MINNEAPOLIS, MN (June 16, 2008) – “I love my life even though I wouldn’t wish it on anybody,” says Heidi Stokes. “There is beauty in my life, incredible beauty.”
Most people would have difficulty seeing that beauty. The 49-year-old has endured agonizing pain since being diagnosed with lupus when she was 17; her husband, Brad, is waiting for a second liver transplant because he suffers from the same disease that killed Chicago Bears great Walter Payton; and her teenage son, Christian, developed Type I diabetes when he was 15 months old.
But that’s not all. Implants in her jaw that relieved pain caused by an allergic reaction to medicine were recalled and had to be removed. As a result, the pain returned. At one point, while the family’s house was being built, the contractor was found dead and his business burned to the ground. That left the Stokes family in a financially precarious situation.
And yet, Heidi laughs frequently during conversations. She also has turned her pain into an opportunity to serve and inspire others.
In April, the National Pain Foundation presented Heidi – a lifelong member of Bethlehem Covenant Church – with its Triumph Award. The award is presented to an individual living with pain who has made a significant difference in the lives of others.
The foundation’s website said the organization chose Heidi “for her amazing courage and strength in the face of daily pain, for her ability to bring joy to those around her despite her own challenges, and for her example of finding beauty and possibility in life in spite of her pain, illness and other challenges.”
Despite her own pain, she has been helping others move forward with theirs. Heidi is the former executive director of the Lupus Foundation of Minnesota. Currently, she is co-owner and director of marketing and business development for Aaron/Heidi Music + Sound.
Heidi says she had decided before her senior year of high school “to really commit” her life to Christ. Shortly after, that faith was tested when doctors diagnosed her with Lupus and she wound up spending months in the hospital.
Lupus is an autoimmune disorder in which the body cannot tell the difference between foreign substances and its own cells and tissues. As a result, the immune system attacks itself, causing inflammation, pain and damage through much of the body.
Part of her initial struggle was watching the lives of others being changed because of her illness.
“I felt like I was hurting people I love the most,” she explains.
“I had to forgive myself for being sick and forgive my friends for being healthy,” Heidi says. “I started feeling resentment that they were healthy” – especially when they would visit her in the hospital and complain about their pimples.
A resident had told her that if the disease continued to progress, she would be dead by the time she turned 21. Early on, however, Heidi was determined not to let the disease get the best of her.
“Fear and anxiety was a greater robber of my life than the disease.”
“I realized if I only had four years, then I wanted to enjoy my four years,” Heidi says.
“Sitting or laying in the hospital would not make my life better. Fear and anxiety was a greater robber of my life than the disease.”
Heidi says that she was living out the Apostle Paul’s words in Philippians 4:8 although she did not know them: “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things.” (TNIV)
She bought a motorcycle. “I wanted to feel the freedom,” Heidi recalls. Ultimately, she had to quite riding because it would exhaust her.
Heidi has lived well beyond the initial prognostication of four years because a new doctor began treating her with an anti-malarial drug that was proving to be effective. Even that added new pain, however.
An allergic reaction to the drug caused her jaw to dislocate, leaving her with terrible head pain. Doctors were able to implant devices that relieved the pain, but ultimately had to remove them when they were recalled.
She was sitting on the couch next to her husband and reading the newspaper when she told him, “Brad, nothing bad has happened to us for awhile,” Heidi says. “I turned the page and saw the story about the recall.”
Brad also continues to suffer from primary sclerosing cholangitis, a disease of the liver bile ducts that often is fatal. A routine medical checkup two years after the couple was married led to more tests that continued to baffle doctors until they found the correct diagnosis. In the interim, Heidi thought her husband’s condition was not serious and chided him.
“He thought he was going to die,” she says. “I told him not to be such a baby.”
Then when she learned the truth, Heidi says, “I felt like I hit a brick wall.” Not him.
“He was sort of giddy,” she recalls. “He looked at me and said, ‘I told you.’ He had done his mourning.”
Doctors had not begun doing liver transplants at the time, she says, but he eventually became number 524 at Mayo Clinic. Now he is awaiting another because after years of health, his current liver has failed.
Their son, Christian, was diagnosed with Type 1 Diabetes when he was 15 months old. He lives with the same determined spirit as his parents, Heidi says. She also is thankful for the support system of friends and faculty he has at Minnehaha Academy, the Evangelical Covenant Church school he attends.
“Our family is so much closer just because we have been through so much together.”
“Our family is so much closer just because we have been through so much together,” Heidi says. “We do a lot better than most families because we give each other a lot of rope. We just don’t keep track of the small things.” The accompanying photo was taken during Christmas last year.
Heidi’ faith has grown stronger because of – not despite – all that has afflicted her and her family. “You have to trust in God because you’re not in control,” she says. “I have been comforted by God in ways that people who don’t have to suffer cannot understand.”
“There are people who are so much worse off than I am,” Heidi continues. “There are people who live in a hut with flies around them. We have the best medical care in the world.”
That’s not to say she doesn’t have “temper tantrums” with God, she says. “He can handle it.”
Not surprisingly the Book of Job is one of her favorites in the Bible. Like Job, she says, “There was a time I didn’t think God was listening to me.”
While worshiping at Bethlehem Covenant, Heidi also had started attending a church that taught she would be healed if she had enough faith. “I believed, and it didn’t happen,” she recalls. “What does it mean if you believe and it doesn’t happen? So I went through a period of darkness and began to pull away from the church.”
Her faith was strengthened after meeting with Kent Palmquist, who was serving Bethlehem Covenant at the time and was willing to listen to her with compassion.
Heidi also is grateful for the love her church has shown. “Talk about the body of Christ being alive and well!” she says. “They have been there with me all of the time,” she says. “You learn what is real and true.”
Heidi believes that suffering can be transformed for good and provide a reason for living. “Working for the Lupus Foundation has been a gift,” she says. “I can live out my purpose.”
