How I’ve Lived with Chronic Pain for 30 Years (Memoir)

Chronic pain has lived inside me every day and every year for the past 30 years. How it began and where it exists is less important than how I’ve lived with the affliction. Despite getting jumped by two different gangs, being born with a birth defect in one kidney, being tested like a lab rat as a teenager, having multiple surgeries, breaking many bones, and growing up with Jack from The Shining, I’ve managed to create a good life filled with creative work, travel, and love.

I grew up in an old farmhouse in the middle of the country in Central Minnesota. A gothic, arctic wasteland for six months every winter. It was a lonely existence out there. My only sibling, my brother, wasn’t born until I was nearly eight. My imagination, books, toys, and the seven channels on television were my closest friends.

My father had PTSD and mental health issues, which were associated with the Vietnam War, but probably had deeper roots. He worked at the local prison as a guard, which he called “The Joint”, and used loads of drugs and alcohol to self-medicate his own pain. He used to compare himself to Jack Nicholson in The Shining, which is what family life often felt like. The labyrinths of piled snow hallways outside our home that led to our quarter-mile dirt driveway were eerily similar to Kubrick’s movie finale.

There is no specific diagnosis for my pain, but these are some of the events that probably contributed to it. I had a major kidney operation to remove a birth defect two days after I turned 15. A house fire caused me to lose most of my possessions two months later. And two days after the fire, I badly broke my leg and had a heavy cast from my toes to my crotch for several months.

Ten months later, my family was evicted after a decade of living in the farmhouse. The landlord appeared unannounced when I was having a party for my 16th birthday. I was singing in a microphone standing on a makeshift stage we had made from the cement remains of an old chicken coop when the landlord said he would call the police if I didn’t ask everyone to leave. I told my father when he got home a few hours later, and he broke down into tears.

We then moved “to town”, a nearby Midwest city where factories, fast food restaurants, box stores, and the prison were primary employers. One night downtown, I had my arm broken by a gang of three racist white teens I was preventing from killing a friend for being Asian. Then, I began having trouble with the law. It seemed the police had placed a target on my back. I began to believe that if I didn’t get out, I’d end up in the prison where my dad worked or dead. I got accepted into the University of Oregon and left for the West Coast a week after I turned 18.

My first year there was lonely but other than side effects from operations for my kidney and broken bones, my physical pain didn’t really begin until I had a head injury in Seattle at the age of 20. I suffered amnesia and a concussion after colliding with a tree on a rope swing over a steep mountainside and ended up in the ER. But I still boarded a plane with a one-way ticket to Amsterdam a week after the injury. On the plane, I experienced my first panic attack and arrived with pneumonia. I was treated at a Dutch ER.

After traveling in Europe and the UK for a couple of months, I woke up in Prague with excruciating pain where my kidney scar was located. I thought I was dying. As it turned out, I wasn’t. I was later tested at the University of Washington and I was fine. But the beginning of anxiety, depression, and OCD began.

Two years later in San Francisco, I broke my collar bone in a bicycle accident in the Castro. Two months after that, I was jumped again by a gang. This time by four young black men who lived a block from my home in the Western Addition neighborhood. They threw a construction roadblock at me as I biked home from band rehearsal but missed. So they shoved me off my bike seconds later, dislocating the shoulder that had just healed. Then they surrounded me, yelling, “We’re gonna kill you, white boy!”, and beat me.

Just as I finished healing from the attack two months later, I flew back to Prague to study at Karlova University. That’s when my muscle pain skyrocketed.

Chronic pain in the muscles of my back, hips, shoulders, neck, and jaw have waxed and waned ever since, but it’s continued to be part of my existence for all my adult years. It has driven the search for a solution and the search for a way out. Seeking a cure and a reason why have lived parallel to my own “woe-is-me” self-victimization and crawl-under-the-sheets self-destruction. But it also drove the hope that I could live and even thrive with my disability. It made me want to create music and write words to connect with people. Still, it was never easy.

