Never Surrender. by Lace Bentley

Modern medicine is cool. They can look at our brain activity with ease, measure crazy things I didn't even know existed, and fix so much damage. Well, unless you have EDS. If you have EDS, the damage quickly becomes not worth the risk, the pain becoming part of the ever shifting "norm." Even more frustrating is how little they know about what is happening to us, and how often "I don't know how to interpret these results" is handed to the patient with an "everything looks normal" and a closing of the notes. It's overwhelming. And having 28 EKG and EEG leads on my scalp and chest itches. They have been transmitting for almost 3 days, a tech is coming to remove them in 15 hours. I'll have tons of sores that will take weeks (or months...) to heal, but was it worth it? Will anyone be able to tell me why I keep falling, why I'm so weak, or why I have symptoms of 3 types of seizures?

Can they tell me why my smile is fading, and the right side of my body is losing functioning? Maybe. Chances are, everything will come back "normal" and I still won't know how to help myself. That's not because things are normal, but because they won't know what it means, and no doctor yet has admitted they see things they can't explain. Instead, they tell me I'm fine. It's infuriating and stressful. But hey, I'm making this head wrap look danged good!

On another note, I'm sure sad tonight. It has taken me most of my life to feel pretty. That's not because I'm not, it's because I haven't felt attractive. And now that I do, I'm losing it to an inexplicable facial paralysis. It is devastating. There is no hope it will repair itself, and I'm not confident anyone will help me, let alone know what is happening. Instead, I cry in my husband's arms, asking him again if he's sure he can love me if I lose my smile. He says yes. I'm still scared. Then I take pictures with a friend who makes me smile extra big, and compensate a little so you can't tell. We intentionally went "yin-and-yang" for a photo. She won't wear white, which is cool, because I don't look awesome in black. The hat though... It's going to become a thing as I need to avoid bright lights and further eye damage. It's going to be adorable with my new light blocking glasses. Eat your heart out macular degeneration!

Some days I will be a warrior, and some days I will spend crying and overwhelmed with all the testing and resulting sores, skin damage and pain.

And everyday I will find joy, sunshine, peace and faith. This may take my ability to run, ice skate and dance, but it won't take my hope. It may take my smile, but it won't take my light.

I refuse to stop smiling, whatever that looks like. And I think it might be just a little sexy on the bad days... WORK IT!

I might not be in control of what my body loses, but I am in charge of how I love and live inside of it. This is my decision, even if not my choice.


So I won't give up. I'll keep fighting. That's not a choice that can be taken, and this girl? She doesn't surrender.

Love and Hope,
-Lace