40-year-old Tasha Taylor of Cleveland lives with excruciating pain from sickle cell disease (SCD).
“It feels like someone’s constantly stabbing you, but you’re not dying. You’re just being stabbed over and over for a week or more,” said Taylor.
When she’s in a crisis, she describes her pain level as a 10/10 or worse. She stops whatever she’s doing and lies down alone. The condition makes her feel isolated, anxious and depressed. The episodes can last for days, weeks or sometimes months and often send Taylor to the hospital.
During an inpatient stay at University Hospitals when Taylor was just a teenager, she discovered music therapy.
“I was nervous during my first sessions and I was in pain, so I didn’t want to open up. But the music moved me and once I accepted that – it was a go,” said Taylor. “I embraced it and began wanting to make music and talk with other patients.”
Taylor’s favorite instruments are the iPad piano and the drums. She also enjoys creating music through the computer program GarageBand.
“Our most widely used integrative approach has been the use of music therapy to assist with pain management, quality of life, and the transition from pediatric to adult care for individuals with sickle cell disease,” said Samuel Rodgers-Melnick, a music therapist and clinical researcher with UH Connor Integrative Health Network (UH Connor) who has worked with Taylor since 2013.
Rodgers-Melnick served as the principal investigator for the first systematic research on the use of music therapy for individuals with SCD and has led several studies on the topic since 2014. These studies support the benefits of music therapy for managing acute pain, improving self-efficacy, and improving sickle cell disease knowledge in adolescents and young adults transitioning from pediatric to adult care. UH Connor has provided thousands of music therapy sessions, both individualized and group, to hundreds of adults with SCD since 2012.
“When I met Sam, he would come in and my pain would be a 10. When we were done with our lessons, I was at a four or a five. Music eases my pain, it eases my body, it eases everything. It calms me. It calms my anxiety and depression,” Taylor said.
“Tasha has discovered how music can not only help her manage pain and anxiety, but also express her thoughts and feelings about living with sickle cell disease. She has fully embraced music therapy and it has been a pleasure working with her, creating songs with her, and seeing how music therapy has changed her life. She now encourages other patients with SCD to try music therapy,” said Rodgers-Melnick.
UH Connor has also provided acupuncture services to adults with SCD admitted for pain crises.
“Patients would tell me how beneficial acupuncture was for improving their symptoms while they were admitted. I really enjoy being able to collaborate with acupuncture to help patients with sickle cell disease when they are admitted to the hospital,” said Rodgers-Melnick.
“Integrative health affirms the importance of the relationship between the patient and care provider and focuses on the whole person,” says Francoise Adan, MD, Chief Whole Health and Wellbeing Officer and Director, UH Connor Integrative Health Network and the Connor Endowed Chair of Integrative Medicine. “Our goal at UH Connor is to build on the extremely successful evidence-based programs we’ve already deployed to ensure continuous improvement in care delivery, patient satisfaction and positive health outcomes.”
Taylor continues to rely on music therapy for pain management as her pain crises worsen with age. When she’s not admitted to the hospital, she and Rodgers-Melnick hold weekly virtual music therapy sessions from home. She uses links to music therapy exercises and meditation guides to manage her pain. She listens on her phone and relies on the lessons nearly every day.
“Music therapy has had a big effect on my life. It taught me to control my emotions when I’m angry, sad. I know how to elevate to music to calm myself down or ease my mind, relax, clear my head and then start back over.”