When I was five years old, my family was pretty much on top of their game. My dad owned his own radio station, which had been a dream of his for quite some time. And it was doing really well. I still have memories of the county fair, and all the cool people that my dad brought in to do concerts. We lived in a little, tiny town but he still managed to book everyone from Garth Brooks to Meat Loaf. We were living in a beautiful Victorian home, something my mother had longed for. She loved that home and decorated it to excess every Christmas; we were even on the town’s Christmas tour. And to add a cherry to the top, Mom was pregnant with my little brother. We were middle-class Americans on top of the world, living the American dream.
Sometimes I think about what my life might have been like had it not changed so drastically, if I could have just lived out that life. But fate was getting ready to deal us a blow. My father got sick. He started having terrible migraines, numbness in his fingers, and he was having trouble controlling his right foot when he walked. He started getting tests done. But no one could tell us what was happening.
I don’t have a lot of memories from that period, but I remember a dark feeling prevailing in the house. Foreboding, I suppose. Even at five, I knew something was wrong with my beloved father. He who had taught me to swim, he who was teaching me to ride my bike, he who caught me every time I dove off of the couch giggling and flailing. Something was wrong with him. I could feel it in my gut.
Finally, after numerous trips to various doctors and many more tests, we were told that he had a disease–Multiple Sclerosis. Those words were too big for the mouth of a five-year old. I didn’t understand. Nor did I understand what it meant for my father or my family. My parents tried to keep the station going, but my father’s quickly-deteriorating and incurable condition made it impossible for him to keep up with his previous workload. Plus, he had a bigger problem. Multiple Sclerosis was raiding his body, but the piles of medical bills proved to be the undoing of our entire family. He had to sell his station. We had to sell our house. We moved away from our little town and our American dream.
We tried to start a new life in a different part of the state. By that time, Dad was on disability and couldn’t work. That left my mother to take care of our entire family on little education or formal skills. We bought another home. A trailer. Even that we ended up losing to our debts. We bounced around from town to town for a while, renting whatever we could afford.
I have more memories of this part of my life. Vivid. My father had changed. Not just his physical abilities but his entire demeanor. He was angry and prone to bouts of erratic temper. He was never violent toward any of us, but all the same I was terrified of him. We all were. Eventually, I think the strain of everything got to my mother. She demanded a divorce. My father moved in with his widowed mother. My mother, my brother, and I started sleeping in my grandfather’s travel trailer. It was the kind you could hitch up to the back of a truck; we had no running water, no power, and nowhere to call home.
It had all fallen apart so quickly. I turned ten the summer we lived in that tiny travel trailer. My father was only thirty-five years old. In five years, the hopes and dreams of my parents had been dashed to pieces and left so little in their wake.
I’ve been through a lot of different phases of my life since then. I’ve gone from terrified of my father, to proud and respectful of the man he has become despite everything. His temper has improved, he’s done a lot of work over the years to help others dealing with the same disease, and he has become a truly kind, gentle soul. Everyone in our small town knows and loves him. Dearly. Seeing his struggle has made me stronger and wiser than I probably would have been otherwise.
But I can’t help but wonder if our story should have played out differently. I can’t help but be sad that my brother never got to see the man that I got a glimpse of. No father, son camping trips to the woods or swimming lessons. I can’t help but be furious that I live in a country that has let this happen to families over and over again. I can’t help but struggle to understand why so many are calling for more funding cuts to programs that help people like my father. He has so little left as it is. So little dignity.
A few years ago, when I was home visiting from college, he pulled out a stack of papers. He calmly informed me that he had taken out a life insurance policy on himself. He apologized for not being able to provide my brother and I with the kind of life that he had set out to. He was sorry that we had been forced to make due with so little. There was so much pain in his eyes. So much remorse. I saw him as the man who prevailed in living a positive life, even in a wheel chair. He saw himself as a failure.
This story doesn’t have an actual ending yet. He is, thankfully, still with us. Sitting in his chair. Watching television. Everyday. But, I believe, that this story does have a moral. None of that “try hard and you will prevail” bullshit. He didn’t prevail; he survived. We subsisted. The moral is that we live in a country that doesn’t seem to give a damn about people like my father. Look it up, there are hundreds of stories like this one. Families ruined because someone got sick, and they couldn’t afford the healthcare. The drug industry, the insurers, the health care system, even supposed research-based non-profits are making billions off of the failing health of Americans. I need something to change. Families all over America need something to change. Now. Before another father looks to his death with open arms, hoping to finally provide his family with all of the things he couldn’t in life.