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 […]
Beyond my ability
Lately, when I wake in the morning, and this phrase passes: “I am so lucky to be alive.” It sets in, and it comes again. I think it has something to do with the pandemic. I know it has something to do with finding out more about my early years. I re-requested my records from […]
Drum Roll
I had a very good day yesterday. I am even shocked by it. My lung capacity increased from 1.98 Liters 59%, to 2.55 Liters 77%. It increased 500ml, or a half of a liter! 18% increase – It leaped over the 60s. I thought in all good measure I could be at 67, 68%. I […]