I Wish That Living with My Complicated Kind of ‘Normal’ Were Easier
Sometimes, I wish it were easier. I wish it were easier for doctors to pinpoint the root cause of my mysterious daily symptoms. I would like to receive answers that…
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.
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How a stuffed horse brought back a heavy childhood memory
Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement…
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Curiosity and Sweet Moments Build Special Bonds
As I was staring at a blank screen preparing to write this column, my little cousins Jackson and Mackenzie, who are 8 and 6 respectively, were playing with my nephew’s…
Driving to Faraway Coffee Shops While Learning to Honor My Good Days
Out of context, telling people that I willingly drive for an hour to get a good cup of coffee sounds pretty ridiculous. After all, think of the countless coffee shops I must pass en…
Small Spinraza Changes Yielded Big Results
I believe that the smallest changes can often yield the most impactful results. Someday when you reflect on your life’s culmination of little moments and modest actions, you will realize they’ve mattered more than…
Let’s Foster More Acceptance
Last summer, I wrote about how having SMA is apparently an open invitation for people to stare at me. It sounds crazy, right? It’s almost as though people in wheelchairs are about to…
‘It’s Go Time’: A Different Kind of Physical Therapy
Heavy goggles cling tightly to my eyes as I try to keep my balance on my mother’s lap. Even though she holds onto my waist, with the weight of the goggles, I have to…
Feeling Grateful in Unexpected Ways
Do you ever have moments when a wave of gratitude hits you in the last place you’d expect? They are the kind of moments that make you stop and take inventory of your life,…
Celebrating Friendships and Beautiful Sunsets
Driving home from Boston one evening, I witnessed the sky paint a vibrant sunset as we cruised down the highway. Bright pinks and oranges swept across the view from my window as the radio…
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.
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.
