It’s incredible how seemingly small changes can lead to something that turns out to be much bigger. Let’s explore this idea through my experience with SMA. In February, I moved into a new house, where we converted the garage into my bedroom, bathroom, kitchen, and medical supply room.
First in a series. In this season of Thanksgiving, it is easy for me to declare my gratitude for my family and friends, the generous and caring community that surrounds me and enriches my life. I write about these people and relationships often. They are the primary theme of my…
You know that poem by Anne Boyer I love about holes? You fall into one, only to dig yourself out over weeks or months or years, only to fall into yet another hole, this one both different and familiar. Life, then, becomes a series of holes, some small…
According to my mother, I made sure she was being “kessul” (careful) during her pregnancy with my brother. I wasn’t thrilled, however, about sharing the spotlight with baby Paul. Thinking outside the box, even then, I asked sweetly to push Paul around in the buggy. My folks, weary from parenting…
It’s a running joke in my family that, if we had the money, we’d build me a robot caregiver like Baymax from Disney’s “Big Hero 6.” Training human caregivers is nothing short of exhausting. Humans need food and sleep, they forget things, and most problematic of all, they have their…
While I understand that inanimate objects cannot have a mind of their own, there’s a lamp in my bedroom that would kindly disagree. I’ve had this lamp for a couple of years now. It’s set to a timer that turns on every night at 11 p.m. and stays lit until…
In my previous column, I discussed how nurses are recruited and hired by a home health agency, as well as the interview and training processes necessary to work on my case. In this column, I’d like to explore what it takes for a nurse to remain in this role,…
Throughout the summer, my favorite pastime is just to be outside, for long walks, porch talks, picnics — any reason to bask in the sunshine. But as the days get cooler and shorter, I prefer to be inside and find crafty things to occupy my time. Over the years, I’ve…
One night, I was woken by a beeping noise. That’s not altogether unusual, because alarms from my medical equipment occasionally sound throughout the night. I’m so accustomed to it that my mind sometimes incorporates the sound into my dreams instead of waking me. But this one was unfamiliar. What was…
Autumn and I have always had a complicated relationship. Its golden hues, pumpkin-patch allure, and cozy feelings entrance me like no other. Yet, amid this season’s spell lies one hard truth to accept: Winter is coming. For those of us living with spinal muscular atrophy (SMA), this means more…
Get regular updates to your inbox.
