This entry originally appeared on my disability blog, I hate stairs.
As with many tasks, SMA gradually took away my ability to comfortably read from the printed page. Not because of my sight. But because it became increasingly hard for me to hold books open in a comfortable position for reading. I had been contemplating an e-reader for some time. And when the Kindle Touch was released in November, it offered the best of both the e-reader and tablet worlds. That is because it uses E Ink technology to simulate ink on paper, which I prefer to a backlit screen, and it is operable by touch, meaning I can tap lightly just about anywhere on the screen to turn the page. With this newfound freedom it was only appropriate that my first book on my new Kindle be “Life Rolls On“, a book about the life of Duane Hale, a man with SMA type 3, written by Duane and his friend Rich Ochoa.
My first reaction was something like, “Whoa, this is like someone taking my thoughts and then publishing them.” It was real. I don’t know many people who know exactly what I go through with SMA. My brother, Matt, knows me inside and out as we often share moments of identical brain activity. Other than that, the people my age that I have talked to who truly understand living with SMA is a tiny, one-digit number. Despite the relentless tragedy that a book about SMA inevitably exudes, I found comfort in knowing that someone else has faced the same challenges I have. But it wasn’t all bad news. Duane’s story was one of hope, acceptance, courage, love, endurance, and positivity.
What affected me the most was the period in Duane’s life just after graduating high school. He was unemployed and lived with his parents. He was struggling with depression because his life lacked purpose. It had been reduced to a life of being isolated in his house only to emerge into the real world for so-called “soda runs” which were less about a craving for soda than they were about a craving for human interaction. He wanted a job and a family even. But those things seemed far out of his reach. At the risk of spoiling the plot, I’ll say he finally did achieve those wishes. But reading about his inner-battle reminds me of where I am in my own life. In fact, I even have his daily soda-runs in the form of having my attendant take me out to lunch. And I hope that, like him, I will find an employer who won’t write me off and maybe I can even run into my own “Kim”, perhaps on one of my lunch-runs. Who knows, right? :-)
The takeaway of Life Rolls On is just that. Life keeps going and you have to roll with the punches. Do what you can, be positive and proactive, and take a leap of faith. As I said before, you still have your dreams. Duane’s book is a case study in achieving them.