Cystic Fibrosis News Today Columns

July 10, 2020July 10, 2020

I Don’t Always Wear the Badge of Bravery

In my previous life (pre-double-lung transplant) I was the bravest I’ve ever been. Before my transplant, the most important piece of my identity was bravery. I was brave in the ... Read more

July 7, 2020July 7, 2020

I Don’t Want to Die Because You Don’t Like Masks

Cystic Fibrosis News Today Columns

Wear a mask for me. The more I see friends post anti-mask passions as if they were a political statement, the more I wonder if they’ve ever met me. It’s ... Read more

June 30, 2020July 1, 2020

We Need Better Representation in the CF Community

Cystic Fibrosis News Today Columns

As a health writer, I hesitate to cover topics that don’t fit directly into my “brand” because it’s bad business. I’ve cared about human rights for as long as I’ve ... Read more

June 30, 2020July 1, 2020

I’m an Adrenaline Addict, but It’s Time to Minimize Risks

COVID-19 Columns, Cystic Fibrosis News Today Columns

Many people think I’m reckless … and I guess I really kind of am. I blame a doctor for that. Years ago, I had a showdown with yet another infection ... Read more

June 26, 2020June 29, 2020

I’m No Longer Resisting a Rest

Cystic Fibrosis News Today Columns

Earn your rest. Earn self-care. Earn taking care of yourself. The list is endless for the unrealistic standards forced on us by society. The United States is driven by an ... Read more

June 23, 2020June 24, 2020

Cystic Fibrosis and Herpes Are Not the Same Thing

Cystic Fibrosis News Today Columns

I don’t have herpes. I need to clarify this. I don’t have herpes, or Hep C, or cancer, even though many seem to think I do. Although I empathize with ... Read more

June 16, 2020June 16, 2020

Death Is Not a Good Diet Plan

Cystic Fibrosis News Today Columns

If I die from anything, it’s going to be food. I have gone without food for long periods of time. It’s something many people with cystic fibrosis or other chronic ... Read more

June 16, 2020June 16, 2020

Finding Fate in the Fallout

COVID-19 Columns, Cystic Fibrosis News Today Columns

In my last column, I described how nearly dying made me a better person. That might imply that I flipped a brain switch to become a more rad version of ... Read more

June 12, 2020June 13, 2020

How I Regained My Independence During the Pandemic

COVID-19 Columns, Cystic Fibrosis News Today Columns

As restrictions from COVID-19 lift ’round these parts, my urge to get back to business as usual has intensified. I’m lucky to live in a state that’s been less affected, ... Read more

June 9, 2020June 10, 2020

What Recent Exposure to the Virus Means to My Daughters

COVID-19 Columns, Cystic Fibrosis News Today Columns

I’m supposed to stay away from my children. They may have accidentally been exposed to the coronavirus, but we won’t know for sure for a couple of weeks. The chance ... Read more

June 8, 2020June 9, 2020

We Need to Recognize Diversity in the CF Community

COVID-19 Columns, Cystic Fibrosis News Today Columns

A lot is happening in the world right now. We are in the midst of a pandemic and a civic revolution. I believe it is important to use my voice ... Read more

June 1, 2020June 2, 2020

Why My Service Dog Is Staying Home

COVID-19 Columns, Cystic Fibrosis News Today Columns

COVID-19 has uprooted my life in many ways. Some are obvious, some are not. Like many people with disabilities, I have been in isolation since the outbreak began. Shortly after, ... Read more

May 29, 2020May 29, 2020

Let’s Unite to Ditch the Charade of ‘I’m Fine’

Cystic Fibrosis News Today Columns

Confusion over how we “should” react to suffering wreaks havoc in the mind, often triggering a shame response. We so often utter the words, “I’m fine,” though that performative response ... Read more

May 26, 2020May 27, 2020

I’m a Dancer but I Can’t Walk Right Now

COVID-19 Columns, Cystic Fibrosis News Today Columns

My body doesn’t work. This isn’t new information. But every time I get new information about a new way it doesn’t work, I feel a surge of emotion. “I think ... Read more

May 26, 2020May 26, 2020

How Dying Taught Me to Live

COVID-19 Columns, Cystic Fibrosis News Today Columns

His little ribs rose, then fell, then rose, then fell, then stayed still. The spark left his green, curious eyes — I swear it wasn’t a trick of the light. ... Read more