Tuesday, December 31, 2013

And So It Begins....

Often times when I talk about living with my disorder or my mental illness I refer to the fact that I have lived with this albatross for over thirty years. Sometimes, I am dumbfounded as I say it aloud and hits me like a barbell to the chest. I have dealt with this for longer than most couples stay married. If it were a career choice instead of a mental illness, I would already have payed into my retirement fund and be living off of it ( probably somewhere in Florida wearing hideous, dark blue denim, high-water pants with an elastic waistband, dark black wrap around sunglasses, and  that little old lady red visor hat old people wear in bingo halls). If it were a prison sentence I would probably be out by now (depending on my crime).  If it were calculated by dog years, I would have suffered for over 112 years. You get the picture...it's a long time.

I wanted to talk about how OCD has affected my life. How it has changed over time, the pain, the struggles, the frustrations of what I have gone through as well as the many different symptoms I have had, but I realize that it would take more than one post to fit thirty years of this.....mental haunting into words. I want to be honest. I need to be honest. This is not just my blog but my confessional. My priest. My window to the world that I look out from and I so desperately want to just let it all out. Hang the dirty laundry and let it dry. Release the haunting and be free to finally be brutally honest not just about the more "comfortable" symptoms most of us willingly talk about but also the really bad ones. The ones none of us share because it makes us feel dirty, bad, sick, and so very very alone. So, I am taking that first shaky step with wobbly knees and unsure footing with this first installment of how it all came to be, how it all began, how it all started.....And so it begins.

My first vivid memory of an intrusive thought was around the age of four. My sister and I were playing outside. She, being two years older than me was my only real source of all things worldly. She was my Tom Brokaw of the news department and everything she said was taken as truth. After all, she was bigger and smarter. She was six. She told me that when you swallowed; the food, drink, saliva, whatever turned into blood as it ran down your throat. I was horrified. I hated blood and just the mention of the word made me feel faint. I am not sure how I reacted right after she broadcast this bit of news to me, but soon thereafter I started having issues with swallowing my own spit. I was afraid it was turning into blood and it scared me. I also started washing my hands, excessively. To the point my hands were cracking and bleeding. I became aware of how things were "dirty feeling" or "tainted" even when they appeared to be clean. Then the thoughts came. The ugly scary thoughts that turned my insides cold as ice. They made my palms sweaty and my heart jump in my throat. They showed me images of my parents suffering and dying in horrible ways. Car crashes, house fires, random crazy murderous burglars.....the most vile and scary things a kid could imagine and I was afraid it would happen to my parents, my friends, my aunts and uncles...ect. It made me think about death and the death of my loved ones, my pets, my friends, myself. It terrified me more than any boogeyman lurking in the closet or monster under my bed. It was the monster that lived under my bed, but I carried it everywhere I went. It lived in the recesses of my brain. It dwelled in the corners of my mind. It played in the shadows of my cerebral cortex. It left me unable to concentrate on anything else but the fear and the nauseous feeling it left in the pit of my stomach. I started to pray until it became a mantra. A mantra I said exactly the same way over and over and over and over, every time these images would pop up. I said them with tears in my eyes. I said them with my tiny fingers jammed so far into my ears that it hurt, while screaming "Shut up! Shut up!" over and over again. I hated the voice in my head but I didn't realize the voice was only in my head. I thought maybe others could hear it too. I didn't know it wasn't normal. All I knew is that no matter how hard I prayed, no matter how much I cried, no matter how loud I yelled it never went away. It never ceased. It never stopped. I said the mantra so often that after thirty years I still remember it verbatim. Most people have wonderful playful memories of the age of four and all of the innocence and laughter. All I have is the memory of : No No No, No No No, No No No No, No No No.

