I am a 42-year-old husband. I am a father, son, brother, cousin, nephew, grandson, uncle, and friend. I am an engineer and a guy who likes to create. Although an ALS patient is my least important role, it is severely challenging my ability to play all the other roles that mean so much more to me.
Nothing is more important to me than my family. Even as my wife and three daughters are increasingly supporting me, I want to continue to be there for them. Whether it is by still getting up each day and heading into the office or just figuring out how to work around my growing limitations, I am willing. Most importantly, being there requires time, and I am open to trying any treatment that can give me more time with them; more birthdays, more holidays, more milestones, and more everyday moments that fill a lifetime.
After absorbing the gut punch of an ALS diagnosis in January, 2017, I remembered something I read years ago: "Between stimulus and response there is a space. In that space is our power to choose our response." This ability separates humans from animals, and it is a liberating freedom we as humans can take advantage of, if we so choose. It has kept me focused on how best to continue playing the more important roles in my life, as well as pursuing treatments that can slow the progression of my disease. It is consciously choosing not to succumb to bitterness and despair, each and every day.