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Most parents of children with rare diseases spend their lives trying to ensure that their child outlives them. That usually means taking part in fundraising to support the development of new treatments. But even if a child lives long enough to see a therapy come to fruition, this can…

Last week, I had to say goodbye to my best friend, my 11-year-old dog, Blaze. He had been battling a mast cell cancer tumor on his jaw. As pet owners know, making the decision for this final act of love is the hardest and most heartbreaking thing we have to…

We spend much of life transitioning between roles. Nothing is supposed to last forever, and the time you spend in one role is already preparing you for the next. Aware or not, I’ve been preparing to become an advocate, for myself and others, all of my life. As an adult…

I live with some level of pain and nausea on the regular. I’ve become numb to these symptoms because I’m used to them, but that’s sometimes a problem. A few weeks ago, I had intense nausea and belly pain. It seemed normal, given my cystic fibrosis (CF),…

Nana’s husband, my grandfather Bob, passed away a little less than three months before she found herself standing in the maternity ward of a New York hospital. There she stared at her new grandson, hoping and praying that he’d live as normal and healthy a life as God would grant…

Every time my phone rings and shows the hospital prefix number, my heart skips a beat, there’s a lump in my throat, and I feel paralyzed with fear. Do I answer it or let it go to voicemail? My mind races over all the things that the doctor might tell…

The Merriam-Webster Dictionary defines identity as “the distinguishing character or personality of an individual.” Having a genetic, progressive, and life-shortening disease such as cystic fibrosis (CF) can consume a large part of a person’s physical, mental, and emotional state. It can feel that the disease becomes your identity.

Prior to my double-lung transplant in 2017, I was scared of the words “palliative care.” I mistook it for hospice care and thought it meant preparing to die. I was hypersensitive about that because I was waiting on the organ transplant list. If I had known then…

Mom raised me to be a hungry reader, so it wasn’t long until I explored one of her favorite genres, Southern Gothic. Tales from this corner of the library are identified by distorted realities, eerie supernaturalism, eccentric characters, and sometimes abrupt violence. These elements are often bound together to critique…

We all know that exercise plays an important role in physical and mental health. But as someone with cystic fibrosis (CF), I believe that exercise is as vital as the medicines I take. When I was young, my pediatric CF physician encouraged my mom to keep me active.