The Financial Cost of ALS

by Rachel Doboga

My mother taught me it’s not polite to talk about money, politics, and religion outside close friends and the nuclear family, but as it’s ALS Awareness Month I want to make clear the monetary cost of the monster inside me.

ALS is often called “the bankruptcy disease,” and with good reason. The finances behind maintaining a decent quality of life are devastating at $250,000 a year. I have survived 8 years next month. Do the math. That’s $2 million.

This is where Medicaid and Medicare step in. I also believe I could not have lived this long without three very lucky factors.

First, I bought into private long-term disability insurance at age 24. This was through my first teaching job right out of grad school. One of my colleagues thought I was wasting my money and let me know. “You could go to the movies with that money!” However, my parents drilled into me “Better safe than sorry!” so my husband Evan and I let Hollywood pass us by.

Second, when we moved so I could be treated at a world-class clinic, we just happened to move into a state with amazing programs for people with disabilities. For example, a housing program gives interest-free loans up to $50k for down payments for first-time disabled home buyers with 10 years to pay it off.

Third, much to my shame, we rely heavily on the generosity of our families. We could never thank them enough for their support. This is hard for me to accept because I have always prided myself on being independent. I got my first job at 15 as soon as it was legal to work and before that I was a companion to a girl with autism.

For my first job, I worked at a cinema cafe, but I couldn’t get anything right. They tried me as a waitress, but I kept dropping things. Then they put me in the kitchen, but I kept messing up all the recipes except the fancy salads.

However, I was committed to working and, oddly enough, my boss was committed to keeping me. I was so friendly and sweet that he didn’t want to fire me so he made up a position for me. I was hostess, and my job was to vacuum the lobby and clean the toilets. My grandma was horrified but my parents were proud of me because I stuck with it to earn money to travel one day. At $7 / hour, I watched my savings account and independence grow. I eventually used the money to go to Russia where I met the love of my life. Relying so heavily on others makes me feel awful and ashamed.

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