This Is My Story… for now.

This is my journey through Huntington’s Disease. As such, I should start with the most basic detail: I do not have Huntington’s. I tested negative 14 years ago, after both my grandmother and mother tested positive. The journey I’ve been on since that day, the day I heard the incredible words: “You’re negative,” has been a twisty, turny, crazy ass ride— filled with moments of fear, joy, humility, horror, relief, confusion and more grief than I can bare some days. How can I not be grateful, when I dodged this lethal bullet? That, my friends is a tricky question. I am grateful that I will not get sick, that I will not die of HD. I am eternally grateful that my children have been spared ever having it. Those are big things. But, I will bear witness to the decline and suffering of countless people I love, three already. My younger sister is positive (making my niece a candidate) and we believe my brother is positive (adding 3 more nieces and nephews to the mix).

I hope to chronicle the paths I travel and share my story. It is my story alone. However, I have met other families who walk beside me, and I know that there are many places that our paths cross. I hope you will leave a comment, share your own story. I hope that what I have to say illuminates something for someone else out there who is facing HD, or living with someone they love who has HD.

Hard to say where this will go. Join me and see.

4 Responses to This Is My Story… for now.

  1. crutcht says:

    Hello Dawn,

    My husband, John, is the surviving sibling from a family devastated by HD over the past five generations. Their story is not unusual in the HD community; grandfather, mother, aunts, uncles all struck down at young ages from the disease. John and I lost his three sisters, my dear friends. Since he was very close to his sisters, we stared into the face of Huntington’s for 28 years. During those years, John chose not to be tested so we clung to hope, each other and lived mindfully. My dear husband surprised me in the Fall of 2015 when he told me he wanted to be tested. He had decided to go forward because he wanted to give our two children a definitive answer as they were both planning to be married. His test was negative.

    Since I married into this family knowing the possible consequences of my decision, living at risk was very difficult since I come from a family with severe OCD. HD is not a commonly known disease so the world really doesn’t understand what HD families live with everyday; wondering when you drop something or forget where you put your car keys if this is the beginning of the end.

    I am publishing a book in February, “Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s”. 100% of the profits from my book will be donated to Huntington’s Disease Society of America (HDSA). I received a contract from a publisher but the royalties I was offered was very low and it would not allow me to reach the financial goals I have set for the book. By self-publishing, selling the book from my website and cutting out the middle man (Amazon) I will make a profit of approximately $10 per book. The book will be available on Amazon around the world, and my profit will be about $5 per book. My story is how I survived living with unimaginable uncertainty every day.

    The following is what appears on the back cover of my book:

    A powerful, deeply personal memoir: an inspirational story of a young woman who steps outside her comfort zone and takes the biggest gamble of her life to love a man with a precarious future.

    At age twenty-two, Therese Crutcher thought she was in control of her life by eliminating as much uncertainty through meticulous planning, leaving nothing to chance. When fate steps in, and John Marin and his three sisters learn they are at risk for the worst disease on the planet, Therese is confronted with a life-altering decision; can she navigate through the treacherous swamp of uncertainty presented by Huntington’s disease? After much soul searching, Therese marries her beloved and, thus unfolds a life filled with unpredictability, tough choices, and pain, and yet full of love, good times and great joy.

    Crutcher comes to realize that the uncertainty she willingly took on has opened her heart to love more deeply; that acknowledging her world could change overnight has made her life richer. Told with deep emotion and great suspense, “Watching Their Dance” captures the reality of a life shrouded in the ambiguity of an inherited, fatal brain disease.

    Best,
    Therese Crutcher-Marin
    http://www.theresecrutchermarin.com
    theresecrutchermarin@gmail.com
    Facebook Author Page: https://www.facebook.com/authortheresecrutchermarin/

    • Therese, thanks so much for this very personal and touching comment, and for sharing your personal experiences with HD. Why don’t we plan for a blog post, to help support your book. This is not the blog I write on most. I blog actively from Tales From the Motherland. I have found it hard to keep up with The Huntington Chronicles, for personal and family reasons… but my other blog has a wide readership. I would be happy to help support your book, thru’ a blog post, closer to publishing. Please feel free to email me at tftmotherland@gmail.com. I’ve been traveling, and may not respond right away, but will respond as soon as I can.

      Again, thanks for visiting my blog and for taking the time to share. I’m so glad your husband has been spared!

  2. Thanks Dawn. May is HD Awareness Month. Would that be a good time for the blog?
    Best, Therese

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s