by Jay Smith for the Huffington Post
When I was diagnosed with ALS, I was given two years to live. Two and a half years later here I am typing this article using my eyes, while being fed through a tube in my stomach and wearing a breathing mask to give my diaphragm a break. I am one of the lucky ones, and I’m thankful for that.
I still think about how awesome it would be to be sitting at bar in a divey Mexican restaurant with my wife, shoveling way too many salty chips and chasing them down with cheap margaritas. I’d be happier than a truck driver after an eight-hour stretch to be able to scratch my balls again, but I digress. You might be surprised that the hardest thing about ALS isn’t trying to vigorously type in a witty, timely jab with eyes when your buddy does something stupid. It is the cost to stay alive.
When I was diagnosed I came across other patients, like Eric Valor, who through mechanical ventilation has been able to stay alive for over ten years. Then there’s Augie Nieto who has been very actively fighting this beast for twelve years and is the current Chairman of the board at ALS.net. And of course, we all know Stephen Hawking, who I like to tell people I have the same disease as to make me seem smarter. I mean I bet we both share the burning desire to scratch our balls, so there’s that.
It’s estimated that the care for an ALS patient is over $200,000 a year. I ran my own company for ten years and while I always chose a new hire over a pay raise, I was able to bring in enough to convince my wife to “give it another year.” I put away a few thousand dollars each year into my retirement and paid my fair share into social security, both as an employee and employer. So when I could no longer work because of ALS, I applied for social security disability and Medicare. When I found out that I would only collect around $20,000 a year we thought, okay my wife will go back to work and Medicare will cover the medical expenses. I was wrong, almost dead wrong.
I now require a full time caretaker while my wife is at work, which is not covered by insurance. As my breathing continues to decline, I can extend my life for a very long time with a tracheotomy and ventilator, but at what cost? I will require 24-hour care, more sophisticated technology, not to mention a $30,000 used wheelchair-accessible minivan, none of which are covered by Medicare. There are government programs to help cover these costs, but not for middle class families. So my choices are to give up everything and declare bankruptcy, divorce my wife, or just accept death.