Solstice
My favorite part of summer is the long days, the light stretching past dinner and leaking into evening, late. Every year I mean to have a solstice party, to...
Meeting at Sloan Kettering
Today I had my meeting at Sloan post-emboli. I was pretty nervous about it and then I woke up to this sign in my front yard. And a text from Meg offering to...
Near Death Experience, But Still Fighting
Dear friends, family and new subscribers, I had a pulmonary embolism at the end of May, 6 weeks before I was set to start chemo for my bone marrow...
The Mystery Child
May 31, 2022 I miss last week. I miss April 9 or 11 or May 10. I miss the days before I knew about the ticking time bombs in my lungs, in my calves. I think...
Moving to NYC…Kind of!
Hi y’all. A lot has happened since last month so let’s get into it. At the end of March, I had a call with my doctor and the transplant coordinator at NIH....
Devastating News
Hi y’all. Last week I traveled into the city to meet with my old immunologist, Dr. Charlotte Cunningham-Rundles. I met her when I was 15 and fresh off a...
A Look Back at Brunch
I wrote this 10 years ago when I was living in NY. I polished and finished it when I moved to LA. Finding this again is such a trip. Back then, I didn’t know...
One Day at a Time
One Day At A Time 23 days. 23 days spent living in a foreign bed, with questionable greasy hair and an inability to sleep because of the constant noise and...
The actual chart!
Forgot to add the chart. it’s at this link. This was sent to me today. This is what life with #STAT1GOF is like. pic.twitter.com/LfKe4wOw9q— Kelly Bergin...
Part 1.5…a chart
This is a chart depicting the manifestations of my genetic mutation. I have experienced almost all of these.
5 Years, Part 1
Five years of trials, blood draws, spinal taps, acupuncture, scans, consults and scopes, vein-finding missions, PICC placements, echos, EKGs, hundreds of...
Nostalgia
I wrote the following 12 years ago. I often romanticize the years I lived in NY. But the reality of working while my health was deteriorating was so, so...
New Year, Same Me
January 2022 I am submerged in painkillers, but the pain is as clear as ever. I am a mouthful of open wounds; my speech is garbled, heavy with uncertainty. I...
Walking Interlaken
Many times a day, you can drive down Grasmere and catch a slowly ambling duo, crossing the streets and sniffing the fire hydrants. You might catch us pre...
Health Update from NIH
I haven’t stopped vomiting in weeks; first I was at the Jersey Shore Medical Centerr for nearly a week in the ICU, and then I was brought to my home away...
The Decision
I have been a patient at the National Institutes of Health, or NIH, (yes, I know Dr. Fauci) for 4 years. At our very first meeting, they told us that bone...
Welcome Back, I'm Dying, JK, Welcome Back
Welcome and goodnight. That’s how I wanted to start and end this new project. I haven’t written in a couple of years. I wrote a piece for a class a couple of...