Of My Father explores my relationship with my father, and his relationship with my mother and the house they live in. My father has Kennedy’s Disease which is a debilitating neurodegenerative disorder resulting in muscle cramps and progressive weakness due to the degeneration of neurons in his spinal cord. It is not very well known, and it is not a disease that is expected to shorten your life. It is commonly developed in mid-adulthood, which is the case with my father. He became aware of it in his early 40s. He has an advanced case of Kennedy’s Disease at 58 years old, and his mobility, even in our home, is very restricted. This means he relies on others and especially on my mother and brother who live with him in Kingston. This series shows his independence, resilience and character through images and text.
Images are titled by my father.
New development in the last number of months. I need help getting into bed. Not always but most times now. My legs have been gradually weakening in the time dedicated in my chair over the past few years. One more step in a progression of steps. I sometimes wonder when the next step will present itself. I have to keep moving.
Neither of us knew what was ahead of us – aside from lots of good fun together. Dreams. I was diagnosed 15 years later with Kennedy’s disease. Damn.
Clearly the chair is more damaging to the house than a walker. I have been using my chair in the house for about 3 years and I know my first year in the house was practice, when much of this happened. I know the marks can be expected but it really is embarrassing when I see them. I wish they would go away, I don’t need the reminders.