As I considered this column’s theme, I concluded I didn’t want it to be about me. At Bionews, the publisher of SMA News Today, we’ve been discussing several questions that might guide some of our columns this November, which marks National Family Caregivers Month. And it seemed…
Columns
When someone asks me what a good day looks like, my answer probably isn’t what they expect. It doesn’t necessarily involve accomplishing a long list of tasks, doing everything independently, or having a day when my disability doesn’t get in the way. For me, a good day is much simpler.
According to my late mother, I was a doting 2-year-old caregiver during her pregnancy, determined to keep her from getting hurt. I adored my parents but was unimpressed with my newborn brother, Paul. Knowing I wasn’t keen on sharing the attention, my folks deemed my offer to push baby Paul…
Last week, I had the opportunity to meet a woman who has influenced my life for as long as I can remember. I was starstruck and a little overwhelmed at the thought of talking to her. But when we met, she acted as though she was the one privileged to…
Recently, I was teasing my brother about how he apparently doesn’t care about me anymore. (Don’t worry. This couldn’t be further from the truth.) The next day, I was scheduled for an iron infusion and was dreading it. Because I live with spinal muscular atrophy (SMA), maintaining my iron…
It’s almost impossible for me to go places without silently analyzing the accessibility. I do it in my own city, but even more when we travel. After living with SMA for 29 years, it’s just natural to look around and quickly determine whether I can actually be a part…
A few years ago, November was when writers worldwide would transform into hermits. We would hunker down and attempt to write 50,000 words by the end of the month — the equivalent of a novel. Rarely could we be seen during this time, except when fetching food and drink and…
I often write about the caregivers who help me live a full and meaningful life with spinal muscular atrophy (SMA), and it is the primary theme of this column. Since I’ve lived most of my adult life away from home, I usually focus on the many wonderful friends in…
When you encourage someone and give them positive reinforcement, it’s like giving them a priceless gift. It inspires people to do their best and makes them feel special. Through my experiences with SMA, I try to encourage others, which in turn encourages me. For example, when new nurses are…
It seems we were just approaching October. Now the month is almost gone. Growing up in Fort Worth, Texas, I loved October. Not only did the searing summer heat finally ease, but Halloween was also right up my alley. I regularly scarfed up Alfred Hitchcock movies and…
