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.