Making the Choice Not to Give Up

If you could go back in time and see Chris Johnson, now 57, living his life in 2013, you would find an active and dedicated family man. He worked performing autopsies in Flint, Michigan, where he lived with his family. He wore leather jackets and nice suits, a picture of fashion, fun, and laughter.

Then on Thursday, June 13, 2013, a single mosquito bite changed his life forever.

He scratched the itchy bite on his arm so much that it became an open wound. At one point that day, Chris walked past his fish tank, one of many he’s had since he was a child. Without thinking, he stuck his left arm—the arm with the bite—in the water to pull out a loose piece of paper that had gotten stuck in the tank.

Two days later, Chris’s left arm was swollen, making it incredibly difficult to use it as he performed autopsies. Normally, he was able to get through several cases at work in an eight-hour shift. This day, though, he could only complete one case—and he had to work one-handed.

He went to urgent care and was prescribed anti-allergy medication, but he didn’t get any relief. “It was the longest night of my life,” Chris says. “It felt like a vice grip was on my arm just squeezing.”

The next day, there were two red streaks traveling up his arm—a sign of a major infection. Chris was sent to the emergency room.

One week after he reached into the fish tank, Chris had surgery to treat the cellulitis infection doctors believe was caused by something in the fish tank that came into contact with the open wound from the mosquito bite. Doctors later found evidence of carpal tunnel in the same arm, requiring another surgery.

Following the surgeries, Chris began experiencing tingling, numbness, swelling, stiffness, and limited range of motion in his arm—but what stands out most in his memory is the pain. “On a scale of one to 10, mine was a 20,” he recalls. “My arm felt like a knife was just stabbing and cutting, cutting and stabbing.” Medications didn’t touch the pain, and when he went to doctors for help, he was met with shrugs and disbelief.

Finally, in 2014, he saw a specialist who diagnosed him with complex regional pain syndrome (CRPS). CRPS often develops after an injury or surgery and is characterized by pain that is greater than expected for the initial injury. There is no cure, although various treatments exist to help with the immense pain it causes. It often is called the “suicide disease” because of the extreme pain it causes and its difficulty to diagnose and treat.

PAIN SKYROCKETS WITH LITTLE RELIEF

Having been diagnosed with intense chronic pain, Chris was told he was a good candidate for a spinal cord stimulator—a device that can help lessen the body’s reaction to pain by sending shocks along the spinal cord that intercept pain signals before they reach the brain. He had a successful trial with a stimulator but then had to wait about a month until insurance approved the surgery to permanently implant the device. After having his stimulator placed, though, rather than pain relief, Chris began experiencing shocks at random times from the device. He approached his doctors for help multiple times but was told the device was working as it should. “I had lost all faith in doctors,” he says.

The pain became so unrelenting that Chris actually considered amputating his own arm. Having been someone who performed autopsies, he understood the process. “I had my scalpel, my blades—I actually was ready,” he recalls. “I prayed, ‘If they don’t believe me this time, I’m actually going to cut it off,’ and I was going to take it to them.”

Thankfully, a representative from the stimulator manufacturer was at the doctor’s office the next day. Her tests on the device found that it wasn’t working as it should. An emergency CT scan proved Chris was right—the device had moved down his neck and was indeed malfunctioning. Chris underwent another surgery to replace the stimulator, but ultimately it didn’t offer much help for his pain. Instead, his health issues continued to worsen.

SPINE ISSUES COMPLICATE HEALTH FURTHER

In November 2016, Chris tried to hurry to his car one day. “My mind was telling my legs to run, but I was not running,” he shares. After getting home, he fell and struggled to get back up. Chris was diagnosed with spinal stenosis—a narrowing of the spaces in the spine. He needed another urgent surgery.

When Chris was sitting on his hospital bed and resting following that surgery, a nurse came in to check on him and began screaming. Chris hadn’t realized it, but he was hemorrhaging blood quickly. Several days later, although his stitches had been reinforced, he was still hemorrhaging. Before being taken back to the operating room for another procedure, Chris told his family that he was sure he was about to die. His family encouraged him to stay positive, but one of the next things Chris remembers is being in heaven. “I said, ‘I know I’m dead. Lord, God, I’m sorry for everything that I’ve done. I know my family will be OK in your hands,’” he recalls.

Suddenly, it “felt like a vacuum cleaner was sucking me back,” Chris remembers, and he woke up paralyzed and in an MRI machine.

Doctors couldn’t tell Chris what had happened. They knew it wasn’t a stroke. They also knew that Chris was still dealing with an infection that they were not sure would clear up unless the second spinal cord stimulator was removed. So, it was, thankfully without incident, and the infection gradually cleared and Chris was able to regain some mobility.

At that point, Chris says, he decided that he would “just deal with the pain” of his CRPS and spinal stenosis instead of trying to become pain-free. By 2019, though, his primary care provider determined that Chris needed a two-part neck fusion surgery to help save some of his mobility. The first surgery was in 2020. Then, they spent months fighting his insurance company, which didn’t want to approve the second fusion. That surgery didn’t happen until February 2022.

FINDING ACCEPTANCE TODAY

Chris’s CRPS is continuing to progress, causing pain in both arms, as well as his neck and back. His last spinal fusion also involved work on the nerves around his spine to try to help alleviate his pain, and while it gave him some relief, Chris says he knows he’ll never be pain-free. Today, he manages his CRPS by avoiding cold weather and using a transcutaneous electrical nerve stimulation (TENS) unit. Meditation, massage, prayer, and yoga have been helpful as well.

“Before these surgeries, the pain was between eight and between eight and 10 daily—sometimes an 11,” Chris shares. Today? “I’d say about a four or five.” He has found new ways to do things he loves. Once an avid musician, he listens to more music now. Instead of running, he walks slowly on a treadmill or plays with his 6-year-old granddaughter.

He’s also turned his journey into a way to help others, offering coaching on living with chronic pain, and talking about grief and loss. Although he can no longer perform autopsies, helping folks at the end of their lives through hospice volunteering gives him new purpose.

Offering advice to others gives him new perspective on his own pain. “If my body is telling me it’s time to relax and sit down, I relax and sit down,” he says. (His young granddaughter reminds him to do this, too.) Not only that, but he’s able to help people who don’t have others to relate to: “The main thing [that people tell me] is that ‘I’m so glad someone is listening to and understanding what I’m going through.’”

Chris has this to say to others: “When you least expect it, things come if you don’t give up. Just hold on. God will send somebody to you, and they will know what to do.”

—Grayson Schultz