‘How Far I’ll Go’: Proving My Rare Disease Doesn’t Define Me

Nicole Kohr avatar

by Nicole Kohr |

Share this article:

Share article via email
A graphic depicting a woman on a stage with the words

Does my disease define me?

I’ve been battling this complex question since I was diagnosed with cystic fibrosis at age 5. Most of my CF friends would say no. The disease is a part of them, but it doesn’t make up their entire identity.

While I’d never want to be defined by my oxygen saturation or the number of times I’ve been hospitalized, when asked whether my disease defines me, my answer is … a little.


I want to be defined by the things that happen in between treatments, like my performing arts career. My love of performing began due to my family dynamic. My family included an overworked and nurturing mother, two sassy grandparents who were born and raised in New York, and an uncle who worked in information technology and recorded everything I did. The only child who coughed a lot, I was the center of attention.

My family would endure hours of my Shirley Temple impression as early as age 2. Being diagnosed with a disease that would statistically kill me by age 10 just meant that I got more applause for these performances. Therefore, performing was meant to be, right?

Recommended Reading
cystic fibrosis care | Cystic Fibrosis News Today | physical activity | illustration of adult and child running

More Than Half of Kids in Study Show Poor Cardiorespiratory Fitness

On the flip side, hallway sponge baths and conversations that took place on a commode forced me to become comfortable with my body. Without this, I wouldn’t have been as courageous or as animated onstage.

Performing was also my escape from the medical world. Long stays in isolated hospital rooms made grueling rehearsals a place that I wanted to be. Hiding my disease from the theater community and knowing I was there against my doctors’ wishes gave me the drive to push myself and make sacrifices. Would I have been as passionate if theater was easily accessible?

My body

Short people tend to be known for their sass, but I was supposed to be tall. However, disease-related issues such as malnutrition stunted my growth. Did this add to my level of sass, or was I destined to be sassy, regardless of my height?

The same goes for my weight. Cystic fibrosis blessed me with two helpful symptoms in my childhood. I was thin, and I could eat whatever I wanted due to my need for calories. I didn’t have to worry about eating a healthy diet or being bullied for my weight. I could down an entire bucket of KFC and be Instagram-ready immediately after. Would this have been the case if I didn’t have cystic fibrosis? Or, would my membership to the skinny-girl club have been challenged by food and hormones?


My dark humor is a coping mechanism. It helps me battle the everyday trauma of new diagnoses, gross symptoms, pain, tough calls, and death. Without all of the trauma, I’m not sure I would have been as mature or knowledgeable. I also wouldn’t be as strong or tolerant — skills I developed to survive.

My naiveté would likely be my guiding light, and I’d relate more to people my own age. But would that normalcy have resulted in a lack of humor?


I’ve always been a writer. I wrote the school plays in elementary school and I journaled every day. After a career of performing onstage, I like to think that I would have ended up behind the scenes eventually. Still, the only thing that prevented me from pursuing a degree in musical theater was my declining health. Did I only resume my writing career because I couldn’t pursue a career onstage?

All of this made me think of “How Far I’ll Go” from Disney’s “Moana.” Her emotional battle between fulfilling her duty as chief and longing for the sea is similar to the way I’m pulled between the chronically ill and theatrical worlds.

“Every turn I take, every trail I track,

Every path I make, every road leads back

To the place I know where I cannot go,

Where I long to be.”

I am who I am regardless of my cystic fibrosis. My goofy personality, my love for performing arts, and my admiration of Broadway all existed before my diagnosis. That’s how I want to be defined.

However, part of my personality and life choices were shaped by my journey with cystic fibrosis. Living with a rare disease doesn’t define me, but it does impact which turn I take.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.


Paul met Debbie avatar

Paul met Debbie

Very well written. I would say your person(a) is defined or influenced by all these things you mention, and many more, including CF. You describe this very well.
For me the next question would be: are You defined or influenced by your person(a)? I can say that I thought I was for a short time in life, after which I found out that I wasn't. Nothing personal really could define me, because this person was only a figment of the mind, a sort of mirage. A bundle of conditioned reflexes that believed in its own illusory existence in a self feeding loop of confirmation. When that fell away, was seen through, the real Journey of life began. Which turned out to be a free dance, because there was no agenda and no destination, it was its own purpose and choreography. I call it freedom from the mind. So the question is not what defines me, but who am I, really, beyond all definitions. It never fails to amaze "me".


Leave a comment

Fill in the required fields to post. Your email address will not be published.

A Conversation With Rare Disease Advocates

Your CF Community

Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.