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…
Refined By Fire – a Column by Ryan Berhar
Caregiving is an important job. After all, people like me would not exist without them. In a way, caregivers are my heroes. There are not many jobs that dictate the well-being, or even the very existence of another person, but this one does. It takes…
“Refined by fire” is an idea I have talked a lot about. I identify with it so much that I decided to use it as my column title. I have given examples of my refinement, but I want to delve deeper into the concept itself by giving a…
Trading the Flu for Cabin Fever
As someone with SMA, I always have to be more cautious of germs than most people. A simple cold can escalate into something more serious, and even become life-threatening. I have always taken what I like to refer to as “reasonable precautions.” I wash my…
I am crazy about football and basketball. I even have a sports blog called The Chairman. Everyone has passions in life, some of which help them escape the hardships of this world. For many people — especially in Oregon, where I live — these are of the outdoor…
Tongue Slips and Shoulder Chips
When you are in a wheelchair, it is clear that something is awry. I look different. Some can see past it and treat me like anyone else, but for others, it is a barrier. As a result, I am often met with responses that, while ignorant, are also…
Come Fly with Me
Traveling is an important part of life. While many take this ability for granted, it is next to impossible for those like me. I can take advantage of all the other modes of transportation, but airplanes are behind the times. I am unable to remain in my chair…
How I Turned Terror into Triumph
Although we naturally avoid trials, those are what build character. Good times are wonderful, but they do comparatively little to prepare us for inevitable hardships. For me, the most terrifying experience of my life turned out to be the most beneficial experience of my life, both mentally and physically. Let…
Everyone is shaped by their circumstances, but SMA shapes you (literally) in a more extreme way. For most of my life, I did not understand the difference between my personal preferences and the person I was becoming out of necessity due to the implications of this disease. It has only…
My Spinraza Journey
Spinraza. This word elicits a different emotion for each person. Much like SMA itself, everyone’s experience with this medical treatment is different. For some, it has been life-changing in a good way; for others, in a not-so-good way due to suffering caused by the risks associated with it. Others are still…
Recent Posts
- No one knows what they’re doing and everyone is doing their best
- Itvisma approval ushers in era of therapeutic choice for SMA patients
- There’s no place like home for the holidays
- Newborn screening for SMA boosts health, saves money: Study review
- Community is nonnegotiable for thriving with a rare disease
