I’m finally giving myself permission to live fully again
Registering for a 5K was a breakthrough for my mindset and new lungs
“I’ve never run a race, but I want to,” I said to myself when I saw a registration link for the 27th annual Gift of Life Donor Dash, held last month in Philadelphia.
I’m a 52-year-old with cystic fibrosis (CF), insulin-dependent cystic fibrosis-related diabetes, stage 3 chronic kidney disease (with only one remaining kidney), and a double-lung transplant, which I had three and a half years ago. Feeling ambitious at that moment, I clicked the box to register for my first 5K run. I felt as if I’d won the race just by signing up.
My double-lung transplant took place during the COVID-19 pandemic. Ever since, I’ve felt stuck in an alternate world, somewhere between being overly cautious and practicing my pre-pandemic mindfulness. The pandemic threatened the existence of all of us with CF. Waiting on the transplant list during that time required the utmost vigilance.
While spending 21 months on that list, I’d created a delicate balance of exerting effort and then resting. This pattern kept me safe — meaning stable and out of the hospital. But after the procedure, I often questioned if I were fully living with this new gift of life.
This year, however, I finally felt I was awakening to the idea of fully living again. It’d taken much longer than I’d expected. I’d been out in the world and feeling pretty well since the transplant, but something had been holding me back, and I couldn’t put it into words. What if I get hurt, I wondered, or overdo it and create an issue that disrupts this blessing I’ve received? If that happens, will I have let my organ donor down? Will I be able to receive a second transplant if needed?
Seeing the ad for the Gift of Life Donor Dash flipped a switch inside me. After feeling fragile and vulnerable for so long, my soul was giving me permission to push myself to find out what this new body could do. That alone felt like a freedom I hadn’t experienced since I was in my teens. My daughter and my sister quickly signed up to run alongside me.
Just as I’d done when I was listed for transplant, I started training on a treadmill. With my native CF lungs, I couldn’t tolerate walking far. While on the transplant list, I’d walk daily, sometimes for just a minute, because I knew exercise was vital as I headed into the surgery. Every few days I’d walk for an additional minute. It was all I could do at the time, but I’d remind myself that it was something. As the weeks went by, my endurance improved.
When preparing for the run, I’d walk for a few minutes, then run for a few seconds, then return to walking. My daughter sent me a 5K training schedule. Though I couldn’t run for the times it recommended, I used it as a guide. I slowly increased my running time, if only by a few seconds.
The day before the run, the schedule said to rest. I reflected on what registering for this event did for me. It hit me how far I’d come, that I was still here and, for the moment, feeling well. I sat all day in mindful thoughts, giving myself permission to celebrate whatever I could accomplish. I told my body how proud I was for whatever it could do the next day.
Race day
Race day arrived, with my daughter and sister by my side. As we stood in the large crowd waiting for the sound of the horn to start the run, I felt a nervous and excited energy bubbling up inside of me. I knew I couldn’t run more than two minutes at a time, but I relished in the moment that I was there.
I walked about 80 percent of the time with short intervals of jogging, but I’m thrilled to have completed the event. So many people were there, a mix of organ donation recipients and donor families who’d lost a loved one. Everyone was at different physical levels, showing up to support the gracious, selfless miracle of organ donation.
I soaked it all in while I was on the course, surrounded by this new community that included me. My daughter passed me as the second half of the course turned toward the finish line — where we’d started. She was smiling and waving at me. My eyes filled with tears as she saw me doing the best I could do.
The proceeds for this yearly run benefit the Gift of Life Transplant Foundation, which supports programs and activities for transplant recipients and donor families. I loved honoring my donor in this way, and I plan to do my best again next year.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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