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Sunday, May 24, 2009

My Sabbatical Adventure: Chasing a Unicorn

Sweet dreams are made of these. The song that certainly fits what I'm about to tell you. I'm going to shine some focus on myself, as well as share a piece of magic. My post today might feel a little like 'So what did you do last Summer?' except it has nothing to do with Summer. It's more about what I have done for the past several years which apparently has lead to what has culminated in my focus the past several weeks. I've had the light shine down on an incredibly shiny someone; a person who is a definitive notch above the regular human animals found in the general populace. Well, at least that is how he seems to me.

Not many of you on-line readers or friends know that I have been sick these past several years. Last thing I ever want is for anyone to feel sorry for me or feel pity, my pride just could not stand it. I have a chronic condition called lupus. It's a disease that varies in symptoms from individual to individual, some have more severity and intensity of the manifestations that this disease is able to work on a body's systems, physically. It also carries a weight on your mental standings since this disease can turn on you in a moment, it can kill you. You have to live with that knowledge. On the flip side, this disease can suddenly decide to stop what havoc it may be wrecking on your physical being and go into a remission. Vanish like a ghost. Everyone with this disease hopes for that outcome.

I've seemingly been given a second chance. How long this second chance will last is unknown. It could last forever. I could be symptom free the rest of my life. Too, it could only last a short time. I've been in a state that has varied from extreme joy to fear thinking that it could come back. Life is looking so full I have to just run out and grab it every moment.

In the beginning of this illness my symptoms began manifesting during my pregnancy with my ten year old. I had massive swelling in my legs, ankles and feet. It was incredible. The OBGYN put blame on what I was eating, drinking, my sitting, I was put on bed rest for the last two months of the pregnancy. After her birth, that first six months, the pregnancy hormones began filtering out of my system. By the time she was seven months I knew something was wrong with me. I did not feel right.

Massive tests went on and on and I was screened for brain tumors, cancer, MS, you name it. Ending result was SLE, Systemic lupus erythematosus a chronic, multifaceted inflammatory disease capable of affecting every organ system of a person's body. Initially I was terrified; had never even heard of it.

I received medical treatment, put on a strict regimen of pharmaceuticals and things leveled out for me, but I did not return to my previous high energy self. Time passed and the condition worsened. My heart, lungs and my kidneys were affected. I was on more drugs, more trips to the hospital.

IDOL BLUES and my on-line situations with various cast members that make up the Taylor Hicks fan world became a separate entity for me. A true escape from the everyday issues I dealt with and lived with and sought to avoid. When not dealing with the real world and all that went with it, I escaped into my interesting childrens' lives and this almost fantasy on-line world. Focusing on me was just depressing, limiting and not a lot of fun. I was me but yet I wasn't me anymore, unable to do much of what I once loved doing. I had to avoid sunlight, I had to avoid getting too tired, which was all too easy. I had issues breathing much of the time, issues with horrible headaches, body and joint pain and general malaise. It damn sucked to be me.

Taylor Hicks provided me hours of entertainment with his musical career highs and lows. His American Idol experience was absolute fun. The whole fan world situation surrounding him has also provided me hours of entertainment - the doings of his fans and the fascinations with him and with each other.

Anyway, the past five years were the worst. I developed the heart inflammation issues, lung inflammation and kidney disorders. I've been on steroids, I hit chemo, name it I endured it. One other big escape for me was sleeping - I developed this whole other world in my dreams. I began writing them down and compiling a story of sorts from the dreams. Center in my story, a man. He was funny, sweet, kind, a best friend. He did not look like anyone I'd ever met.

