Kelly is a planner. Kelly decided to be tested. In confronting her own fate she became an inspiration for all. -- Jerry

Posted to HDLighthouse: 27Jul02 HDL Update: My Story: CONFRONTING FATE by Kelly B.

Kelly. "I wrote this story shortly after being tested. I have since written a 2500 word story, a song, poem, HD awareness article, and stories about my experiences at Camp Squamish, BC that I've gone to for three years in a row."

I had grown up with the knowledge that Huntington’s Disease ran in my Father’s family. It was never a secret.

My parents divorced when I was three. I did not see my Father again until I was nineteen. I was raised by my Mother and new Dad. Thousands of miles away from my Father, two older sisters, and the effects of Huntington’s Disease. The word held little meaning in my life until recently.

When I was a child I was told HD was something I would never have to worry about. My real father did not have it so I could not get it. The only other thing I knew about the Disease in my bloodline was that my paternal Grandmother had died from it in her 50’s, and two Uncles had it. It was never something I asked questions about, or gave a second thought to.

Reality hit in the fall of 1996 when my father tested positive on his first neurological exam. He was already several years into it upon diagnosis.

The ripple effect came down to his three daughters first. There were also two grandchildren who would inherit their own 50/50 chance if my sisters tested positive. We were offered the chance at predictive testing.

There are not enough words to describe the emotions involved in the decision of opening up “Pandora’s Box”. Some people will only shake the box and try to guess what is inside. Others simply must know what is inside for peace of mind. A few will bury the box in the bottom of their minds and try to pretend it does not exist. The contents will give you an unexpected life long “gift”, or confirm your worst fears forever.

Once the box is opened it can never be resealed. No matter what your results are, your life is guaranteed to be changed forever. The ramifications make it a very personal choice.

My oldest sister chose not to be tested. She would lose her job and pension if she were to test positive. That is a given. It is for her sake that we are all nameless in this story. Her family will depend on that pension if and when she is unable to work. Plus, she does not want to know.

My second oldest sister, like myself, just had to know what was in the box. Not knowing drove both of us crazy. We lived in the same remote area and had to travel many miles from home to big cities to be tested.

I breezed the physical exam, but struggled with the psychological profiles. The mountain of pink questionnaires was capable of making the most balanced person stop to question their sanity. Answering the questions was quite literally maddening. It made me question other things. For instance, could I out run the orderlies?

I could not help but wonder if the pink questionnaires were actually a hidden test. If my level of HD was to be determined by the size of the pieces of paper left after tearing them up in sheer frustration. Pink confetti being the most advanced stage on an emotional level. I laughed out loud at the thought, then wondered if they docked points for maniacal laughter. Oh well I thought, too late. As I reread some of my answers I wondered if I was really sane or had I just been faking it for all these years? Very intense.

I regret no one told me I could not be refused this test. I downplayed some of the answers because it had cost a lot of money to be there to be tested. I was afraid the Doctors would tell me I was not strong enough emotionally to be tested. (Yes those pink questionnaires really rattled me.) I left feeling emotionally drained, with all my innermost feelings exposed to the light.

My sisters result came back before mine. The first negative result in many generations of our family. Plus her son was no longer at risk. It was a happy moment for all of us.

A few weeks later my results came back. At 29 years old I had tested positive for the expanded Huntington’s gene. My CAG count was 43. As I was driving home form the town clinic with my husband, all I could think about was my family. My parents, sisters, Grandma and close friends waiting by their telephones for the “good” news. Hardest and shortest phone calls I have ever made. Lives were changed forever.

The day after I went to visit my family. They had gathered together to offer their support. But any attempts to comfort me with pat reassurances about “modern science finding a cure before I ever developed a symptom”, only made me combative.

My sister who went through testing with me was the only person there who fully understood what a positive result meant. She simply said, “there is nothing in the world I can say to you right now that will make you feel any better. So I won’t even try”. Her approach of no comfort was strangely the most comfort. She was right. No mere words had the power to change the facts. This was a life-altering blow, which had come out of nowhere six short months ago. We were all stunned. Huntington’s Disease had not existed in our world until then.

I had thought a great deal about how a positive result would effect my life. But I was unprepared for how my family would blame themselves for my condition. My Mother felt guilty for having the three of us even though she kind of knew about the Huntington’s.

My sister who tested negative felt guilty because she had escaped it and I had not. If she could have she would have trading places with me in a heartbeat. But the sad reality of it is that she has only escaped the gene. She will never be able to escape the Disease for it is all around her. That’ s the downside to her lifelong gift, to be the one left holding the bag in the end.

