Nicole Kohr — Storytelling and Living with Cystic Fibrosis

Nicole Kohr stands in a courtyard with a big smile and her three children's books in hand

Nicole Kohr emanates positive energy, and speaks so eloquently even while casually chatting. Nicole had a myriad of symptoms since birth, but wasn’t diagnosed with cystic fibrosis until the age of 5. Cystic fibrosis (CF) is an inherited life-threatening disorder that damages the lungs and digestive system. With years of no proper medication and lung damage, she was told she’d only live to 10 years old. During her uphill climb and years of being isolated in hospital rooms, storytelling became Nicole’s lifeline. ABILITY’s Lia had the pleasure of catching up with the author and founder of the non-profit Colie Creations, where their mission is to advocate for patients through storytelling.

Lia Martirosyan: How are you doing?

Nicole Kohr: I’m good, how about yourself?

Martirosyan: Lovely! Where are you right now?

Kohr: I am in New Bern, North Carolina. We are very coastal, like, right on the water.

Martirosyan: Beautiful. Has the weather been kind?

Kohr: A little wonky, but I’m used to New Jersey weather, where it’s just frighteningly unpleasant, so it’s sunny out. I have no complaints.

(laughter)

Martirosyan: A little bit of sunshine usually helps with most everything.What brought you to this idea of Colie Creations?

Kohr: Just to give a little prologue, I am a 29-year-old cystic fibrosis patient. As of June 14th, 2019, I am a bilateral lung transplant recipient. I was born with cystic fibrosis. It’s a chronic and technically terminal illness that primarily affects my lungs and digestive system. I was diagnosed at age five, which meant I have five years of scarring, and I also have two nonsense mutations, which is a very complicated way of me saying that there weren’t many treatments available for patients like myself. So I spent most of my life doing two-week hospital stays called “tune-ups,” in the hospital. I was absent from school a lot, and I think during those times of hospitalizations and sickness, I would write. I was a performing arts Broadway baby, so if I wasn’t on the stage performing, I was in the hospital writing. I think that’s where my love of writing and coping mechanism of writing got started.

Present-day, I am the founder and executive director of Colie Creations Inc. That allows me to do a few things. It’s a nonprofit, and our mission is to advocate for patients of all ages through storytelling. The platforms we produced stories through right now include children’s books. I’ve produced three, and two are on the way. I am currently writing an original musical called “Fall Risk.” We just onboarded a composer who has worked on Broadway shows such as “The Lion King,” “Aida,” very, very talented group. We are also about to do an accessible and inclusive fashion show in the streets of New Bern, North Carolina to bring more awareness to disability and pediatrics in the area. So altogether I’d say my background in performing arts and writing and my journey with cystic fibrosis led to my nonprofit career now.

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Martirosyan: Thank you for that beautiful prologue.

Kohr: Thank you!

Martirosyan: Were your parents involved in theater?

Kohr: I was raised by a single Irish Catholic mother. Her name is Patty. She had no association with the theater whatsoever. (laughs) Neither did I, in the beginning, I was a very, very shy child. I was never diagnosed with neurodivergence, but I definitely had at a very minimum some kind of generalized anxiety. I think a lot of that chalked up to my lack of a diagnosis. I was always sick, always coughing, I didn’t feel well, and so the only people I was comfortable around were my mom and, say, the handful of people in my life who knew that I had CF, because I was a gooky, yucky kid. I always had a respiratory infection or a problem with my bowels, things like that. So it was hard for me to socialize.

So my mom decided to put me in theater to help with the socialization aspect. And I came alive on the stage. It became the immediate love of my life and my go-to coping mechanism. Any performing arts thing. I was either performing in community theater or going to NYC for commercial work or doing ballet classes, tap classes, acting classes, you name it. That was pretty much my whole childhood.

Martirosyan: So you were able to navigate between all of the health issues you were experiencing, and your love of entertaining?

Kohr: Absolutely, yeah. In my youth, once I was diagnosed at five, there were only one or two treatments available for CF patients at that time. Unfortunately, I used and abused them somewhat quickly, but it did help. I had failure to thrive, and then suddenly those two medications alone really helped me excel, and I was a pretty health child up until about age ten. The ironic part about that was that my doctors, when I was diagnosed at five, said I wouldn’t live to be ten, based on older statistics, which have increasingly been proved wrong, thank goodness.

Nicole Kohr with wide eyes and a comedic grin lays on the floor surrounded by all of her medications in the shape of a rainbow

So when I reached, like, middle school, high school age, my lung function started to decline and we started to run out of medications. I would run myself into the ground doing rehearsals and performances and those tune-ups would no longer be a proactive solution, they would be more of a reactive solution. I started to become someone who identifies as a patient. In my childhood I always identified as a performer first, or a survivor, and suddenly labeling myself as a patient was scary. The plan in my senior year was to look for a school that would accept me for a BFA (Bachelor of Fine Arts) in musical theater, but my mom and I had to have a very realistic heart-to-heart that said, “Your lung function is slowly declining to 50%,” and other things, such as diabetes and osteoporosis, started to come into play. I thought, “What will I do about insurance? What will I do if this performing arts career can’t physically be up-kept by my future body?”

