Wednesday, June 25, 2014

We Finally Flipped the Coin

My original plan was to keep a journal through this entire process, but for the first time in my life, I was at a loss for words.  This is what I was able to put together tonight:

29 years ago my mother was diagnosed with Huntington’s Disease.  On that day my dad flipped a coin and explained to me that my chances of also having the same fate were just that, a 50/50 flip of a coin.  Since then I’ve been living my life to the fullest, striving to make my parents proud, and fit in as much as I could in the potentially shorter time that I had.  I was scared at times, but mostly surrounded with love and happiness.   I didn’t feel I needed a test, and was proud to tell everybody that testing wasn’t in the stars for me.

Last November I married the love of my life, my perfect match.  Even after knowing my mother and watching my dad’s struggle and heartache for the 13 years we knew each other, Peter was still willing to take a chance on me.  In January we made the tough decision, as a team, to begin the testing process. 

Through my work with other friends and families struggling with HD, I knew this was going to be hard, but I couldn’t comprehend how difficult until it began.  For the first 34 years of my life I was living in blissful ignorance, keeping the thought of a future with Huntington’s Disease in the back of my mind.  When we began the necessary steps (and realizing how hard they were) the emotions surfaced.  This new reality I was facing was scary and sickening. 

January through June was spent getting necessary insurance in place, meeting with the genetic counselor, the blood draw, and of course, results.  At times my usual peppy optimistic personality was challenged, and my stomach was in a unreleasable knot. 

We knew we would get the results sometime on Tuesday of this week, which made Monday go in complete slow motion.  Monday evening I spent log rolling on beautiful lake Wingra with the people I am closest to.  It was so surreal just hanging out on the log rolling log looking out over the water and listening to everybody talk and joke.  I was once again reassured that no matter what the result, the people in my life will always be there to lift us up.

Tuesday came and we received the call that our appointment was to be at noon.  I had a spot on the morning news in which I was to speak about Huntington’s Disease.  While saying the words “I am living at risk…” I knew just a few hours later I may have to change that phrase to “I have Huntington’s Disease”.  The next few hours were spent wondering silly things like “if I wear this shirt the result will be positive, but if I wear this one, it will be negative” or “Her tone of voice on the phone sounded sad, was she sad?”  

Shaking, we both walked into the office.  I swore I saw tears in the counselor’s eyes.   At that moment my heart sank.  How would we tell our family?  Why does my dad have to go through another tragedy?  And as soon as my mind began creating these scenarios we then heard the words “I have good news for you.”  Through the happy sobs and hugs she spoke of CAG repeats and alleles while showing me a piece of paper but all I remember is crying in Peter’s arms.  It happened.  It really happened.  It wasn’t a dream.  I will never have Huntington’s Disease nor will anybody in our family.  My only wish is that my mom could be here to hear the news.

Unfortunately the nightmare is not over.  Many of my best friends and family I’ve met through the Huntington’s Disease Society of America did not have the same result or are still living at risk.  I will not rest until a cure is found.  We can’t let this horrible disease take away ANY more loved ones.  We will find a cure, we have to.   

A special thank you to Jason Marty, who helped us with some challenging insurance needs, Jody Haun, our caring and understanding genetic counselor, Jean, Caitlin and Dawn for helping me through the process, and of course so many friends and family who freely handed out hugs, without knowing what was going on.  We are so very lucky.


Anonymous Anna Sprusinska said...

Great to know you are free of the nightmare like HD. My attitude used to be like yours, I used to be carefree as long as it was possible, I got tested and found out that I'm HD+. In this stage of life it's better to know, anyway. I love my life and I live it to the fullest knowing for sure that it will be over if there is no cure.
Shana, you definitely are an icon of our struggle with HD for all of us. Once again, I'm so relieved your own life is not in danger anymore. The horror of HD never disappears. We keep loving our friends no matter what. And your Mom will always be in our hearts <3

6/26/2014 3:44 AM  
Blogger Fit With Flash said...

I'm so happy for you and your family, dear friend! I can't imagine what that entire ordeal must have felt like. I'm so proud of you and everything you do for HD and everyone affected by it. I'm proud to call you my friend. HUGE hugs. xoxo

6/26/2014 8:09 AM  
Blogger Drs. John and Heidi Hallett, Michael Fagan & Leyla Wirth said...

I have tears of joy, not just for you and Peter and George but for everyone who knows and loves you and for everyone who benefits from your boundless energy, enthusiasm and selflessness. Congratulations!

John Hallett

6/26/2014 8:23 AM  
Anonymous Bernd Klock said...

I'm so happy for you and your family love Shana! An outsider can not imagine how this uncertainty must have felt for such a long time. I'm so proud of you and everything you for HD and anyone who is affected by it are doing.

6/26/2014 9:53 AM  
Blogger Elizabeth Donley said...

I am sitting here at my desk with tears of joy rolling down my face. I am so happy for you and Peter and for your Dad, your dear Dad. As a parent, there could be no crueler fate then to have to help your child through such a devastating illness and ultimately to watch them die. I am just so happy and relieved as your friend. I haven't wanted to ask you recently because I knew you were entering a time in your life when you would be on the horns of dilemma as you begin to start a family. We used to talk about it in the abstract when you weren't even dating Peter but when the rubber is really meeting the road and you have to make a decision, one way or the other, I haven't wanted to intrude in your thinking. You are amazing woman and will continue to be a powerful force for HD - just perhaps for longer than you might have if your diagnosis was positive. God blessed you and tested you in so many ways Shana and you have always carried yourself with such positive energy and courage.

6/26/2014 2:22 PM  
Anonymous Anonymous said...

I knew it. I just knew it, somehow.

You can live a normal life now, at last. And you will never have to worry about passing this on to your own children.

Yes, Huntington's will always be a part of your life and you will continue to be a champion for the cause.

But you, Shana, you will never endure that fate.

9/26/2014 2:52 PM  

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