About Me

I was born very severely affected with Ehlers-Danlos Syndrome.

For most of my life, I was totally disabled by it.

This is the story of how I got better.

This is also the on-going story of what it is like to start living my life after a lifetime of disability. This has been a more difficult transition than you might think. Where is the support group for people who got let out of prison for a crime they didn’t commit?

Also, I was pretty messed up from so many years of opiates, but when you’re in too much pain to live, what choice do you have. No regrets. I will tell you all about it.

I powered through. And here we are.

So ... what do you do when your life gets better than your wildest dreams? How about … spend a summer in Paris? Okay, I will, and that is where I am now.

I would love to hear from you, although I am otherwise occupied, drinking wine, admiring French firemen, and looking at art. I won’t be responding until I am back in Los Angeles at the end of the summer, and not at all, unless you are polite.

Madora Pennington
June 2017

Update. I am back from the best summer of my life. I will tell you all about it sometime.

Before I left, we arranged for Mr. Pennington to come meet me in Paris, just in case I got injured, got pneumonia, or had a complete EDS pain-fatigue meltdown. It seemed wise.

He arrived. I was doing great. No help needed. We went on vacation in Europe together.

 I got my haircut in Paris, something I dreamed of doing.

I got my haircut in Paris, something I dreamed of doing.

Riding the elevator in London, another amazing city.

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