My Long But Satisfying Road to Recovery
On June 3, 2006, fit after months of hard training, I stood at the starting line of the Honu Half-Ironman triathlon in Kailua-Kona, Hawaii. By then I had completed more than 40 triathlons, including the king of them all, the Hawaii Ironman itself. An Ironman triathlon comprises a 2.4-mile swim, a 112-mile bicycle ride and a 26.22-mile run, raced in that order and without a break.
I knew I’d be in for a challenging race. What I didn’t know was that in less than two hours I’d face the biggest challenge I had ever confronted. By the end of the day, I’d be lying in an intensive care unit attached to an array of machines that were keeping me alive.
Eighteen miles into the 56-mile bicycle leg, working smoothly up Queen Kaahumanu Highway, I began to feel dizzy. My vision blurred and got worse with each push of the pedal. Ahead I saw a patch of grass that looked like a good place to stop. I had never dropped out of a race before. I was 33 years old, in the best shape of my life, and yet I thought I was dying. I managed to pull off the road, unsnap my helmet, and because I was so dizzy, used my bike to steady myself as I lay down.
Somewhere in my brain a weakened blood vessel had ruptured. A torrent of blood was literally flooding my brain cavity near the critical area that controlled my breathing. CT scan results showed I had had a brain stem hemorrhage. The rupture was in an area where both cognitive and motor functions are controlled, functions like breathing, feeling, seeing, walking and talking. After I had been helicoptered to Honolulu, a doctor told my wife, Kelsey, that even if I were to defy the odds and survive, I would most likely spend the rest of my life in a “locked-in state.” That means I would be unable to move, speak or communicate. Months later, when I was back in California, I had surgery to remove the cause of my stroke—a midbrain benign tumor that had been growing slowly all my life.
Survivor Dirk Vlieks celebrates the completion of the 2011 Honu Half Marathon with his wife Kelsey, just five years after his stroke
Before that surgery and before I was strong enough to be flown to California for the intensive rehab that would occupy my life for years, I drifted in and out of consciousness in the neuro-intensive care unit at The Queen’s Medical Center on Oahu, watched over by Kelsey and my family. They would be both thrilled by each step of my progress and frightened by each setback. Such is the drama and reality of brain injuries.
A partial list of my daily medical procedures in intensive care reads like the car repair bill no one wants to get: external ventricular drains, shunt revisions, interior vena cava filter, cerebral angiograms, central venous catheter, arterial line catheter, tracheostomy and multiple CT scans. My discharge form stated that I had had a midbrain hemorrhage along with an intraventricular hemorrhagic extension. I’d been in a coma and had suffered respiratory failure, quadriplegia, obstructive hydrocephalus, recurrent fever, dysarthria, dysphagia and diplopia. I’d had a urinary tract infection and deep venous thrombosis.
My first clear memory was of my mother soft-tossing a Nerf ball at me to see if I could catch it. It had been five weeks since I had stepped off my bike.
When I awoke from my semi-conscious fog, I gradually became aware that I’d have to start learning everything all over again: eating, speaking, walking, shaving — basic things everyone takes for granted. I was at square one, like a 2-year-old child. I knew the road ahead would be tough, like nothing I had ever done.
My training as an athlete taught me to keep pushing and never give up, never despair. It would prove to be a valuable lesson.
By the time we headed back home on July 9, I had lost 30 of my 187 pounds. My head was shaved, and those five weeks under the dim lights of the intensive care unit had done nothing for my physique or tan. I was pale as a ghost.
Back in California the enormity of what had happened began to sink in. I saw the fear behind the smiles in people’s faces, and I was not about to get used to that. I could not accept anyone feeling sorry for me. Call it what you may — anger, fear, determination — I rejected all feelings of sympathy.
When I took my first steps toward recovery — physically and emotionally — I knew I would never have the same body again. I shed as much frustration about that cold fact as I could. Instead, I began to focus on one thing: if I were going to have to deal with a new body, I was going to make absolutely sure it was a strong one.
Somewhere inside I was alive and ready to move.
My first stop was Kentfield Rehabilitation Hospital in Corte Madera, California, where I worked as hard as I ever had. I wanted to be out of there and home as quickly as I could. By the time I left Kentfield, the staff called me a poster boy for their program. It was not exactly like crossing the finish line in Hawaii, but it was a compliment. The fact that I could walk slowly but unassisted through my front door at home for good on August 25th, I felt confident that I had done all I could at Kentfield.