He had lovely red-blonde hair, incredibly blue eyes. In my dreams I knew him as "Adam". Having him to go to in my sleep was amazing and comforting. Like some sort of imaginary friend. I actually was one of 'those kids', I had an imaginary friend. He went everywhere I did and was especially soothing while I underwent treatments for asthma or allergy shots. If I was lonely or scared he was there. Thing is, he was a horse who talked rather like Mr. Ed only he was chestnut with a flaxen mane and tail. I called him Hotspur, no idea where that name came from either. Yes, my parents thought I was strange when they found out about Hotspur, but then they always tell me I was an unusual child. He was with me from the time I was three years old, while relocating to the Phillipines I became so sick I had to be hospitalized upon arrival. That's when I first imagined Hotspur.

Now I'm married, have been married three times. Once to a musician - that marriage lasted under two years; I wound up leaving him for another musician for a brief spell that just wasn't meant to be. Second husband I met while on a trip, I use to travel all the time. I was down in Ixtapa, Mexico. I worked as a travel contractor for various wholesale travel companies securing them contracts for room space in hotels, on tours, etc. It was a fascinating job and while it wasn't high paying I was able to travel for free, all my expenses paid. I was carefree and open to all sorts of adventures, I was also quite good at negotiations and so that certainly helped. It was a gypsy lifestyle but I loved it.

Husband number two was vacationing, accompanied by two women. He was seated under one of the beach cabanas near mine; he rose to go to the oceanside bar and the sun hit his black, glossy hair. I was fascinated. He was tall, dark and handsome with deep dimples when he smiled. One look and I was devastated. One look and his two companions had no chance; I decided he was for me. The next night, like out of some torrid romance novel, we wound up together on the moonlit beach. He'd seen me leave the beachside restaurant with a bottle of wine. I was heading out for a walk but had flashed him a smile across the room. Needless to add, his companions were alone the rest of that trip. He relocated to my home base, Dallas. Our relationship lasted five years but I grew tired of his control issues. He did not want me working, he did not like my friends, family. It escalated to violence and control so severe I was not even allowed to leave the house while he was at work and never after dark. I was basically that man's prisoner. I got out.

I met Darling Man while taking some writing and art classes at a local university. He was in an accounting class I had decided to take on as well. The room had these high windows and the sunlight was shining through. As I entered the stadium type seating classroom and looked up, a beam of light hit him like a shimmering ray. Next thing he's sitting beside me, we're dating, then married. We had Darling Daughter, then I became sick.

This past January some sort of switch flipped in my body's system. I began feeling differently, physically. It has been similar to being awakened after a long sleep. By March I was making changes in myself, felt this incredible energy and feeling of transformation. I began riding my bike again. My head felt clear and my body was up to doing activities I loved before. It's been incredible. It's been a gift. I feel everyday I must push myself and go and do and live because I'm fearful the past several years of feeling not like myself will return and I don't want that to ever happen. Thing is, my dreams of that golden haired man stopped.

I've not been following the Taylor Hicks fans or Mr. Hicks much in the past month, that lead one of my favorite Hicks' friends to ask me, "Well, Spin..I was wondering where in the hell you went to..glad to see you back." after posting on her site the other day.

My response to her was, "I've been on 'sabbatical' chasing a fabled 'unicorn'. It's been quite a little adventure..." I've also been writing on my project - this 'unicorn' - this individual has been a heavy muse for me, he's been inadvertently feeding the creative juices and they've been intoxicatingly enjoyable.

I sort of fell into a state of limerance, you could say. I met someone whom I have talked with in quite a different way than I've ever talked to anyone else. This is in light of the fact I don't really know him, but he just felt familiar from my first 'finding' him. Interestingly perhaps I wandered into him while working on a post about - Taylor Hicks. So as it has seemed throughout my life finding those 'shiny' objects once again leads me onto paths I need tread, have experiences I must follow.

This man pulled me in with his spark, his fire, his insane humor. He absolutely blazes with a passion for life, connection, heart. Curiously he has red blonde hair and incredibly blue eyes. I have found myself wrongly and idiotically lovesick over this man I've never met in person. I've felt guilt over this attachment I developed considering my actual circumstances. I've also wondered if this newly awakened self of mine who had lay dormant for so long might be a manifestation of some sort of brain malfunction suffered while in my deepest part of my illness.

