Reaching the End of My Spinraza Cycle
A good way for me to gauge whether or not I’m due for another Spinraza (nusinersen) treatment isn’t by looking at a calendar or counting back the number of weeks from my last dose.
Life, One Cup at a Time
— Alyssa Silva
Alyssa Silva is a writer based out of Providence, Rhode Island. She was diagnosed with SMA type 1 in 1991 when she was just 5 months old. Aside from writing, Alyssa is the chief creative officer for an intimates brand and runs a small business selling her artwork. In her free time, you can find her canceling plans to hang out with her golden retrievers, watching reruns of “The Office,” and convincing others why Taylor Swift is the greatest of all time.
Featured Post
Rotating part of my medical team every year takes an emotional toll
As much as I try to shove this feeling aside, there’s a part of me that quietly dreads this time of year. Amid the beach days, hot weather, and all the other joys this…
Read more
My Brother’s Earliest Memory of SMA Crushed Me
I recently asked my brother, Adam, what his earliest memories of SMA are. At the time of my diagnosis, he was only 2, but his sharp memory has served as a…
Instagram Gem Redefines What Rest Means to Me
Do you ever hop on social media and come across a post you feel was written for you, and only you? I know social media sometimes gets a bad rap. But at…
It’s Not Paranoia if Germs Are Out to Get You
If it’s all right with you, I’m going to use this week’s column to vent about something that happened over the weekend. To most, it was nothing that would have stood out.
After Winter’s Thaw, We Need a Spring Cleaning for the Soul
According to the calendar and the extra hours of sunlight we’ve been getting a feel for, a new season is finally upon us. I love the message this time of year —…
How My Service Dog Helps Break Social Barriers
For those of you who don’t follow me on Instagram and see my absurd collection of pictures of my dogs, I have two retrievers named Wish and Vince. Vince, or…
What the Uphill Battle of Gaining Weight Feels Like
One of the most dreadful, ongoing battles I’ve experienced with my doctors in recent years is my inability to gain weight. At every appointment, during every procedure, and with every hospital stay…
Finding Balance Between My Mind and Body
As I get set up to type this column, the rain is steadily falling from the window behind my couch. The house is quiet and the coffee is still warm. It is…
Outliers, Spotted Zebras, and Life with SMA
Allow me to begin this column by traveling back in time to the days of middle school mathematics. Now, my memory may not serve me as well as it did during my…
How a Stranger’s Words Pulled Me Out of a Rut
I always struggle with mental health at this time of year. Winter has that effect on me. Each year, I tell myself things will be different, so I map out a game…
On Hiring New Caregivers
Recently, one of our columnists, Kevin Schaefer, took to the SMA forums to discuss his experiences with hiring new caregivers. His portrayal of what these experiences entail certainly resonated with me,…
Maintaining a Social Life Sometimes Involves Creative Thinking
Without coming across like a total diva, I have to ask the Universe a simple question: Is it too much for a girl to get a personal assistant around here? And I’m…
