Zebra Sleepover

I promised to write about the Zebra/bendy sleepover that I had with the Ontario group of friends with Ehlers Danlos Syndrome. My friend, Nakki, already wrote a fantastic recap of the evening, so please, please, check it out.

It didn't matter that I haven't been diagnosed with EDS, or that I might never be diagnosed with EDS. For them, understanding, support, and a willingness to learn was enough.

It didn't matter that I only knew one person before I arrived at Tiffany's house for the sleepover. Hell, it didn't even matter that I had never spoken to Tiffany before showing up to her house to sleepover. I felt closer to these women than I do to most of my friends -- I felt like they were family. Tiffany and Michele, especially, felt like the big sisters that I never had (although Michele is tinier than I am. Heh.).

It didn't matter that we don't all have the same symptoms. There were women there with Classical EDS, Hypermobile EDS, and Vascular EDS, and it didn't matter that I don't know what type I might have, or even if I do have it.

It didn't matter that I preferred to sit on the floor rather than in a chair or on the sofa. It didn't matter that someone preferred to lie down. It didn't matter that someone had to stay hydrated via a feeding tube. It didn't matter that we had to shift positions every few minutes or have our joints crack and pop when we moved.

It didn't matter that we're not doctors or that we can't diagnose anything. We  could share our experiences about the medical system - we shared info on which doctors are great and which ones make our lives harder. We could also share our experiences of interacting with friends and family - we shared our fears, our disappointments, our triumphs, our anger, and most of all, our laughter.

Laughter really is the best medicine. We spent most of the evening and the next morning laughing, and the wee hours in between, too. I even cried - twice - as I was so touched by the energy in the room. It was an incredible experience, and it is one of the few things (along with the upcoming arrival of a niece or nephew) that makes me really consider not moving across the country.

Since the sleepover, three of my zebra friends have had hospital stays. One, that I felt particularly close to, kicked ass at recovering from a life-threatening condition. It was extremely scary there, for a little while. Well, it still is scary.

But we keep moving.

We stretch our overly stretchy ligaments, pop our crackly joints, we deal with the pain, and we keep moving.

Or we keep swimming, as Nakki says.