“I wish I were normal,” I used to say to my mum. I told her this at other kids’ birthday parties, when they played musical chairs or went on scavenger hunts. I said it during emergency hospital stays and in front of the TV, when…
When I say, “I don’t need my SMA to be fixed,” I mean it from the bottom of my heart. Last month, I set sail with my first dose of the new disease-modifying therapy Evrysdi (risdiplam). It was a choice that required careful consideration of my options and…
Many, many weeks ago, I said I was going to read “Care Work: Dreaming Disability Justice” by Leah Lakshmi Piepzna-Samarasinha. In a month. Reader, I was wrong. I was busy revising my novel, so it doesn’t surprise me that reading fell to the wayside. But I also think…
Last summer, I met a new friend, Amber Bosselman, at the Virtual Cure SMA Conference. Amber is a certified life coach with a bachelor’s degree in psychology. She uses her knowledge to…
January marks the eighth anniversary of when my blog came to life. I was never much of a writer prior to launching my blog. In fact, when I announced that I’d be blogging in between classes and schoolwork during my final semester of college, my family…
Doesn’t it feel like we all carry a lot of baggage in life? If we could just forget about all the negatives, we could live on cloud nine. What if I told you that we would be permanently stuck on ground level, going nowhere in life, without all the heavy…
Kudos and a whew! to us all for surviving 2020. Vastly understated, last year was memorable. Overall (and thankfully), my family managed to welcome the new year intact. However, a second loss connected to my teaching stint at Brockman School hit hard. Brockman, a self-contained school for students with orthopedic…
The pursuit of independence is almost always on my mind. As a disabled person, I face numerous challenges when it comes to living an independent lifestyle. From financial obstacles to managing caregivers, the very thought of one day moving out of my parents’ house fills me with more…
It cried out in the dead of night. The wild call erupted like the sensual panic of a volcano beneath placid moonlight. My partner, Andy, was helping me get situated in bed for the night when the startling sound rang from the woodland edge outside our bedroom window. “That’s…
I didn’t plan on spending the majority of the day after Christmas on the toilet with a sharp pain in my side, but it was a rather fitting end to 2020. Despite my best efforts, I couldn’t escape this year without at least one visit to the ER. …
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