First came the spinal tumor.
Doctors successfully removed it and Patrick Gaines recovered from temporary paralysis that had incapacitated him from the neck down.
Next came excruciating pain that never goes away.
“It feels like my skin has been lit on fire and I’m putting it out with dry ice,” said Patrick, who is now 52.
To cope with the pain, Patrick tried a variety of medications including opioids. The side effects were terrible. He couldn’t function in a job he loved. After months of suffering, Patrick turned to alcohol and marijuana after work to try to check out and dull the pain.
But then his son, Christopher, who was only 14 at the time, spoke up.
“He came to me and said, ‘Dad, I can’t come home and find you dead.’”
Patrick’s heart broke that day.
But his devastation sparked determination.
“Superman’s cape came off,” Patrick said.
Dealing with chronic pain
Always a hero and role model for his son, Patrick knew he needed help standing back up after a hard fall.
He immediately checked himself into a rehabilitation program his insurance covered in California.
Empowered upon his return, Patrick started using healthy alternatives to cope with his pain.
“In rehab, I learned this isn’t about battling the pain. It’s about carrying it. Pain is inevitable, but suffering is a choice,” Patrick said.
Now he’s back to doing sports he loves including ultra marathons, mountain biking and challenging peak climbs in the Colorado Rockies. To cope with his pain, he has embraced several alternative treatments including biofeedback, acupuncture, Reiki, meditation and EMDR, which stands for Eye Movement Desensitization and Reprocessing.
Patrick also focuses on eating well, exercising regularly and doing regular one-on-one and group therapy.
In his journey to heal without pain medication, Patrick received critical help from Meredith Shefferman, his psychologist at the UCHealth Integrative Medicine Center in Denver’s Stapleton neighborhood.
She said Patrick is remarkable.
“He’s such an inspiration,” Shefferman said. “The amount of pain he’s carrying could be debilitating, but he’s found many ways to cope with it. He shows that you can live a happy, healthy, productive life even with pain.”
Brain tumor crushed the spine
Patrick’s ordeal with chronic pain began in 2014. He had played Pop Warner football as a boy. Since then, every once in a while, he’d get a quick jolt of pain in his neck like a pinched nerve. It always went away, so Patrick didn’t think much of it.
One night, the divorced dad was home alone when the pain in his neck hit him. He grabbed a bag of frozen peas and lay down. He fell asleep, but woke at 11:30 p.m. unable to move anything on his left side. He was petrified that he was having a stroke and called 911.
At the time, Patrick was the executive director of the Gates Center for Regenerative Medicine, a research center at the Anschutz Medical Campus that supports scientific breakthroughs in stem cell therapies.
While Patrick would have chosen to go to UCHealth University of Colorado Hospital close to his office and where he knows many doctors. But he lived in Highlands Ranch and the UCHealth Highlands Ranch Hospital hadn’t yet opened. So, paramedics rushed Patrick to the closest ER. Doctors there determined that he wasn’t having a stroke. But, they found a tumor called a hemangioblastoma that was crushing his spinal cord. By 6 a.m., Patrick was in surgery. In order to remove the tumor, doctors had to cut some nerves.
After the surgery, Patrick was relieved to learn that the tumor was not cancerous. But about a month later, the unrelenting pain began. Doctors told him that the tumor and the surgery to remove it had left his spinal cord injured.
“I was very scared. It’s intimidating when something like this invades your body,” he said.
Doctors hope the injury to Patrick’s spinal column will gradually heal over about 10 years, but in the meantime, he faces non-stop suffering.
“It’s roughly a third of my body on the left side down to my toes. Deep tissue massage is incredibly comforting, but water, clothing and light touch is painful 24/7,” Patrick said.
“I was prescribed opiates, anti-seizure drugs and anti-depressants. On my own, I was supplementing those with marijuana and alcohol.”
By August of 2015, Patrick checked into rehab.
The philosophy at the program he attended was to introduce patients to as many alternative therapies as possible and let them find methods that provided some relief.
“Every day, we did Reiki, cranial-sacral therapy, yoga, Pilates and meditation. We were able to access the gym and work with a Native American healer. Their philosophy was, here’s a host of non-invasive, non-narcotic modalities. Let’s help you find what works for you.”
Training the body to calm down
Shefferman reinforced all of the methods that worked best in rehab for Patrick and taught him new techniques.
