Nicole Kohr shares her journey living with cystic fibrosis while navigating college. She reflects on letting go of Broadway ambitions, finding new purpose through communications and advocacy, and the lessons she learned about self-advocacy, balance, and resilience along the way.
Transcript
Hi everyone, my name is Nicole Kohr. I am a 32-, almost 33-year-old cystic fibrosis patient, and I think all of us are going through this journey of navigating what cystic fibrosis looks like now.
Whether you are a cystic fibrosis patient, a parent, wherever you are on your health journey, if you’re in school, which is the topic I would love to talk about with you today.
So once it was time for me to choose my college career, I struggled. I was a Broadway baby my entire childhood. Musical theater and storytelling — all of that was really what gave me the drive to keep going. To be compliant, right? To push forward.
And unfortunately, my lung function did not agree with the trajectory on which my dreams wanted to go — right?
So I really wanted to be in the musical theater program in maybe New York or New Jersey. And although I did get into those programs, my body was declining so rapidly that my mother and I had to have a very realistic discussion about if that was appropriate.
Could I have pushed myself? Yes, I could have. But would I have insurance if I was on Broadway in the ensemble? That was a huge consideration. Would Broadway allow me to be out for a two-week tuneup with no notice? Probably not. It’s a very competitive market, and I, at that point, had to be a bit pessimistic about what my future looked like.
And so it’s at that point I decided to disregard my Broadway musical theater dream, and I turned it more toward communication.
I did have moments where I would see the best friends I’d grown up with make their way toward Broadway and perform in all of the college productions. However, I did find my niche because as much as musical theater was the road I wanted to go, communication is still under the umbrella of storytelling — right? And storytelling is the strongest form of advocacy.
And so, regardless of which way I went, whether it was performing arts or more the public relations end — which is where I ended up — I was still a storyteller. Right? And so that’s the approach that I took moving forward.
And overall, in terms of back to school, in terms of balancing school normalcy with cystic fibrosis, I found you can still achieve your dreams. They just might not look like what you initially planned.
I was not ready for college in terms of self-advocacy. I was ready in terms of life experience, but my mother handled the insurance calls, the doctor calls, nurses, any kind of preparation. And therefore I had a huge reality check when it came to taking care of myself.
I did live on campus in a dorm. I’m very thankful that I had that experience because as an adult with CF, that was kind of the bridge between “my mother takes care of me” and “I have to figure out how to self-advocate.”
And that’s where a lot of my advice to other CF patients comes in, is that if you have an oxygen tank, you need to think about how you’re going to commute from point A to point B on campus by yourself if you don’t have the strength to carry this oxygen tank and your bag of books and, you know, still look trendy in your college outfit.
It was, it was a lot to consider, right? Especially at the age of 18 to 21. You’re not in the mindset to think about your oxygen tank. Right? And so you really have to learn how to wear multiple hats when you’re advocating for yourself in a school capacity.
I did have a nurse through the disability department on campus, and so whenever I had to access my port-a-cath, whenever I needed a midline or a PICC line, I went directly to her. That way we had a camaraderie already. She already knew my medical history, and it was a little bit more on the down low. I know a lot of cyst-ers and fi-bros, who myself included, who kept their cystic fibrosis secret.
There were pros and cons to that. The pros being, I felt like I could live an average social experience during my school career. People do treat you differently at that age when you reveal a life-threatening diagnosis.
You’re either treated like you’re made of glass, they shy away from you, or they don’t know what to do with that information because it’s different. And a lot of people at that age, thank goodness, don’t have any experience with sickness or hospitals. Therefore, pregnancy is pretty much the only reason they would know that a woman would go to the hospital. I had that experience a lot too.
And so if you are comfortable being a bit transparent about your experience, it will become more relatable to the people around you. They will be more comfortable approaching you with questions, especially if you’re open to them.
So in college, for example, when I was still hiding my true identity, I found having cough attacks was a huge anxiety booster — like, oh my god, if I cough they’re going to think I’m sick. They’re going to think this. They’re going to think that.
I had to think of ways to elevate the head of my dorm bed so that I wasn’t laying flat all night. I had to think of ways to hide all of my nebulizers and my nebulizer solutions and all of my pills so that I just don’t look like a pharmaceutical company in my dorm room. I didn’t want questions, right? I just wanted the normal experience.
And what I took out of that is that you can have both. I think going back, if I had a little more self-confidence about my journey and that it’s OK to be chronically ill at school, I would definitely try to educate the people around me and be open to more questions. That way, self-advocacy is more of a group project — right? It doesn’t just have to be me looking out for me, or feeling like I have to hide something, feeling like I have to mask.
Then you would have this friend group who is there to support you because they understand your needs, your wants, and your potential.
If you have all of those things, my No. 1 advice for going back to school if you have cystic fibrosis is to listen to your body. I believe you know your body best, and as much as science and research has kept me alive — right? — and furthered my journey, I still know the balance within my own body of what I’m capable of.
If my body is telling me to rest, it’s time to rest. If my body is telling me I can push myself, I will push myself. And if you can find that balance between yes, I can play soccer after school and I can be part of the Rotary Club, then anything truly is possible.
But if your body is telling you that you need IV antibiotics, or that you need to change your enzymes, you need to listen to that as well, because you don’t want your body to expire before you can reach your full potential.
So keep working on finding that balance. It will look different for every person. It will look different every day, right? But as long as you listen to yourself, you can achieve anything in school.
