“Music therapy has shown me what I can do”: Elizabeth’s Story

From a very young age, Elizabeth Sheeren was a dedicated “theater kid”. She performed in musicals, plays, and even operas as she participated in the Michigan Opera Theater Children's Chorus. Theater was her whole life and she even got to perform in a community theater show with her father, a special experience for her. A lover of shows like “Dear Evan Hansen”, “Wicked”, “Waitress”, and “Matilda”, Elizabeth received her first autoimmune disease diagnosis, celiac disease, when she was very young. Until she was 12 it did not impede her ability to do what she loved. However, when she turned 12, she started experiencing serious health concerns.

She found herself simultaneously performing in a show at her community theater, a main stage opera, and in her opera children’s chorus and says “I was overworked, but overjoyed”. She had a year contract with the children’s opera chorus but she started to get sick halfway through that year. “Initially, we were kind of in the phase of trying to figure out what’s wrong and, of course, you always hope that there is some sort of simple answer, some sort of simple fix that will make it go away. You hope you’ll find the right treatment and just need to push through a couple of months.”, Elizabeth said. “One of the symptoms that really impacted my ability to perform was fatigue. I was just exhausted from the war that was happening in my body.”

At this time performing was taking up much of her energy. The Opera Chorus let her just come when she could for quite some time but it was very hard on Elizabeth’s body. They had a long commute and sometimes rehearsals lasted four or five hours. On top of all of this, it was very hard for her to get to school as well. “It was pretty sudden that it just stole my ability to perform. I had no energy, I felt awful all the time, I struggled with a lot of joint pain and stiffness, I had a lot of nausea, I lost a ton of weight because I just couldn’t eat…It was pretty stark to go from school then hurry off to some sort of rehearsal to then another rehearsal to then…practically nothing. Thankfully it did not rob my ability to still listen to shows and enjoy things virtually.” Elizabeth often had to go to New York City to see doctors there and her parents always made sure that they made time to do something fun and so she got to see many Broadway shows.

Eventually, she was diagnosed with multiple autoimmune diseases, meaning her immune system attacks various parts of her body. She also was diagnosed with mast cell activation disorder and an autoinflammatory disease. “This causes a host of different issues. It impacts my joints. It impacts my GI tract. It impacts my skin, my muscles. It impacts my whole body, my brain, pretty much everything.”, says Elizabeth. Looking back, she and her family have noticed that even before her more serious diagnosis, while she was able to function, she never was quite the same as her peers when it came to health.

At 14 Elizabeth was doing a treatment in which she needed to have a week long stay in C.S. Mott Children’s Hospital every month. “One day, Meredith knocked on my door and the rest is history. We immediately bonded.”, says Elizabeth. Meredith is Elizabeth’s extraordinary music therapist. At the time Elizabeth really wanted to learn how to play the ukulele. Meredith was able to teach her and eventually Elizabeth got to the point in ukulele where she was teaching Meredith! Elizabeth also learned some guitar and they did a lot of singing. Finally, Elizabeth had the ability to engage meaningfully in music again, the way she could before her illness. Music therapy even gave Elizabeth the opportunity to perform again!

Prior to the COVID-19 pandemic, C.S. Mott had an event every week called the Skyline Cafe where there was pizza and live music from volunteers, music therapists, and their patients. Elizabeth was able to perform at this event many times and could finally express herself again in that way that she so loved. “It was very healing for me. Performing was very suddenly stolen from me in a time when it was becoming my everything and I missed it terribly. My disease took away my physical ability to perform, but it didn’t take away my desire to perform…In fact it just made it stronger…Theater can be such an escape…and that was something I really really missed.” She shared that she almost felt like a part of her was missing and performing again brought that back to her. “It gave me something to do that was so healthy…Music has always been healing. It just was really healing for the soul to have that connection with music.” Elizabeth also has been able to record some of the music she learned with Meredith and that is something her and her family can keep for the rest of their lives.

She expressed that sometimes feeling constantly sick and having to be in a hospital can cause some anger that so much was taken away from her and that can create a negative association. This caused Elizabeth to feel some anger when she thought about performing but “music therapy really helped ensure that I still was able to have a really healthy relationship with that part of me.” So yes, she misses being a part of shows, but music therapy has helped that to no longer be a sore subject for her. Instead of dwelling on the things she has missed out on Elizabeth now says: “Look at all that I’ve gotten to do. Look what I still get to continue to do. There’s plenty I can’t do, but music therapy has shown me the things that I can do.”

At 14, Elizabeth was Meredith’s first patient. She is now 22 and Meredith and Elizabeth still have a wonderful time together having music therapy sessions when Elizabeth is at the hospital. A few months ago Sophie's Place, a dedicated music therapy space, was opened in C.S. Mott Children's Hospital, Elizabeth’s hospital. Long before Sophie’s Place was opened in the hospital, Elizabeth shared that she used to dream about what it would be like to have a space just for music therapy in the hospital. “It’s a great physical escape.” She said as she shared that finally there is a space where the only intention is to create and there isn’t an association of the many uncomfortable things that have to happen in a hospital. “When the music therapist comes into your hospital room they kind of create that environment there, but it is a whole other thing to actually go and experience that environment. The first time I went into Sophie’s Place I was overwhelmed by how amazing it is and overcome by what a sacred space it felt like. It felt so different than any other room in the hospital and, trust me, I’ve been in just about every room at Mott. It just has such a special feel. You can feel Sophie’s presence and the power of music.”

Elizabeth and Meredith performed a beautiful rendition of “For Good” from “Wicked” at the Sophie’s Place Grand Opening and Elizabeth shared with me how rehearsing for and performing that took her right back to her theater days. For once she felt like she didn’t want to leave the hospital. “I’m so excited for other patients to experience this safe space, this sacred space, a space that is dedicated to music.” She also shared her gratitude for the amazing opportunity it is to have professional recording equipment in that space as well as the green screen, real drum set, and other amazing instruments included in the space. Finally, Elizabeth expressed, “Just seeing [Sophie’s Place] brings me joy.”