yoocan - Peter Dankelson - How I'm Rocking My Rare Life

How I'm Rocking My Rare Life

חסר תרגום בשפה עברית. מוצגת שפה אנגלית
מחלה נדירה & תסמונת

Peter Dankelson

I Embrace my Goldenhar Syndrome it is What Makes Me Stand Out

Standing out shouldn’t be something we fear, but we often do. The desire to blend in starts with peer pressure.  We attempt to become copies of whoever we admire—dressing like them and pretending to like all the same things.  We start to fear anything that makes us stand out. My name is Peter and I live with Goldenhar Syndrome. 

I understood early on, that the irony is that we're each unique. We have to learn how to handle staring and people's reactions to our appearance.  What I've learned is that the only thing I can control is my reaction and attitude.

It isn't always easy, but I choose to embrace my differences.  I like to use humor to connect and educate.  Not everyone with a physical difference feels the same, but this is what works for me.   Having a positive attitude builds my confidence, but it doesn’t stop the staring or rude comments.  I'm OK with that because I don't choose this approach to benefit others.  I choose it for myself.  Why should I value what a stranger thinks about me?

Blending in makes you average; standing out makes you exceptional.

A Guitar is my Medicine of Choice

Choosing to embrace my differences means I don't waste time focusing on them.  Instead, I spend my time playing electric guitar.  I love classic rock and blues.  My favorite thing to do is perform live on stage.  I love the energy and feeling of sharing music with an audience.  I've been playing guitar for about four years, and it's made a huge difference for me in dealing with medical PTSD.

I'm 19 years old and have been through 35 surgeries.  If I'm feeling anxious about surgery, I immerse myself in learning a new song or technique.  Listening to music also helps me with pre-op anxiety.  Anesthesiologists have played a lot of AC/DC songs on their phones as they wheel me back to the OR.  "Highway to Hell" is a popular request of mine!

The music therapy room at hospitals is often my first post-op "field trip."  Wanting to get my hands on a guitar gets me motivated to move.  I'm always focused on getting home to my guitars, so I work hard to be discharged as soon as safely possible.

I rock my rare life by not allowing Goldenhar Syndrome to define me.  It's part of what makes me stand out, and it's taught me how to overcome adversity.  A guitar in my hands, however, is what truly inspires me.  You can achieve anything with passion and a positive attitude.


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