order for time to pass. I slowed my eating pace greatly in the hope that he would feel he was less slow. After soup, he turned to eating only mashed fruit and yoghurt with sesame seeds and lin seeds in it (after which he got in touch with a dietist and turned to protein drinks, but I’ll tell you more about that later).
The extinction of motor neurons in his body was an unusually slow paced process. As far as I have been able to read, only 10% of all persons with ALS (PALS) live longer than 10 years after they are hit. The mean age of years people live with the disease (what is the term for this?) is around 3-4 years. You need to keep in mind, though, that the range is big, and that these are only statistics. It only says that he lived longer than the norm, not why.
He felt the first symptoms around the year 2000, but did not get properly diagnosed until novomber 2002, because it is a difficult diagnosis to give. I have been told the problem to be that there isn’t one single test you can take which will show if you have the disease or not, and that this and the lack of a cure has to do with the amount of money invested in research, which has to do with the number of people who have the disease, and the likelyhood of the medicinal industry to produce an effective drug in the next few years and thereby make greater revenue.
I am, or was, the only family, he had. Then I said:
Let me tell you about his death. He died about 3½ weeks ago, or no: 4 weeks ago. He was put in hospital the january 25th and died febuary 9th, two weeks later. He died in the early hours of a wednesday and had at the time been unconscious for a few days.
I talked to him anyway, as if he could hear me. I didn’t know for shure that he couldn’t, but it seems unlikely that he could. My girlfriend and I were told tuesday afternoon by a neurologist, that most of his higher brained functioning had “turned off”.
I viewed his diagnosis as very convincing. He pointed the beam of a small torch into my father’s eyes to see if there was any reaction. From my memory of a conversation I once had with my house doctor I have an idea that many doctors draw small check marks with the torch in the eyes of the patient, when they beam light in there to check the reactions of the different visible parts of the eye.
The neurologist grabbed my father’s head and turned it from side to side in quick jerks. I think he wanted to see if the eyes reacted in any way. My father’s eyes were open at that time. He also shouted my father’s name at him and knocked on his chest to wake him up (I’d like to know if has kids and wakes them up like that. I have that sentence fragment: I’d like to know if he from my dad. I visualise him using it to say something about some loony on TV) .
Then the neurologist told us, in a quiet, calm voice, that there probably was no activity in my father’s higher brain functioning. That everything above the brain stem has been cut off. I didn’t want to let it influence the conversation, I had had with my father. I wanted to continue our dialogue.
I was with him every day the two weeks he was there, for a minimum of 3 and usually 5 hours. Some days more. My girlfriend was there every day apart from two. We slept there the last three nights, or: the second night she went home because she couldn’t sleep, which was fine with me, I slept surprisingly well. I woke a couple of times during both nights that I slept there, and probably didn’t sleep more than 6 hours per day, spread over different periods, which is quite a bit below my average.
The meeting wasn’t actually today, but that was how far I made it before I got too tired to continue and went to bed. A couple of days later, I translated it into English and made the above image and posted.
Then I decided to take a break from blogging, because my exams are coming up. Developmental psychology. Most of what I have read has been a drag, but I blame it on the book, which seems to be written for people younger than me. But there is another one, and some articles as well, which I prefer. I just really wish I could go live on a mountaintop and write my own stuff, but I need to do this. So bye for now.