I was going to have a cardiac arrest. That’s what a doctor told my mum during my latest hospitalization for an infection, preparing her for the worst. My acid levels were too high, confirmed by a blood test and my struggle breathing. In his decade of experience, the doctor…
I hoard poems like others hoard sports trophies. It’d be an exaggeration to say that I have a poem for every emotion under the sun. But I do have ones that stick with me, that ring through my head like a chant. Take, for example, Richard Siken: “Tell me how…
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 I’ve…
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…
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…