It's been exciting finding such a muse as he, yet hauntingly sad in ways I can't put my fingers on. It's been ridiculous yet I have enjoyed this time, however brief it might be, meeting this beautiful man. It's come to pass in obvious ways, this arrangement of ours might not be what's best for him. For me, meeting him felt like deja vu realized. For him, likely a confusing situation that has him possibly unhappy. Something I do not want for him, not at all. I mean, in the real world, people really don't meet like this do they? Especially when their real life situations are already set, complicated and the relationship seemingly one made of huge impossibilities. Too he's a loyal man who, in exhibiting disloyal behavior, being in a relationship, he's not happy with himself. That's an admirable quality.

One thing, coming out from my self-imposed sabbatical, I'm seeing a refueling for my project. This fascination of mine has provided an almost other worldly near mystical experience for me. The coming out from under the lupus, my incredible feelings of transformation and renewal, this communication or whatever it is with this man, has been not unlike discovering that yes, indeed in another time and place there really were unicorns. Unicorns running around under real rainbows with actual puppies and kittens complete with elves.

Thing is - real life - is there any place for unicorns? THAT is the question. It is turning out to be one fine story to write.

"Sweet Dreams' The Eurythmics

video thank you to fritz51312


  1. Anonymous5:58 PM

    Sunny I've enjoyed your musings for some time never knowing that we shared more than a fascination for Taylor Hicks. I too have Lupus. It first hit me like you, during preganacy 24 yrs ago. But luckily it crawled back into it's deep dark hole and I only had slight symptoms until 13 years ago when it reared it's ugly head once again. Lupus has taken me on an incredible journey often mystical at times. I even had something similar to a near death experience which lead me down a different path in dealing with my Lupus, one that rejected medications that often caused as many problems as they were trying to treat. I made note of the fact that you too were treated with Allergy shots as a child. I have often wondered if this early tampering with the immune system set the stage for Lupus to appear later given the right conditions. I'm so glad to hear you are getting a reprieve and hope it continues. Mine as been calm for some time now rearing up every now and then but luckily not serious just agravating. Take care of yourself.

    Your Lupie Sister,

  2. Yeah I was to a point I thought I was going to die too Dee. How interesting you and I also share lupus. It's a bastard isn't it?

    I'm so afraid that if it comes back I won't do well, I won't be able to accept it; I'm feeling that great right now.

    You take care too. Email me, we need be real friends and not on-line friends only.

  3. I told sunny that she's the third woman I've known with lupus. And now you, Dee. You don't hear much about the disease, but maybe it's more common than I thought. Thank God you're in remission- both of you.

    This blog post was beautifully written. Now, I'm curious about that project. Get it done so I can read it!

  4. I felt my 'guy' needed an explanation and I needed to tell my story here. Thanks Caryl.

  5. Well he and I are at a definite impasse so man, what ever will be will be.

  6. Anonymous8:28 AM

    Wow. Just wow. I'm impressed with your courage and bravery. I'm so glad that you (and Dee) are feeling better.

    I'm glad you're back, though. I definitely missed your musings.

  7. Thanks Grey, man it's living life, everyone has their own crosses to bear.

  8. NolaMar9:38 AM

    Wow, Sunny, you just never know what someone else is going through! You've suffered greatly and I'm so glad you are feeling better these days. You too Dee!! You ARE brave as grey said. Not only for what you faced all these years, but to share your story openenly like this. I pray for many more days & years of health and well-being for you both. In fact, ALL of them! May it never rear it's ugly head again.
    PS I was tested for auto-immune disease after suffering some stuff during pregnancy too. Doc was surprised it was negative. I'm thankful it was.

  9. Thank God for you that your tests were negative. That's all I can say, man. Glad you stopped by.