Darkness Is My Salvation

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Status: Finished  |  Genre: Non-Fiction  |  House: Booksie Classic

Living life like a vampire, just less cool and without all the blood.

So I’ve always been one for doing things with my own flare. Even before I was born. You could say it’s in my genetic code, to stand out. I’m different right down to my DNA. Now I know what you’re saying, everyone is different but my different is different than most folks different. Have I lost you yet?
See I’m a person of the night, not by choice but by physical need. That unmistakable survival instinct keeps me in the dark. I’m allergic to the sun. Not just the hives and pink skin within five minutes allergic to the sun. It’s more along the lines of anaphylactic shock, swelling of exposed skin, throat, and steroid treatment kind of allergic. Not to mention the unsightly wounds that always accompanies it. Now this alone isn’t horrible, I know! I am so unbelievably lucky that things are not worse when it comes to my allergy.
I also happen to have this wee little itty bitty minuscule disorder as well. A blip on the radar in fact…so much so that more people in the United States are struck by lightening twice in their lifetimes than are born with my tweak of genetics. I have xeroderma pigmentosum, a rare genetic disorder. In the average healthy person their DNA is a beautiful thing. There’s this enzyme that strips away all damaged segments of your DNA from the sun/UV and replaces it with wonderful new DNA. In people with XP, this process doesn’t happen. So damage accumulates rapidly.
The pain never really stops. Sometimes its all there is. UV is everywhere. In the lights, the television, even fire. So you can never really escape the sensation that you’ve been put inside a fire.
I’m one of the blessed ones. There are various degrees/forms. Some die before they are ten their bodies riddled with cancer. Others live but not without consequence. The skin becomes damaged and at times has to be removed. There are those that suffer mental damage, lose eyesight, hearing. Cancer metastasizes rapidly. And they suffer. Their families suffer. See I’m one of the lucky ones because I’m a relatively new brand. The variant. They don’t know how it’s going to affect me. Add the allergy to the mix and I’m a bag of surprises! Which I don’t mind, I’m grateful. I have to be. I was diagnosed at four. One summer day with my friends and my world changed. It would never be the same. When I was taken in to the emergency room swollen, bleeding, not able to breathe, crying and screaming my family was told I would die before I was ten. I’m unfathomably fortunate for I’m on borrowed time.
I’m grateful and love my life. I count my blessings everyday, even the ones where it would be easier to give up. Because I have opportunities that some with XP don’t. I’m alive when some of their lives are cut so tragically short. And I’ve seen and done things with my life that are remarkable, well in my opinion. ?
I grew up, I went to school. It wasn’t easy with blue skin, pale eyes that can’t handle the sun, and well my own unique style of dress. Long sleeves, hoods, sunglasses, gloves, jeans and boots aren’t the style in sunny Southern California. I missed a lot of school, well most. But I had some amazing teachers who understood and let me do everything at home. There were a few bad apples in the bunch but I can’t fault them for being afraid of things that are different. It made me unique. It made me the person I am today and I don’t think that’s such a terrible thing.
While being ridiculed, stalked, beaten, even stoned…and the girl that ran from me because she thought I was contagious I managed to find who I was and am. I kept going. I went to a lovely night coarse in Los Angeles where they taught special effects makeup. I was in my element! Talk about scratching that itch in the brain to be creative! I graduated I went to work. I use to wake up at three in the morning, drive into work in the dark then hide in the trailer until I had to apply my trade. Get poked at for my attire then wait there until night came and drive home. It was a wonderful life. I say was because that ended a few years ago. I found myself in a bad situation and ended up stuck in the sun with no way out until it was almost too late. I nearly lost my life. One man’s fear gave me a heart attack, nearly shut down my kidneys, liver and gave me cancer. I was home bound with foiled windows, towels under doors, no light unless it came from very few candles for over nine months. Never left once. And that was after being released from the hospital. I have treatments now and medication regiments. My body never healed completely. And now it’s proving to be more and more of a hazard to play with the sun as I had in the past. I can’t do that anymore the doc says because the damage is forever. My body changed that day and will never go back. So I accept it, had to quit my job and find another solution. After all the ATM was beginning to laugh at me hysterically whenever I did a balance inquiry. My ego couldn’t take that abuse for long.
So now I work out of home. I have a small business doing what I was trained to do. The only difference is I don’t leave the house for applications or location shoots. I simply sculpt the effects, make them and send them off to the people for someone else to apply. Things always find a way of working out in the end. ?
I still have windows that are far from average; I cannot be without long sleeves, jeans, partial gloves, socks and other unique attire. I can do things like everyone else I just do them at night so I am grateful. I don’t have many in the way of friends and I understand it isn’t easy. But I have a puppy that adores me name Lupin and a fiancé that should get an award for being so amazing. This is my life with a severe allergy to the sun and XP. The only relief is in the night. Is in the dark. It’s my salvation. I'm like Batman without the twelve pack abs but my costume is cooler! How do you like them apples Bruce Wayne?


Submitted: March 21, 2010

© Copyright 2021 Mindy Marlatt. All rights reserved.

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Comments

Donna Cavanagh

You, my Dear, are an exceptionally brave woman! The great thing about sites like this, you can meet up with friends without having to go anywhere. Keep writing! Donna :)

Mon, March 22nd, 2010 3:48pm

Author
Reply

Thank you for generous comments! I'm not brave, you've made me feel amazing. Thank you for making me smile! I truly hope that you have a beautiful week. And I love your writing, I had to get that in there. :)

Mon, March 22nd, 2010 6:19pm

heyalex

I agree with Donna.. you are extremely brave! I can't imagine that what you're forced to go through is easy, and I admire you so much for keeping a relatively optimistic attitude. Life is not fair and bad things happen to those who don't deserve it. I love that your puppy is named Lupin and you relate yourself to Batman. You should wear a cape! ;]

Mon, March 22nd, 2010 4:22pm

Author
Reply

It's exceptionally kind and beyond generous that you believe me brave. I'm not, I wish I were. LOL. I can't thank you enough for the beautiful comments you left. It means the world to me. I hope that you have an amazing week!

Mon, March 22nd, 2010 6:20pm

seannachie

In the opening sentence, 'flair' is most likely what you meant, but you've made 'flare' work on its own.
Courage works in many different forms Mandela was brave (27 years for human rights?!) Peter Gabriel was brave for eulogizing Steven Biko in a great song. Biko was brave when he was murdered because he emulated Gandhi... How long could I go on? How about those unsung heroes at the National Center for Missing and Exploited Children? When you write from your heart, it's beautiful. Then you post it here, running the risk of some cretin telling you it's trash, instead of offering constructive criticism. Yes, you are brave. :-)

Tue, June 29th, 2010 1:39pm

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