Welcome back for another Friday Reads. This edition will be rather different as I can’t truly say, just yet, if Crossroads in the Dark III will have a lasting impact on me. However, what I can say, is that this book already has significant meaning.
Ehlers-Danlos Syndrome (EDS)
This particular volume of the Crossroads in the Dark (CRITD) anthology series produced by my publisher, Burning Willow Press, is for charity, with 26 authors donating stories (see the list below). The book has been dedicated to Tracey (T.F.) Poist, who suffers from EDS (if you, like many others, don’t know what that is, check out the Ehlers-Danlos Society website), with all proceeds being donated to EDS research in the hopes that better treatments, and hopefully a cure, can be found.
I reached out to Tracey about her experience with EDS, and she had the following to say:
It began with fatigue. I was going to be married soon, so I chalked it up to stress. Then I thought I must’ve contracted mononucleosis. I had tests done for Lyme disease. By every account, I was perfectly fine.
Then I twisted a bit as I yawned and stretched. Instant agony. After a few months of dealing with medical bureaucracy, I had an MRI performed. It showed four herniated discs and two others shredded. Spinal stenosis. Arthritis. All without any cause.
Ordinarily, that’s where this story would end. I’d complain about more and more, but nothing would ever come of it. That’s how it remains for most of the undiagnosed zebras out there. But I got lucky. My doctor had a personal interest in genetics and sent me for genetic testing. Bingo! Ehlers Danlos Syndrome, Classical Type, with Marfanoid Features.
Doctors in medical school are taught to look for the most obvious causes first. To hear hoofbeats and think of horses, not zebras. But we medical zebras exist. And we need help.
Ehlers Danlos affects every part of my life. My skin stretches and tears. My heart can’t quite keep up with what I’d like to do. My muscles can’t, either. My autonomic nervous system is heavily impacted. In fact, I live in a daily state of fight-or-flight. It exhausts me physically and mentally.
There are several co-morbidities frequently found with Ehlers Danlos. I live with nearly a dozen. And I’m lucky. It can get so much worse. I lose a zebra friend to sudden death every month. Aortic dissection. Aneurysm. Suicide.
Other than the weight I’ve gained and the stretch marks under my clothes, I don’t look any different than I did ten years ago. I don’t look like a person who has to use her wheelchair, who depends on medications to fight Dysautonomia and Postural Orthostatic Tachycardia. I don’t look like I have problems digesting food. You can’t see my insomnia or my constant fatigue.
EDS is an almost entirely invisible illness. It is an umbrella under which you may find joint dislocations, heart problems, digestive issues, depression and anxiety, easy bruising and scarring, and so much more.
Before I woke up and yawned and stretched, I took things for granted. Running. Dancing. Dressing myself. Showering. Walking. Living without pain.
Ehlers Danlos is underdiagnosed and misunderstood. I encourage you to learn about the illness so you don’t take life for granted the way I did, but especially so you might be able to connect the dots for someone currently suffering without answers.
There is no cure, and we can only treat separate issues as they arise, but we are resilient. Warriors. And we thank you for your help. May we find a cure for our children.
If you like horror, even a little bit, go buy yourself a copy of it. It’s well worth the money. I don’t even really like horror, and I give it 5 stars (no, really, you can read my review). It’s horrible in all the right ways, and wonderfully demented. Check out all of the fantastic authors who donated their stories to the anthology. And make sure to take a look at my live-tweets from my reading experience.
Are you a horror fan? Have you read any of the CRITD books? Will you buy CRITD III? Have you ever heard of EDS? Leave me a comment below. Or leave a message for Tracey to help make her day a bit better.
I hope you have a great weekend at the Crossroads.
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