From CRPS to College: A Mother's Journey Through Pain, Healing, and the Power of Resilience

This post is written by a parent with a child in the CHYP community.

I just got off the phone with my daughter, Niko, a freshman at college. She chatted about her upcoming week: volunteering with emotional support dogs, studying for an ASL quiz, and traveling home for Thanksgiving break. After I hung up, I sat for a moment and thought. I never imagined eight years ago, or after this past year, that this would be our conversation today.

As I reflected, my eyes filled with tears of joy. I was in my living room, curled up in my favorite chair with my furry companion, looking out the window at the sun shining through the trees. I had a flashback of Thanksgiving 2016: I am in my same chair, but the living room is reconfigured to fit a daybed so Niko can sit comfortably. The dining room table is pushed aside so Niko can maneuver with her crutches or wheelchair. Piles of schoolwork are on the table, waiting for the district tutor to help Niko complete it because she has missed months of school. On a chair is her bag, packed with stress toys, art supplies, and an iPod loaded with hypnotherapy recordings for the long car rides to her daily appointments. And on the kitchen counter, there’s another pile – the daily medication organizer, a daily schedule to help establish a home routine, and a calendar full of doctor appointments. This is our new normal.

Our life felt reminiscent of Pixar’s Inside Out, the story of a nine-year-old girl uprooted from her home in the Midwest and moving to San Francisco. She struggles with her emotions: fear, sadness, anger, disgust, and joy. In the process, her personality “islands” of family, friendship, experiences, interests, and passions crumble and rebuild as she settles into her new life.

The year the movie premiered, Niko turned nine, and our family moved from Massachusetts to California. She watched the movie with her two best friends, and although the movie night ended in tears, I had a platform I could reference when I talked to Niko about her changing life and her emotions. Niko was in a new home, a new school, and a new community while being injured, isolated, and in debilitating pain. Niko’s “islands” of support were crumbling, as we were riddled with the emotional distress of navigating the medical system without our support systems from back home.

The path to find Whole Child LA was full of physical and emotional pain. Niko had excruciating ankle pain that had persisted after a sprain. We saw endless doctors, and with each visit, our emotions surged. It was infuriating when the nurses lectured us about correctly dosing and taking ibuprofen to alleviate the pain. It was disgusting to be placed on long waitlists, to receive blank stares in doctors’ offices, and to be accused by medical professionals of overexaggerating pain symptoms. It saddened me that Niko was in so much pain, was not in school, and missed her home and best friends. It was frightening to think of Niko being in pain indefinitely and not finding medical help. These feelings were all-encompassing as we stumbled through the rubble that was once Niko’s happy childhood in Massachusetts.

Then, one day, I heard about Whole Child LA. While I awaited our first appointment, I read Conquering Your Child’s Chronic Pain, written by Dr. Lonnie Zeltzer and Christina Blackett Schlank. At the first WCLA appointment, Niko was diagnosed with CRPS (complex regional pain syndrome). In addition to medication, she was prescribed a comprehensive mind-body care program that included physical therapy, psychotherapy, and hypnotherapy.

Niko’s healing began, and with the support of the WCLA team, she started building her “island” of healing. Although she was still in immense pain, Niko experienced her first moments of joy. Lonnie was so sweet as she kindly asked Niko questions, and Dr. Paul Zeltzer would pick fresh fruit from their trees for us to enjoy on our ride home.

Dr. Samantha Levy helped Niko use art and her imagination to create characters and stories about her feelings. This enabled her to recognize and heal from the painful emotions caused by the move and other childhood events. In her office, Niko would cuddle with Samantha’s dog; in the backyard, there was a big tree that Niko would eventually climb.

Diane Poladian, PT, inspired and trained Niko to regain her strength and years later, her dream to run again came true. Dr. Kathryn de Planque, hypnotherapist, guided Niko to heal and feel confident to return to school while Niko savored a piece of chocolate and relaxed in Kathryn’s comfy recliner. After months of medical care and therapies, Niko recovered. She began to build new “islands” when she returned to school, made new friends, and eventually ran track.

I learned so much from the team and built my new “island” of parenting in healing. The Zeltzers instilled in me the value of sitting back and observing. Samantha taught me great lessons such as “not asking about the pain,” “acknowledging accomplishments despite being in pain,” and “recognizing positive actions.” Diane showed me how physically and mentally strong Niko was. And Kathryn eased my fears by including me in an unforgettable guided imagery session.

Niko recovered from CRPS, but throughout middle school and high school, she developed migraines and abdominal pain, sustained other injuries that triggered pain flares, and was afflicted by illnesses lasting for prolonged periods. Emotionally, she battled anxiety and depression during the pandemic and after the loss of her grandmother. During this time, I stayed connected to WCLA through CHYP. I became a member of CHYP’s parent advisory group and participated in the monthly CHYPchat support sessions with other parents, which helped me further develop my understanding of the mind-body relationship and guided me in parenting and caring for Niko.

Seven years after her initial battle with CRPS, Niko was heading into her senior year, planning for college and running track. One day at practice, she rolled her ankle. When Niko told me, I had to set my fears aside and assure her that she would be okay. Yet, weeks later, Niko’s ankle was not healing. She was hurting emotionally, too, as her grandfather lost his battle with cancer. Our “islands” were crumbling again, and the emotions came flooding back: fear of the agonizing pain returning, anger for all the suffering she endured, sadness for yet another loss, and disgust with the threat of her vanishing dreams. I knew how closely mental health and physical pain were intertwined, the support that I needed, and what my next steps would be.

I contacted the Zeltzers at WCLA and joined CHYP’s parent group. The Zeltzers confirmed that Niko was experiencing a CRPS recurrence, and I trusted that they would help her heal again. I joined the CHYP parent group’s monthly meeting and was met with compassion and guidance from Samantha and the parents who also experienced relapses with their own children. I realized that this diagnosis was different. Niko was no longer a little girl, and I needed to learn how to parent my almost adult daughter in pain. So, I joined Samantha’s small parent group, Creating Bonds for Parents. The group supported me initially with my daughter’s CRPS recurrence and subsequently in my unexpected separation from Niko’s father. Even still, I realized that my “islands” were growing stronger.

I had to trust that Niko possessed all the qualities necessary for recovery but needed to learn how to heal. She worked with Diane and relearned physical therapy exercises to strengthen her ankle. She developed a deeper understanding of the mind-body connection by reading The Smart Brain Pain Syndrome by Georgia Weston, LCSW, Dr. Lonnie Zeltzer, and Dr. Paul Zeltzer. She completed the prompts in the book and identified creative healing activities that helped her: devouring books, braiding friendship bracelets, and painting for her school’s club, “Portraits of Kindness.” Despite being in pain, she kept going to school with accommodations, worked at her job (with a chair to rest), toured colleges with a limited itinerary, and traveled back to her hometown in Massachusetts, with scheduled naps between outings with friends.

Initially, I thought Niko would recover quicker from the recurrence, but she was processing a lot of emotional pain: rebuilding her home life after her father moved out, struggling with college applications, and putting on a brave face at school and with her friends. Through the emotional and physical pain, Niko eventually healed. What was different was that she was the driving force in her recovery: setting her pace, integrating her creative healing, and pursuing her dreams.

When I retell Niko’s story of healing, I feel fear, sadness, disgust, and anger sneak up on me. Then, I envision my “islands” of parenting and healing and feel the support of the WCLA team and the CHYP parent groups. In the end, I think of my loving, resilient, and courageous daughter, who is continuing to build her “islands” and who is coming home for the holiday. And I am full of joy!