With every caw of a seagull and crash of a wave against the shore, I swore I felt every stressor in my life exit my body. OK, maybe that’s a bit dramatic. But the healing powers of the…
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This may be an unpopular opinion, but I don’t buy into the hype of New Year’s resolutions anymore. For years, I would set goals and articulate my intentions. I made vision boards. I followed the traditions that come…
This column describes the author’s own experiences with Spinraza (nusinersen). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When trying to decide on a topic for this week’s…
As I check off the last item on my long list of gifts for the family I adopted this Christmas, I say a little prayer that they’ll feel utmost joy and kindness this season. I’ve been adopting…
Entering the hospital recently for what felt like the millionth time was not my idea of an afternoon well spent. Nevertheless, it wasn’t like I had much of a choice. My nasojejunal feeding tube requires me to go…
With a brisk chill in the air and an impending snowstorm near, I’m reminded that it’s officially the time of year when people start asking me, “Where’s your coat?” It’s a valid concern on their part, I suppose. After…
If you’ve never shivered at the sound of someone coughing, chances are you’ve never experienced the weight of a respiratory infection. For someone living with SMA, that’s not usually the case. Getting these infections can be dangerous and…
Contrary to what others may perceive, living with spinal muscular atrophy (SMA) doesn’t come with an instruction manual. Trust me, though, there are many days I wish it did. A common question I’ve been asked throughout my…
“Please don’t feel sorry for me when I don’t feel sorry for myself.” These are the words I wish I could tattoo across my forehead anytime I’m out in public. OK, maybe that would be a little over the…
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…