So I made the realistic decision to pursue a BA (Bachelor of Arts) in public relations, and that allowed me to work in the nonprofit field, have a 9-to-5, have insurance, and Colie Creations started around that time. I still needed that creative outlet. That’s when I started to write children’s books on the side and things like that, just to again balance out the reality, the coping mechanisms, my need for creative arts.

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Martirosyan: When did you get your bilateral lung transplant?

Kohr: In June of 2019. If I had to pick the most impactful time of my life, it was then, because on June 1st of 2019, I was married. On June 14th of 2019, I received my bilateral lung transplant, only 13 days later, and by—

Martirosyan: So that was your honeymoon?

Kohr: (laughs) In a way! Just prior to that, I would have one call, all from my hospital bed. One would say, “What color napkins do you want for your wedding?” And the next call, five minutes later, would say, “Hey, do you have a living will?” And the next call would say, “Hey, you’re moving up on the transplant list, you might want to cancel your wedding, because we don’t know the timing of these things.” It was a very vulnerable and confusing place to live.

Unfortunately, I think I had become so accustomed to an unhealthy work-life balance that that kind of became normal. It’s become a priority of mind post-transplant to focus on balance and self-care and longevity.

Martirosyan: Quite the experience! After having received that, did you look at organ transplant donor’s a little bit differently, in the sense of promoting that to the general population?

Kohr: Absolutely. In my youth, there were two things that sounded like threats to me. The first was a port-a-cath, and I think a lot of long-term chronically ill IV (intravenous) users and cancer patients, we usually all have a port-a-cath at some point in our lifetime, because our veins are so scarred from frequent IV use that the port kind of sounded like a scary last resort, like you’ve reached a certain level of sickness. But I had my port for 11 years. I cherished it. It was removed during my transplant for infection and immunosuppression purposes, but I loved my port. And the second one was a transplant. A transplant always sounded like a threat, or like, once you reach this stage, we are officially out of options. You are officially in end stage. But that’s no longer the verbiage, and I’m so thankful for that.

A transplant is not a cure, it’s just a treatment option. I highly recommend transplants, because in my experience the statistics are now outdated and there are so many impactful and healthy ways to go about it now. And even just having the conversation so that it doesn’t seem like a threat, it’s just yet another treatment option. I think it’s beautiful.

Kohr throwing peace signs while laying in a hospital bed with a breathing tube in her mouth and an inflatable lung shaped balloon on her chest.

I recently was doing the marketing for my original musical “Fall Risk,” and on Valentine’s Day I wrote that “There’s nothing more romantic than becoming an organ donor,” because February 14th is organ donation day. It’s my favorite!

(laughter)

Martirosyan: So romantic.

Kohr: Yup! (laughs)

Martirosyan: Tell us a bit about the musical. I heard that you got a grant to help produce it?

Kohr: Yeah, absolutely! “Fall Risk” is the name of my original musical comedy. It started out as just journal entries. If we were to flash back to my tune-ups in my elementary and middle school days, I would write lyrics and poems about how I was feeling, because I didn’t tell people that I had cystic fibrosis, so those journal entries were my truth in what I was going through emotionally at my time. As I aged, I would look back at the lyrics and think, “Wow, it’s cool to see where I was at different ages and how I felt about things, how I viewed things.” Eventually I added to those lyrics. I added a book, I added music, and so those journal entries became an autobiographical musical of sorts of me being a perform having CF, doing tune-ups, pursuing a life on the stage, and then ending up having a transplant evaluation and transplant.

It’s gone through so many variations as I’ve aged and as I’ve worked with more professional people. When the Cystic Fibrosis Foundation awarded us that first grant, it became more of a community project, which was wonderful. I had friends I met over Zoom during the global pandemic who were also transplant patients and CF patients had music degrees, and we put together this beautiful score of music. It’s just developed since then, and now we’re on a path toward off-Broadway, where hopefully we can start to send our book of music and script to producers and things like that and see if we can get a stage, get a CD produced and use that show as just another large visibility campaign for cystic fibrosis and Donate Life. I’m so excited that not only is it an opportunity to tell my story, but an opportunity to advocate and still have that creative outlet. it’s been such a blessing.

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Martirosyan: Have you produced it to the degree of knowing how many actors will be in the play?

