9LivesNotes and the reaction to it inspired my memoir, LITTLE MATCHES, which will be published by HarperOne in early 2021.
The blog began with this little photo of Caitlin, taken around the time she turned 2. She was fascinated by the moon that year and had no idea that she had just been diagnosed with the invisible disease, cystic fibrosis, that would eventually take her life.
CF is caused by a malfunctioning gene, but back then, the gene had not yet been identified. All of our medical questions were answered with some version of, “We don’t really know.”
What was known: that CF causes a salt imbalance in the body, which mainly affects mucous-producing organs like lungs and the pancreas. Healthy lungs are slippery, sterile. CF lungs are sticky and harbor bacteria, which cause infections, and which slowly render lung tissue non-functioning.
“She could live a long life or she could die by Christmas,” said the CF doctor who was assigned to talk to her dad and me after the diagnosis. “We don’t really know.” CF is a progressive disease, he explained, with a disease path that is hard to predict, and often different for everyone.
Living with chronic uncertainty and fear became a way of life for us. It took its toll, of course, but it also produced some marvelous benefits. Carpe diem. Live in the moment. Cherish what you have while you have it.
Growing up, Caitlin was able to live a relatively normal life—at least on the outside. But even people very close to her didn’t realize just how much she had to put up with. It was easy to see only the kid who presented so confidently and well on the outside. Stoic that she was, she kept most of the details of the CF struggle to herself.
When she was 11, part of one lung was ravaged by a stealthy infection. She lost a lobe to surgery, and spent months in the hospital.. She had a bit of an easier time through high school, but during her college years, she went from being able to run for miles to having to settle for simple walking, and then, over time, to having to move at her own, slow pace. She went from being able to climb stairs to having to move to an apartment with an elevator.
For years, she lived with daily, undiagnosable aching that was so miserable she lived on Tylenol every four hours.
During the holiday period of 2013, her respiratory health rapidly worsened. She reached a point where she was no longer stable off of medical care. She began to need 24/7 oxygen and IV medicines. She dealt with CO2 retention and other complications of severe lung disease like pulmonary hypertension. So it was at that point, when everything had progressed to such a level that her quality of life was no longer tolerable, that she moved to the next step: lung transplantation.
Transplants essentially exchange one set of problems for another set (pneumonia, rejection), but these problems can, with advances in medicine, be managed. And the trade-off can be incredible. Caitlin knew other CF people who’d had transplants and gone on to live full and vibrant lives. She felt very grateful to live in an age when it was an option.
She was listed on April 24, 2014. She knew it would likely be a long wait. Basically, you need a lot of supplemental oxygen to be high on the list, and Caitlin’s O2 needs were not yet very high. She was also petite, with O+ blood, so she had a lot of competition.
I began writing this blog to keep friends and families abreast of news, or in our case, for a long time, much longer than we ever expected, the dispiriting lack of it.
By the time she was in crisis—on life support and at the top of the list for need, her story had spread nationwide and this blog had reached hundreds of thousands of people, many of whom continue to offer incredible kindness and support.
Life without Caitlin has been excruciating and heightened, and there has been great confusion but also great clarity. When you lose what’s most important to you, pretty much everything else falls away, and you’re left with the fact of yourself, still existing in a world that must make sense if you’re to continue living in it.
LITTLE MATCHES was my way of making sense in order to live.
—Maryanne O’Hara, mother of Caitlin