Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with SMA Type I through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.As I prepare to write my first column in over a month, a nasojejunal tube is pumping food into my small intestine, reminding me I’m not out of the woods yet with my health. My energy level feels nonexistent, and I fear that it may be my…
For nearly two years, my days have been filled with health problems. Well, I’ve always had health battles to deal with, but in recent years, they seem to have amplified, or in some instances, multiplied. Nevertheless, I’m grateful to have exceptional care. I have a team of…
Before I dive into this column about how the art of organization keeps my life balanced, I believe a disclaimer is necessary. After all, no matter the number of “Queer Eye” episodes I watch and self-help books I read, or the amount of inspiration I get from…
Like many others at the turn of the year, I enjoy setting aside some time to reflect on the past 365 days. I’ve never been the goal-setting type at the start of each year, so reflection serves me well. For me, setting goals far in advance can…
Every year at Christmastime, my family carries out one of my favorite traditions. We all gather in the living room — my parents, brother, his wife and kids, and me — and watch the classic Claymation movie “Rudolph the Red-Nosed Reindeer.” To complete our viewing experience, my…
If you were to sort through my medical records, you would notice that some of the files list my diagnosis as “SMA I/II.” I had a good chuckle the first time I noticed this. After all, there is no such thing as spinal muscular atrophy type 1/2. I was originally…
Something you may not know about me is that I have a tendency to make a lot of impulsive decisions. Of course, when it comes to more complicated and serious matters that require tougher decisions to be made, I take my time and carefully examine the circumstances and craft well…
As I was leaving a doctor appointment a few months ago, I reached my breaking point. In fairness, it was long overdue. For weeks, I could feel the tension bubbling inside me. Anxiety would greet me at the office’s main entrance and sit in the empty chair…
While I can’t speak on behalf of every medical professional I’ve come across in my lifetime (truth be told, that’d be quite a large number), I wouldn’t be surprised if they thought I didn’t own many clothes. I wouldn’t blame them. After all, I’ve been wearing the exact same pair…
A few years ago, I wrote about the need for more understanding and awareness about disability. No matter how many years have passed or how much has changed, I’ve always felt strongly that this topic should be included in everyday conversations about disability. In that column, I shared my…
