Originally posted on Uniquely Me! by Shannah Weller
https://uniquelyme.shannahweller.org/2020/08/meet-nicole-sigur.html
After being diagnosed at age five with Cystic Fibrosis (CF), Nicole has waged war with her health and the challenges CF brings (I know them well, as a former care giver of a sibling with the disease)! But being the warrior queen that she is, she found a way to literally laugh in her illness’ face (hehehe take that CF!) combat negative thinking , and inspire others in the CF community, by using her gift in theatrical arts combined with one of her passions- comedy.
Let’s jump right into getting to know Nicole!
SW: Can you briefly describe what it is like to live with CF?
NS: “Cystic Fibrosis (CF) is a genetic, progressive, and life-threatening disease. It primarily affects your lungs and digestive system due to an overwhelming amount of mucus. I have always described living with CF as a never-ending load of laundry. Certain times are completely overwhelming while others are manageable. Brand name (genetics) plays a big factor, as does one’s mix of antibiotics (detergent), and one’s need for a lung transplant (a new washing machine). Modern day, time of birth also plays a significant factor. I was born in 1992, at which time, the most groundbreaking discoveries about cystic fibrosis were its connection to salt and the defective CF gene and its protein (CFTR). More treatments are available now. Despite having all the by-the-book symptoms from birth, including consistent respiratory infections, a ravenous appetite but inability to gain weight, unhealthy digestion, and salty sweat, I wasn’t diagnosed until I was five years old. I was hospitalized throughout my entire childhood, at least five times per year for a minimum of two weeks. I would do home iv’s, school myself because I’d be home sick so often, and required a lifesaving double lung transplant on June 14, 2019. I was 79 pounds with an 11% lung function at the time. Despite all of this, my mother always taught me how to “live amidst the trauma”, so I never let CF hold me back. I participated in regional and community theater as early as six years old. I even have some TV, commercial and radio under my belt. I graduated at the top of my class with a degree in public relations. I’m certified in the theory and practice of child life. I’ve vlogged and collaborated for some of the top Cystic Fibrosis organizations and won awards for my advocacy. Most importantly, in June of 2019, I was able to marry the love of my life, 13 days before my bi-lateral lung transplant!”
SW: Were there times CF made you feel different from your peers (growing up, now)? If so, when did you become aware of that feeling?
NS: “I never fit in, but that’s the secret formula to becoming famous. Right? I hope? I felt so out of place, in fact, that kept my disease a secret from the world. I was always way too old and graphic for my age. Having to endure trauma as a pediatric patient resulted in a witty and dark sense of humor. Cracking a joke about my funeral at the age of 6, however, did not always land with my audience. I also had much thicker skin than others my age, and rarely related to their frustrations. Classmates, roommates, and eventually coworkers would all vent to me about their cold or something that I considered “a health day”. Meanwhile, I was secretly running an antibiotic IV under my desk and measuring the amount of blood I was coughing to see if I could hold out for the meeting at 3PM. While difficult at times, these experiences gave me the opportunity to learn how different people deal with disabilities. It was like being undercover and getting the inside scoop on how different people feel. It helped me grow as a person and learn new perspectives.”
SW: Has having CF ever effected your self-esteem/ level of confidence? If so, what do you do to build yourself back up?
NS: “Of course! My self-esteem was all over the place throughout my youth. For one, although I was lucky enough to have an extremely supportive mother and extended family, I was still a girl. I felt I had to meet this standard of sexiness and approachability. I managed to upkeep “the standard” for a few years, but I became more symptomatic as I aged. Yes, CF is an invisible disease, but I developed a smell that I could not disguise due to certain medication. I always had a contagious sounding cough and an IV popping out. I would sweat through my clothing. I’d be absent for weeks at a time. It was embarrassing, depressing, and exhausting. I had no choice but to find alternative ways to feel attractive and confident. Rocking the unique and quirky look worked best for me. Bright blue hair and an eclectic wardrobe gave me a bit more freedom. My lack of confidence also lent itself to my desire to hide my disease. Telling people about my disease never worked out in my favor. Those who found out about my CF through the grapevine treated me like I was “an inspiration” instead of a potential girlfriend, or like I was going to break if you touched me. My personality and mental health craved the opposite: an opportunity to achieve success without any accommodations and a distraction from the IVS. You have to find your own way of creating the same outcome abled bodies achieve.”
SW: How have you overcome challenges CF has presented in terms of achieving goals/ dreams?