An alternative to pain medications that she says works for many people is biofeedback. She uses a method called HeartMath.
“It’s an evidence-based approach for training the body to relax,” Shefferman said.
By hooking a small sensor from Patrick’s ear to a computer, she can monitor his heart rate variability and help him increase his awareness of how stress affects his central nervous system.
“We can train our bodies to calm down. With the biofeedback sensor on, you can see in real time how stress is affecting the body. Then I can teach relaxation and emotion-shifting skills, and you can literally watch your body begin to relax,” Shefferman said.
Biofeedback works well for people who are dealing with chronic pain and anxiety disorders.
Shefferman said pain serves a biological purpose.
“It’s an alert system for the brain to signal that something is wrong. It’s usually an indicator of illness or injury. Then that triggers a stress response,” Shefferman said. “It’s the body’s way of trying to solve a problem.”
When a person like Patrick is perpetually in pain, the system goes into overdrive.
“It’s fatiguing for our body to constantly be in a stress response or fight-or-flight mode,” she said. “That’s where biofeedback is very effective.”
Shefferman said Patrick came to her with a lot of meditation and mindfulness skills that he had been practicing for years.
“The biofeedback was really helpful in showing him how meditation could affect him in real time. I taught him additional breathing and emotion-shifting skills so he could learn how to cultivate positive emotions,” she said.
“He could then see on the screen how it was helping his body calm down,” Shefferman said.
Short-term therapy, long-term benefits
Providers at the Integrative Medicine Center use short-term treatments proven to yield lasting improvements. The idea is to teach patients new skills in a handful of sessions that they can then keep practicing on their own. The Center accepts patients with almost all major insurance.
“We try working with patients no longer than six months, because we want our patients to learn the skills they need to take their health back into their own hands” Shefferman said.
The Center also offers classes like a 6-week mindfulness meditation class that proved invaluable to Patrick.
He also worked on another therapy with Shefferman called EMDR, a method that works well for people with a history of trauma and post-traumatic stress.
EMDR is tied to the rapid, darting eye movement that we all have when we are in the most restful phase of sleep, known as the REM phase. Our eyes move from side to side as our minds and bodies restore themselves.
“The two sides of the brain are communicating with each other and processing the events of the day. REM sleep helps your brain process all the events that have happened,” Shefferman said.
When people experience traumatic events, their brains have trouble processing and storing away those memories. The trauma remains so vivid that it can keep causing fear and pain years later.
EMDR can help patients process the trauma so memories of it are not constantly rising to the surface.
During the treatments, patients hold paddles in their hands. Shefferman asks them to think about a traumatic memory and try to figure out where they feel it in their body. Then Shefferman can send signals through the paddles that stimulate the two hemispheres of the brain to communicate with each other and reprocess the traumatic memory. Research has shown that EMDR can be highly effective for trauma survivors like military veterans and victims of sexual violence.
“Patrick’s pain started with a tumor. The surgery then was traumatic. We worked on the PTSD from that,” Shefferman said.
‘Time to run again’
Among the many tools Patrick taps to overcome his pain is intense physical activity.
Following the surgery, Patrick went to see Dr. Venu Akuthota at the UCHealth Spine Center.
While Akuthota couldn’t offer a miracle cure for the nerve damage Patrick had suffered, he did ask a critical question.
“He said, ‘I know you’re in pain. Tell me about your life before this happened.’”
Patrick immediately told Akuthota about his love for running and being in nature.
“It’s time for you to do that again,” Akuthota said. “If that’s what lights you up, Patrick, then look beyond the physical symptoms. It’s time to run again.”
In his 30s and 40s, Patrick had done ultra marathons around the world from Colorado’s famous Leadville 100 to races in Nicaragua, Italy and France.
One of his favorites is called the San Juan Solstice. It’s a stunning, high-altitude race that weaves 50 miles through Colorado’s most rugged mountain range, the San Juans.
So many runners want to do the race every year that the organizers hold a lottery.
Inspired by Akuthota, Patrick decided to try to get a spot in the race in the summer of 2016. He scored an entry, and, to his surprise, he did better than ever.
“I ran that race faster than I’d ever run it before. That was not my goal, but I finished in 13 hours,” Patrick said.
While he’s running, his pain persists. But, as endorphins flood his body, and he revels in the views around him, Patrick literally rises above the pain.
