Finding a Way Out of the Storm

It started in the spring of 2021 with a little twinge in her shoulder.

Dorene MacKinnon was too busy to be concerned. She had her students at Durham Technical Community College in North Carolina, whom she advised as they overcame barriers to getting their high school diplomas. She had her wide circle of friends, volunteer activities, and athletic pursuits—she liked to put in 25 miles per day on her bicycle.

The little twinge became more noticeable, and the discomfort was beginning to migrate down her left arm. Dorene went to an orthopedist, who diagnosed a frozen shoulder and advised her to begin physical therapy to loosen up the muscles.

The therapy didn’t touch the pain or improve her mobility. Cortisone shots didn’t have an impact, either. She was having difficulty getting dressed, and with the increasingly limited use of her arm and hand, she couldn’t write legibly. “It was slowly beginning to take parts of my life away,” Dorene remembers.

By August 2021, Dorene’s doctors determined that the next logical step would be surgery: opening up her shoulder to do a manual manipulation to get the muscles moving again. But when she woke up after the procedure, Dorene knew something was seriously amiss.

“My arm was stuck at my side; my hand was ice cold,” she remembers. She tried to resume physical therapy, “but I had no feeling in my hand. It was swollen like a baseball glove, and I couldn’t do it.”

Her doctors gave her a grim diagnosis: complex regional pain syndrome (CRPS). Often the result of trauma or surgery, CRPS usually manifests as intense pain in the affected arm, leg, hand, or foot that’s significantly out of proportion to the injury suffered. The throbbing, unremitting pain in Dorene’s left shoulder, arm, and hand wouldn’t get better anytime soon, she was told—and could likely even get worse.

A NEW REALITY

It’s been a year since her surgery and subsequent CRPS diagnosis, and Dorene’s new life is nothing like her old one. The constant pain is beginning to take hold in her back, down toward her hips, and over to her right shoulder. She can no longer drive because of the lack of use of her left arm. Her inability to safely cook, prepare, or reheat food has caused her to become malnourished. Her adult daughter and a home health aide help her with daily tasks and personal care. The pain is so severe and so debilitating that some days, Dorene, now 50, can’t get out of bed.

“Chronic pain really changes you,” Dorene says. “I don’t know how I’m going to be in a week, or in a month. Two days ago I was in a wheelchair, and today I am walking. Last January I was volunteering in a community garden, and this year, I could never walk that far—it would take the breath out of me.”

But to have a conversation with Dorene is to understand that the human spirit can soar above the everyday indignities, the uncertainty, and the life-changing realities of chronic pain. “The storm that I’m in, it’s going to run out of rain,” she says. “I have CPRS, but CPRS doesn’t have me.”

To get to this recent point of acceptance and even optimism has been a journey that at times has been as debilitating as the pain itself.

There are the everyday indignities of trying to explain to people that she needs help. It took the better part of a recent morning for Dorene to explain to a drug store clerk why she needed a prescription filled in a bottle with an easy-open lid. The clerk insisted that a standard bottle was easy to open with two hands, ignoring Dorene’s reminders that she only has the use of one hand. “He kept talking over me and showing me how to open the bottle with two hands,” she recalls. “People look at you, but they don’t see you; they don’t understand what you are saying. He literally could not process what I was saying.” Dorene quietly, but firmly, insisted that she talk to his boss, and finally, the revised prescription bottle information was added to her profile.

When she first got her diagnosis, Dorene recalls wondering, “Am I ever going to stop being tired all the time and having all these pains all the time? My body just couldn’t fight it. I was overwhelmed by what the doctors were telling me. And the doctors were chasing answers, they were chasing a cure, but my body was tired from running with them. When you are in a storm, you wonder when you can dry off and when you can rest, and I finally just gave up.”

At a visit with her primary care physician in December 2021, Dorene broke down: “I cried and I cried, and I told her I honestly don’t know if I could make it, and she said, ‘I am going to get you through this.’”

Her physician arranged for Dorene to see a mental health professional and pain specialist, and connected her with a support group for people living with chronic pain. “She knew I couldn’t do it anymore, and she made it happen,” Dorene says. “She made sure I got the therapist and my second opinion with someone who would listen to me for pain management, and she followed up with me to make sure I was OK.”

A NEW DORENE

Learning meditation helped distract Dorene somewhat from the pain. And the support group gave her the knowledge that other people needed her strength to help them cope with their own pain, even as they helped her cope with hers.

“I had to stop looking at who I was and instead look at what I am going to be,” Dorene says. “I have so much to offer, but I have to discover those new abilities within my disability—it’s in that word.”

Even if she has a day when it’s all she can do to get out of bed and take a shower, “Hey, there’s an ability,” she says. And on days when she can’t muster the strength to get out of bed and still joins her support group with a Zoom call, “It’s, ‘Hey, at least I can do it from my bed.’ That’s an ability.”

The “old” Dorene had a PhD in educational psychology and a lyrical way with words. Today, Dorene has regular therapy sessions to help her re-learn how to communicate. “I can’t spell, and even basic math is hard for me now,” she says. “When I try to read, I get stuff mixed up—I get words mixed up.” Her doctors have explained that because Dorene’s brain is so focused on coping with the unremitting pain, it can’t focus as much on the functions and tasks that used to come easily to her.

“I feel like CPRS has even taken my intelligence from me,” Dorene says. “I’m not the person who I was on August 19, 2021”—the day before Dorene’s surgery date. “I don’t have the skill set, the cognitive ability. I might have the same face, but I’m not her. I am such a different person, and I don’t know yet who that person is—this pain is reshaping me and defining me.”

Day by day, she is working on building a new life as she learns to let go of her old one.

“That’s the hope I want to give chronic pain patients, but first I had to see it for myself,” she shares. “My name is Dorene, but I am a new Dorene. I am a warrior and a fighter, and I am trying to be all that I can be with this pain. Depression, anxiety, hopelessness—I’ve felt that, but I don’t want to be defined by CRPS.”

Today, she is getting to know the new Dorene.

“I’m trying to do more looking forward, to tackle things when they come,” she says. “It’s hard, when you think about what life was, but I am trying to think about what life is.”

—Calli Barker Schmidt