Kohr: As of right now, 12 actors, but usually what happens in the workshop phase is, a producer will come in and say, “I can put this show on a stage for $80,000 or $250,000, which means you can keep your cast of 12 or we have to make some edits and limit it to a cast of eight.” Something along those lines. So as of right now, it’s a 12-person cast. We have done two shows live over Zoom, because we wanted an outlet for others during the pandemic, and those cast members are a range of advocates, people who were bedridden, but actors in their beds, and now we’re recruiting a more professional, unionized cast. I consider all of them part of the “Fall Risk” family.

Martirosyan: Are you trying to cast individuals with either CF, or disabilities?

Kohr: That would be beautiful. I would love to do so. The only thing that makes the CF casting complicated is that I have CF, and CF patients are not allowed to be in the same room together. If they are, just for infection purposes, we have to stay six feet apart. So just for everyone’s safety, we may purposely not cast a cystic fibrosis patients. But are we open to the discussion, to casting someone in the chronically ill community, absolutely. We would love to show inclusion and diversity in representation.

Martirosyan: Fascinating. Let’s explore your books, can you talk about “My Pants”?

Kohr: Absolutely. “My Pants” is my award-winning book. It’s my second children’s book. I just recently saw “Hamilton” on Broadway with my family, it was Christmas, last birthday present. One line that really stuck out to my family and I was, “Why do you write like you’re running out of time?” That line sticks with me because subconsciously, I think I’ve always written like I’m running out of time because of that initial expiration date that I was given, that I would pass away prior to turning ten years old. I think I always wanted to maybe for survivors’ guilt leave a mark, you know? So many of my friends have passed from cystic fibrosis who were my age now or younger, and I feel this responsibility to tell stories.

The first book I wrote, “Two Cents,” was kind of my coming out children’s book. There’s this piggy bank, and he has all these toys that keep giving him their two cents, and those two cents are weighing him down. I wrote it so that everyone could enjoy it and relate to the book, but there were bread crumbs about my journey through chronic illness. So by the time I made it to “My Pants,” I wanted to put a little of—a few more bread crumbs about chronic illness. “My Pants” is about a neurodivergent girl. Her name is Celana, which is an Indonesian word for “pants,” I figured that would be a cute tie-in. She is gradually being diagnosed with neurodivergence throughout the book, which could be autism, anxiety, SPD (sensory processing disorder), OCD (obsessive compulsive disorder), and because I identified as that as a child and I went through those experiences of anxieties. The book finds a way to show children different coping mechanisms if they’re going through some of the same things. If you have anxiety about an upcoming baseball game, or noises that are too loud, or you’re scared of the doctor. Having a scary doctor is a big theme in the book, and just having a support system with you. I wanted it to be a very awareness- and advocate- heavy book. That was my award-winning book.

And the event that we’re doing soon, the “My Pants” Baby Fashion show, is based on that book. So things like that, where I like to take idioms and personification and a bread crumb of chronically ill journey advocacy and throw them into a children’s book everyone can relate to.

Martirosyan: You did a third book, too?

Kohr: I did. That one is called “Water Your Human.” That is about a little alien boy who wants to prove he is ready to take care of a dog. In order to prove it, he takes his school project, which is a human in a mason jar, think if you had to take the class goldfish home for a week, or the class hamster home for a week, or a plant and care for it, the same concept, except in this case the alien’s taking care of a human. He has him in a little jar, and he’s feeding him pizza and things that, say, a five- or six-year-old boy would take care of a pet that they don’t know anything about. It’s a funny story about empathy and caring for another. I thought that was a nice way to fill in maybe siblings or other members of the support system who maybe need to help take care of somebody else, and they need to be aware of what those needs are.

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Martirosyan: That’s very clever. “You’ve got to remember to water those humans!”

Kohr: Yeah, every day!

(laughter)

Martirosyan: They’re so needy!

Kohr: So needy!

Martirosyan: We’ve covered quite a bit. Is there anything that you would like us to have asked you?

Kohr: Maybe the concept of transparency.

Martirosyan: Can you tell me the concept of transparency?

(laughter)

Kohr: I sure can! Like I’ve mentioned, when I was a child I didn’t tell people that I had cystic fibrosis. This was for a few reasons. One, I didn’t identify as a patient. I wanted people to see me first and foremost as a performer or a writer, I didn’t want the label of patient to affect the brand that I was going for. Two, it was a coping mechanism. If you ignore it, you don’t feel it, right? And the third reason was because the performing arts community and everybody else was really ableist and discriminatory against the label of patient. They treated you differently. The handful of times I was transparent about my illness with, say, someone on the school bus or someone who was wondering why I was coughing or sweating so much, and I told them, they suddenly treated me like their mom’s friend, very respectful to me. Or they treated me like I was made of glass, or like a billboard for inspiration, but not a friend or someone their age who was going to be invited to their party.