Soon the "No No No's" didn't work anymore and I resorted to slapping myself in the forehead. The pain made the intrusive thoughts waver. The shock of the slap gave me a instant relief but not for long enough. So I did it again and again. It got to the point that I would bruise my forehead from hitting it so hard, so often. When my slaps became not hard enough to shock the intrusive thoughts anymore, I started begging, pleading with my mother to slap me in the forehead. "Harder, Mom it has to be harder or the thoughts won't go away."

She took me to the doctor and he suggested it could be Obsessive Compulsive Disorder but they weren't treating children for it at that time and certainly not children that young. He suggested that they not tell me anything about it or draw attention to it and maybe it would go away on it's own....it didn't.

The washing became not enough to quell the anxiety and fear. Now it had spread into things like counting. One, two three, four...... Now I have to start over again....One, two three, four. I don't like even numbers. Four is bad, I need three. Why is there four when there should be three.....One, two, three, four.....

And onto touching things to make them even. You touched that part of your right  hand on the dollhouse. Now you have to make it even. Touch it in the same spot with your left. No, that doesn't feel the same. Touch it again. Touch it again. Touch it again. Touch it again. Touch it again. Do you want your parents to die? Then touch it again. Touch it again. Touch it again. Touch it again......

And finally it spread into checking. Are you sure you shut the front door behind you? I can see that it's closed but how do you know if it is closed all the way? It could be just halfway closed but not latched. Is it latched all the way? Turn around and jiggle the knob. Okay it's closed but are you sure? What if jiggling the knob knocked the door loose and it isn't really closed? Better go check it again. You don't want it to be open and something bad happen. Check it again. Are you sure it is really truly closed? Check it again. I am not convinced it's really closed. You may have knocked it loose. Check it again. And again. And again. And again.....

I was four and this had become my new reality. Not the reality of my friends who rode their bikes and played with their Barbie dolls carefree, but my reality. A reality where even if I rode my bike or played with my Barbie doll's my mind was sure to trick me. It was sure to plague me. It was sure to punish me relentlessly over and over again. It was sure to remind me that I was responsible for anything and everything that could possibly go wrong. It all depended on me. The future depended on my ability to touch things evenly, count correctly, have clean enough hands, and making sure the front door was closed and latched all the way. My family's life depended on it. It was a lot to ask of a four year old. And it continued that way with the guilt, shame, and anxiety of all  four compulsions until I turned ten. Then it changed into something else entirely. Something much worse....I became a PureO.

Neurotic Nelly

Next installment: http://neurtoicnellyocd.blogspot.com/2014/01/what-it-became.html


  1. H Nelly.
    I think your story is incredible and I can’t wait for the rest of it as it gives a great insight into just how your OCD affects you. You too must be an incredible person to have endured such suffering from such a young age and for so long. You really are an inspiration to others. My own illness (panic disorder) started about the same age. If you ever need support then I will always be there for you. Please keep inspiring other to endure and show others that despite all you endured you still have made a real contribution to the lives of others and enriched your own by doing so. Thanks and best wishes

  2. Thank you so much Michael! It has been a really hard exceptionally long road of dealing with OCD but I have learned a great deal about myself along the way. Having a panic disorder that young must have been equally as painful and trying. Thank you so much for your support and I find your story inspirational as well. We are strong Michael even more so when we feel we are at our weakest. Thanks again. :)

  3. A thousand forehead kisses and brotherly hugs in your direction. :)

  4. That you so much T.R....Have a wonderful and safe New Years!

  5. I'm so glad you are writing this and I can't wait to read more. Hopefully someone out there is being inspired to take charge and figure out if they have OCD too. Those thoughts are the worst, they lead to other things and ugh! I feel your pain, I really do.

  6. Thank you Savanna! Its really hard to write about all of the symptoms I will be discussing but to tell my story I have to be open and honest. I hope it helps people or inspires them to get help and to start talking so we can help teach people more about the real OCD and not what people think OCD is. The posts are going to describe worse and more disturbing as I go along. It isn't going to be pretty but then again OCD isn't pretty is it. Thank you so much for your support. From one OCD sufferer to another it really means a lot.