Just Being John | Patrick Berry

In May of 2022, before his life would forever change, John Kirk was on top of his game both personally and professionally. Life was good and he was going fishing.

The much-anticipated annual striper junket to the Cape was finally in full swing. The fishing reports had been good, and John had brought along his surreal collection of gear and specialty “Kirky” flies. This was a magical intersection of his favorite things: fly fishing, friends, and an opportunity to just be John.

Over the four-day trip, John revelled in his usual roles as ring-leader, cheerleader, and fountain of distinctive Kirky quips and off-the-cuff movie quotes. When he’s in his element, John can make himself chuckle, even if no one else is in on the joke. It’s an endearing window into John’s whimsical nature.

By the time we parted ways and headed home, we had all caught fish, but that was genuinely secondary to the gathering itself. In John’s world, even as a talented and accomplished lefty fly caster, the people and experience always came first.

But just a month later, John seemed to be losing his equilibrium. During our fishing trip to Maine, some of us noticed John was having difficulty wading. His legs would just give out as he navigated along the edges of the river. He went down multiple times.

Over the course of the summer, John’s condition deteriorated. His legs kept giving out and he was losing sensation. I assumed this was all related to some of the ailments he had been battling over the previous months.

In the prior fall, John contracted a shingles infection which caused discomfort and stinging in his legs. He couldn’t sleep. As the virus ran its course, John continued to struggle with mobility and intermittent pain. A trip back to the doctor revealed a new health challenge: diabetes. But with some modest changes to his diet, test results showed substantial improvement.

And yet the pain, fatigue, and mobility difficulties continued to get worse. He could barely walk. What on earth was going on? Considering John’s history, this all seemed incredibly unfair.

Just five years earlier, John had completely reinvented himself. He beat the alcoholism that had taken over his life and emerged with impressive strength, determination, and fortitude. He moved from the Bangor area to Portland, lost the beer gut and got a promising new job leveraging his skills as a top real estate title attorney.

Life was good. Until it wasn’t.

By the fall of 2022, after successfully managing shingles and diabetes, John was now confined to a wheelchair. He was in relentless pain and was watching his life unwind before him, with no clear path to wellness.

And then, an answer came.

John was diagnosed with a debilitating autoimmune disease called Chronic Inflammatory Demyelinating Polyneuropathy. More commonly known by its acronym CIDP, the rare neurological disorder is caused by inflammation of the nerves and nerve roots, which destroys their protective myelin, and causes weakness, pain, fatigue and numbness. John’s neurologist told him his case was the worst they had ever seen. And John’s CIDP seemed immune to the standard treatments.

In the following months, John’s journey veered into a brutal and unforgiving landscape. Unable to walk, forced to relocate to medical facilities for treatment, and incapable of managing the pain and fatigue enough to work, his life fell apart. He lost his job. And with a multi-faceted treatment regime bordering on criminally expensive, the medical bills began to pile up. Facing complete bankruptcy, John relocated to Colorado where he could stay with his mother and seek treatment in the Denver area.

In the following months, John’s journey veered into a brutal and unforgiving landscape. Unable to walk, forced to relocate to medical facilities for treatment, and incapable of managing the pain and fatigue enough to work, his life fell apart. He lost his job. And with a multi-faceted treatment regime bordering on criminally expensive, the medical bills began to pile up. Facing complete bankruptcy, John relocated to Colorado where he could stay with his mother and seek treatment in the Denver area.

During these dark months, the John we all knew started to slip away. The whimsy and light-heartedness had faded. There was an increasing and overwhelming sense of hopelessness. The promise of fishing again—a vision John clutched tightly, and we encouraged—had become elusive.

It could be difficult to talk to John on the phone. When the effects of pain medication or even the pain itself abated— even slightly—John would provide grim reports through tersely worded text messages on the battle he waged every hour of the day. We tried to inspire him, support his journey, and let him cry when the weight of his burden became too much. I cried for him. I think we all did.

This wasn’t how karma was supposed to work. By his very nature, John is superlative in his loyalty, generosity, good will, gratitude, and, yes, sometimes overly-sharp tongue. He had gotten his life together. All he wanted to do was spend time on the water with his friends. How did he deserve any of this?

I first met John more than 30 years ago in a wacky alignment of fly fishing bucket lists. I was trout bumming in my junker Dodge truck, and had ventured to what seemed like the middle of nowhere to experience the legendary fishing along the Green River in Flaming Gorge, Utah. I landed at the Dripping Springs Campground near Dutch John, Utah—and so had John.

In the camp site next to me was another Dodge truck, also with Vermont plates, also with a couple of Grateful Dead stickers, and also with a decal of our college alma mater. What were the odds? We chuckled at this chance first meeting, and fell into the usual banter of the fly fishingobsessed as we traded flies over beer and chew.

During that first interaction, I learned that John is one of those incredibly rare fly fishing types who is genuinely happier for others’ fishing success than he is for his own. The guy just loves to celebrate the experiences and achievements of others. And in those wondrous moments when John holds court, your stories become John’s stories— stories that he will carry around and unveil.

In John’s retelling of your success, the fish grow bigger, the experiences are enhanced, and the lessons learned become more profound. He does this because he loves his people. He loves the time together. He loves to celebrate you The fish are just a vehicle to express those connections.

