In the spirit of Kendall Roy, I wonder what life without CF would be like

Living with a terminal illness such as cystic fibrosis (CF) can leave one asking questions like, “How would my life be different if my cystic fibrosis were cured?”

Many of us would love to be cured of CF, but it’s difficult to approach the idea of what life would be like if we could leave the disease behind. To some, that feels like abandoning an identity.

Amid the multiple hospitalizations, surgeries, and failures of various body parts along the way, a type of bonding with trauma seems to develop for some people with CF. These wounds become part of our being.

Because my CFTR mutations are on the milder side in terms of the disease severity they cause, I hadn’t before wrestled with the complicated legacy that cystic fibrosis has inflicted on my body and mind. But the wildly popular HBO series “Succession” got me thinking.

Recommended Reading

June 1, 2023 News by Andrea Lobo, PhD

Kaftrio effective in CF patients with advanced lung disease: Study

The Roys’ poison

(Spoiler alert: I’ll be discussing “Succession” plot lines and the series’ ending.)

In “Succession,” one of the main characters, Kendall Roy, fought to keep a media conglomerate in his family instead of selling it after the death of his father, Logan Roy, who founded it. When Kendall was 7 years old, his father had promised to pass the company down to him, and Kendall’s entire life had been building toward that moment. In the end, though, he loses.

In the final episode of the series, Kendall is freed of the burden of being CEO and is flush with billions of dollars to pursue his passions. But he feels lost, not knowing what to do with his life. In the final shot, Kendall stares out at the river, feeling devastated. He’s struggling to let go of the trials he’s held on to for so long, even if they caused him a tormented life.

Earlier in the show’s final season, Kendall asked his sister, “Does the poison drip?” He wondered if his father’s worst traits had made their way into him. Kendall holding on to the company was as much about thinking he’d finally gain power and independence from Logan as it was about the burden his father had placed on him. In his drive to defy his father, he poisoned himself. But the better parts of his character were also formed by these trials.

An unknown path forward for CF

With CFTR modulators, which are used to treat specific types of disease-causing mutations in CF, many patients who once faced almost certain premature death can now live longer without many of the medical restrictions they’d faced. Yet regardless of medical advances, this freedom will remain complicated by past medical trauma from arduous doctor appointments, a constant struggle to breathe, and the need for copious amounts of pills just to get through the day.

What poison does CF drip into our lives long after our physical health has stabilized? What burdens from coping and fighting no longer make sense to hold on to in this healthier season? What should we release, and what should we keep?

I’d release some reactive parts of me. When I have a stomachache or cold, for example, I anxiously think it might be pneumonia or sepsis. Due to my medical history, I leap to worst-case scenarios, and it takes a lot out of me to stabilize that panic.

On the other hand, wrestling with this disease has formed some of the best parts of my character. CF has made me resilient, and being a part of the wider disabled community has opened my eyes to all different kinds of thriving, regardless of circumstances. I wouldn’t want to lose these gifts by taking health for granted.

I would take a cure for cystic fibrosis, but I wouldn’t want to act as though I never had a disease by taking health for granted and forgetting the parts of me that were formed by the fight. Too many of my favorite parts of me were forged by it.

Kendall may not have found his life’s purpose by staring at the river from New York’s Battery Park, but looking out at the water always provided him with clarity during all four seasons of the show. He will eventually figure out how to build his life again. He just needs to realize that although it’s time to release his burdens, they did shape the parts of him that will carry him forward.

Maybe I, too, should look out at the river and ponder the same, if that cure does come one day.

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.