Empty Machines

When I was twelve I had the perfect life. My family was the perfect nuclear family, I had two awesome dogs, I was spoiled beyond belief (even though I didn't know it), and my dad was a hotshot lawyer who successfully settled every case he took on, except one. Christmas, as always was very fun, filled with family, food, presents, and, for the adults, wine or beer. That Christmas my dad drank one glass of wine, and his speech was slurring. After our party all three of my dad's siblings called because they were worried about him. My Aunt Gail was a nurse, so her concern was the most worrying.

My dad went through a battery of tests, starting with blood tests, all of which revealed nothing. Nervous tests showed that his reactions were poor, his grip was weak for a man his size and age. In mid January the doctors told us my father had one of two things: multiple sclerosis (MS), or amyotrophic lateral sclerosis (ALS aka Lou Gehrig's Disease). I recall my dad saying, "You know it's bad when you're wishing you have MS." My parents waited until after my birthday to tell us that my dad had ALS. He would slowly 'work himself to death' as his motor neurons worked in over drive. His muscles would stop working, starting with the smaller muscles to the bigger skeletal muscles. But my dad had Bulbar form ALS, which basically meant top-down, so while other people lose the ability to walk first, my dad lost the ability to talk and swallow.

Our family, all of us, set out on a hunt for a cure, or treatment. But ALS is a disease with no known cause and no known cure. My dad enrolled in a drug trial for a potential treatment drug called brain-derived neurotrophic factor (BDNF). The test was a double blind, we would only find out later that he had been on the real drug. The one thing that holds the most promise for ALS treatment and cure is stem cells.

As he wasted away I was striven to find something to do for him. Alas, there was nothing, so at thirteen I gave my dad two shots a day for a year (until I literally hit a nerve and never gave him a shot again). I was furious with science, medicine, and all of the people who hadn't found a cure for this stupid disease. It had a name. Amyotrophic Lateral Sclerosis. I could say the name over and over and over and over again, but I never got any more comfort because of it. Yes, I knew what it was, but there was nothing I could do about it. This disease would see my dad gone in three to five years. As he wasted away I saw the once Navy SEAL, sniper, marathon runner, all conference football player, dad, trapped in a body that was no longer his. He had the same thoughts, wants, needs, but he could no longer stand, talk, smile, he lost control of his emotions, and at the end, the only thing I could see was a ghost in a machine. A machine that didn't work.

After so long my dad had to be put in hospice. I spent Valentine's day 2003 in a sterile hospice, holding my dad's hand listening to Harry Potter with him as we stared out the window at Lake Michigan. Science had failed us, but maybe Harry Potter would come and make him better, or at least make us both forget he was trapped, dying, and almost gone. Then, March 4th, the day before his 46th birthday (28 minutes before his birthday) he died. My dad wanted so badly to be on a ventilator, to be around for my life, my sister's life, my mom, see us graduate, go to college, grow up, but we all agreed it would be better, easier not to. None of us wanted to hear his howls of pain, the look in his eyes when we didn't know what he wanted, we didn't want his mind to be trapped in his body while it wasted away.

When he died, call me crazy, the room was lighter. Our neighbor drove us to the hospital through the worst snow storm we had seen that year. Lights blinked on an off around us, again call me crazy, but this happened all the time when my family was together, and it still happens to me today. I didn't know what to think as I walked into the room and saw my dad laying on the hospital bed, still, silent, hollow. I held his hand until it went cold from the inside out. But I had to let go, what made my dad my dad was no longer there. I walked to the window and stared out, the snow swirled around, some kids sledded down the North Point Water Tower hill, and I was livid.

Science had failed me. There was no more finding a cure. Why did this happen to my dad? Was it written in his life, predetermined? Was it predetermined that I would lose both my parents before the age of 23. I think, as Pinker said, one of my greatest fears was that everything about my parents lives and deaths was predetermined, and I had no way to change it. Who can say? Science let my mom live until she was 54, and let my dad die when he was 46.

Both my parents died even though they had been diagnosed, the disease named, but in the end, death took them, and their bodies were left empty shells. I find no comfort in saying my dad died from Amyotrophic Lateral Sclerosis - Bulbar Form and my mom died of multiple organ failure brought about by radiation poisoning sustained when she was treated for lymphoma when she was twenty. Call me a noble savage for wanting them both to die. I would rather see the machine empty than suffering to live.