Memoir Explaination.

I realized that I haven't really explained what I'm doing with my memoir pieces here.  Basically, I am choosing to post only portions of my memoirs on this blog.  What I mean by portions is that they are not the complete version of each memoir piece.  They are generally shortened parts of the whole of the first drafts of each larger work.

I have chosen to do this for a couple of reasons.  First, because I don't want to put out the entire finished work (as I complete them) because if I do that, why would I want to publish them as a book?  By only posting portions, I hope it will entice you all to want to read them in their entirety when they are published.  Secondly, I hope that by giving my readers little bits of my life every couple of weeks, I am building a relationship with those is interested in my story.  Finally, it allows me to hopefully get feedback (not always positive) on my writing style allowing me to find the best way to accomplish my goals.

I believe that the best and easiest way for me to do just that, is to focus on one memory/topic at a time.  You wouldn't believe how hard it is to wrap your mind around telling your entire life story!  It's very easy to get overwhelmed.  Once I've completed every part, I can then go back and combine them into the entire work.  Make sense?

I have always believed that the reason I have continued to survive 25+ years with HIV is to tell the world my story.  For some strange reason, I knew that 2010 was the year to start seriously working on it.  I'm sure it will take far beyond just this year to finish the task; hell, it's taken me 25 years just to find the words to start doing it, but completing my memoirs will be my life's work and my contribution to the world as a whole.  That's why I'm still here.  I know it.

I greatly appreciate everyone who follows my life here on this blog and through sayhedgehog.com.  Thank you for taking an interest in my life and in my story.  I hope that by sharing the lives of myself and the struggles of my parents I can make even a small difference in the way you view your life.  That's all I can hope for by doing what I'm meant to do.

A Negative Fantasy

A Negative Fantasy

Ever since I was a little girl, I have often entertained a fantasy which brings me both great joy and great pain.  Usually, it's when I'm in the shower washing my hair or shaving my legs - when I can allow my brain to run free.  I imagine learning I am not really HIV positive.

I envision not that I am one day cured, but that I have never been positive to begin with.  Instead, it has been something like a long running conspiracy between all the doctors I've seen over my lifetime.  Maybe my brother and I have served as a case study of some sort.  Perhaps it was to study how children orphaned by AIDS live their lives, or maybe to see the way that one positive person would live compared to their negative sibling.  Maybe it's all about testing medications and has nothing to do with anything psychological.  It's no matter though, because I don't give that element of the fantasy a lot of thought. It isn't the important part to me.

I imagine going to get an AIDS test with a pseudonym at a clinic that has never seen me and finding out that the past 25 years have been a lie.  I am healthy.  There is no human immunodeficiency virus making it's home in my body and killing me in the process.

Then the emotions start flowing.  Initially, I am blissfully ecstatic, willing to completely forgive everyone involved and all of the pain and hardship I have suffered throughout my life without a second thought.  I am in heaven because for the first time I am a normal, healthy person.

A normal, healthy person.

As soon as those words enter my mind the fear takes over.  I don't know how to not be sick.  Living with HIV and all that comes with it is all I've ever known.  How do I live as a healthy person?  All of the obstacles which have always been in my way have suddenly been removed.  As exhilarating and freeing as it is, it is also immensely terrifying.  My entire world has been turned upside down.

I become ashamed of my fear, of my instinct to hold onto the virus that not only killed my parents, but has controlled my life and caused more pain than I can even describe.  Perhaps it's like Stockholm's Syndrome, wherein a victim comes to identify and even empathize with their attacker.  Either way, it is shameful and confusing.

Without HIV who would I be?  HIV/AIDS has helped to shape every aspect of my life down to my very personality.  Without the virus' touch on my life I would most likely be an entirely different person, living a life I can only begin to imagine.  I'm not sure I would have the strength of mind to live that life.  To no longer be hindered by the things I've always been told about my health and my abilities.  Would I be able to stand up and be the person that life would need me to be?  I like to think that I would have more than enough inside of me to embrace that life with open arms, but I'm not sure.  I guess it's human nature to be nearly horrified to start a life so very different from the one you've always known.