That was very hard for me to navigate as a child. It was hard for me to relate to people my own age or people who hadn’t had a certain level of life experience related to healthcare or death. So when I was nearing transplant, around those last days at my work, transparency was needed. The masking had become a detriment. I needed a support system, I needed transparency so people would finally understand what I was going through and where I was at emotionally, where my energy level was.

I told my mom during my transplant surgery and thereafter to show social media everything. It was probably one of the best decisions I’ve ever made in my life, because since then, I’ve had too many people reach out to me with their stories and send love and send me admiration, which I don’t understand. I really only had two choices: I could do a transplant or I could die, those were my options. So people say, “How did you do it?” and I say, “I didn’t have a choice, and you at some point in your life may not have a choice either. If I can do it, you can do it.” That transparency is my new priority, just telling everyone my story and hoping that there’s someone out there who has yet to dive roll out of their chronically ill closet and maybe this will be a coping mechanism for them, just hearing my story or having the bravery to tell their own. Transparency is so important.

Martirosyan: Not so easy for everyone.

Nicole Kohr holding three books with My Pants on top

Kohr: Right, it’s true. It took me a long time, and I’m still dabbling with the pros and cons of it. But I think personally, that support system has helped me very, very much.

Martirosyan: I’m glad for you. We had mentioned a little bit earlier about the idea of casting, trying as much as possible to cast a really diverse and inclusive cast. And when I say that, it’s not just the play, but have you seen much work related to the entertainment industry in casting individuals with disabilities?

Kohr: Absolutely. And the first example of that would be Deaf West’s “Spring Awakening.” If you’re not familiar, I highly, highly recommend it. There is a female lead in the cast who uses a wheelchair and you would never know it. She is one of the most talented people I’ve ever seen in my life. She also starred in “Oklahoma.” She recently released two children’s books. Her name is Ali, and I love and adore her, and I’m so excited to see Broadway start to accept a more diverse cast of people even in very traditional and conservative shows. I’m excited to hop on that train. I want this to be inclusive from a disability aspect, a gender aspect, a race aspect, a cultural aspect. I think everyone needs to be included in the concept of “Fall Risk,” because everyone is a fall risk, maybe not physically, but financially, emotionally, it touches everyone, and so should the casting aspect of the show.

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Martirosyan: Real quick, when you said you would “never know it,” what do you mean?

Kohr: If you were to listen to an album or a cast recording with her on the show, you would never know she was disabled.

I think in the ’90s, when I was diagnosed, being labeled as a “disabled performer,” instead of just a “performer” was very common. At this point in the present day and age, she’s just a performer. Equal with everyone else.

In Deaf West’s “Spring Awakening,” she is onstage in a wheelchair, and she does all of the choreography just like everybody else. It’s just somewhat adapted for her. She killed it.

Martirosyan: You’re talking about Ali Stroker, right?

Kohr: I am, She’s amazing.

Martirosyan: Yes. What’s your next project?

Kohr: I’d say the biggest project is moving “Fall Risk” from script to stage, to the next professional milestone. And publishing my next children’s book, which will probably come out Thanksgiving time, and then continuing to host in-person accessible inclusive events. Those are my next big things.

Martirosyan: Can you expand on that? When you say “events”?

Kohr: Sure. This “My Pants” Baby Fashion show, we’ve done a virtual fashion show before, but this will be our first in-person event. It’ll be a fundraiser for our annual fund. We purposely blocked off a street in our downtown, and we’ll use that flat surface as a red carpet runway walk. The street will be cordoned off, and we will have children ages 0 to 12, whether they are wheelchair users or babies in a wagon or siblings holding siblings’ hands, everyone in that age range can be in that show. I’ll be a safe, nurturing environment for all of these children and pediatric patients to take part. Outside, so there’s no risk of infection, six feet apart, things like that. And everyone can watch for free. Myself and Miss North Carolina 2022 USA are going to host. We’ll have a DJ. It’ll be a fun way to let the kids take part in something outside and bring awareness to my nonprofit and the book. It’ll just be a fun day.

Martirosyan: Wonderful. And your next book is called?

Kohr: My next book is called “Last Straw.”

Martirosyan: Lovely. You said “events.” The events you’re putting together are basically connected to something like a book that you’re doing, or the play?

Kohr: I’d say it’s all-inclusive under storytelling and patient advocacy. During the show we’ll read off everyone’s favorite book, advertise “My Pants,” talk about the importance of storytelling in patient advocacy. It’ll be a baby fashion show, but we’re using the speaking platform to advertise other things we do as well.

Martirosyan: In this moment, where is Nicole?

Right now it’s just priority number one, self-care, all of my meds, all of my doctors’ appointments, and number two is all of my writing. I write for two columns, I run my nonprofit, which includes general nonprofit administration and writing children’s books and producing and writing “Fall Risk.” Basically writing and health, that’s what I do all day!

coliecreations.org

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