Woman with spina bifida turns from pain pills to running
More than 1,600 miles and a half-dozen states separate Jennifer McDonald and Misty Diaz, but the two women who have never met are connected by a common bond.
McDonald’s 7-year-old daughter, Emma, and the 29-year-old Diaz were born with spina bifida, a congenital birth defect where portions of the spinal cord often protrude through undeveloped vertebrae. Depending on the severity, the affliction makes walking and running problematic and usually guarantees a childhood full of operations.
Once McDonald saw — via social media — what Diaz was accomplishing in running events, she wanted her daughter to meet the 4-foot-4 spitfire from Long Beach, Calif.
“I started following the amazing things that she was doing, when her whole life she was probably told that she couldn’t do any of this,” McDonald said last week. “I’m just speechless when I see what she does every week. I’m so amazed.”
McDonald, who has adopted running only in recent years, reached out to Diaz to see whether she would come to Duluth to run Saturday’s Garry Bjorklund Half Marathon. McDonald asked Grandma’s executive director Jon Carlson if he would extend a complementary entry to Diaz, which he did, then she bought Diaz an airline ticket and invited her to spend the weekend with her and her family at their Proctor home.
The two women plan to run the 13.1-mile race together — Misty with braces and the hot-pink crutches she affectionately calls her “running canes” — and spend time showing Emma that her disability isn’t the end of the world.
“I just want to play with Emma and show her that this is never going to stop us,” Diaz said by phone from Long Beach. “It gives me chills.”
Diaz overcame addictions
Born two months’ premature in Bakersfield, Calif., Diaz was placed in an incubator, suffering from classic symptoms of spina bifida — Latin for “split spine” — such as an incomplete closing of the embryonic neural tube.
“My spine was completely exposed,” Diaz said. “My intestines and bladder, every (organ) was on top of my skin.”
After enduring as many as 20 operations over the years, Diaz was placed on anywhere from 12 to 20 pain medications.
“My body, over time, became addicted to pain medicine,” she said.
To dull the pain, Diaz not only was hooked on medication but turned to alcohol as a teenager. That combination turned her life into constant misery. By the time she moved to Long Beach in her 20s, the unhappiness had reached a peak.
“I wasn’t happy and doing what I loved,” she said. “I felt I was in a cloud for a very long time.”
She eventually locked herself in her house for two weeks in 2012, didn’t refill any prescriptions and barely ate, essentially a do-it-yourself detoxing. When she finally left the house, she drove around and saw a sign for a Ronald McDonald 5K Walk. Since the Ronald McDonald House charity had been instrumental in helping Diaz out as a youth, she raised $400 in donations and walked the distance.
That’s when it dawned on her: “I figured if I could walk, why couldn’t I run?” she said.
Two weeks later, she saw a sign for another 5K and signed up to run. She’s been entering three or four races per month ever since.
“It’s completely changed my life; I didn’t expect this at all,” she said. “I just wanted to feel better because I had all of this energy from being sober. I didn’t know what to do with my time.”
Diaz, who works part time as a ticket-taker at the Queen Mary booth in Long Beach, is down to one medication and gets her high now from being on the road or participating in Spartan racing, a series of obstacle-course runs that test the body’s limitations. Diaz was involved in a Spartan race along a mountainous hillside two weeks ago that took 11 hours for her to complete.
“The pain that I’m in today versus how I was three, four years ago is different,” she said recently. “This pain is because I train hard and climb hills nobody should be climbing. It’s not from overdoing a medication or doctors making me into a case study. It’s a great pain.”
David Gordon, a pediatric orthopedic surgeon with 21 years of experience at Essentia Health-St. Mary’s Medical Center in Duluth, says the lower the damaged nerve roots are in the lower back, the more mobility the legs will have. Conversely, the higher the damaged nerves, the less leg function.
“Spina bifida includes a large group of people. Each case is an individual case and every one of them is different,” he said. “The fewer number of nerve roots involved, the less affected they are.
“But either way, to run this (event), you have to be a pretty motivated person.”
As with many other maladies, Gordon says athletic activity can play a crucial role in recovery or improving one’s self-esteem.
“It’s important to maintain that level of activity and that level of ambition,” Gordon said. “It’s very healthy to have that goal. Even if someone with spina bifida was in a wheelchair, they could be in the wheelchair (marathon). It’s somewhat motivational for people with disabilities to do these sorts of things.”
Diaz’s other motivation is talking to students in Southern California about her struggles with addiction and overcoming her condition. Her message is to find a passion, stick with it and never give up.
“Acceptance has been hard for me for a really long time. I struggled with that and I’m open and honest about that. By being open and honest, I’ve been able to reach huge audiences,” she said of her speaking engagements and Facebook followers. “For me, to be able to stand in front of a mirror was one of the hardest things to accomplish. I just bought a full stand-up mirror three years ago. Running has given me the confidence that I’ve needed for a really long time.”
Spina bifida challenges
Despite working as a nurse in the cardiac care unit at St. Luke’s hospital in Duluth, Jennifer McDonald wasn’t any more prepared than any other parent to find out her child had a life-altering problem.
There was no family history of spina bifida — McDonald’s two sons, 12-year-old Tyler and 10-year-old Tanner, are healthy — and she and Troy, her husband of 15 years, didn’t learn of the defect until Emma’s birth. Though her spine wasn’t showing through an open wound in the lower back, Emma’s spinal cord was stuck to the spinal column, necessitating the first of seven surgeries at just 2 months of age.
“It was very difficult not knowing that she had anything wrong with her,” her mother said. “You are basically told that your baby is broken. Kids with spina bifida are like snowflakes, they’re all very different, and you won’t know what they are able and not able to do until they grow up. For Emma’s first two years, we never knew if she would be able to walk.”
Emma underwent surgeries at Gillette Children’s Hospital in St. Paul and Essentia Health-St. Mary’s Medical Center in Duluth. The most recent procedure, a little over a year ago, included inserting seven plates and 22 screws to realign her lower body and undergoing bone grafts in her feet.
McDonald says her daughter, who attends Bayview Elementary in Proctor, has a strong spirit and meets challenges head-on. When faced with her most recent surgery, she insisted it be done in the spring so her summer wouldn’t be ruined.
Still, life’s realities can be a downer.
“We just went and saw her orthopedic surgeon and she asked, ‘When am I not going to wear braces, Dr. Gordon?’” McDonald related. “And he said, ‘I don’t think you’re ever not going to wear braces, Emma.’ The look on her face was utter sadness.”
While she wears the leg braces, Emma tossed the crutches aside only a few days after last year’s corrective surgery. She’ll be wearing those braces Friday while running a Whipper Snapper race at Bayfront Park.
Who knows? Maybe one day, she’ll visit Long Beach and run in an annual race that Diaz is in the process of creating and awaiting approval for from the state of California: the Never Give Up 5K.
No matter what the future holds, McDonald expects this weekend will be memorable for her and her daughter.
“I will be running the half marathon with Misty every step of the way, and will be crying the whole time, I’m sure,” she said. “My daughter will never see anything so important in her whole life.”