Cystic Fibrosis News Today Columns

February 26, 2021February 26, 2021

Celebrating the Opportunity to See the World Through Rare Eyes

Cystic Fibrosis News Today Columns

All of us who are affected by cystic fibrosis have our own unique experiences. No two stories are the same, let alone our genetic mutations. Taking it to the next ... Read more

February 23, 2021February 23, 2021

Why My Recent Happiness Makes Me Wonder If I’m Secretly Ableist

COVID-19 Columns, Cystic Fibrosis News Today Columns

“I am so happy right now,” I say to my partner as we set off on a drive on an ordinary Sunday. I haven’t said this much in the last ... Read more

February 16, 2021February 16, 2021

I’m Thin and Sick, Which Gives Me Power to Be a Dangerous Bully

COVID-19 Columns, Cystic Fibrosis News Today Columns

It’s 10:25 a.m. and all I’ve had is coffee. Last week, I wrote about my struggles with cystic fibrosis-related digestive damage and my increasingly fragile colon (which is not a ... Read more

February 16, 2021February 16, 2021

How a Romance’s Death Led Me to Finding a More Powerful Love

COVID-19 Columns, Cystic Fibrosis News Today Columns

I’ve been in love. It was magnificent. It also hurt. Love belongs among the most powerful building blocks of our cosmos. Passion drives creation, compassion nurtures it. Blend the two ... Read more

February 12, 2021February 12, 2021

Rumbling With the Transplant Decision

Cystic Fibrosis News Today Columns

It’s been three and a half years since I “chose” life through a double-lung transplant. Life-and-death decisions rarely are black and white. The path to making my decision wasn’t linear; ... Read more

February 9, 2021February 9, 2021

Denying My CF Is Making Me Hungry

COVID-19 Columns, Cystic Fibrosis News Today Columns

I went to bed hungry last night, and I woke up scared of food. This is my new reality. Although this is an old-new one I’ve lived (and lived to ... Read more

February 8, 2021February 8, 2021

How I’ve Learned to Use My Insecurity to My Advantage

COVID-19 Columns, Cystic Fibrosis News Today Columns

I recently saw a meme in which a person is smiling or laughing in the first panel, then looks utterly dismayed in the second. The second panel’s overlay reads: “Tfw ... Read more

February 2, 2021February 2, 2021

In Dance and Other Matters, Representation Counts, but Not Enough

COVID-19 Columns, Cystic Fibrosis News Today Columns

I am going to write something no one wants to hear: Honesty is best when it’s pretty. Sometimes I am that person. I can smile through the suffering. I can ... Read more

January 29, 2021January 29, 2021

I’ve Found Powerful Camaraderie in the CF Community

Cystic Fibrosis News Today Columns

Two of the most powerful words in our vocabulary are “me, too.” Many of us tend to isolate ourselves when our circumstances are challenging. We turn inward rather than outward ... Read more

January 26, 2021January 26, 2021

Confession: Vaccine Politics Are Adding to My Sadness

COVID-19 Columns, Cystic Fibrosis News Today Columns

I am in a bathroom feeling sick, writing about being sick, not wanting to be sick. I don’t want this to be my life or what I’m writing about. I ... Read more

January 26, 2021January 26, 2021

What Will You Do to Ensure Others Aren’t Excluded?

COVID-19 Columns, Cystic Fibrosis News Today Columns

I’ve often written that “the disease itself isn’t the worst part, rather it’s the …” The medication side effects, the childhood trauma, the dread, the blah, blah, blah. Today, it’s ... Read more

January 25, 2021January 25, 2021

The Long Journey of Learning to Love My Own Body

COVID-19 Columns, Cystic Fibrosis News Today Columns

I used to be ashamed about my insecurities. I believed that as a man, I was supposed to be strong. I was supposed to silently hate myself, my appearance, and ... Read more

January 19, 2021January 19, 2021

Why I Broke the ‘6 Feet Apart’ Rule

COVID-19 Columns, Cystic Fibrosis News Today Columns

Staying 6 feet apart is not new to me. It’s not new because I have atypical cystic fibrosis and have been doing it for years. Most people know about this ... Read more

January 15, 2021January 15, 2021

How a Blood Donor Saved My Life

Cystic Fibrosis News Today Columns

Hearing the words “blood transfusion” still sends chills down my spine. The emotional response my entire body felt when I heard those words for the first time from a doctor ... Read more

December 30, 2020December 30, 2020

I Am a Lung Transplant Recipient, and I Had COVID-19

COVID-19 Columns, Cystic Fibrosis News Today Columns

At the start of November, I was infected with COVID-19. My heart rammed repeatedly and rapidly against my sternum, which had been broken four years earlier by lung transplant surgeons. I ... Read more