As the fall of 2023 approached, John had made some improvement in his ability to use his legs, which had atrophied from nerve damage and lack of use. But a wheelchair was still his only form of mobility, the pain and fatigue were too-often overwhelming, and of all the bad luck… his hands and arms were now being affected.

However, John carried on. And we noticed his affect and mood were improving. Whatever he was doing to make progress with this awful disease wasn’t enough to get him walking on his own, but we could hear the signs of hope returning. John was returning. His excitement to go fishing was returning. But few topics of conversation could tap into his enthusiasm more than the expectation of spending time with friends.

You would be hard-pressed to find more loyal and generous friends than Jon and Laurie Detwiler. Laurie is a kind and pragmatic grounding force, offering the occasional “adult supervision” that grown men sometimes seem to require. Jon is 6-foot-5 with a presence that enters a room before he does. He has been called “Bigman” for as long as I’ve known him. As John’s closest friend since college, Kirky and Bigman have amassed a multi-volume history of incredibly entertaining fishing and waterfowl hunting adventures.

When John needed support during his tragic ordeal, the Detwilers were there. They visited John from their home south of Boston as often as their schedules would allow. They moved his now-vacant apartment, put his life-long collection of belongings in storage, and helped guide his medical decisions. They even got him out fishing during a visit over the summer—a challenging trip, but one that only motivated John to try again.

As the summer began to wind down, Bigman encouraged a couple of us to visit John, knowing it would cheer him up. So we did. In late September of 2023, one of John’s long-time fishing buddies Garrett Staines joined me for a mission to get John out on the water again with a fly rod in his hand.

Garrett and I picked up John and his gear and headed west, with high hopes we could make this work. The first morning was rough. After little sleep, continued discomfort, and nausea from pain medication, John was a slow-moving train.

We arrived at the river far later than planned but viewed this first foray as a test run. John had been able to purchase an “all-terrain” wheelchair with funds raised through a GoFundMe page, and it worked beautifully. We were able to get John to a bank perched above some decent looking water that held a few risers. I silently begged the trout gods to smile on John with a bent rod, but it just didn’t happen. After missing a couple small fish who slapped at his fly, John’s fatigue and pain worsened. It was time go. Still, this was a small victory. John was fishing again.

Day two arrived with some signs of hope. As I greeted him in the doorway of the adjoining motel rooms I could tell John was in much better shape. Even before his first cup of coffee was drained, John’s distinctive “jabberjaw” was in full motion. He was just chatting away, excited to be on a fishing trip with his people. On this particular morning, the only difference from the John I met in the Dripping Springs Campground was his means of getting around.

The three of us hit the road and followed some intel on a section of river that we thought might allow John to actually get in the water. We stumbled upon a spot that had every fishy feature: riffles, runs, seams, bubble lines, deep rock walls, and even a little pocket water— all repeating down a sweeping bend in the river. Two additional elements were key. First, we had the place to ourselves on a day when in other spots, fishermen seemed to line every inch of river. Second, there was a gently sloping gravel bar for about 100 yards that could allow John access to the water.

After some quick scouting, we noticed the river was a bit high with a tinge of color, but those factors had no impact on our ability to ease John into the river, in range of some likely holding water. With little hesitation, John fished as though there were no barriers for him, switching between dry flies on his fiberglass 4 weight to streamers on his custom twohanded rod. After a moderately-full day navigating up and down the gravel bar, John never touched a fish. And yet…he had the time of his life. And so did Garrett and I.

It’s understandable how time and experience can decay the mystique and anticipation of fly fishing. It just happens. But getting out with John brought me back to the magical discovery of a sport in which the reward is truly the experience itself. There was so much joy in the outing, regardless of obstacles or uncooperative fish.

John was in his element, blissfully revelling in his connection with friends and being immersed in the sport that has been an enduring feature of his life. Through the good times and dark episodes, fly fishing has always been there for him. Unsurprisingly, as we drove away from the river on that final day, John celebrated the few fish I managed to dredge up on nymphs. That’s just John.

I’m not sure I will ever completely comprehend how John managed to hang on to life itself, but I know he kept himself going with the not-yet-broken promise of another day on the water. In the dark moments when the pain and tears and shroud of hopelessness that would understandably envelop most people, John hung on. How? He envisioned another personal reincarnation, this time from a wheelchair, pursuing his favorite version of fly fishing, where friends and the experience are at the center of it all.

John’s journey continues. Along with Bigman and Garrett, the two of us are already planning the next trip. Through John, I have rediscovered a deeper, more fulfilling version of fly fishing in which the fish matter far less than the connections, community, and simple joy of going fishing.

I know in my heart there will be better days ahead for John. I also know there will episodes of pain, suffering, and sadness. Regardless, the people John has met through fly fishing will continue to be instrumental in his journey, and he in theirs. Hang in there, John. Another day on the water with friends will be here soon.

Patrick Berry

Patrick H. Berry is FFI President and CEO. Berry brings over 27 years of experience within the environmental conservation field, having come to FFI from the Vermont Community Foundation where he served as vice president of philanthropy. A former commissioner of the Vermont Fish & Wildlife Department, Berry is recognized as a visionary conservationist and is widely respected by his peers.