I’m at a point in my life where I’m highly convinced I’m going to die single and a virgin. That may sound dramatic to some people, but for many disabled adults, it’s a thought that quietly lingers in the background more often than anyone realizes. We live…
Columns
Like most humans in the world, I do not like to cry in front of other people. My life with SMA does not allow me a lot of grace to conceal my physical weaknesses and vulnerabilities. It is obvious to any random stranger that I cannot walk, and…
Note: This column describes the author’s experiences with Cymbalta (duloxetine), Prozac (fluoxetine), and Celebrex (celecoxib). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. After months of agony — and I mean agony — I finally decided to go off…
Note: This column describes the author’s own experiences with fentanyl and other pain medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “You really know pain, huh?” someone asked me, eyes wide with concern. In response to their offering me…
My aunt, who doesn’t throw anything away, recently sent me an artifact from my childhood: a pink paper pamphlet titled “Meet Connie.” I was diagnosed with SMA type 2 when I was 18 months old and started using a power wheelchair when I was in first grade. Around the…
“You must have dropped the baby.” That sentence was one of the many knives flung at my mother’s chest when I was diagnosed with SMA. She was 24, barely an adult. I was a difficult pregnancy, born a full month before I was due. My birth would’ve been even…
Three months ago, my husband, Randy, and I adopted Ellie, a mama dog who had been at the rescue for four months. She arrived with six puppies, tending to another litter after hers were adopted. “Tending” might be a stretch. When we saw Ellie, her interim miniature charges…
Caregivers are an essential aspect of my life with SMA, because I need assistance to do most of my activities of daily living. But I am learning more and more that caregiving is a strange mix of the deeply practical and the deeply personal — it’s as much…
Because I live with SMA, I value comfort and routine, which help to alleviate some of the hardship and stress that come with managing this disease. Since January, a new day nurse has been doing her best to provide these things for me. Her excellent care helps to protect…
I’m not one to turn down a compliment, but as a woman living with spinal muscular atrophy (SMA), I do not consider physical balance to be among my strongest skills. So, when my friend told me as we rode in the car one day that my balance was really…
