It’s a lot to take in. Lots of sadness and shed tears, coupled with an unwillingness to face it all, but somehow life goes on, and so do new experiences that come with it.
I have known about my disease for one and a half months now. At first I fell into a deep hole. I could only think about my death and how much I didn’t want to die. I wanted to watch Ward and Floor grow up. That is in essence of what I still want.
It is my goal in life, nothing more, nothing less. But the big questions are of course: how, and how long can I endure? It is a constant battle. I may want to live, but it may be closer to vegetation than to living. Do I want that? I even thought: “If I want to kill myself, I had better do it now, because I may not be able to do it later.” I’d prefer to do it in the lease car, that would be less expensive. Then again, I want to live and cannot imagine me killing myself. I have already thought and asked about euthanasia, though I cannot imagine anyone wanting to be injected and passing away with a doctor present. I used to think quite rationally about it, but nowadays I can’t stand the thought. I am also worried about living at home. Would Hein be able to bear it? Would my friends? Or would I end up abandoned and alone in a nursing home? Could I bear that? The thought of my funeral also crossed my mind. In short: a deeply depressing period filled with numerous decisions about alterations to our home and the selection of caretakers. I decided to focus on that. It almost felt like a day job: writing letters, making appointments, drafting up lists, et cetera.
The turning point was really a website I was sent by friends. The site belonged to a Belgian ALS-patient with a very optimistic story. He was not doing well, but he has a goal in life and meditates on it. It invigorated me. I sent the man an email, to which he responded immediately. Through him I discovered ALS Digest, essentially introducing me to an “Internet ALS network”. For now I just observe without participating. In Digest I read an article about a man who, twelve years ago, thought he wouldn’t live to see his son’s next birthday, but had now seen his son graduate from high school. It gave me hope, even the articles about ALS patients who were not doing as well. I admired the way they bravely adapted to new conditions.
Another turning point were my visualisation exercises with Eveline from the LeShan Stichting (LeShan Foundation). Eveline was a person who had crossed my path numerous times, so I decided to call her. It was an important step. Because of her I have started doing visualisation exercises and reading books about meditation and therapies. I also have a new GP.
Steven Shackel is the last topic I want to address. He is an Australian who started using lots of antioxidants, improving his faculties. He has used them for over 15 months. His article in ALS Digest was submitted on the 18th of May, the day I received my diagnosis. I would never have known about Digest without Roland Remmerie, the aforementioned Belgian gentleman. I sent Steven an email and received an email back. Whatever news it brings me, it gives me hope.