“No, I’m totally fine” are often my famous last words when I’m actually not fine at all. Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a bad day while disregarding my…
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Though I’ve had 20-something Spinraza (nusinersen) injections, my latest procedure proved most eye-opening for me. For almost seven years, I’ve gotten lumbar punctures to deliver this tiny but mighty medicine directly into my lower spine. After a…
Although I often don’t like to admit it, I sometimes feel as though my identity has switched from person to patient overnight. The past few years have been hellish, with one health battle after another. It feels like…
Through my experience with SMA, I’ve come to understand the fragility of life. I’ve also come to understand the fragility of my wheelchair. I’ve been using a wheelchair for three decades and have learned how invaluable it…
I couldn’t believe what I was seeing on the news. A tornado had touched down in my home state, Rhode Island, for the fourth time in six weeks. Before these, I’d heard of one or two tornadoes touching down…
In the SMA community, we expect to grieve the loss of our abilities, given the nature of this disease. But for me, grief often feels like an ambush. In my three decades of life, I’ve lost many…
You wouldn’t know this just by looking at me or the pictures I post on Instagram, but I’m hiding something. I imagine myself and this secret I carry as though it were a light switch. When people are…
Living with SMA, I too often don’t feel in control of my body. It’s an unsettling feeling to sit with. Some days, no matter how hard I try to take care of myself, my body has its…
When I was a little girl, there was a period when I frequented the orthopedic surgeon’s office. Back and forth we went, visit after visit, debating whether I should have surgery to put rods in my spine. Though…
My love for the beach has always been passionate yet complicated. Sure, it’s my happy place. The sound of ocean waves crashing into the shore, the peacefulness that envelops me when I reach the sand and feel that…
When I travel, even if it’s just to a friend’s house, I carry with me a lot of stuff. Among it all is my most handy gadget and trusty companion: a voice amplifier, a small piece of…
When I was in college, I had a professor doubt my abilities because I was disabled. I started struggling in their class early in the semester, so I went to their office for two reasons: to get extra help…
From the moment I wake up to the time I go to sleep and get lost in my dreams, I’m fully dependent on others to help me meet my physical needs. If I have to change positions in the…
