By Kelly Roberts

When I was seven, my father was diagnosed with Huntington’s disease. For ten years my siblings and I watched him suffer and deteriorate. He died when I was seventeen. By then, we clearly understood one of us might end up like him. Living at risk for Huntington’s disease is a tremendous burden to carry.

As I reflect on my life, one truth becomes evident: What we believe to be true about ourselves determines how our lives unfold.

 

Fortunately, our mother was strong and resilient. She taught us to be so. She insisted that we had a choice: Huntington’s disease could be a fate or a challenge. Her love for us was great, so most of what we believed to be true about ourselves was positive.

Secret fears
 

However, secretly I believed HD made me flawed and that I would never find someone to love. I believed my life would be short and that I didn’t have the freedom to dream. I imprisoned myself in my own thoughts and became unable to know where I came from, or where I was going.

 

My younger brother Rob lived his life differently. Rob thought of himself as worthy and loved freely. He never expressed worry about the future, but dreamed of being a professional football player. Rob lived the moment and has always been proud of where he came from.

 

Four years ago, both Rob and I were tested for Huntington’s disease. When I tested negative, Rob cried tears of relief. When Rob’s test came back positive, I cried tears of sorrow.

 

In an instant what we had believed to be true about ourselves had changed.

Able to dream again
 

My life has changed for the better. However, letting go of deeply ingrained beliefs has been challenging. Meditation has given me awareness and control over my thoughts. Yoga has taught me to breathe and to heal from within. And the gentle power of prayer has lifted me higher. My beliefs are starting to change and for the first time in my life, I’m able to dream.

 

Rob’s life has also changed. He has retired from his job as a prison guard and can no longer drive. He’s been divorced and lives at home with our mother and stepfather. His symptoms have become more severe and he struggles to walk, eat and to do simple tasks.

 

Although he has endured many hardships, what Rob believes to be true about himself has remained the same.

Refusing to worry
 

He continues to feel worthy and loves freely. Rob has a new girlfriend who sees beyond Huntington’s. She understands the destructive nature of the disease, yet sincerely wants to hold him while she can. She happily cares for him and she patiently listens to him. She genuinely appreciates the moments she has with him. Rob’s new girlfriend truly loves him for who he is.

 

Although his future is uncertain, Rob refuses to worry about what is to come. He dreams of the day there is a cure and he can return to his job as a prison guard. Rob remains proud of where he came from by dedicating his daily workouts to our father. He finds happiness in the moment. Anyone who has met my brother Rob knows what I mean. His positive outlook on life is uplifting. One can’t help but be overcome by the strength of his heart.

 

In the end, I can only hope what I believe to be true about myself leads to a life as meaningful as Rob’s.

 

Ironic as it is, I’ve lived my life worrying about HD, only to find out that I didn’t carry the gene. While Rob lived his life freely, only to discover that he did.

 

It’s taken me far too long to gain the insight Rob has had all along. And now I turn to him for inspiration.