Bowling helps me cope with unpredictable PNH symptoms

I never know if my days will bring a strike or a gutter ball

Erin Fortin avatar

by Erin Fortin |

Share this article:

Share article via email
A graphic illustrating a woman rolling a stone up a mountain on the left side, then celebrating it reaching the top on the right side.

My husband, John, and I recently started bowling with friends, and we’ve been enjoying it. Time seems to slow down when you walk up to the lane, take a deep breath, and line yourself up with the pins. As you step forward and lower the ball in a backward motion, you can feel whether it will be a good throw before the ball even touches the ground.

It takes a perfect lineup of events to get a strike: the right number of steps, correct finger placement, and an appropriate amount of force. Sometimes it goes your way, and sometimes it doesn’t — no matter how hard you try or practice.

At one point while we were bowling earlier today, I found myself standing alone in front of the lane, with the sounds of public chatter behind me and pins flying in the lanes next to me. I didn’t care if I got a strike or a gutter ball. I didn’t feel pressured by competition or the need to beat a certain score; I focused only on doing my best. The outcome didn’t determine whether I was having a good time.

Recommended Reading
An illustration showing a magnifying glass examining a checked-off box on a list of boxes, with and without check marks.

PNH symptoms remain despite treatment with C5 inhibitors: Survey

Going with the flow

This mindset is so symbolic of how I often feel with paroxysmal nocturnal hemoglobinuria (PNH). Being able to cope with the unpredictability of my disease was a skill I learned quickly. My symptoms would appear at the most inopportune times, but there was nothing I could do except to be OK with it.

Each day with PNH is like a bowling frame. I could line everything up to get the most impressive strike, but with just a slight flick of the wrist, the ball curves right into the gutter. Yet no matter how few pins I knock down, I’ll always have an opportunity to try again in the next round.

During the game, my scores were on both ends of the spectrum. Some frames, I knocked down only one pin, while other times I got nine. I began to appreciate the element of surprise after each ball, because I would either do well or terrible, which is similar to my everyday life. Whatever the outcome, I just have to go with the flow.

In terms of the physical aspect of bowling, my energy and strength declined consistently, lasting only two games while the rest of the group ended up playing three. I was disappointed to feel myself approaching my limits, knowing I would have to bow out. But it is a warming feeling to be surrounded by friends who understand that I need to stop earlier than them, and who don’t make me feel any less because of it.

A new friend was in the group tonight who wasn’t aware of my PNH diagnosis. At first, he kindly encouraged me to continue, until I used it as an opportunity to explain my condition and why I tire easily. It was nice to share this important part of my life, but it can be awkward finding the right time to bring it up. I’m happy this occasion went smoothly.

I’m so grateful to be able to participate in not only a physical hobby, but also a social outing like this. As I underwent medication changes the last few months, my energy level was difficult to manage, leaving me socially unfulfilled. But by respecting my body’s limits and being in a safe environment with my husband and friends, I was able to join in on the fun.

Note: PNH News 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 PNH News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.