When I was about 10 years old my father was diagnosed with a degenerative neurological disease commonly known as Lou Gehrig’s Disease, but introduced to me as ALS.
Amyotrophic lateral sclerosis. It took me until the eighth grade when I did a health project on terminal illnesses, about 3 years later, to be able to remember the full name. That was also the first point at which I “accepted” that his illness was indeed terminal.
I remember standing in our partially finished upstairs laundry/bathroom with my father who was sitting down and my mother beside him. His pair of brown leather work boots were in front of him. Out of his left boot protruded a long white plastic mold of his calf. The plastic calf mold was a leg support that would help him continue to walk as his left leg slowly weakened. Eventually his right boot would need one as well.
My mom stood in front of me and very calmly explained the disease. They had already told Lila, my older sister, so I had no idea how I was supposed to react. I knew that I should be sad or that this was traumatic news, but did not understand. I went into my room, shut the door, buried my face in my navy blue Lands End comforter with my initials embroidered in it and forced myself to cry. I only cried for a few moments.
I did not believe he was going to die for the first couple of years. Rather quickly, I remember him going from racing me from the front door to the car or the grocery store to the car to walking slowly with a cane. He would recover, I convinced myself every time I noticed his mortality. Every time I had to help him up from his chair, every time he tired as we walked from the store to the car I slowly realized he would die. When I first began to help him up from chairs I was pretty small, probably around 100 lbs. I would have to grab onto one of his arms with both of mine and use my entire body to leverage him out of his chair. I found it amusing and giggled until he wasn’t able to get out of chairs at all.
He was no longer the invincible parent who would be there to see me in graduate high school or attend college, or to meet my children. I could not accept it though. He could not die.
As a naive and increasingly desperate ten year-old I fantasized about how to cure his disease. I dreamed of becoming a world renown scientist working in a lab with a white lab coat, on the cover of Science, a magazine that appeared on our table frequently. I would become the first scientist to discover a cure for ALS.
The fantasy that consumed most of my thought and energy was flawless. Equipped with the logic of a ten year-old I devised a scheme that would not need scientists of lab coats to cure him. I reasoned that if the disease weakened the muscles then all that I needed to do was strengthen his. After working up the courage to ask my mom why dad didn’t just work out, I learned that exercising actually weakens the muscles and accelerates the progression of ALS. Determined not to be thwarted I decided I would have to give him my muscles instead. Whether or not I actually ended up working out or not is unclear, but I certainly entertained the idea for years.
During the first few years of the disease I developed a deep infatuation with developing a way to delay or permanently avoid the inevitable.
Despite my life saving fantasies my father’s case was pretty typical. No one found a cure for the disease, I was unable to give him my muscles and he died in December of 2005 about 5 years after diagnosis.