Cystic fibrosis is a brutal, bring you to your knees, knock your lights out kind of disease. It is literally a fight for your life. Every time you think you have made it to the next round, the bells rings and BAM! There you are again, standing on the canvas ready to push through the pain and stand up and fight.
But, what if you didn't know your opponent was CF? What if every time the bell rang you were standing in the middle of the ring shadow boxing, throwing punches in the air, trying to stay focused on an invisible, elusive enemy that was always just out of reach? That is the battle I fought for 47 years until the opponent took shape and revealed itself.
Everyone with CF has a unique perspective with varying degrees of the disease. That is, everyone gets in the ring and goes 12 rounds, but everyone's battle is different. Most of my life, I did not know what was wrong with my body. Why was I so sick, and why couldn't I get well? Every time CF knocked me down, and I would hear the referee's count, I still got up and took more punches because I needed to stay in the fight to find answers.
I didn't always spring to my feet, and many times I was left bruised and beaten. But, I always made the choice to get up. As a result, during the next round, I was smarter and stronger, mentally and physically. I learned it was beneficial to fall. Each time I fell, new challenges arose, and I was pushed to find new ways to get up, adjust, and adapt to my new surroundings. I didn't know what I was fighting, but one thing was certain: I knew who I was, and I was not going to throw in the towel. I was going to fight.
“One step at a time. One punch at a time. One round at a time.” (Creed, 2015)
My battle began when, as a baby, I had chronic pneumonia that was treated aggressively with multiple antibiotics. Then, at age 4, I fought for many months through a painful, life-threatening brain abscess and surgery. Initially paralyzed on one side of my body due to the immense pressure on my brain, I slowly regained mobility, but, I'm still without most feeling on my left side. More than 30 years later, I learned that this incident was related to my CF: The fluid in my lungs had traveled to my brain, which caused the debilitating abscess.
I didn't develop chronic CF symptoms until my early 30s after I was married and had children. I presented as a “classic” CF case with chronic cough, fevers, sinus infections, pneumonia, shortness of breath, bronchiectasis, hemoptysis, chest pain, compromised immune system, collapsed lung, low body mass index, and so on. My petite frame did not match the low, raspy voice I inherited along with a deep, wet, croupy cough I tried to unsuccessfully hide. Year after year, one infection after another added more stress to my already weakened lungs and immune system. More than 10 exhausting years of being chronically ill went by with no concrete answers. Multiple doctors tested me for CF, but the results were always negative. By now, my cultures were positive for Mycobacterium avian complex (MAC). I wondered, why I couldn't clear this Mycobacteria or any infection from my lungs?
My life was certainly not what I had envisioned for myself or my family. I struggled with guilt, embarrassment, and frustration because I could not give my family 100 percent of myself. I was running at about 30 percent on a good day. But, I had my faith and a family that needed me, so I fought on.
I had all the symptoms of CF but didn't get the tools to start treating it properly until six years ago. By then, I was testing positive for Mycobacterium abscessus (M. abscessus) and was resistant to nearly every antibiotic. I found a doctor who specialized in Mycobacteria who believed that my previous genetic tests identified less than 100 CF mutations. He, along with my CF doctor, thought my CF was a rare, milder, and harder to detect form based on all my symptoms. I took a test that identified the more than 1,700 CF genetic mutations, and he was right! I had two rare CF mutations. Finally, I had a concrete CF diagnosis and began treatment and a new fight.
”You, me, or nobody is gonna hit as hard as life. But, it ain't about how hard ya' hit. It's about how hard you can get hit and keep movin' forward. How much ya' can take and keep movin' forward.” (Rocky Balboa, 2006)
I can't say I was happy to get this diagnosis, but I was definitely relieved to have answers. At least I knew who I was in the ring with. I knew who I needed in my corner and at ringside to help me battle this disease. Any good fighter knows their strengths and weaknesses, and I needed to accept that my body had limitations. It meant that if I had a day at 60 percent, be grateful and run with it!
I had to learn a new normal. I learned to take time to sit still and lean into my faith, family, and friends. There is so much disruption and disturbance with this disease, and I needed to find peace whenever I could. I realized I may not be able to control my body, but I could try to control my mental well-being. It was imperative to rest and regroup my mind, body, and spirit to put myself on a peaceful, purposeful path. Maybe I needed to have a good cry or laugh, be mad or sad, pray, meditate, read, binge-watch a series, or call a friend -- whatever it took to redirect my mind to fill me with passion, purpose, and a positive attitude. The ultimate goal was to get back in the ring, not to stay stuck. I needed to move, even if no one else could see I was moving. I knew I was moving forward into a better place.
I learned to find joy in the little things and rejoice in small achievements, like being able to sing a song in my car and not be out of breath. After I stumbled in the dark for so long, I realized how glorious it was to bask in the light. The big things were still in front of me. It was important to still dream, have hope, and believe. Somehow, the focus shifted from what I had to who I had become and moments of gratitude filled my heart. Life is so very precious, unpredictable, and fragile. I discovered just being in the moment with my family and friends was enough.
I found that in the face of adversity, even from a very young age, I could go to the distance. I could go toe-to-toe with whatever was in front of me. I was stronger than I thought and could persevere through extraordinary obstacles. That empowered me in a very unexpected way and gave me a bigger sense of self. So, bring it on! Hit me with that body punch, but be ready for me to bob and weave and answer with a one-two combination. You may knock me down and try to tear me up, but I will get up every time. I will rise because that's what fighters do.