What Playing the Piano Has Taught Me About Living With EDS

The initial pandemic shutdowns last spring brought my family’s very busy schedule to a grinding halt. We decided to use the time to improve our emotional and physical well-being. We worked on our relationships with one another and inducted a new member into our family.

During the spring and summer months, we spent a great deal of time outdoors challenging ourselves with physical activities such as stand-up paddleboarding and kayaking. In the fall, my best friend and I married, and our family moved into a new home.

Packing up belongings, moving small things, cleaning both the new place and the old, and all the unpacking and reorganizing brought on fatigue and considerable pain in my shoulders, neck, and hands. I was not looking for an additional physical challenge. Nevertheless, a physical challenge found me.

Renewal can come from something old

Our new home is not actually new. It was built circa 1890 and is situated in our town’s historic district. I fell in love with its quirks and charming features, not the least of which is an antique baby grand piano with a really neat history of its own.

This little gem served as a player piano in an old mansion in upstate New York. It was moved to this house, the player mechanism was removed, and the piano was restored to function like a regular piano. It was given a new life and the opportunity to serve a new purpose. This piano had a job to do and it deserved more action than children plinking its keys haphazardly in passing.

In his excitement over spending the holidays in our new home and having a piano, my husband said it would be wonderful to gather around the piano and sing Christmas carols. It struck me that although I had not played in decades, I could probably learn some simple Christmas music by then. Given the problems with my hands, relearning piano presented a formidable challenge, but I had the opportunity and a strong motivation.

(Graphic by Kimberly Zapert)

I paid attention to my posture and paced myself. I adopted the attitude of “practice and enjoy today, but leave some room for tomorrow.”

Self-care is important and concentration helps lower my anxiety

It seems counterintuitive to pursue a difficult task for relaxation. However, the process of slowing down and focusing on one thing at a time can reduce quite a bit of stress for me. If I’m on autopilot, my mind has room to think about other things, and worries creep in. Translating dots and lines on a page into movements of my fingers requires concentration, leaving little room for useless thoughts to sprout. The thoughts that manage to survive are usually worth pondering.

Music imitates life

I’ve noticed some commonalities in several of the classical pieces I’m learning:

• There is a harmonious and beautiful beginning.
• Something begins to change, and a tension builds up.
• There is a pronounced change.
• There is some sort of resolution.
• It all comes together in the end, and everything makes sense.

In some cases, the entire piece might seem quite unusual, but it works. The irregular qualities make sense when taking it in as a whole and in its own right, not when looking at single notes or comparing it with other pieces.

This seems similar to life with Ehlers-Danlos syndrome. Living with EDS is difficult, and it comes with plenty of interruptions. At any given time, my life might seem less than ideal. When compared with other lives, it might even seem way off. I like the reassurance that the disruptions will ultimately be resolved and harmony restored. I like knowing that despite its appearance at times, my life really is good.

When I come upon a disruptive measure while practicing the piano, I remind myself, “Trust the composer, he knows what he’s doing here.” The same holds true for difficult times in life. I can trust my composer. And when I look at my life as a whole and take in what it is without worrying about what it isn’t, I can see that it is good.

I don’t know about you, but I need to remind myself of that from time to time.

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