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.)
I intended to examine responses of friends and family to my diagnosis and life with Ehlers Danlos Syndrome. That will wait for the next installment in this series. Today, I am going to address my response.
That's how a chronic, debilitating illness can make you feel. Absolutely trapped. In your body, in your house, in your routines.
I'm trying to change my routine. I've just reopened an amazing album by Material Action, and I'll be remixing tracks and adding some vox. I'm accepting a few more manuscripts for edits than I'd planned. I'm writing on two schedules: every day for an hour, and whenever I want to.
These are things that help me leave the confines of a body that no longer does my bidding. But these things don't erase larger issues, especially the feelings of worth that come with contribution to a shared vision--or the lack of that contribution.
In this case, I am specifically referring to my inability to financially contribute to my marriage in a way that is equal to or greater than those contributions from my spouse.
I was married before, as you may recall from the brief bio on my main page, and I was a full-time mom and full-time student. I worked as an assistant manager in a restaurant for several months, but I decided to go back to school, to complete my Bachelors degree. Afterward, after leaving the income-generating position and entering school, conversations about money became more stressful. I felt as if I had no leg to stand on, no right to complain about sticking to a budget, because I wasn't the one making the money. This became a dark little worm that burrowed into my brain. Unworthy. Unable. You have No Right.
And I find myself in that position once more. While my editing rates are standard, most indie authors are able to procure editors for less. I find that I truly spend more time on manuscripts than some of my counterparts, so lowering my prices isn't something I'm prepared to do at this point.
So here I am.
Did you know that there exists no specific disability code for Ehlers Danlos? Though joints dislocate, organs fail, muscles atrophy, and aortas dissect, there is no one all-encompassing disability code. If I want to try to claim partial or total disability, I must show all of the documentation for each separate "problem." I must go to each doctor for each problem as many times as possible, documenting the decline in certain areas of function.
But, as I stated before, I am in that special Hell where my spouse is responsible for the finances and I am merely a bystander. I cannot spend each weekday at a doctor's office for some test or followup for some separate piece of the Ehlers Danlos puzzle. I have responsibilities. Parenting, and doing a damn good job of it, comes first.
So the quiet hours find me waging war.
Unworthy. No, I'm not. It's not my fault. Doesn't change reality. Doesn't mean I can't demand a certain level of accountability. Doesn't mean I can't communicate my desires. Doesn't mean I can't feel anger and frustration. Right?
Finding myself feeling trapped in so many ways lately, I reach for the things that keep me smiling. My son. Friends old and new. Conversations that are finally occurring.
But inside of these walls, in this house that I can't renovate by myself, in this body that makes grocery shopping feel like a marathon, I shrink and shrink. Even as I raise my voice in anger, I shrink. In this way, an invisible illness works hard to make sure that I disappear completely.
In my ways, I work hard to make sure that I am seen, heard, and known in this life.
In the next installment of this series, I will examine the reactions of family members and friends regarding my life with Ehlers Danlos.
I walked for a few miles last weekend. The breeze whipped off of the tips of Atlantic waves. My feet sank into alien sand as I made my way toward a crowd of silent people. Sea turtles were being released into the ocean. Beautiful, giant creatures.
By the time I'd made it from my hotel to the crowd, my thighs felt as if they were on fire. Why? They were rubbing together. They were chafing. The sensation was entirely new to me. Standing at 6'3", I've always managed to carry any extra weight with ease. But that was Before.
Time becomes divided, you see.
There is Before and there is Now.
Before, I could play volleyball. I could run for miles. I could nurse a sprained ankle or a sore knee like most people would--I'd treat it gingerly, ice it, rest it. I could go to sleep without worrying about blood clots. I could eat cheese. I could go to the bathroom without crying.
And did I look healthy? You're damn right. I could strap on a push-up bra and turn heads for hours. I'd go dancing. I'd drink. I'd laugh. I laughed a lot. Before.
Now I live in the days of betrayal.
My body, born with Ehlers Danlos Syndrome, is no sacred vessel. It feels like an enemy. It feels like a slow march. It feels like aftermath.
Walking back to my hotel after the turtles were released, I cringed with the pain. I stopped to examine the wounds, blood raw and glaring. They were darker than the many spots of guttate psoriasis currently splattered all over my legs. I dropped the long skirt down again. Protection.
I developed severe edema in both feet. That was new. That was a first. I thought of two things only:
If I develop edema from walking a few miles, how will I EVER lose weight or become active and fit again?
My sister had edema. My sister hurt her ankle and her arm the night before she died. My ankles and my arms are always wrong these days. Am I becoming my sister?
These are questions that inevitably lead to more questions. Why do I have the edema? Why are both of my arms becoming useless? Why am I afraid? Who do I have in my corner?
For the first time, my invisible illness is no longer invisible. My stomach is both fat and swollen. My chin and neck have conspired to form one continuous mass. My legs are dotted with a psoriasis that may never go away. I wear long pants in July. I use a cane and braces when I feel particularly crummy. Some would find joy in this. There should be evidence, you see. I should be able to point and say, "Hah! There it is! There is my disease. You see it, so don't judge me. You see it, so help me." Unfortunately, when I look in the mirror, I only see a fat, swollen, spotted giant. And I judge her.
In Part Two, I will examine the responses of friends and family to my condition. I will also attempt to delve deeper into the self-loathing that accompanies all of the pain.