Half Beauty, Half Beast

6 years ago

I have a beauty confession to make. Or perhaps, I should say beastly confession to make.

This is how I pose for pictures when I can.. with my right arm tucked behind my back.

Everyone has a good side they like to pose in photos with. Now usually our “good side” is all in our minds and we look fabulous from any angle. In my case, that just is not true. I suffer from severe Linear Scleroderma. In a nutshell, collagen overproduction has attacked my healthy muscle tissues and replaced them, for better lack of a word, with scar tissue.

When I was younger, it was just a small band of hardened tissue on my upper right arm. It was hard and stiff, it looked like an extreme muscle curvature. Not much was known about Linear and& Systemic Scleroderma when I was growing up. It was first diagnosed as Morphea, even though it did not match all of the markers for that diagnosis. A doctor asked my mother if she would bring me to a medical convention where hundreds of doctors would have a chance to examine me and take biopsies to attempt to pinpoint exactly what was going on with my arm. Of course my mother said no. There was no way she was going to take her young child to be put on display like a freak show. It would have scarred me permanently, much like my arm.

It wasn’t until around 1991 that doctors started learning about Scleroderma and I finally got a diagnosis. My arm was being attacked by an auto immune disorder that translated to “skin of stone.” We finally had a word for it.

In 1996, a made for TV movie was released called For Hope. It was produced by Bob Saget and was about his sister’s personal battle with Scleroderma. By the end of that movie, I was terrified. I cried for days. Was my entire body going to succumb to this? Would my lungs harden and my hands tighten into claw like shapes? Would my face eventually become so stiff that I would not be able to smile or make expressions? It was the scariest thing I had ever seen, and for all I knew, was a snapshot of my possible future. So we went back to the doctor.

It was soon explained to me that I had Linear Scleroderma, and it was different from Systemic Scleroderma like Bob Saget’s sister Hope had. Unfortunately, I soon learned that not much was truly known about how to treat either form of the disease. There were not enough long term studies yet showing how linear could progress and not many therapies to treat the disease. I was told that linear stays in just one place, usually a leg or the face -- as in the case with Coup De Sabre which is named so because it looks like a scar from a sword cut to the face; children are usually born with it. In my case, it happened to be my right upper arm.

My right arm with linear scleroderma. You can see it start in the shoulder, the shiny line is where it curves deep into my skin, all the way to the bone.

Well, I must be an anomalie, because not only did the linear scleroderma thrive and grow into my right shoulder and almost down to my wrist, but I have a patch on my left shoulder, a small band of it forming on my lower back and a patch emerging on my calf. My disease is not behaving as it should. And yes, it hurts. It locks up my elbow and causes pain in my wrist and thumb. It gets very stiff and often feels like it should just be in a sling. My arm is usually pink and mottled as blood flow is limited in that area. To add insult to injury, my arm looks like I was attacked by a shark. In fact, people always wonder what “what took a bite out of my arm to cause such a big scar.”

It causes me to struggle hard with my beauty. I see it in photos and all I can see is that my arm looks scarred and covered in a cellulite appearance. Even when I am at my thinnest, my arm still looks dimpled and misshapen. It actually forces my arm to rest at a twisted angle. The skin reminds me of those giant turkey legs they sell at Disneyland; shiny, tight, and twisted up. I delete photos that my arm appears in. I hide under thin sweaters on hot days so no one will see the true nature of my beastly side.

I want to take steps to change how I feel about my Scleroderma. I want to look in the mirror and see it as beautiful. So I figure the best way to start would be showing the world my arm and sharing my story. So here is my arm, in all its twisted glory. It is hard to translate just how deep the hardened scar tissue goes in this photo; I assure you, it is solid to the bone, it has replaced the muscle entirely. I want to love my arm, I really do; I just need to break this fear of people seeing it.

February 28th is Rare Disease Day in the US, so I hope to bring awareness to Scleroderma and the battles sufferers go through just to get through the day. If you would like to learn more about Scleroderma or donate to this amazing cause, please visit The Scleroderma Research Foundation and show your support!

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Tori is the creatrix behind Cellar Door Beauty 

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