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.Growing up, there was a big bay window in the house where I lived. It overlooked the front yard and gave a great view of the surrounding houses and outside world. The sunlight shone through it, making anyone who sat next to it feel warm and happy. To…
This morning, I woke up to a most unusual greeting from my mother. “Good morning. I want you to stay out of Massachusetts,” she said while removing the BiPAP from my nose. Typically, she knows not to speak to me when I first wake up in the morning.
As Ella Fitzgerald and Louis Armstrong softly sing Christmas classics in the background, I ask my mother to set me up on my iPhone so I can gear up to write another column for you this week. There’s something both terrifying and wonderful about a blank page before…
Free time is a beautiful and wonderful thing to have in a day. It allows time for the activities we love most, breaks up our days so we’re not wearing ourselves thin, and gives a moment to rest and re-energize. It also is a rarity in my life…
Well, friends, today’s column is going to be unlike what you read here most in my little corner of the internet. That’s because this column is brought to you by endless fluids, antibiotics, steroids, and a nasty respiratory infection that is most likely walking pneumonia. Ah, yes,…
Let’s start this column off in the most real way possible. I’m weird. And I’m not afraid to let everyone know. I’m not talking about my weirdly disproportionate head-to-body ratio or that I have an arm that weirdly resembles that of a chicken wing. No, the weirdness I’m…
Birthdays take on a slightly different meaning around here. At this time every year, I think about a story my mother once told me about the first birthday I celebrated and wonder how painful and heart-wrenching it all must have been for my family to process. Although I’ll…
Until I was 15, I managed to stay reasonably healthy. But for the first time in almost a decade that year, I was hospitalized. The winter months can be tricky, with colds and flu taking over just about every person you come in contact with. I was admitted…
My wheelchair has been my ultimate sidekick since I was a curly-headed toddler, and just like any other great sidekick, I rely on it for pretty much every aspect of life. Without my wheelchair, I would be helpless, confined and literally stuck. As the only source of independent…
As much as I don’t like to admit it, sometimes life can be brutally unfair. I’m even hesitant to type these words because it seems as though everyone is always so focused on creating and chasing the idea of a perfect life. No one wants to be metaphorically…
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