My Father felt the most guilt. It came from his bloodline and he held only himself responsible for my predicted fate. He thinks all he ever gave me was a bad gene. He is so wrong there. My first three years with him left a strong mark on my personality, and I inherited his sparky sense of humor. It is this humor that has gotten me through my diagnosis and helped me to get through life. We may not know each other as well as most fathers and daughters do, but we are trying to. I wish I could take away the guilt he feels. It is so unnecessary.

I told my father the same thing I told my mother. That given the choice of being on this earth with HD, or never having been at all, I would still rather be here. So why feel guilty about it. Besides, they couldn't’t even test you for it until 1993.

I knew I could live with a positive result. To be totally honest I feared an inconclusive result even more than a positive one. Of course it goes without saying that my preferred choice would have been testing negative, but such is life. It was not an easy thing to come to terms with. For the first few months I struggled with the storm of emotions I was experiencing.

I was a hard person to be around for awhile. I was hair-triggered emotionally between anger and tears. I withdrew into my own thoughts. I tried to isolate myself from loved ones. The urge to runaway and hide was strong. Similar to a wounded animal that needs to hide away and heal it’s wounds. I would try to push it out of my mind but it would keep coming back to me. Reality just kept washing over me in waves. It was like a tropical storm inside of me.

One day at my mom’s house I had apologized for being short with her. She told me that I had to stop stuffing my anger down and start letting it out. Mom told me I had every reason to be mad as hell given the circumstances, then admitted to being furious about my diagnosis herself. It just was not fair.

In a surprise tactical move my Mom offered to let me smash every dish in her house if it could get my anger out. She even offered to throw the first dish to get me started. (You would have to see her massive dish collection to truly appreciate the generosity of her offer. Bless her heart!)

While I did not take Mom up on her offer, it was a turning point for me. I finally recognized my anger. A very normal reaction given the circumstances. How could I not be angry?

The storm cloud passed by in that moment. For the first time I realized that I was not the only one who was angry. I was not the only one asking God why. And I was far from the only one struggling to come to terms with my diagnosis; my family and friend were struggling too.

You see I am the baby of the family. My family has always been extremely protective of me. But this was something they were all powerless to protect me from. There was no kiss to make it all better for me.

I learned a very powerful lesson about love. I would not have made it without the love and support of my family and friends. No matter how hard I tried to push them all away and suffer alone, they would not let me.

It has been just over a year since I tested positive for the gene. I do not regret being tested. I am a planner; I had to know in order to plan my future. Limited or not. Pleasant or not. Frightening or not. At least I am dealing with facts now. The shock has long passed, and I am left with inner peace.

I feel fortunate to be able to prepare for it. As well as being able to help prepare my family and friends. Knowing what is happening when it does happen will make it easier for us all to cope.

Being tested has given me the ability to make decisions now on any foreseeable problems in the future. I can name a power of attorney, write a will, plan my own care, and let my wishes be known now.

Living in the here and now has become everything. I will not allow myself to become incapacitated one day with a pile of regrets for things I should of said and done while I still could. The moment is now. There is no waiting until 50 to retire to do fun things because I could be gone by then.

I see the next 5 years as more or less guaranteed. Past that, there are no promises. But with a little help from the powers that be I could live a long and healthy life.

The only thing I know for sure about my future is that my family and friends will be there every step of the way. I would like to take this opportunity to say a few personal words to them and express my thanks.

To my husband: For ten years you have been one of my closest friends. You mean so much to me. Thank you for all of your reassurances of my being no less of a person because of the Huntington’s.

To my Mom and Dad: Whenever I have needed you, you have always been there. I could not possibly love you anymore than I already do.

To my oldest sister: Thank you for all the words of encouragement. You were right. When God closes a door he always opens a window. You are indeed older and wiser! Thanks sis.

To my second oldest sister: There is nothing in the world I could say to you right now that could possibly express my gratitude to you. Thank you for being you. Don’t ever change.

To my Father: I am proud to call you my Father. If I were ever given the power to change that fact, I would never, ever want to. I guess you’re stuck with me pet.

To my friends T, K and J: Thank you for listening, for hearing what I wasn't saying, and for making me talk. Your understanding was and is endless. You are true-blue.

To my two Uncles- both in the late stages of HD. My love to you and your families.

To other Huntington’s families: You are not alone.

To the scientists: Please find us all a cure.

By Kelly B. --April 1998

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