Finding Ways to Live Well—With Pain

Millie Quiñones-Dunlap spent years trying every kind of treatment she could to cure herself: Medication, physical therapy, chiropractic care, massage, spinal injections, trigger point injections, cupping, acupuncture, spinal decompression, and 11 surgeries.

In most cases, however, the treatment either had no effect or made the pain worse. Then, after more than a decade, she tried something that finally worked: Trying to live with the pain. At that moment, she says, “Something clicked inside me. When I decided to stop fighting, it was like a weight lifted off my shoulders.”

Part of the reason it may have been so difficult for Millie, 50, to accept a life with chronic pain was because she had spent most of hers without it. She was a healthy 33-year-old schoolteacher and librarian from the Bronx, NYC, who was residing in Rochester, New York, when an unexpected injury at work started the trouble. At the time, she had a 9-year-old son and was extremely active—she loved to dance, performed slam poetry, and even did a one-woman show she called “Through the Eyes of a Bronx Girl.”

The physical pain was only one part of her descent; Millie also withdrew socially and battled depression after her injury. “I didn’t know who I was anymore,” she says. “I was hospitalized for suicidal ideation because the pain, both physical and emotional, was so intense.”

Fortunately, with the help of therapy, support groups (she now runs two), her family’s love, and a new mindset, Millie was able to pull herself out of the spiral. Now, she says, “My goal is to have a good life with pain.”

ONE MOMENT CHANGES EVERYTHING

In December 2005, Millie was on breakfast duty at the Rochester high school where she worked when a fight broke out in her section of the cafeteria. As students running to see the brawl pushed past her, she fell, herniating a disc in her back.

She tried physical therapy, chiropractic care, and other therapies unsuccessfully until she was approved for spinal surgery in June 2007.

A laminectomy was the first of many surgeries, but it only made her sciatica and back pain worse. Millie took medical leave from work that ended up extending through 2009. “I went to the emergency room in sheer desperation many times in the early days of my pain journey,” Millie says. “I was treated like a drug seeker or a drama queen, and it made me feel terrible, discouraged, like nobody believed me.”

Doctors and specialists cycled her through different medications. “I felt like a crash test dummy,” Millie says. And none of it significantly helped her pain.

Eventually, the long-term use of opioids to treat her pain led to hyperalgesia, a condition characterized by an abnormally heightened sensitivity to pain. “Even putting on clothing hurt my skin,” she says.

In spite of that, she returned to work with restrictions in July 2009 and loved being able to teach again. Millie’s husband William watched her struggle and wondered when she was going to stop working. She says, “I always told him, ‘I’ll know when I know. When I do, don’t ask any questions, just come get me.’”

In September 2016, she made that call, and he came to pick her up from her last-ever day of work.

SEEING THE LIGHT

The second day that changed Millie’s life started with simply getting out of bed. She had spent a lot of time in bed during the previous 13 years, and this was the first day she had decided to live with her pain rather than fight it. She stopped all her medications to “find out my baseline pain and how I can live with it,” she says.

Unmedicated, the pain affected her range of motion and was so severe that she sometimes needed help getting on and off the toilet. In spite of it, she sat outside and tried to practice mindfulness. “I wanted to write a meditation that could speak to the experience I was having right then and there,” she says.

Do birds feel pain in their wings when they fly on their journeys? she wrote. They must flock together because there is strength in numbers. Who do you have to hold you up when you are feeling down? Who do you tell your problems to? Who makes me feel better on a very painful day?

Acceptance was a turning point for Millie. “When my pain was acute, I had hopes that I would pull through and come out on the other side pain-free,” she says. “I was in denial that my pain was chronic.” When one doctor recommended she seek therapy, she says, “At first I was annoyed.” But gradually she realized that she had to grieve the life she’d lost.

In addition to her job, she lost her independence and felt like a burden to her loved ones. She had also been hoping to have another child one day. “My doctor told me to wait until my pain was more manageable before I try to have another baby,” she says. “That never happened.”

Millie finally decided that she wanted to change her narrative. “I was becoming a victim to my own circumstances, and I didn’t like it,” she says. “This is not how I handle adversity.”

FINDING NEW SOLUTIONS AMIDST NEW ACCEPTANCE

Today, Millie manages her pain with water and massage therapy, muscle relaxers, and medical cannabis gummies to help with sleep. She continues to go to therapy. “My husband and my son are definitely my advocates,” she says. “They have been there through the good times and the very bad times surrounding my pain journey. I have family and friends who constantly remind me that I am living the best version of myself right now.”

The severity of the pain depends on the day and weather. In addition to the back pain stemming from her initial injury, Millie has been living with chronic migraine since 2019, has carpal tunnel and neuropathy in her right hand, and was recently diagnosed with lupus.

She used to visit her family in the Bronx frequently, but she hasn’t been there in more than five years. “Pain is isolating,” she says. “People don’t know what to say, so they brush it off or avoid you. And you get tired of telling people you don’t feel well, so you just don’t answer the phone or go anywhere.”

She wishes that people were more understanding of how pain affects every aspect of an individual’s life—even their brain chemistry.

“We have to slow down,” Millie says. “There is so much planning involved in long-distance travel that it is difficult and close to impossible to do. We get fatigued but can’t sleep. One day pain can be bearable, while the next day the pain is out of control.”

Although she hasn’t been able to return to the stage, Millie has been able to resume her role as an educator. She is the specialized support group leader for the U.S. Pain Foundation’s Writing Room and Reading Room groups. “I feel like my old self when I run support groups,” she says. “I feel alive!”

She’s found that eating well and moving her body—she spends considerably less time in bed and does stretches and yoga when she can—help her feel her best.

Meditation and writing are vital outlets for Millie. “I dedicated so many years to pain; now I’d like to think about other things,” she says. She’s working on collecting her stories into a book and takes writing workshops on Zoom.

“It still hurts, and it’s always going to,” she says. “So I guess my challenge is to find joy in the little things. I don’t want to simply exist through the next decade of my life. I want to live an intentional life. With pain.”

—Jill Waldbieser

If you are struggling with suicidal thoughts and need help or someone to talk to, you can dial 988 to reach the 988 Lifeline. Additional help is available in the Resources section on page 68.