In 2024, 33,989 people with cystic fibrosis resided in the US. Moreover, of those 33,989 the CF Patient Registry states: “Notably, 10.0 percent of people in the Registry are now between the ages of 40 and 49, and 9.0 percent are aged 50 or older. This trend reflects increased longevity among people with CF, highlighting […]
Toggling Perspectives
The text in quotations was written 25 years ago. The text in italic – current response. “One day, a friend of mine asked me if cystic fibrosis made me feel as if I were the walking dead. “ I’d say today, uh-uh – bullshit. Don’t ever ask me that question. It’s rude. “Sometimes cystic fibrosis […]
Some Days
Some days I think that cystic fibrosis is impossible or, more specifically, the things to keep going are almost impossible. The ten thousand things I am supposed to keep track of mentally and physically are almost impossible. It drives me to the edge. Sometimes I take the biggest sigh, befuddled. You got to be kidding […]
Believing in Your Story
One of the hardest things about writing your story is believing in your story. And believing a thousand times through. * Let me tell you something, I had one of the most remarkable days the other day. Perhaps I won’t ever have that day again – but honestly, I think I will. I learned a […]
Steady Eddie
I did my PFTs today. I last did them almost a year ago. I have been stretching this new-found freedom without stretching over. It’s been wonderful. Glorious. My PFTs are Steady Eddie, and that’s perfect. Thank you, Universe. I went to Waltham Children’s, which is gigantic. I had never been there before. It’s a little […]
Ease
I recently lost a friend of mine. Some of you know this, and some of you do not. Every time I lose a friend, a CF friend, I always think they tried, they succeeded, they lived, they laughed, and they let go. They let go of their dis-ease, which literally means des– without, away, of […]
Believe in “Donut.”
A long, long time ago, I lived in a house of fear with great struggle and the wanting and willingness to believe. Believe in the possibility of living without fear, without restraint, and without absence or a more affirming word, knowing. Believe in “Donut.” This is a story of two stories. One is tangible fear, […]
Good work, good people
I had an excellent appointment today. My PFTs were good. They were about the same as last time. I am very thankful to be stable. I am incredibly grateful to be given the gift of Trikafta. And I would like to keep an exacerbation as far away from me as possible, knock on wood. There […]
Pitstop
I haven’t written in a while because whenever I do – my mind shifts and moves toward stories for my memoir. This is a pitstop to write, then back to the monstrosity of the many pages I am working on; painting touch-ups and putting my living room back together. Last week I had a doctor’s […]
In Between Spaces
I am THRILLED to share that I have a story coming out later this year in the anthology IN BETWEEN SPACES: AN ANTHOLOGY OF DISABLED WRITERS. The collection brings together more than fifty pieces of poetry and prose by thirty-three authors writing from their experiences. Read Stillhouse Press full announcement. From Stillhouse Press: “In Between […]