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The Dragon was inspired by the trials my friend Naga and his wife have gone through since he developed a chronic illness, recently diagnosed as CFS. But in many ways it is also my story.
When my partner and I met, I knew he had some medical problems, but they were minor things. He got migraines, and needed to walk with a cane sometimes because of a bad knee. Sure, the migraines knocked him out for a couple of days, but it was only a once in a while thing, right? The PTSD and depression I didn’t even think about. I’d lived with them so long myself that his suffering from them as well as largely, “Okay, well we both know what to expect.”
We’d been together about a year before he started going down hill, and shortly after our son was born I had to turn down a very good paying job because my partner was so ill he couldn’t take care of the baby while he worked.
In the three years since then we have found one partially effective treatment, a half dozen doctors who can’t make a diagnosis, two doctors who insist my partner is making everything up, two doctors who said he would be dead soon if we didn’t find a treatment but offered no assistance in finding one, one useless disability lawyer, several useless shrinks, and many, many, many people who want my partner to get over himself and just ‘make himself’ function.
The worst was people who thought they knew better because of what they or their relatives went through (“My father made himself breakfast while standing on two crutches, he damn well take his dishes back to the sink!” It’s great that your father was able to work around his disability that way. My partner is not your father, and he is not dealing with the same disability.)
I will be honest. I have thought of leaving, more than once over the years. But for all the pain, for all the struggle, for all the occasional hopelessness, my life is better with him than without him, and I believe our son’s is too.
Recently, the writing-and-book section of Twitter was inundated with the #weneeddiversebooks discussion. It was a discussion I was pleased to see and pleased to take part in. Disability is not usually thought of as part of diversity. Diversity means race or gender or sexual orientation. Sometimes it means religion. But Naga and Jalan and my partner and I have stories to tell also. The many, many people for whom their bodies and minds are just as much a supervillian as any comic book character, and for whome just living normal life and surviving each day is a victory have a place in our fantasy worlds and science fiction space colonies.
I hope you have enjoyed Naga’s and my story. It’s a story that needed to be told.