"All things considered the HD seemed a dirty, rotten trick for life to pull on top of everything else I had already survived. Hard times may build character, but I already had about as much character as I could stand thank you very much."

I grew up completely unaware of the ticking time bomb I carried inside of me. While I had always known Huntington's Disease ran in my real father's family, I knew nothing about the disease itself. In fact, I knew very little about my father.

My parents had divorced when I was three. It was a very bitter divorce that cost me my father, an upbringing with my two older sisters, and my entire paternal family. My father, in a misguided attempt to cut all ties to my mother, allowed mom and I no contact with my sisters. No phone calls, letters or visits.

As a result I was raised alone. Through the years my sisters became like imaginary friends I had created in my mind out of loneliness. Growing up I could never understand what I had done to deserve being abandoned by my entire family. Especially why my sisters stayed away. I concluded I must have been unlovable at an early age. (It never occurred to my child logic that they did not know where we were.)

My childhood was a test in human endurance. By the time I'd reached adulthood I was a seasoned survivor several times over. I had survived the divorce, sexual abuse, constant bullying all through school, an unknown learning disability, a birth defect, obesity, a suicide attempt, bulimia, a drug and alcohol problem, and a decade of depression. With each new cruelty from life I withdrew further and further into myself, until I almost disappeared.

The high school years were the worst. I didn't fit in anywhere. I was completely uncoordinated at all sports. I had no self- esteem. I did well on classroom work, but bombed all the tests. I felt stupid a lot of the time because I could not keep facts straight or remember formulas. I was easily confused and as a result easily frustrated with trying to learn new things. I felt like a failure when I could not seem to grasp new concepts. I became moody and indifferent.

As an adult I spent several years in an emotionally abusive relationship. But when I tried to add the new baggage to the heap I already had stacked in my secret closet, without warning the closet door blew off and a lifetime of emotional pain lay at my feet. It was not a pretty sight but marked the official start of my healing journey. It took many hours of counseling and piles of self help books to begin to get a grip on my life.

Meanwhile at 19 I went to meet my father. It was awkward an uncomfortable as it had been meeting my each of my sisters years earlier. I had assumed because we were blood related that there would be an instant bond. Not so. Saying "I love you" was easy, meaning it would take some time. We were complete strangers.

It was on this same initial visit to my father that I had my first exposure to Huntington's Disease. My Uncle was in the late stages when I met him. While sitting in his wheelchair his head, arms and legs were jerking in all different directions at the same time. Visually he gave the impression of a mad man swatting at imaginary flies that only he could see. Hugging my Uncle took precision timing, which I proved not to have.

Initially I felt very uncomfortable sitting there with him. I was trying not to look at him for too long a time lest he think I was staring. But looking away seemed equally rude. It was hard to understand him at first. His speech was choppy and slurred. My Aunt translated until my ear tuned enough to his speech to get the gist of what he was saying. As I saw the man behind the disability, I felt a surge of love for him He understood every word I said, he was very much aware. It was responding that was slow and difficult for him.

Knowing my Uncle was aware of everything around him made it worse somehow. No doubt he saw the way people stared at him and knew when he was making someone uncomfortable just by being there. My heart broke for the wonderful man trapped inside the body, which had seemingly turned against him. I also felt bad for my cousins. I knew they could inherit this horrible disease from their father up the road. They could end up right where he was.

On the bus ride back I foolishly counted my blessings that my father did not have HD and it couldn't skip a generation. I would never be at risk, or so I was led to believe. In hindsight I am certain that had I paused to listen after leaving my Uncle's that day, I would have heard the suspense music in the background. Instead I would be lulled into a false sense of security for the next 10 years.

Reality hit in the fall of 1996 when my biological father was diagnosed with Huntington's Disease. Turns out it was only ASSUMED he was negative when he didn't develop symptoms at the same ages as his brothers. He was just a late bloomer, by twenty years! The domino effect of his diagnosis meant that all three of his daughters now had a 50/50 chance of inheriting the bad gene that causes HD.

Each separate fate had been sealed at the exact moments of our existence. Upon each conception my father had either passed a healthy Huntington's gene, or the expanded (defective) gene which causes Huntington's. The doctors offered each of us the chance to do predictive testing I was very surprised to find out the test had only existed since March 1993. We were among the first of our ancestors who COULD be tested. If we dared.

My oldest sister chose not to be tested until there is a cure or promising treatment. She says she couldn't deal with a positive result. I believe she's right.

My sister Dawn and I chose to be tested. This was more difficult for us than the average person because we lived in a small remote town and had to travel to a city to do the testing. A few weeks later I received my very first information on this mysterious disease. The symptoms were broken down into three main categories: emotional, cognitive (thinking abilities), and physical. As I read it I was quick to realize I had every single emotional and cognitive symptom on the list. I also read that the emotional and cognitive symptoms could precede the physical ones by 10-15 yr. I knew at that exact moment that not only would I test positive for the gene, I was already what they called "symptomatic". It had to be because it made sense out of things in my life, which had never made any sense before. It appeared to be the missing link, for there were all my unexplained quirks, neatly summed up on that HD pamphlet.

Being tested required genetic counseling, a neurological exam, psychological profiling, a blood test, and more counseling after being tested. I breezed the physical exam, but struggled with the psychological profiles. A two inch stack of emotional fun like your personal loss history and the Beck depression inventory, and every other deep question that not even your closest friends would dream of asking. Personally, I think there should be a law against taking THAT close a look at one's self. Wow. If I were not depressed before filling out the depression inventory, I certainly would have been afterwards. As I reread some of my answers I wondered if I was truly sane, or if I had just been faking it all these years? Very intense!

