Composer (and medical device inventor) Jordan Plotner came on to chronic illness podcast Invisible Not Broken to discuss his upcoming project: Resonance. A musical piece that encompasses his life with Ehlers Danlos and recovery from Chiari Malformation Surgery.

Website/Blog, Twitter, & Instagram Handle

https://www.jordanplotner.com/theresonanceproject

Disorder Info

What is your disorder? *

Ehlers-Danlos Syndrome

At what age did your disorder become a daily issue? *

14

Who were you before your illness became debilitating? *

Still me!

What would you do if you were not dealing with your invisible illness? *

Living same life as I do now, just a bit more gracefully.

What would you like people to know about your daily life? *

Not every day is the same. Also, there are countless EDS-induced bizarre situations which can be quite painful AND highly entertaining.

What would make living and moving in the world easier for you? *

Reduced Uber fare for disability!

Do you have any life hacks? *

Many opportunities arise when one writes letters with pen and paper. Also, put maple syrup in coffee rather than sugar.

What kind of support do you get from family or friends? *

Love from family and close friends, and ignorance (not always negative) from others.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes, but most of the time I anticipate the situation and avoid before any confrontation ensues. But pretty much all of high school...

How has your chronic illness affected your relationships? *

It is undeniably a third wheel. It is also quite sneaky, and loves to make surprise entrances.

Is there anything you are afraid to tell people in your life? *

Nope.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Very much so.

What is your best coping mechanism? *

I'd say working. I am a composer/writer so work is just at my desk on my own time. But when I'm anxious/dealing with unknown, I cope by being hyper focused and productive. In terms of dealing with other people? Humor/exaggerated optimism.

What are you the most concerned about and the most hopeful for in the future? *

People becoming less curious / creative / interesting because they've grown up with all sorts of phones, and computers, and never experienced boredom / never had to find ways to entertain themselves.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

The Resonance Project (link attached above)

What is the hardest and/or best lesson your condition has taught you?

There's great wisdom hidden in pain.

What is the best purchase under $100 that helped your life

Blue Pilot Varsity Fountain Pen ($3.50) Shinola Large Hard Linen Journal ($24)

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