Every time I step into this fantasy, I end up in tears.  It evokes feelings from every part of my emotional gambit.  It's sweet, shameful, scary and oh so desirable all at the same time.  If have it in me to find forgiveness and live without bitterness about my life with HIV, why don't I have the ability to want to be rid of it and embrace a new, normal, healthy life?

Perhaps feeling guilty and inadequate is the price to pay for allowing such ridiculous and impossible notions into my head.  My life and health is what it is.  It is no conspiracy and no one's fault.  As much as I fantasize about it being different I accept the truth - I am HIV+ and I most likely always will be.  As crazy as it sounds, there's comfort in that, meaning that I don't have to face an unknown life.  I get the one I've always prepared for.  I've had 25 years to brace for the possibility of getting sick; I've never had to think about it being gone and living free of it all.  I will always maintain hope that one day a cure will be found, but if it doesn't, I'm okay with that.

Still, I'd like to know that I am capable of living a life without the virus and I like to tickle myself imagining all the things I could do and hope for once I found the strength.

The Dam(n)ed Depression.

"I’m living under water. Everything seems slow and far away. I know there’s a world up there, a sunlit quick world where time runs like dry sand through an hourglass, but down here, where I am, air and sound and time and feeling are thick and dense." – Audrey Niffenegger, The Time Traveler’s Wife.

I'm not dead, although part of me feels as if it is.

It's extremely difficult for me to write about my struggles with mental illness.  Not only because of how convoluted it is inside me (there seem to be no words to sufficiently describe its make up), but because I find it hard to swallow my pride and admit my limitations to a world that sees mental illness as weakness.  No one ever condemns me when I'm feeling physically ill due to HIV, but if I even make a hint at being mentally tortured and it's all airs of "suck it up".  As if it's something I can control.  It's just as real and in some ways even more debilitating than HIV.  Since there is so little understanding accompanying madness, I tend to keep it inside me, only writing in private places of the darkness inside my head.  I realize now though, that for me to truly tell me story I have to find the strength (and the words) to write about every part of me, even the parts I (and society) struggle most with accepting.  Bipolar disorder is with me every minute of every day, has forged so much of who I am, affects every decision and action I make, so leaving it out would be leaving out most of myself, and that's just not possible.

I am most certainly not my mental illness, but it is a part of me, just as my kindness, humor and artistry are.  There is so much more to me than being either HIV+ or bipolar, but they are both parts of my whole.  To leave any of it out isn't true to my story.

They say that the most gifted people are so because of mental illness.  That both depression and mania are the creators of art.  I know this to be true, and as I am with so many aspects of madness, I both hate and revel in it.  What tortures me and sometimes seems to choke the creativity right out of me, can at other times, send the gift pouring out of me, as if it were a broken water pipe, spewing words quicker than I can pen.  Perhaps, it's the price to pay for greatness - being mad.  And perhaps I have to learn to embrace the depression to make it work in my advantage, but it's so hard to welcome something so painful.

My best friend Carolyn (who is also bipolar and my rock) asked me once if I would rather live a tortured life, much like Hemingway, and produce great works yet eventually succumb to my own derangement, or if I could settle for stability and normalcy.  That is my biggest struggle. I cannot bear the thought of being mediocre, of being normal.  Just the thought makes me feel like the very life is being strangled out of me, yet at the same time I have a hard time stomaching living in a perpetual state of chaos.  I suppose though, that the truth is, it's an easier pill to swallow being tortured than never being great.  I know, and have always known, that the reason for my continued survival is to do something monumental, something lasting, and I believe that will be achieved through my writing.  Perhaps it's the textbook definition of mania, delusions of grandeur, but I have to try.

That's precisely why I am drowning in my own failure right now.  I'm in the midst where my madness chokes the inspiration right out of me.  Locks me away from my muses and turns my ability to concentrate into nothing.  My mind (and soul) is parched from the thirst to create and yet my words are right in front of me, just out of my grasp.

When I cannot find my words, I feel as though my very essence withers.  I know this is the time in my life for my true literary gifts to blossom, but the darkness of depression has dammed it inside me.  I have been unable to concentrate on anything but reading for extended periods of time in the last few weeks.  My journal is filled with nothing but rambling babbles of an empty mind, when in fact, my mind is far from empty (it's brimming!), but it cannot flow.

I must find a way to break through soon because until I can write again, I cannot breathe and I cannot live if I cannot breathe.