Physical pain is not something anyone can see. It’s an invisible specter. A demon that drives sometimes insane actions just to have one pain-free moment. For me, it’s an unassuming monster that lives in my muscles shrieking with horror at a volume that frightens my soul, yet no one else can hear the burning scream.

Photo by Marina Kazmirova

Pain drives anxiety. Anxiety drives depression. Depression sparks conflagrations of pain that rise up like a massive bonfire. A whirlwind of anxiety stokes these fires, triggering more debilitating pain. A gothic circus of descending Dante-esque cantos of hell. It’s an unholy triad. The dark and disastrous divinity. Pain, depression, and anxiety. There is no eye to this hurricane, and no way to stop it completely.

It’s not that I haven’t tried, because I absolutely have. I still work every day on solutions, however small a dent they make. I swim and meditate. I surf and SUP. I read, study, walk, breathe, stretch, sing, play piano, and laugh as much as possible. I also sometimes break apart — though now far less than in my younger years when I fueled my self-medication with drink, drugs, and sex.

There is a yin and yang to pain. It inspires creative ways to live, survive, and search for meaning. There are Eastern tools I’ve used like acupuncture, massage, tai chi, and qigong, and there are the Western ones like anti-depressants, therapy, and EMDR. I have searched every corner of the places I’ve traveled and lived in for solutions. My tools are many, and my toolbox is now an entire tool shed. In that shed, there is both New Age and punk rock. There are many different faces of me in there, too. Broken, burned-out, hopeful, resilient, courageous, chaotic, and calm.

For 30 years, I have continued to live an existence that sometimes seems rosy on the outside, but on the inside, it has been overwhelmingly difficult. Moments that may have seemed easily pleasant for others have been excruciatingly hard for me to enjoy. Moments of great celebration have been spectacular times of sorrow for me.

There have been times when I let the cracks shine through. My onstage rock ’n’ roll meltdowns, drunken carousing, and disappearances into hermit life have been coping mechanisms that felt necessary. Although not always positive. I’m always learning, questioning, searching, and longing. Occasionally, accepting. And that’s where I find myself more often these days.

There are also times I just give-the-fuck-up. The towel is thrown in. My hands held high in surrender. I find that’s ok, too, because, as a surfer, you have to ride out the waves of life when they’re smooth or rough.

Photo by César Couto

I was thinking recently as I pored over 50 inspirational messages and stories I’ve published online, that I don’t believe in any of them. I thought these are a crock of shit. But that is simply not true. I’m not a charlatan or a liar. I fervently believe in everything I’ve put out. Every song and musical composition. Every story, sentence, and meme. Every word of advice, recommendation, and suggestion as a consultant. Every performance and word sang or spoke on stage. They are true. And my desire to help others is, too.

I had wanted to write something inspired by my own messages, and I couldn’t do that. It was difficult. I hurt. What came easier was to write about myself and my silent inner stalker. The torment inside that others can’t see because they can’t feel what it is to be me. It’s my villainous friend. My evil, lurking shadow. My sick conjoined twin. The sinister fiend who sits on my shoulder whispering sweet, black tar into my ear that no one else can hear.

I try to use this as a way to connect to others’ suffering. That’s what gives me greater hope and deeper resilience. To be able to understand, be compassionate, relate, and listen. If help is just saying, “I understand,” then I’ll use that power.

Pain is not anything I would wish on anyone, because the anger, fear, and fire of destruction that pain can instill inside us is what I believe causes our fiercest, most diabolical dictators and leaders to exact horrific violence on others. Pain drives pain. But pain can also drive hope.

This is how I find that pain has helped me. It has helped me to be hopeful and find moments of joy and contentment. And it’s made me compassionate and have empathy for others. Great mountains of hope are required to live through pain every day, year upon year. And I’m inspired to help others because I know how hard it can be.

I understand your pain.