Approximately one month later, on April 16 1997, at age 29, I tested positive for the gene that causes Huntington's. My family took it even harder than I did. They had convinced themselves I would test negative like my sister Dawn, it was a major blow. Huntington's had not officially existed in our world until then. For myself the diagnosis only confirmed what I had known since reading the pamphlet, I was prepared. But being prepared did not stop the deep depression that followed for several months after being tested. The reality of my diagnosis was still hard to swallow; a death sentence takes some time to fully digest.

Dark thought of my predicted future took over my mind. I pictured myself with facial contortions and involuntary movements. I worried about losing my mind a piece at a time and my personality changing me into someone I did not recognize. I would also lose the ability to regulate my emotions and behavior. In time I would be a prisoner in my own body, just like my Uncle.

Worse still was the thought of the burden I would become to my loved ones. I briefly considered disappearing to somewhere else in order to save my family the pain of bearing witness to my slow deterioration. Unfortunately the one thing I was trying to escape would be coming with me no matter where I went.

It seemed very ironic that after 6 years of being a Home Support Attendant that I myself would require total care up the road. I quit my job three months after testing positive. This was perhaps my greatest loss in all this because I loved my job and lost a huge piece of my identity when I gave it up.

My diagnosis also called an end to 10 years of infertility investigations. A heartbreaking decision, but I could pass the HD gene on to my child, or worse expose him/her to me in the later stages of HD. I grieved the two miscarriages I'd had years earlier. Little did I know then that it was to be the closest I would ever come to motherhood. No adoption agency would ever touch us now. All things considered the HD seemed a dirty, rotten trick for life to pull on top of everything else I had already survived. Hard times may build character, but I already had about as much character as I could stand thank you very much.

Yet, at the same time, I could not deny that my diagnosis was a major revelation. The beginning of understanding things about my life and myself which had never made any sense before. For starters I was not crazy or stupid, I had a neurological condition. From a very young age I had known instinctively that something was wrong with me. My self -esteem had paid dearly for my oddness and inability to fit in. I had blamed my childhood scars. When in fact it was my unique genetic wiring, combined with my past that had shaped my personality. For the first time I saw my past as a blessing. Each hard knock life had delivered had in turn given me inner strength. Without that inner strength and my preset survivor instincts I might not have had the ability to rebound. (If my past had not killed my spirit, the HD could not even come close.) I was thankful for all the adversity in my life. This rare insight showed me the silver linings in my life and with that, the past lost its hold on me.

Two years passed by. I read everything about Huntington's I could get my hands on. Knowledge was power, but unfortunately it could not stop the progression of this disease. The tremors were hardly noticeable at first. Initially I wrote them off as caffeine jitters. Until I noticed the same tremors in my legs and feet. In fact, once I concentrated on various parts of my body I quickly realized the tremor was everywhere but my face. It was enough to stop my heart. Over the next/last year the tremors continued to increase in severity. My balance is completely off. I drop things constantly. Walk into everything. My feet jump on their own sometimes. I slur my speech occasionally. No wonder people with HD are often mistaken for drunk. (Reasonable deductions when they walk and talk like a drunk.) Only the chorea would suggest its something other than booze for the uninformed.

The tremors are like the most intense caffeine jitters you can imagine. Try sitting on one of those vibrating beds motels have. Now try to drink, pour something, cut paper with scissors, sew, read, write, or put on eyeliner. You will find many of life's simple things have become much more difficult, as well as a two handed venture. Welcome to my world.

I cannot remember what it feels like to be completely still. To feel normal. I have been trapped in a world of constant motion for the last two years. Internally I feel like I'm hooked to a 220-volt system, but to all outward appearances the tremors are barely visible. (They can be felt though).

On the one hand I'm thankful you can't really see it yet. On the other hand sometimes I wish people could see it so they knew something was wrong with me. Especially when dealing with those who get annoyed with having to repeat directions or instructions. Such is the curse of the invisible disability. The hard part in all this is in trying not to think about how much worse things will be up the road. This is only the early stage of the disease. One tiny gene has altered my life in ways few people could ever imagine. The plus side to that is that many of the changes were for the good. Being diagnosised with a deadly illness does not have to be the end; it can inspire a whole new beginning.

If I were to tell anyone that being diagnosed with HD was the best thing that ever happened to me I am certain they would send for the padded wagon. But that was the end result for me. Or maybe I'd be better to say that finding out about the HD inspired many positive changes in my life. My self-esteem rose, my marriage became more solid, my life long battle with depression ended, and the will to live chased away suicidal thoughts. I accepted my past in a new light and for the very first time in my life I made sense not only to myself but those who love me. No one has the power to change the past or the ability to avoid unavoidable obstacles. But we always have a choice in how we perceive it and when and if we choose to cope with our shadows. Silver linings exist in the worst scenes imaginable; all you have to do is look for them. You will never find them if you are not looking, it's not the type of thing you just happen to stumble across.

For many years I allowed my past trap me in limbo. Stuck somewhere between anger and self-pity. But the day I saw my past in a positive light for the abundance of inner strength it had given me, was the day my past lost its hold, forever. I can also see the silver linings of the HD because being diagnosed has changed the way I look at everything, it jumpstarted my life. The shock of my diagnosis has long passed and I am filled with an inner peace. Now I am someone who has every right to be angry at the world, but chooses not to be. There is a great personal power in that. I am a survivor. It's who I am, and one of the things I do best. Beating Huntington 's is my next big challenge. Made even more challenging because few people know what it is. Especially out in the boondocks where I live.

There are about 3,000 people in Canada living with Huntington's. Many thousands more are at-risk and predestined to discover their own hidden inheritance. Our only hope lies in modern science coming up with a cure or promising treatment. Soon…..

Source:Original story by Kelly B.

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