Survival, Watching Their Dance

How I Lived with the Uncertainty of Huntington’s Disease

Mr. Anthony Jay Robbins said, “The quality of your life is in direct proportion to the amount of uncertainty you can comfortably deal with.”  Tony is an American Multi-level marketing advocate, businessman, and author. He became well-known for his infomercials and self-help books: Unlimited Power, Unleash the Power Within and Awaken the Giant.

Certainty is almost always preferable to uncertainty because we humans like to know!  It was critical for me to know the who, what, where, when and why in my life because being in control calmed my Obsessive Compulsive Disorder (OCD) symptoms. Being out of control threw me into a uncertainty-induced anxiety.

In 1978, the Huntington’s disease (HD) monster was introduced into my life.  John, the love of my life, had an unknown gene status for this fatal, genetic disorder that progressively destroyed the nerve cells in the brain. At that time, I was forced to decide if I could live with this huge unknown factor in my life (uncertainty), and if I did choose that path, could I live happily and not be a basket case.

When I decided to marry John, I realized I had to adapt to a life of uncertainty; change my way of thinking, learn to focus on the positive, find ways not to worry about the future.  So, I began searching for something reliable to grab ahold of.  I discovered four (4) strategies to embrace to make uncertainty bearable.

  1.  Know that you’re not seeing every option. This was hard because I only saw two options:  John had the mutated gene or he didn’t.  So, I slowed down and reminded myself that there are options that I couldn’t possible see immediately.  I told myself, just because I don’t see them doesn’t mean they aren’t there. And sure enough, with time, I found one way to cope through MINDFULNESS.   “Mindfulness is the aware, balanced acceptance of the present experience. It isn’t more complicated than that. It is opening to or receiving the present moment, pleasant or unpleasant, just as it is, without either clinging to it or rejecting it.” ~Sylvia Boorstein  

In my next blog, I will continue to discuss the ways I dealt with unimaginable uncertainty for 38 years.

We can never lose HOPE…………………….Therese

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is a poignant remembrance of a love forged in crisis. To purchase the book, go to:  100% of the proceeds from the book are being donated to Huntington’s organizations around the world.










Photo credit: One Way Stock via / CC BY-ND & Photo credit: DES Daughter via / CC BY-NC-SA

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