I bravely soar to meet the challenges of SMA with determination and a can-do attitude. But despite my positivity, certain things get me down sometimes. I feel discouraged whenever I think about how only the few people closest to me know who I truly am on the inside. I…
A great relief comes when you’ve been working hard to get through an obstacle and finally see progress. Perseverance is rewarding. In my case, SMA has given me many complicated challenges. As my mom, my medical team, and I vigorously work through each one, the relief we feel when…
I’m now in a season of life when things that were once taken apart are getting put back together. In my previous column, I explained that after 29 years of living in our house, my mom and I made a momentous decision to move into a multigenerational home with…
Back in July, I wrote about the small apartment my mom and I used to live in before we moved into a new home when I was 13. In the new house, I have a better bedroom and bathroom, my own kitchen, and a medical supply room — all…
To highlight SMA Awareness Month this August, I could go on and on describing the physical aspects of my life that occur every day. For example, I could talk about the aggressive respiratory care my mom and my nurses provide me to keep my lungs clear. Or I could…
On Sunday, I climbed another mountain, and I’m giving a prayer of thanks and saying, “Hip, hip, hooray!” Why? Because I had my 42nd birthday on July 7. It’s a high moment for me because I’m now 40 years beyond the life expectancy I was given as a…
I’ve written many stories about hope, which has enabled me to climb mountains and achieve my goals. Throughout my journey with SMA, I’ve traveled across many mountain ranges. But what happens if I slip or face an avalanche of problems, causing me to slide back down? There have…
I’ve been through a lot with SMA, but in April, I faced something different. Early that month, my mom and I both tested positive for COVID-19, something we’d strived for years to avoid. It started with body aches the night before I tested positive. The next day, chaos…
I’ve written a lot about the support I’ve received from nurses and others. Although I always recognize the people in my life one way or another, I have yet to celebrate plenty of people, both medical professionals and nonmedical ones, through my columns. Everybody I know has gotten recognition…
Last in a series. Read part one here. Previously, I wrote about an extremely important topic: safety while using the Passy Muir Valve (PMV). This wonderful tool helps people with a tracheostomy improve their vocal communication by redirecting “airflow through the vocal folds, mouth, and nose.” However, all…
