My People

When people have the same genetic defect, often they will have have similar facial features. Isn't that interesting. 

I saw a review show in Vegas. I love a live performance. I got some pics with the contortionists afterwards. My people.

Look at our noses, necks, fingers, cheek bones, skin, face shape, and chins. Don't we look alike! My fingers swan like his, although I take care not to let them go into that position, which was advice from my hand therapist.

This guy was pulling his shoulder out of its joint.

This guy was pulling his shoulder out of its joint.

He was pulling his shoulder out of the socket as part of his performance. My shoulders have never fully dislocated. For a joint to dislocate, there must be loose tendons and ligaments and a joint deformity, such as a shallow joint. I have other joint deformities, just not there.

This lovely lady’s speciality was pulling her hip out of the socket. My hips are hypermobile but do not dislocate, or at least not yet. See above.

She was pulling her hip out of its socket.

She was pulling her hip out of its socket.

They both looked like they were in pain during the performance. Maybe I was projecting? It made me hurt. I had to look away.

They were both amazing dancers. Hey, me too!

Ehlers-Danlos sure makes fine-looking people, if I do say so myself.

My Ehlers friends look like fairies, elves, or Disney princesses. I love to be around us, the soft graceful people who look eternally youthful and have such an interesting way of moving. Skin so glowy, like it was sprinkled with pixie dust. Enchanting.

Try not to be envious, normal people.

Really, don’t envy us, I’m being ironic. This disease is pure torture.

Did you know ... When someone with Ehlers-Danlos is strong and athetic, they tend to have exceptional coordination. Yes, you heard me right. I heard Dr. Anthony Bulbena say this at an EDS Conference. I raised my hand and asked him to repeat it, because surely he did not just say that? Yes, he had.

I thought I had developed very good coordination, as I got strong and did more and more, but I scarcely let myself acknowledge it.

I threw basketballs, footballs, frisbees, climbed the cobblestones and narrow staircases of Paris, and I am always working on my dancing, but I did not really think good coordination was even possible for someone like me. When Dr. Bulbena clarified his statement, I said,  “Yes, I think that happened to me.” And the audience applauded. Thanks, My People!

That should have been no surprise, really. Recently I was at a Clippers game at Staples Center in Los Angeles. The halftime entertainment was a lady with Ehlers-Danlos Syndrome shooting a bow and arrow with her feet. That is extraordinary balance and coordination.

Extraordinary coordination, balance and control.

Extraordinary coordination, balance and control.

I work on making my nervous system smarter every weekend at the park.

She shoots.

She shoots.

She scores.

She scores.

Caught it! Just barely.

Caught it! Just barely.

Clipper's Basketball Camp. 

Clipper's Basketball Camp. 

When we are sick and weak, we tend to be super clutzy. I have been there, crashing into walls and furniture and dropping everything. That was me for most of my life. But somehow our unique musculoskeletal systems with our sensitive nervous systems can be exceptional, too.

I am getting good at this. A responsive nervous system feels good, too.

Bam! Caught it. What fun! 

Bam! Caught it. What fun! 

The trouble is how to get strong enough to exercise and improve coordination if you are born with Ehlers-Danlos?

For me it was this.

Madora Pennington