The first time I heard the term "cystic fibrosis" I had no idea what it was. I was also 18 years old. After years of sinus and GI issues and months of testing, I finally had a name for the thing that was affecting my life so heavily.
I was born before newborn screening became the norm in my state and — due to my mutations — my lungs were relatively healthy growing up. No one in my family had ever been diagnosed with CF, so we had no reason to suspect it. I had had two nearly back-to-back sinus surgeries, at ages 14 and 15, and had sinus polyps, which was unheard of for someone my age according to the surgeon. I could eat as much food as I could find but struggled to gain weight, which was accompanied by constant stomach aches. Finally at 17, I was having such bad stomach aches and bloating that eating became painful and my weight was dropping. My family urged me to see specialists to finally get to the bottom of whatever was going on. I was tested for numerous GI-related issues but nothing was coming back as the culprit. After six months or so of testing with no conclusive answers, one doctor was able to piece together all my symptoms, surgeries and abnormalities and suggested I get a sweat test. It came back barely positive, but genetic testing gave us the assured answer: I had cystic fibrosis.
For a while after being diagnosed, I was really struggling mentally. I felt like my heart was hardening — it was a struggle to find anything positive in this shattering news. There were so many new medical appointments, procedures, and medications.
I didn't know anyone else who had CF. I was still learning about what it was and what it meant for me and my future.
And because I knew my lungs were still pretty healthy compared to most others with CF, I felt guilty because I didn't need to do breathing treatments. It didn't matter that nearly every other bodily system that could be affected by CF was — my lungs were okay, so I had no right to feel a part of the newfound community I was introduced to by the hospital social workers.
A family member told me the news of my diagnosis, and although I was shocked and scared, they said something that has stuck with me since and has helped me on my journey: "You get to paint the color of your own sky every day." I could not control what would happen with my CF or the fact that I had it at all, but I could control the way I let it affect me. I could control the way I viewed it. I could use the hard lessons it taught me as fuel to positively change my mindset and use all the skills I had learned to help other people who are going through hard things. Eventually, I learned the importance of advocacy and belonging. Finding other people online who also had cystic fibrosis was a huge point of connection for me and gave me the sense of community I had been longing for since being diagnosed. Both the online community and my local CF organization encouraged me to see that even though my CF story wasn’t the most typical, it still mattered. I was still able to help others learn about the disease and be an advocate with a voice.
One of the other major helpers for me has been art. Art is my way of composting pain so that something beautiful and new can grow from it. It turns my hardships into something I can manage, name, and transform with color. Initially, after my diagnosis, I started taking photographs and painting and would feel better after creating something when I was having a rough emotional day.
Thanks to a grant, in 2016 while in college I had the opportunity to create a program called "Hope in Focus" that used art and photography as a way to help children in a hospital setting positively deal with their emotions while inpatient or receiving treatment. As most CFers know, hospitals can be unenjoyable, especially when you aren't feeling well. So getting to take the kids on photo adventure walks to the garden or sit with them bedside coloring, painting, and chatting was a huge honor and incredibly fun.
Two years after the project, my now-husband suffered two cardiac arrests in one day. I was there when they happened and was able to start CPR until the paramedics arrived. After he was taken to the ER, we were told to say our goodbyes. Miraculously, after 13 days in a coma and two months in the hospital, he pulled through and has made a great recovery in the years since. One thing I’m grateful for from that time was how my cystic fibrosis prepared me in the ways of medical terminology and advocacy. When something wasn’t happening up to par, I was able to help advocate for my partner to receive better care. And I was able to help explain medical terms to family or friends if the doctor was in a rush and didn’t have time.
Between my husband’s heart failure and my CF, we make quite the pair! And we even get to go to the same wonderful clinic for check-ups, which are now deemed “clinic dates.”
The experience and initial trauma became overwhelming once we got to go home. I would have flashbacks to seeing my partner’s skin go blue and sleep became “that thing I used to do.” It also brought back some medical trauma of my own from a few experiences when I was first diagnosed. I was trying to work full time while caring for my partner and myself, and I felt like “butter scraped over too much bread,” to quote Tolkein. Art had always been my way to express myself and to get out of my own head when hurt and anxiety struck, but this time it felt harder. I would try to paint literal objects, like animals for example, but got so frustrated with myself as my hands shook and my mind couldn’t focus on making the animal actually look like the animal.
Finally, I decided to throw every color in my paint box onto a canvas and created an abstract piece. It was so freeing. I didn’t have to worry about the end result and whether or not it looked a certain way.
The act of painting was cathartic and free from my own judgment. Eventually, family and friends started taking notice of the paintings and wondered if I would sell some. Thanks to their support, I’ve been creating art part-time since then — painting on the weekends and evenings after work. I enjoy giving back and teaching others about CF at art events. I’ve also been able to continue another version of my initial college project, this time called Healing Through Painting, where I’ve been able to teach groups of kids and adults about the freedom of abstract art as a way to process the tough stuff.
I started having more classic lung-related CF symptoms within the last two to three years and was able to start the gene modulator Trikafta®, which I am so thankful for. Since being diagnosed, I’ve learned that so much of life is about perspective. I don’t get to choose how CF will continue to affect my health or take over my body. The kids I worked with at the hospital didn’t get to choose whether or not they had cancer, diabetes, or traumatic experiences. My husband didn’t get to choose whether or not he had a life-altering heart attack at age 30.
I didn’t choose to have cystic fibrosis, but I get to paint the color of my own sunrise each time I wake up. We all do. Even if the new morning is a rough one, we can choose joy in the moment and find strength in each brushstroke.
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