Connecting patients and physicians for better outcomes
As a pipe-fitter for ship-building company BIW, Ernie Merritt often worked in tight spaces for long periods of time. Though he was just 23, at the end of his workday, his entire body would be sore and stiff from being cramped in the hull of a ship.
In 1996, at 33 years old, Ernie went to stand up after working all day in a confined space, and realized something was wrong with his back—he couldn’t stand up straight. But Ernie had a “no pain, no gain” mentality, so he struggled to continue working over the next eight months, even as the pain in his lower back continued to increase.
“I didn’t want to cry in front of anyone—especially my family,” he says. “I didn’t want them to know how much pain I was in.”
When he finally decided to visit the doctor, Ernie discovered he had a herniated disc that required surgery. He had his first back surgery, removing the bulging portion of his disc, less than a year after he began experiencing pain. Unfortunately, the surgery only caused further pain, and eight months later, Ernie went back in for his second surgery, where they completely removed his disc.
Over the next four years, Ernie had part of his lumbar spine fused, which was unsuccessful; he had screws and rods placed and then removed due to lack of stability. After one of (his final?) surgery, he was given a corset-like brace. The brace, which rests on his hips and goes up to his armpits, was supposed to keep the weight off of Ernie’s spine while he was recovering from surgery. But for Ernie, now TK, the brace has become a permanent fixture in his life. It provides the rigidity and support he needs to be able to stand upright and allowing him to move, albeit painfully.
Ernie’s chronic low back pain was also complicated by his narcolepsy, which he has battled since TK. The chronic sleep disorder means he can only take opioids when absolutely necessary, such as during surgery recovery, as they make him overly sleepy and can trigger migraine.
Ernie tried to return to work but was unable, so at age 37, he was deemed disabled by the state and begin receiving Medicare. Furthermore, having served in the military from ages 19-22, Ernie is also being treated by Veterans Affairs (VA). Trying to weave through the multiple insurance companies over the past 23 years has been a challenge. But it’s one he tries not to dwell on.
“I have my days, but most of the time I stay positive,” he says. “I feel like it’s important for me to be a role model for people that are in chronic pain because we have to have something to look forward to.”
Finding himself by helping others
At the beginning of his pain journey, Ernie says, “I was not in the right mindset to make decisions about anything. I was lost. I was losing control of my life, and trying to control everything around me because I could no longer control my health.”
But after several years of struggling, Ernie was introduced to a local chronic pain support group through his church. It was there that he began to build himself back up. “It was the first time I shared my pain and suffering,” he says. “It opened my eyes to beginning the process of building back my self-worth.”
Ernie has since taken over the support group and has partnered with the University of New England Medical School, bringing UNE medical students and doctors in to interact with the chronic pain sufferers in the group. Ernie believes that an open dialogue with patients will provide the medical community better insight into the lives of chronic pain patients, which will lead to better, more compassionate treatments.
“When I became disabled, I was young and I had never used the healthcare system for anything serious,” explains Ernie. “My take on it was that these doctors are god. Now what I try to do is convey there should be a patient side of it, where the patient can be educated on their treatment plan and have a chance to advocate for themselves.”
Courage and strength through advocacy
Before focusing his attention on the chronic pain community, Ernie had volunteered at his local VA Hospital. When he was first accepted as a volunteer, he cried tears of joy—finally feeling like he was going to be a useful, contributing member of society again. He also volunteered with the Big Brothers Big Sisters of America program until he began focusing most of his time and energy on chronic pain and advocacy.
Ernie has been an active advocate for the U.S. Pain Foundation for the past several years, doing both in-person and online advocacy work, as well as running his local support group. He has spoken to other pain patients, medical students, and lawmakers in an attempt to raise awareness of what life is truly like for him.
Ernie is a firm believer in educating the vast public about his struggles with pain: “We’re stigmatized and if we share our stories and show what we go through, the public becomes more educated,” he says. “It is my job to educate individuals to show them that people can still have some quality of life and that I can make a difference despite my disabilities.”
Living his best possible life
In 2004, Ernie proposed to his now-wife Gail, whom he met when his sister set them up on a blind date. “I feel this was a turning point in my life,” he says. “I had my dog, Max, and now I had someone to share my life with me. Gail knew me and didn’t focus on my disability, but on my abilities!”
But Ernie does have to be realistic about what he can and can’t do. He schedules his days to make sure a few household activities get completed while also allowing for adequate rest. Sitting or standing in one position or place is extremely difficult so Ernie only allows himself an hour of reclining before getting up and moving again or he will be stuck in that position until Gail gets home. “Movement is my best friend when it comes to keeping my back pain at the lowest pain levels possible,” he says. “I also do physical therapy stretches at home to keep my body going.”
When Ernie feels well and has time, he does wood-working. He gives his work to charities and auctions to try to raise awareness for different conditions. He mostly makes canes for individuals who need them. “To me, I’m building my self-worth by doing that,” he shares. I still have self-worth I can give back to the community and others that really appreciate and need it.”
Chronic pain has changed Ernie’s life, and in some ways for the better. “It has given me the courage to stand up and talk to someone that I would never would have before, especially lawmakers,” he says. “I have become a much stronger person, driven to make a difference because of my chronic pain. I would not wish this pain on anyone, but I am proud of the individual I have become as a result.”
U.S. Pain Foundation: uspainfoundation.org
The American Chronic Pain Association: www.theacpa.org/
Arthritis Foundation: arthritis.org