Columns

Note: I do not write on behalf of the entire CF community. No one does. This is about my preference. The most amusing, yet irritating, thing a person without chronic conditions can do to me is correct the language I use to talk about myself.

The CF community’s strength is in its powerful, far-spread voice. For people with a chronic disease, and doubly so when that chronic disease is rare like CF, it is critical for the community to be involved and educated. The CF community is exactly that. When a perfect storm…

When you have cystic fibrosis, having hobbies is an essential part of maintaining mental health. It gives you something else to focus on and to pour yourself into, alleviating your worries and taking your mind off things, at least for the time being. But what happens when life becomes difficult…

Loneliness is a killer. It’s perhaps not something those of us with life-limiting physical conditions spend much time thinking about. But the statistics are convincing. In the U.K., women aged 18-24 are at high risk of loneliness. Those suffering from loneliness are more likely…

I shoulda seen it coming. (That’s what I always say in hindsight, once it hits.) Maybe I shoulda known when five people at church told me I look “really, really tired.” Perhaps the signs were there when I purchased five melancholy poetry books despite my crippled budget. Or…

I consider myself a conversation-starter. I like discussing serious topics and sharing my genuine feelings and thoughts with others. I enjoy talking about sports, engaging in light banter, and dissecting the plots of TV shows — even why “The Bachelor” or “The Bachelorette” made the wrong choice. I’m…

Life has a way of changing plans and allowing others to help you embrace a new path. Before I sat down to write this column, I went to my favorite coffee shop to get an iced vanilla latte. I enjoy the small moments with my…

The gentleman in front of me is held up. An unsmiling, uniformed official calls him to one side with a brisk gesture. We exchange worried glances. The beeping intensifies and I start to perspire. I’m up next. My bag clinks with small, powdered vials and syringes. In my…

I was shocked recently when my social worker brought up for the first time the subject of social security disability insurance. I am currently working three jobs. As she spoke, I had many thoughts flying through my mind with nowhere to land. We…

I walk two paths: One is that of logic in my career as a scientist. In this field, it’s critical to remove emotion from the picture as much as possible. I work as a cystic fibrosis (CF) scientist so that isn’t always easy, but it is important. The…