How my new BedJet device helps me avoid sweating at night
If you have SMA or care for someone with the disease, you’ll know what I mean when I say we get sweaty. At first I thought it was just me, but then I read somewhere…
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Being thankful even for SMA
It’s somehow already time for Thanksgiving, the designated day for us to give thanks for our blessings. Ideally, we should designate a few more days each year to doing that — like, say, the other 364 — but one day a year…
Finding gratitude, even amid the toughest battles of life with SMA
Living with spinal muscular atrophy (SMA) often means facing many hardships and uncertainties. With physical limitations, emotional hurdles, and complex medical issues, SMA is constantly shaping and shifting my life. Though these are the realities…
Choosing to represent the disability community well
Individually and collectively, it’s vital to be sensitive to what’s happening in the world around us. This awareness allows us to be empathetic and strive for change that improves society for ourselves and others. The SMA and…
The healing power of writing on my journey with SMA
Writing is a kind of magic — a spell woven with intention and purpose. It’s more than just a passion; it’s my superpower. I can bridge the gap between myself and the world through words, expressing empathy,…
How my new home will enrich my life with SMA
Since July, my family has been converting the garage space in our new house into my own bedroom, bathroom, kitchen, and medical supply room. We’ve faced one challenge after another as we prepare to move. Currently, I…
In times of darkness, look for the bright spots
I consider myself an optimist, at least most of the time. Life has hurled more than a few lemons our way over the years; thankfully, I like lemonade. In 1997, when my husband, Randy, lost his job mere…
To boldly go where the SMA community has not gone before
I was always a “Star Wars” acolyte, but I became interested in the world of the “Star Trek” science fiction franchise when I was in high school. Whereas “Wars” is a giant space opera…
What do you do when video game accessibility is inaccessible?
It’s 2014. I’m months-deep into a major depressive episode. Nothing is enjoyable, not even my all-time favorite video game. I feel listless in the worst of ways. Several of my friends are playing “Dragon Age: Inquisition”…
Why is listening to my body when I’m ill so hard to do?
“No, I’m totally fine” are often my famous last words when I’m actually not fine at all. Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a…