A lot of you guys know the story. My physical health started to fail me in 2011. After a couple of years of tests and doctors, doctors and tests, I hit the jackpot and ended up in front of a doctor who has a personal interest in genetics. Because I am very tall, she asked about a certain genetic disorder. I told her I'd been evaluated as a child and was good to go. She thought something similar was going on, so she fought with the military until they paid to send me to a geneticist. I had to wait seven more months just to have a first appointment! In very short order, however, I was diagnosed with Ehlers Danlos Classical Type with Marfanoid Features. A cascade of diagnoses followed. Spinal stenosis. Ruptured discs. Osteoarthritis. Degenerative disc disease. CFS/ME. POTS. Dysautonomia.
I fought my various issues constantly. I spent at least three, usually four days a week in different doctor or therapy appointments. It was exhausting, but I was determined to beat this thing. Incurable genetic disorder. Go figure. That's just how I'm wired. After a year of fighting, I injured myself in physical therapy. You see, no one is trained to work with someone like me. Doctors don't learn about EDS. My PT meant well, but ended up destroying my right shoulder. I began doing more and more with my left hand. Showering, getting dressed, cooking. And then my energy began to disappear.
Was I depressed? Sure. Who wouldn't be bummed? But I still lived with an inexplicable belief that this would all pass. So I accepted the fatigue as a simple little note to self. Take more naps. I had no idea what CFS/ME actually does to a body. It started to take things away. Exercise. Camping. Dancing. Then it took cooking every meal every day. Shimmying and singing and standing up in the shower. Grocery shopping. And finally, it came for the things I really took for granted. Getting out of bed. Putting on clothes. Walking. I couldn't even get up off the floor if I found myself down there. I found myself down there more than you'd think. Four furry pets, a snake, and a son. Hairballs and Legos were the bane of my existence.
Believe it or not, I managed to stay mentally strong, considering. Friendships fizzled. Invitations dried up. They got tired of me saying, "Maybe." Or, "Yeah," then, "I can't." "Sorry." Some friends left without any real clue about what I was going through. They told me I was selfish. I was bad for them.
Nevertheless, she persisted! Yes, I did. And life decided that it just wasn't having any of that persistence shit, thankyouverymuch. When I lost the ability to walk, when I couldn't raise my right arm above my stomach, when I began to gain weight, and then more, and then more, when I lived every day in excruciating pain, the universe killed my sister.
You see, she'd been sick for years. Lupus. COPD. CFS/ME. She was always inside of her house. Lots of folks didn't understand. Some didn't believe her. To be honest with you, I was in both categories at different times. It took me getting sick to finally realize what her life was like. And then her life was over. She was a single mother to three kids. And -poof- she was gone.
Real depression came softly, riding on the back of fear. And then, slap me silly, something happened in my life. Something only a few people know about. It was terrifying and traumatic and violent. I have survived sexual and physical assaults, but this experience at this time, it was the one that broke me. At any other time...maybe. In better health...maybe. With a bigger support system...maybe. I'll never know.
Since February of 2016, I have fought for every single day. I've made some progress. I can walk sometimes. I can usually dress myself. I go to grocery stores. I've also lost some ground. I have to sit in the shower, and I can only reach my face and hair with my left hand. Heat is my enemy. I'm obese. I don't let anyone take pictures of me.
And yes, I lost it. That crazy little certainty that I'd out-think my DNA. My magic. My spark.
I didn't even know if I wanted it back. As long as my beautiful child never knew anything specific, as long as he was happy, I was content to stay. Stagnant. An old silver fish on its side in the sand, up past the high tide mark. Decaying.
And then my beautiful child, who visits his father and step-family in Idaho every year, changed the end of one text message. "I love you bestest," I always say, because I'm a grammar geek and we're both in on the joke. I've said it for years. And for years, he's said, "I love you bestest, too."
But this summer, he added one word.
Forever, he typed.
Forever, I thought, could be only a moment. But maybe...just maybe, it could be so much more.
I've decided that I'm not content to be that old fish. I want ALL of the time with him. I want the time with his children. I want to live the way my Grandma Alice does, working early in the morning, zip lining and skydiving for birthdays.
So here's what I'm doing.
No, it doesn't involve doctors, other than standard tests to check things like my Chiari formation or my aortic integrity. Trust me, anything else is pointless at best, and is possibly harmful, like the year I ended up with 16 injections of steroids from various professionals.
When he has a regular school day, I'm going to the gym. When he has an early release day or a holiday, we're going to the pool or the beach. I'll only miss when I have surgery or recovery from surgery. I'm going to take pictures. I'm going to record videos.
It's going to be excruciating and humiliating, but I'm going to find my goddamn magic. I'm going to reclaim my spark.
I'd love your support when I talk about it. I don't use pain medication, so it won't be a picnic, that's for sure.
I'd love your funny memes, your terrible puns, your thoughts on Zora Neale Hurston, your hidden haiku.
Before we know it, we'll be better friends. We'll be better humans.
Before I know it, I might just heal.
(I know it.)