Columns

Sick Food Diaries: A Day In the Life

9 a.m. I should be starting my day with the smoothie bowls that are stocked in my freezer. You can add gluten-free granola and honey to the pre-blended nutrients, but granola doesn’t sit well with me. I ate a protein bar and a banana on the morning of my…

The Art of Not Helping

My head is in the clouds right now. I took a heavy sleeping aid about half an hour ago, and wooh, that stuff hits fast and hard. The sleeping aid has become necessary some nights. I don’t know how to sleep when my phone keeps buzzing, buzzing, buzzing. I pick…

Preventing the Spread of Misinformation

A few weeks ago, an article with the headline, “Vertex sinks on reports of deaths of patients taking cystic fibrosis drug,” circulated online. The medication in question was Symdeko (tezacaftor/ivacaftor). I saw that the article was being shared among my many friends with cystic fibrosis (CF) and within…

Sorry Not Sorry That I’m Sick

I’m sorry. I’m sorry for being sorry. Do you ever feel like all you do is apologize? It’s what I do best, and for that, I’m sorry. My friend Maria said something the other day that stopped me in my tracks: “Disabled and chronically ill people don’t need to…

Debunking the Myths About Vaccine Safety

I dislike making other people feel uncomfortable. Turning a light-hearted conversation into a heavy one by referring to my sister’s death, or standing up for myself to reduce infection risk, is the social equivalent of getting an IV to me. Part of my journey has been learning to approach my…

I Want to Break Up with My CF Clinic

I might break up with my CF clinic. It’s not them, it’s me. They are doing a good job. My CF doctor is fine. My nurses, dietitian, and support staff are really cool. And everything is basically OK. They’re nice people. It’s fine. The problem is, I’m not sure what…

The Benefits and Perils of Social Media

Every few months, I like to take breaks from social media. Sometimes these breaks are total, self-enforced social media blackouts. I delete the apps on my phone, use another app to block the websites, and even recruit a friend to change the passwords. Social media — like other methods…