NS: “My mother taught me from a young age that if I wanted to make it far, I had to accept that the world would not cater to my accommodations. I had to find creative ways to make things work. This gave me this natural ability to think ten steps ahead. I taught myself different subjects by doing hands on activities with my mom when I was hospitalized for extended periods of time. Yes, this includes lab experiments! I’d have 30 minutes to learn a dance that my class had several weeks to learn. Overall, I had to be very flexible. Keeping my illness under wraps also played a huge part in my adaptability. It helped me navigate the world through strategic eyes. I would find ways to hide IVs under my clothing. I would choose colors and fabrics that didn’t show sweat. I even adapted to different career paths. I always wanted to be on Broadway, but I had concerns about my worsening disease and insurance, so I decided to major in public relations and media. Thank goodness for that because I was diagnosed with mycobacterium abscessus in my junior year, and I had to administer six months’ worth of IVs. With the help of my mom and (then) boyfriend (now) husband, I was able to graduate on time at the top of my class. My adaptability as I navigate my identity within the theater community. For now, I am having the time of my life behind the scenes as a writer, lyricist, and producer.”
SW: You wrote a comedy musical! Tell me all about Fall Risk. How did you successfully turn something as serious as CF into a comedy?
NS: “I did! I’ve always loved writing. I’m obsessed with musicals, lyrics, journaling. I’ve attended Broadway shows several times a year since I was a toddler. I’ve been on stage since age six. I used to make my friends perform plays or songs that I wrote. Eventually, my obsession became watching documentaries about how Broadway shows are made. When I was sixteen, I heard Lin Manuel Miranda say, “you should write a show that you want to see.” I wanted to see a show about cystic fibrosis. My only requirement: it had to be funny. So, I wrote the first draft of my cystic fibrosis musical. I called it Just for Claps, a play on words – clapping meaning percussion (a therapy used for CF patients) and clapping meaning applause. No one got it. Plus it was very one-sided in its context. After years of growing older, growing sicker, and studying different sides of the healthcare community, I had copyrighted (what felt like) the 900th version of Fall Risk, a musical comedy about cystic fibrosis. It was very important to me that the show represent everyone’s perspective – the patient, the sibling, the parents, the friend, the doctor, and so on. It took a lot of strategic character development to turn my real-life experience with CF into a comedy that represented all kinds of people within the chronically ill community. I wanted to drive home the point that there is no one-size-fits-all when it comes to a disability. I also challenged myself to make it humorous because humor is how I cope with illness and I know there’s an entire community of people who feel the same. Myself and one of my best friends, also named Nicole, were awarded the Cystic Fibrosis Foundation’s Impact Grant one day before my wedding on June 1, 2019. Our 25 page document explaining why this musical was so important led to a worthy budget! One year later, we have an executive board of CF patients and CF advocates who wrote and performed Fall Risk The Musical on Youtube. Now, onto draft two. Then… Broadway!”
SW: How do you think Fall Risk has impacted the CF community?
NS: “One word: inclusion. Our team aims to be as inclusive as possible, not only with the story itself, but the extent to which people can participate in its development. We’ve had chronically ill people from all around the world read the script and give feedback, sing demo tracks, audition for our show over zoom, perform the show over zoom, submit artwork, etc. Not only did we want this show to bring awareness about cystic fibrosis, but we wanted it to bring opportunity. Now anyone around the world can participate in its development, its performance, and even its viewing. There is something for everyone.”
SW: You also wrote a children’s book! What was the inspiration for that?
NS: “I did! I imagine everyone gets annoyed when someone gives them their “two cents”. I found it particularly annoying when people would give me their “two cents” about my cough or some ailment. I’ve had strangers of the street stop me after hearing my cough and tell me “smoking kills” or tell me that “juicing and family support will take care of that cough”. Thank you for your two cents, but I don’t believe Tropicana and a group hug will evade stenotrophomonas maltophilia. And I never smoked, I was born this way. I decided to turn this everyday annoyance into a children’s book. I love puns and plays on words, so I decided to personify the concept that toys in a toy store keep giving a misunderstood piggybank their “two cents”. Admittedly, it’s also incredibly fun when a self-proclaimed healthcare expert tells me that I’m holding my nebulizer wrong. I usually just thank them and direct them to my book’s link on Amazon.”
SW: Two Cents is clearly making a difference in the CF community and in children’s lives. But I must ask, why a pig as the main character?! So cute!
NS: “Thank you! I thought the literal interpretation of “two cents” made the piggybank a very natural protagonist in the story. A piggybank is also very neutral, an object to which everyone can relate. The name Koppig translates to “stubborn” in Dutch, an adjective that describes myself and the piggybank perfectly. Plus, who doesn’t love pigs? It’s such a cute character for a book cover! From an artist perspective, because the piggybank is pink, I made him male.”
…….. I have no words. Shook to the core!
Honestly, how outstanding is she?! Nicole, you’re beautiful, powerful, and truly are an inspiration! You’re work is making such a difference, and I’m honored to share your story. Keep up the life-changing work girl! #wearecfwarriors