Columns

As you get older, proper rest tends to become an appointment you have to schedule. It’s something you have an abundance of when you’re an infant, but its presence steadily decreases in your life once school, work, and social engagements take up increasing space. I’ve witnessed this phenomenon among my…

I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through social media and work. However, there is one friend I met at a conference in 2017 who is a bit of a maverick. Mike has no social media presence…

When it comes to healthcare, I’ve had remarkably good luck. There are, of course, bad apples. See, for example, the gastroenterologist who rambled about “The Odyssey” as he punctured my stomach lining. Or the surgeon who, in my young, still-developing mind, undeniably had it out for me. (A classic…

Somehow, it’s already been three years since I began sharing my story with you in this column. It’s been a beautiful, heartfelt adventure that I’ve thoroughly enjoyed. But I have to admit that when I invited you to pull up a chair back in 2019, I didn’t really…

Lying in a hospital bed, I watched as a nurse demonstrated how to use a nasojejunal tube (NJ tube) to my parents. I could tell they were nervous. They learned about an NJ tube only three weeks earlier, and everything about it seemed so foreign. My mother stumbled through…

My optimistic crust cracked a bit when I opened the mailbox last week and spied an envelope from my late mother’s life insurance company. It could have been correspondence requesting additional information so they could “process this claim promptly,” or it could have been the proceeds from the claim.

I was at a friend’s wedding a few months ago when I pondered the question of how to properly introduce myself. Typically, I give the spiel that the company I work for is a network of rare disease websites, and my job involves overseeing online communities and writing and…

There’s nothing quite as satisfying as checking an item off your bucket list. Earlier this year, I put on my big girl pants and rescheduled a long-awaited tattoo appointment. It was a whole ordeal — one you’ll remember if you’ve been reading my column for a while. In late January,…

While reflecting on my life today, a witty phrase popped into my head. I laughed to myself as I thought, “I don’t have to go looking for trouble, trouble will find me.” As I’ve said before, if I didn’t have a sense of humor about some things, I would…

I had different plans for this week’s column. As I write this, I have a spreadsheet open with my column schedule. Next to the deadline date I’ve typed “TFIOS column,” which stands for “The Fault in Our Stars,” a young adult romance novel by John Green that explores how…