Listen to the music in the parkIf you’ve read my past blogs, you know how important music is to me. As a person with chronic pain, music has enriched my life and helped me get through many, many tough days. What you may not know, is that the chronic pain I live with is due, primarily, to a genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS). There are thousands of people around the world living with EDS, and coincidentally, many of us are musicians or music lovers. So, when we come together at meetings, music is very often a central component of our gatherings. We listen to musical performances by people with EDS, talk about music, or just plain have sing-alongs as we ride in taxis on our way to dinner. And, I’m so very grateful for this.

Over the years, as an active member of the EDS community (I served on the board of the Ehlers-Danlos National Foundation – now known as the Ehlers-Danlos Society), I’ve observed the many ways that people with EDS have used music to define who they are, and how they are able to go to another place—a magical place where the mind is enveloped by sounds that make the pain fade to the background. And, I’ve been blessed to know some brilliant and creative musicians who have demonstrated that music is good medicine for the mind, body, and spirit. Here are a few who, over time, have continued to amaze and inspire me:

Noah Baerman, jazz pianist. At one point, he considered giving up piano because of the EDS- related pain that took a toll on his fingers and hands. With the help of Silver Ring Splints, he was able to resume playing, teaching, and performing. I first met Noah in 2004 while he was “messing around” at a piano. They guy looked so relaxed and had a sly smile on his face as the jazz tune flowed out around him. In 2006, he released the album, “Patch Kit,” which, for me, sounds like a musical journey of the emotions those with EDS experience. You can listen to it at: http://www.noahjazz.com/disc_patch.html.

Paris Primeau, singer:  I met Paris in 2001, at a conference for people with Ehlers-Danlos Syndrome. At the time, she was a very small child who sang and danced without inhibition. She had a commanding, exuberant presence that made everyone sit up, take notice, and smile. A few years ago, I reunited with her via Facebook and YouTube and discovered, happily, that, with the loving support of her family, she’s continued performing and taking singing lessons. Because I know that she lives with EDS, I know that she experiences physical pain. But she doesn’t let this define or stop her. Check out Paris singing Learn To Be Lonely at https://youtu.be/anFaSall6rU. (She was also an American Idol contestant)

Kitty Richardson, singer, song writer, and musician. This inspired and inspiring teenager, from Oakham, Rutland, United Kingdom hails from a musical family and hopes to one day become a composer. She started playing violin at a young age, but had to stop because of her pain. Now she plays the piano, which also presents challenges because knuckles take a lot of the pressure when playing. In 2013, I came across her song, “The Cure” (https://www.youtube.com/watch?v=q9wamT-bLk8) and was so impressed that I kept an eye out for other music by her. In 2015, she released her album “Two Minds.” Clearly, EDS is just a footnote to this performer’s story.

Jordan Egan, Irish, singer songwriter, and an outspoken advocate for people with EDS. In 2013, she released the song, “Easy For An Angel” as part of her efforts to raise EDS awareness. She’s appeared on television and has been interviewed for articles in several media outlets. The song has proved so popular outside of Ireland, that it has become a staple for social media promotion every May, which is EDS Awareness month. Check out Jordan performing on “Saturday Night” at: https://www.youtube.com/watch?v=QLeJnhBqq5M. It’s exquisite.

My Really Big Idea: Someday I would like to produce (or co-produce) my “dream concert” for an Ehlers Danlos Society event. The concert would bring together, onstage, Baerman, Primeau, Richardson, and Egan. My vision—my hope—is that this quartet of talented people—all living with this painful condition—will not only make wonderful sounds together, but collectively remind those of us with pain that pain does not have to define us; and, that music (and other creative endeavors) can increase pleasure, provide meaning and joy, and help reduce pain for both artists and their audiences.

The playlist for this blog is:

  1. Bye Bye Backhand, Noah Baerman
  2. Limb-itations, Noah Baerman
  3. Patch Kit, Noah Baerman
  4. We shall Overcome, Noah Baerman
  5. Easy for an Angel, Jordan Egan
  6. The Cure, Kitty Richardson
  7. Only In My Mind, Kitty Richardson
  8. Wonderland, Kitty Richardson
  9. Learn to Be Lonely, Paris Primeau
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