Columns

The passage of time is a strange thing. A quarter of a century seems like such a long time to have been alive, yet at the same time, it’s like the blink of an eye. Somehow, as of Sept. 26 (the day I’m writing this), that’s exactly how long…

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…

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…

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…

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…

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.

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…

“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…

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…

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.