It was a normal Tuesday like any other. At least, that’s what I thought. The mundanity quickly vanished when my nasojejunal (NJ) tube unexpectedly clogged. My specific feeding tube can clog easily. It’s the most narrow tube available, which makes me more prone to…
Columns
If there’s not a 12-step program for sentimental slobs, maybe there oughta be. As a sentimental slob myself, I come by it naturally. Let me explain. Although my parents had little money when they married, Dad made a reservation for their honeymoon at a new hotel in town. After the…
I rarely ever cry. That’s a lie. I cry an average amount. I’m especially sensitive in moments of stress or tension. I’ve been known to burst into tears at the first sign of confrontation, which, as I’m sure you can imagine, is less than great for my reputation. But I…
In my previous column, I discussed how difficult times can help strengthen the qualities of patience and endurance. But life lessons can be learned even when we’re not going through a crisis. It may take going through terrible events first, but it’s up to each of us whether we…
By the time you read this, my dad will be back where he belongs. I am, of course, joking. My dad has a life outside of his caregiving duties, as he should. But there’s some truth to the claim that, in his absence, things tend to fall apart. If…
As a young teenager, I went with my mom to a workshop at a Cure SMA conference about living with SMA as a woman. A room full of young ladies and their mothers spent the afternoon asking questions of the panelists and seeking to gain wisdom and…
“Alyssa, I’m afraid I’m stuck between a rock and a hard place,” were words I never wanted to hear a doctor say about my health. Until, unfortunately, it became my reality a couple of months ago. For the second time in two weeks, I was lying on a hospital bed…
My husband, Randy, and I had been married 23 years when news of a surprise third baby, um, surprised us. Jeffrey hadn’t been planned (by us, anyway), yet we forged ahead almost sanely in anticipation of our expanding family. Our oldest child, Matthew, then 10, undoubtedly knew just enough about…
The other day, I had my annual evaluation with a nurse to make sure I’m still disabled. This is one of the things that those of us who use government services for caregivers just have to do. It’s no secret that having a disability is a full-time occupation. Fortunately,…
When it comes to COVID-19, I’ve been pretty darn lucky. I can count on one hand the number of people I know who haven’t gotten COVID-19 — myself among them. Somehow, miraculously, I’ve managed to avoid the plague. I could attribute my health to literal years of quarantine, but the…
