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.
Here it is - my first blog post.
Allow me to take a few moments of your time. I'd like to briefly touch upon the many things you can expect to find here in the days, weeks, and months to come.
I'm going to talk about my life. You'll learn about my potty mouth, my life with Ehlers Danlos Syndrome, my relationships with people, my opinions about current events, and my insane - insane - musical ADD. You'll find out that I do, in fact, have a filter; whether or not I use it is up in the air. My sense of humor will be on display, as will the occasional meme (read: sarcasm and cats). I'm going to be a real person, talking about things that impact me in some way. You are invited to join me.
Oh LORDY! I have a TBR list that is 700GB. Ish. I will select books based upon my mood or the whims of my electronic devices, and I will devour them. I'll then post an in-depth review of the work. I will attempt to avoid spoilers. If I find that I cannot, I will ALERT you! All genres are on the table. Just as I edit in almost any genre, I read everything from Post-Apocalyptic Fiction to Romance to Nautical/Seafaring Nonfiction. At this time I am NOT taking requests for reviews. I have hundreds of books to dissect.
Writing. I do it. I'll occasionally share short fiction, poetry, and excerpts from Works In Progress. I may share opinion pieces and pointers, as well.
Music. I do that, too. Most of it is wildly experimental. I have a Soundcloud account that I should probably link to this site. I've released albums on several labels, and I am lucky enough to have collaborated with many amazing musicians. Every now and then, I may share a free song or two, or even an album for sale. I definitely won't be limiting this to my own music.
Here I'll post - you guessed it - updates about my editing schedule, release dates for various projects, new and groovy groovy newness from author, artist, and musician pals, and more!
Here's where it gets REALLY fun. I will share whatever the hell I want to share. Recipes for boozy breakfast shakes? Check! Links to my favorite authors and artists? Yep! Step-by-step instructions on how to hotwire a car? You got it!
Stick with me, kids. We're going places.