As I stared at the rolling green hills before me, I wondered what 8-year-old Alyssa would have thought of this moment. It was my nonprofit organization’s first charity golf tournament in almost six years, though the annual events…
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With August officially here, I feel like I’m in a competition with time, frantically trying to make the most of summer before it’s gone. In doing so, I’m putting unnecessary pressure on myself. I’m measuring my days by how…
I don’t always feel helpless, but when I do, there’s a bug in my vicinity. My house has felt like bug central this summer, and I’ve strongly considered moving out. OK, the latter half of that sentence might be…
When my mother was 7 years old, she moved to the United States without knowing a word of English. I’ve known this all my life but had never asked her what the experience was like until recently. After questioning…
If you’re a soccer fan like me, I imagine you’re thriving at this time of the year. Because I grew up in a proud Portuguese family, the sport is a huge part of my culture. If I didn’t know…
The delicacy of my health is no joke, but during a recent appointment with my ear, nose, and throat specialist, I had to laugh. In addition to living with spinal muscular atrophy (SMA), a rare disease, I’d…
While living with spinal muscular atrophy (SMA), losing physical abilities is expected due to the progressive nature of the disease. Yet, even though I’ve been accustomed to this grim prognosis, sometimes I’m caught off guard. Although I…
Living with spinal muscular atrophy (SMA), I’m often met with this question from others: “How do you do it?” Upon learning how much goes into living a life full of health issues and weakness as well as…
This column describes the author’s own experience with a Spinraza (nusinersen) injection. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I thought it’d be different. I…
After closing the tab on my browser, I couldn’t help but wonder how much progress I’d made in the past year that I failed to notice. My words on the screen were there in plain sight, from a moment…
If you’ve perused my columns in the past, you’ll know I’m a big advocate for teaching children about disabilities. As a woman in a wheelchair who looks different from the average person, I’ve been the subject of…
Late last year, I embarked on an unexpected journey to self-discovery. The past several years had been an uphill battle with my health, each day bringing its own relentless fight. The good news was that I was surviving…