“Running is a beautiful distraction,” Patrick said. “It’s very rugged. There are about a dozen river crossings and a good portion of the race is up on the Continental Divide above treeline. The whole thing is beautiful. It’s a 14-er garden down there.”
A new sport and a new mission
Along with running, Patrick recently took up mountain biking.
“At 52, it’s fun to introduce a new sport. It’s harder work than I thought it would be. Running and climbing use a different set of skills,” he said.
The mountains still give him great joy.
While heavy snows last spring made it tougher to navigate Colorado’s high country over the summer, Patrick still was able to do some great trips.
He spent some time in the Sangre de Cristo Mountains in southern Colorado, where he climbed some famous 14ers: Crestone Needle, Crestone Peak and Mt. Lindsey. He and a friend also enjoyed an epic day in Rocky Mountain National Park, climbing eight summits in one day in an area called the Mummy Range. They climbed Chapin, Chiquita, Ypsilon, Fairchild, Hagues, Rowe 1, Rowe 2 and Mummy. When climbers do six of those peaks, they call the feat “Mummy Mania.” Patrick and his buddy added a couple of extra summits to boost the challenge.
Any day in the mountains is a good one for Patrick.
“It’s about communing with nature. It’s an opportunity to lose yourself and be embraced by your surroundings,” he said.
Back in town, he’s also enjoying a new professional calling. Patrick is the chief development officer for the Boys & Girls Clubs of Metro Denver.
Since the Clubs cater to children who have endured hardships, Patrick can empathize with their challenges, while also putting his pain in perspective.
“I’m very open about my situation. It’s like I have an invisible disability. I think it helps people to understand what I’m going through if I have to jump up and walk out of a meeting for a short time,” he said.
If he’s having a rough moment and needs to tap some of the relaxation techniques he has learned, he can lie down on the floor of his office, use his backpack as a pillow and transport his mind to a calmer place.
“I can get a restorative session in as little as 90 seconds,” Patrick said.
His experiences give him deep understanding of the Clubs’ clients.
“The kids that the Boys and Girls Clubs serve come from circumstances that they have no control over. In many cases, they’re dealing with financial strain. The burdens that their families face often trickle down, so kids as young as 9 are coping with emotional difficulties that most adults can’t face. I can empathize with them. Everything may look fine, but it’s not,” Patrick said.
The greatest medicine: kindness
In addition to his job, Patrick serves on boards for other nonprofits and volunteers as a speaker for recovery groups to assist people coping with addiction and pain.
“I subscribe to the belief that you only keep what you have by giving it away. I have a strong service practice. Twelve-step recovery groups are a big part of it,” Patrick said.
He also finds great joy in seeing his son thrive and mature. Christopher, now 19, is now studying engineering at the University of Colorado in Boulder. Like his dad, he also plays the French horn. The two sometimes play music together and Patrick has gotten to see his son perform with the Concert Band at CU.
“He’s very much part of my journey. We talk a lot,” Patrick said. “When I was in the deepest throes of my struggles, my life was complicated and it was hard for me to keep my affairs in order.”
Back then, Patrick wasn’t able to be a rock for his son. Now, the balance has been restored.
“Kids look to their parents for guidance. He reaches out constantly and knows I have the bandwidth for him,” Patrick said.
For instance, when Christopher got a lousy bout of the flu recently, he knew he could call his dad and get plenty of empathy at 1:30 a.m.
As for Patrick’s pain, his doctors cannot say for sure when it will abate.
“There’s no rhyme or reason to what to expect with severe spinal cord injuries,” he said. “You learn little lessons along the way.”
Patrick prioritizes sleep and makes sure to keep stresses in check.
Along with his physical activities, he loves painting, playing music and attending the opera.
“I love the opera. It’s the ultimate amalgam of all the performing and visual arts in one. It’s acting, singing, orchestral music, stage and set design and dancing,” Patrick said.
He can’t wait for the day – hopefully within the next few years – when his nerves have healed and the pain goes away.
Until then, he’s grateful for all the help he has received and the critical lessons he’s learned.
“If you fight with pain, it wins. It will always fight back,” Patrick said.
Strange as it seems, he’s learned to make peace with his pain instead.
“Day by day, month to month and year to year, I’m learning how to carry the pain more efficiently and with greater amounts of kindness.”