Voices: A Huntington's Disease Story

December 8, 2017

 

I've always been a fan of voices.  Not the voices that we all tend to celebrate; ones we are used to hearing on the radio or television that we don't even need to see in order to recognize who it is.  No, I'm talking about those voices of people we know, those in our inner circle of family, friends, coworkers and even the odd acquaintance or the cashier that has worked for years at the local grocery store.

 

There have been many moments while attending worship on Sunday when I would listen for a voice and been so glad to hear them on that day, savoring the sweet sound of how they pronounce their words and hearing them tilt their voice to add more expression to the thought they were trying to convey to the congregation. 

 

There are some voices that of course have been silenced, some for many years. I can remember little things they used to say, for instance, my mother used to say, "That'll change the water on the beans!", and then laugh to herself, but as I sit here I can't remember the sound of her voice.  Try as I might, I simply can't. Nor can I remember my father's voice, even though I remember well the conversations we would have.  There are many more, too many, and it brings a tear to my eye as I'm afraid that it means that the essence of who they were to me is fading from my memory.

 

That fear really hit my heart last November when my wife of thirty-six years lost her ability to speak or even utter a sound. My wife is in her 18th year of Huntington's Disease, the monster of all diseases.  In case you haven't heard of it, it is like having ALS, Parkinson's, Alzheimer's and Bipolar disorder all at the same time.  It is a horrible disease that seems to have tentacles that reach out into the family to make sure that not only the victim of the disease is miserable but it makes sure that everyone is affected. Friends begin to drift as they can feel those tentacles trying to pull them in to suffocate them as well. But when her voice stopped its lovely sound that tickled my ear when she spoke, a part of me ended.  I kept trying to hear her in my head and yet I could just barely hear her.  It was like I was in a constant nightmare that I couldn't wake up from.

 

Many other indignities would soon inflict her and it was apparent that her time with us would soon end, but I refused to accept it. Inside my mind I knew the facts, I knew she was dying, but she had always asked me to make sure she was given every chance. And a part of me simply wanted to hear her voice one more time.

 

I began to see videos being posted by people that I knew in the HD community of young people who were in terrible circumstances with the progression of their disease.  However, miracles seemed to be happening before my eyes.  They were being given CBD oil, or cannabis oil as it is otherwise called.  The results were astounding and hope was restored in me.  Could this work with my wife who was now palliative, approaching end of life? Could it?  I decided to try.

     

I approached medical professionals first and they were supportive although they would not be able to administer the oil, that would be my responsibility, and so it began.

     

It took four days.  Four days!

 

Yes! In four days I could see her throat move to swallow, which she was not able to do.  She appeared quicker when you tried to get her attention, but something else happened that was so much sweeter even though the other things were so much more important medically.

     

I asked her, "Guess what happened to me today?" I was simply expecting her eyes to immediately look to me for an answer. But instead she quickly said, "What?" She spoke!  I heard her sweet voice once again.

 

Listen to your loved ones. Relish not only in their words, but the sounds they make.  Truly hear them, like the music that it is. It is the sweetest song ever sung.