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CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).

Tonight's diary by: arielle


I'd like to share with you fine folks tonight part of a book I have been pretending to write called, My Life As a Vampire: Living with Multiple Auto-Immune Diseases.

I often describe my day to day (night to night?) existence as "my life as a vampire" for a variety of reasons; some connected to the way I have to live, some to prosaic romanticism, and some to the desire for preternatural strength and endurance.

Vampires?  Really?  Are we going to get all Twilight® sparkly and stuff?

Uh..... no.

I'll explain some of that below the fold but since I have abridged, I'll first give you a brief-ish introduction to my physical state.

I have type 1 diabetes, systemic lupus erythmatosus, Sjögren's syndrome, mild Reynaud's and very mild rheumatoid arthritis.

As tertiary disorders/complications from those diseases, I suffer from peripheral polyneuropathy, dysautonomia, gastroparesis, background retinopathy and diabetic cataracts in both eyes, painful joint and extremity inflammation, tmj, polycystic ovaries (but not polycystic ovarian syndrome), dry eyes and a severely dry mouth to the point I sometimes cannot talk or chew food and I develop ulcers on my tongue and the roof of my mouth.

ed- Wow.  When I write it all out like that it sounds so attractive!  ;o)  

I am exhausted most of the time, sometimes to the point of abject confusion or even fugue.  I suffer from constant pain, both from the lupus and the neuropathy.  I am always dizzy, often nauseated, chronically dehydrated and usually frustrated.

Because of contraindications, many of the drugs one would normally take to control these things are impossible for me so symptomatic relief for pain, nausea, inflammation, or even a common cold become problematic to impossible.

So.... why vampires?

The vampire association seems to me quite applicable in a number of ways -  feelings of being "other";  the constrictions/restrictions of daily living; intense, palpable desire for simple things one cannot have even while having an embarrassing bounty of fabulous things;  a dichotomous desire for normalcy whilst shunning the conventions of society;  a soul enamored of and enveloped in antiquity yet scoffing at obsolete thinking - all seem part and parcel of the literary portrayal of the vampire.

Now, I am a sucker for most vampire stories as well as other esoteric entertainments.  Vampires embody unbridled lust, raw power, incredible strength, and heightened senses coupled with the libertine's lack of moral compass making for a heady brew.

But a simple, single line from the HBO series, True Blood, is what started me on this project.  

Bill (romantic vampire lead), running his hand through Sookie's (female not-a-vampire lead) hair right before their first kiss in the second episode, The First Taste, murmurs, "I can smell the sunlight on your skin."

How many times had I said that very thing to my husband?  Countless times.

It emanates off of him like cologne.  I can close my eyes, inhale, and almost remember what it felt like to have the sun on my face.

More, even, than the feeling of sunlight on my own skin, what I miss the most since lupus inflicted itself upon my life is the actual smell of sunlight.  It's a smell that always has its own intrinsic essence even when aspects of it change by location.

Sunlight off of concrete is different than sunlight off of old barn wood and those are both different than when it mingles with the sea.  The smell of sunlight coming through the window and warming the cheap vinyl flooring in my Granny's farmhouse is sometimes dredged up from my memories so sharply it catches my breath and makes me close my eyes.

My first foray into vampire literature was Carmilla, a novella written by Joseph Sheridan Le Fanu in 1872.

I was in 7th grade and completely clueless about eroticism in literature, lesbian motifs, or that today's parents would have a cow about my ability to check this book out of my school library.

It was, to put it mildly, an eye opener, albeit at the time having nothing whatsoever to do with the aforementioned conditions.

Laura has a dream as a young child of a mysterious and beautiful girl in her bedchamber and claims that she was bitten on her chest are written off to her dreaming because no marks were found on her.

Many years later, a carriage accident outside her schloss in a fictional land based on Austria brings Carmilla to her doorstep and both young women recognize each other from what was apparently a shared dream.

The story spins along, weaving Carmilla through abrupt personality changes, overt sexual advances, oddities that lead the reader to believe Carmilla may be much, much older than she appears, and a family friend whose niece dies from a vampire bite as Laura's health declines with fevered dreams of being bitten.  

The book became a prototype for seductive vampires and frenzied scenes of exhuming the undead body to destroy it.


She used to place her pretty arms about my neck, draw me to her, and laying her cheek to mine, murmur with her lips near my ear, "Dearest, your little heart is wounded; think me not cruel because I obey the irresistible law of my strength and weakness; if your dear heart is wounded, my wild heart bleeds with yours. In the rapture of my enormous humiliation I live in your warm life, and you shall die -- die, sweetly die -- into mine. I cannot help it; as I draw near to you, you, in your turn, will draw near to others, and learn the rapture of that cruelty, which yet is love; so, for a while, seek to know no more of me and mine, but trust me with all your loving spirit."

   And when she had spoken such a rhapsody, she would press me more closely in her trembling embrace, and her lips in soft kisses gently glow upon my cheek.

   Her agitations and her language were unintelligible to me.

   From these foolish embraces, which were not of very frequent occurrence, I must allow, I used to wish to extricate myself; but my energies seemed to fail me. Her murmured words sounded like a lullaby in my ear, and soothed my resistance into a trance, from which I only seemed to recover myself when she withdrew her arms.

I bring up this book because vampire literature became somewhat enthralling to me from that point. Bram Stoker's  Dracula, which would be published 18 years later, was influenced by this story as has almost every other vampire tale (not the least of which was the movie Carmilla - The Lesbian Vampire) written since those two Dubliners put pen to paper.

Carmilla lived in between worlds, her languid invalid-like demeanor belying the monster that dwelled within.  She slowly glided through the spaces in between her passions and her needs.

I often find myself living in and defined by those spaces in between:

the spaces in between the first glimmer of light when  dawn's chorus brings a soft smile to my lips while my heart takes flight with the birds' wings and the brutal harsh glare of full daylight, assaulting my head, swelling my joints, and forming lesions on my flesh;

the spaces in between the long shadows of late afternoon when the last fingers of sunlight turn the air to shimmering gold, making the tree leaves glow a luminescent green and the last of the twilight, darkness taking my ailing eyesight like a thief on the breeze;

the spaces in between my flirtatious dance with death when I engage in behaviors I ought not and embracing life with unbridled joy and the sense to take care of myself;

the spaces in between the warp and weft of my dreams and losing the thread of them when my mind goes into an autopilot self check of my metabolic status on waking;

the spaces in between the things I need to do, the things I want to do, and the things I can do.

I think everyone has those spaces in between and many likely have what they think is a monster lurking somewhere inside.

Illness has just made me keenly aware of those spaces that make and mark the time of my day.

And my monster has a name.

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Originally posted to Chronic Tonic on Thu Sep 09, 2010 at 06:00 PM PDT.

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