My Former Blog

There was an older version of LessFlexible, one that I wrote many years ago. I had been getting C shots sporadically from Dr. Plance. I was feeling so much better. We did not realize it was the C and C alone that was making the difference, and that I would need those shots everyday for EDS to stop ruining my life. 

My former blog was an enriching experience, but one that I was not ready for. It was not up for long before I took it down. But while it existed, I made some friends who changed the course of my life. 

I was still very ill back then, very fragile and on a lot of pain drugs. I did not want fans. I did not want to talk to anyone, really. I was comfortable being a recluse, managing the horror show of EDS privately, living in my bubble with Mr. Pennington and Dr. Plance, and walking alone in the park. I decided I would redo my blog if I ever got well enough to be off pain medicine. Then I might have something worth saying. Until then, goodbye. 

Just before I took my old site down, I started injecting C daily. A year and a half after that, I was off the opiates. But I had nothing to say because I was such a mess from a long-term opiates. Life hurt so bad, you cannot imagine.

I had not just come off opiates, I was experiencing life able to function for the first time. The injected C does much to alleviate the inborn error of metabolism that is causing EDS in me. Life was so different. There was no before with Ehlers-Danlos. I was born sick. Sick since conception, actually.

Both were very disorienting changes.

Perhaps the biggest mistake I ever made was getting well, ha ha ha. That is when things really fell apart. I thought I would only be happy if all my dreams came true. Really it has been so messy.

LessFlexible lingered in the back of my mind, a distant idea I could never figure out how to put together or what it would be about, or if I even cared about redoing it.

Then, as I was getting ready to go to Paris, where I was going in hopes of getting some relief my intractable existential crisis, someone from the other side of the world began to write to me. He had found some piece of my old blog floating around somewhere (hadn’t that fallen off the Google cache?). He wanted to know what happened to me, and what happened to my site. His body was falling apart, and his doctors suspected Vascular EDS.

He lives in a place I have never been, although I have been nearby. I have always wanted to go. His messages, which arrived in the middle of the night, I found at first to be annoying. I was not interested in this conversation. But quickly, he won me over. He was so persistent. He had a real passion for his health and indeed for his life. He really got to me. He inspired me. He was waiting for results of genetic study and planning for very bad news. I went on his journey with him. We had long electronic conversations that I began to look forward to immensely. 

I had meant to be learning some French, but from all the typing with him, I began staying up all night, writing writing writing. When I left for Paris I was emotionally catharted, exhausted, and already in a different time zone. My blog was back, with posts scheduled to publish for months. I got on an AirFrance flight and pushed it out of my mind. I do not think this could have started any other way. I am a chicken. I hoped I could face it when I got back. But then again, I could always just take it down and hope it would fall off the Google cache one day.

Café near where I stayed in the 6th, so happy to be unhappy in Paris.

Paris is definitely the correct travel destination for your existential crisis, which I will write more about later.

Paris might even be heaven. I often dream of being back there.

And my friend from the other side of the world. What happened to him, you wonder.

It turns out that he did not have Ehlers-Danlos Syndrome. I suspected as much because he simply had too much energy to be one of my people.

My people are so weary from the mess of this disease, and in such a peculiar way. It is hard to describe, but if you have been around us, you know what I am talking about: distracted, unfocused, struggling, overwhelmed, not quite here, not thinking clearly. We are hyper-perceivers of external and internal stimuli, yet unable to perceive our own sense of position in space. Overloaded and confused. The nervous system wildly mis-calibrating, making digesting off, sleeping difficult, standing up all an exhausting challenge. Then there is the fatigue and pain. It has a particular effect on the personality. He was not like us.

My friend from the other side of the world has another diagnosis. There other diseases that can make your collagen fall apart.

I think about him often, wishing him the best. ❤️