I had a long way to go. But I followed something that had become my driving force, so simple yet filled with so much meaning to me: “Every day is a gift.”
After I left Kentfield, Kelsey and I began what we called a “throw it against the wall and see if it works” approach. I had acupuncture treatments, eye therapy and balance training. I tried an antigravity treadmill. Kelsey put me on a new diet. I also tried sleep therapy, speech therapy, massage, mysterious Eastern medicine, brain therapy and meditation.
I began my own serious program of physical therapy after friends opened their fitness center to me. My first swim was a disaster. I had forgotten everything. I could not stroke properly. I could not stay on a straight course. More frightening, I could not breathe and ended up swallowing what felt like most of the pool. But I swam. Every day I fought my fears and got back in the water. Within two weeks, I could swim 100 yards without interruption.
I used a flotation belt for stability to run in place in the water, something I would do as often as I could. It was a safe and good workout. No falling, steady resistance, good mileage. It was boring beyond belief.
By then, the reality that everything would be different had sunk in: learning to speak clearly; learning to swallow; learning to walk without reeling and then to run; learning to control my facial muscles and basic things like picking up a cup of coffee without spilling. I felt like a child again.
Nothing came quickly, though I did absorb one lesson fairly soon into the process. It was something that had never been a strong suit: patience.
I had brain sessions in which the therapist worked with me to control my breathing, which would in turn lower my pulse. I did vision therapy. In one drill, an ophthalmologist held the end of a two-foot string on the tip of my nose and slowly moved the far end in her other hand from one side to the other, or up and down, and asked me to follow it with my eyes.
I locked into a simple attitude: I would do whatever was asked and move forward, even if signs of progress were barely noticeable. I conceded that there was no magic bullet, no instant cure that would make the whole nightmare disappear. It would be a matter of degrees. It would be fine.
I began stretching my walking distance. For most of the first year, walking was all I could do, slowly, at times wobbling. A sidewalk crack or looking to the side would send me to the ground. I pestered the doctors about starting to run, but they were still concerned about overexertion and what that might prompt.
The whole family came to Thanksgiving that year, and we went out for a pre-gorging walk along the rails-to-trails path behind our house. I began a slow run. Everyone looked surprised, and, caught up in it all, started jogging alongside me, whistling and whooping. I did not even break a sweat, but that short jaunt on the path was one of my best runs ever. Thanksgiving had a new meaning that year.
During that first year, I took classes at the College of Marin to work my brain. Getting to class required taking a bus since I still couldn’t drive. I got used to the slower pace. It made for long days, but long days kept me occupied and were, in an odd way, energizing.
I had my down moments, when I felt that my life was nothing more than therapy. I grew tired of the repetition and finding the energy to keep motivated. The slow jogging and slow laps in place in the pool, the sessions on the stationary bike had one thing in common: a lot of movement that went nowhere. No matter what I did, I ended up in the same place. I wanted to move ahead. I wanted a destination, some purpose for all the effort. I did not want my life to be a treadmill.
Then something magical happened, Kelsey and I learned we would be parents. Our twins arrived on February 1, 2008. We moved to Mystic, Connecticut, to be closer to our families. There I resolved to get outside, join a running group and pick up the pace. The long list of what my physical therapist had called my deficits was growing shorter. In Mystic, I took to the road. I still had trouble walking, but running was easier and more fluid. It turns out that when you run, you spend less time on any one foot so balance is less of an issue.
I began a secret mission to finish the race that had set me back so far. Eventually Kelsey caught on to my plan and backed me wholeheartedly. On June 4, 2011, back in Hawaii for the Kona Half, I was like a phoenix rising from the ashes. I finished and knocked another goal off my list of challenges.
There would be more challenges. There still are, but I try to keep focused.
On November 2, 2014, I joined more than 50,000 others on the Verrazano Narrows Bridge for the start of the New York City Marathon. I was amazed and humbled when I crossed the finish line. I had come a long way in those eight years.
Next up is the Boston Marathon, which I trained for through the tough Connecticut winter.
I want to begin a fresh and vibrant new chapter of my life.
Adapted from the book Square One: Returning to Life and Competitive Running after My Devastating Stroke, by Dirk Vlieks. For more information, visit dirkvlieks.com.
Dirk and his wife, Kelsey, share the story of the day of Dirk’s stroke. Video courtesy of Peter Huoppi/The Day
This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.