To say I didn’t attempt to set my complaint about a Sephora event up for success … would be a lie. If I was posting a video on TikTok, I obviously wanted people to see it. Time and effort are required to write a script, film, and edit,…
Columns
Because I live with spinal muscular atrophy (SMA), I have used a power wheelchair for most of my life. As far as I can recall, I have had seven different chairs, each one unique in its level of comfort, durability, and advanced functions. I’ve always had a complicated…
Being diagnosed with spinal muscular atrophy (SMA) 20-odd years ago was akin to a death sentence. But for the majority of my life with SMA, my health has been fairly stable. I’ve come to expect that, in the rare instances when I do get a cold, it will be…
In June, my parents and I huddled into our accessible van to head to the annual Cure SMA conference in Orlando, Florida. It’s always my most anticipated time of the year, filled with seeing friends, meeting new people, and spending late nights at the hotel lounge and by the…
I have a really special and pretty large friendship caregiving team, which I write about a lot in this column. Because I live with SMA, I need plenty of help, and I am grateful for all the wonderful friends who do so much. Mostly, my caregivers are…
There are often movies from our adolescent years that we continue rewatching no matter how old we get. They feel a bit like being wrapped up in a cozy blanket. I was definitely a Disney kid, so for me, “Camp Rock” and its sequel easily make that list,…
A generous neighbor recently urged me to pick tomatoes from his garden during his extended absence. Last Thursday, I obliged. Helen Baldwin plays “sorta farmer” after picking tomatoes at a neighbor’s farm. (Photo by Helen Baldwin) I shared some with a friend whose own tomatoes were a…
There are moments when I forget that I have spinal muscular atrophy (SMA). Does that surprise you? It surprises me. It’s not as if this is a new diagnosis that I’m still adjusting to. I’ve lived with this disability for as long as I can remember, and…
Living with SMA entails so much more than physical challenges and caregiver shortages. Our lives are much fuller and richer than that. The riches are in our day-to-day experiences, as well as the wisdom and maturity that SMA bestows upon us. This often results in other qualities, such as…
“Did you tell your siblings my medication costs about $1,000 SGD [$783] per day, before subsidies?” I texted my dad a couple of months back. It had been years since his elder brother and sister had seen me. As fate would have it, I was due for phenol and steroid…
