When Pompe symptoms change a patient’s fishing hobby

“The Pompe Community Diaries” is a series that follows the journeys, musings, and challenges of those in the Pompe disease community. This week, I’m introducing Steve Bersani.

Steve served as an officer in the Boston Police Department for 30 years before retiring in 2018. He operated in public housing and then as a special investigations officer.

“I don’t remember how I did it for so long,” Bersani recalled. “I just did it.”

Today, he lives in a Boston suburb with his fiancée. He is dependent on variable positive airway pressure (VPAP) and has a collapsed diaphragm. In recent video chats, I talked with Bersani about his love of fishing.

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AW: Describe your early fishing years.

SB: I started fishing when I was 5. I’d go fishing and pheasant hunting with my father, brothers, and buddies growing up in Quincy [Massachusetts, near Boston]. My father had a little johnboat.

When I was a police officer, I wouldn’t take any long vacation time off, but instead used my vacation days by taking a day off every week or so to go fishing. I bought a used bass boat for $3,000 in the early ’90s that I held for a long time, until I physically couldn’t handle it anymore.

I enjoyed bass fishing more than trout fishing. Trout isn’t native in Western Massachusetts, so they have to stuff the fish. With bass fishing, you move around and have to find them.

I remember going with a close friend who loves reptiles. I was afraid of all sorts of snakes, but when my buddy saw a water snake or a snapping turtle, he’d just go into the water and grab them to say hello. We’d go to a small pond and ride the motorboat — me in front, my friend or brother in back.

What do you love about fishing?

Being a cop, I didn’t mind working weekends. It meant I could go fishing on a Wednesday, with the water to myself on a weekday.

I’d go fishing in southeastern Massachusetts in Plymouth for eight to 12 hours, 6 a.m. to 6 p.m. sometimes. I loved the peaceful solitude, though I will say it’s lonely when you catch a fish and want to share the moment.

I loved studying the pond, trial-and-erroring different jigs, worms, 9 million other lures. I’d learn the drop-off areas and know the boulders and rocks there.

As I got older, I learned if one strategy isn’t working on one day, it doesn’t mean it doesn’t work. It’s almost like the fish have morning meetings and say collectively these are the lures we’re going to hit or not hit. To this day, I don’t know how they have this universal language to only target one hit. They’d all hit silver lore one day and all something completely different another day.

Many men go fishing their entire lives without knowing it’s not the fish they’re after. I think that’s a Thoreau quote. [Editor’s note: It is.] One day I was on Lake Winnipesaukee. There were little coves. I saw these beavers. It was incredible. I could feel the stress melting away from my body.

What became challenging eventually?

I had my 17-foot boat for 13 years, from 1992 to 2004. Later years, getting in and out of the boat was tough, really anything that took strength. Bending over was tough. Bending down to lift and pull the big motor was tough. Putting the wading gear on before getting in the water was tough. It definitely became a struggle.

One trip, a friend lent me his kayak. It immediately felt so much better. No mechanics. Boat right on water level. I got a kayak and restarted fishing after my Pompe diagnosis. I had a great system going: kayak on sawhorse so I didn’t have to lift it, and I could put it onto the water at water level. Putting it back in at day’s end was a challenge, but it was a great feeling to have figured out my entire system to get to the fishing.

Eventually my last fishing trip was October 2017. My new normal was downhill. Having strength really got tougher — reaching, bending, picking up lures, throwing a fishing rod and holding it all got tougher.

At first, I’d go and be wiped soon after. But then, I became wiped before starting. It’s hard to articulate because it’s an all-over-my-body thing. My son offered to bring the boat for me, but physically I didn’t want to do something I really can’t do. I’d rather have the good memories and then try to see if I can go cook or play some poker.

Last days I went fishing, I saw a bald eagle on a true, beautiful day. That was really great. I still have my kayak. I can’t use it, but psychologically I’ll probably never get rid of it.

Note: Pompe Disease 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 Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.