Coming up with topics to write about can be a challenge. I was trying to settle on a topic yesterday, and it occurred to me that I have yet to cover my life philosophy: “One day at a time.” This concept has entirely transformed my life. I…
Throughout my life, I have required assistance with the most basic tasks. Things like scratching my head, getting myself a drink, or picking something up off the floor are just a few items on a never-ending list of impossibilities. Fortunately, there is now technology that can help…
Coffee and Mexican food: These are two of my greatest loves, and I once again enjoyed them today, the day I celebrated the one-year anniversary of my best friend Sam’s move to Bend, Oregon. The original plan was for Sam to live here to help with my care…
The internet is a valuable tool for someone like me, especially for the purpose of social platforming. I can’t do much socializing in real life. Whether the environment is too loud for me to be heard, the venue is inaccessible, or the activity is something that I physically can’t…
The sheer enormity of SMA can easily become overwhelming. All the physical limitations can cause me to overlook the gifts and abilities I do have. I’ve found that it is imperative for me to identify my strengths, and run with them (OK, drive with them) to the absolute…
As the famous proverb goes, “Experience is the best teacher.” While that makes sense, I prefer to say, “Other people’s experiences are the best teachers.” Why go through the pain of learning from my own mistakes when I could learn from yours? Unfortunately, I didn’t heed my…
Back in 2014, I was a kid who simply wanted to graduate high school, take a year or two to relax, and go from there. This is not a decision I regret because I generally hated school, and I thought I owed myself a break. However, I…
Being born with SMA put me at a severe physical disadvantage right off the bat. Most tasks requiring physical strength were off the table from day one, so I rarely had to deal with loss. For the first 18 years of my life, my disease’s progression was also…
I haven’t updated my Spinraza journey for a while because, well, nothing has happened. But we are getting down to the wire. Something is about to happen — or not happen — by the time this column is published. Since there is no access point for the…
I envy my younger self. Throughout childhood, I was content pretty much all the time. In the race of life, I was on equal ground with everyone else. Sure, I had physical limitations, but they didn’t keep me from moving forward in life. I went to school…
