Nearly thirty years has gone by since the words"Huntington's Disease" crashed into my life and claimed the life of my father. My knowledge of this disease was virtually non-existent, and fear for myself and my future was nowhere to be found. After all, I was a healthy young man with a bright outlook on life, and besides, bad things always happened to other people.
The exuberance of youth, and the joy of life in general doesn't really leave much room for worry. Of course we all realize that there are always risks in our lives, the risk of an accident, a financial loss, and of course even risk of illness, cancer & heart disease being among the Big health concerns of my age group. But even as bad as these events can be to our health and well being, they still leave us with a bit of control of the possible outcome of these calamilities in our lives. We can choose to drive and work in a safe manner and in general use caution to alleviate the risk of an accident. We can improve our chances of surviving cancer and heart disease by choosing not to use tobacco, by paying attention to our nutrition, and making sure our bodies receive proper amounts of exercise and rest.
This small measure of control, and the knowledge that we can do something no matter how small, to help guide the outcome of these events, give us a most precious measure of peace so that we do not have to allow these events to interfere needlessly in the planning and enjoyment of our lives.
Then comes the time when you find yourself being confronted by a Monster that not only threatens your Body, but your Mind as well. And in this matter you have NO control what so ever. Huntington's Disease, the worst possible nightmare for a human to contend with, has just made known to you, its kinship to your family. You slowly realize the path of destruction HD has taken with your ancestors.
Continuing unabated through your siblings, taunting your every waking moment and invading your dreams with the cruel knowledge of it's uncontrollable power of destruction, and realizing that your life and even more important, the lives of your children and grandchildren, rests on the toss of a coin, the odds at 50/50, not good, but hey! you are a lucky guy, do you worry about the 50% chance that you carry this unwanted relative, or do you spend your time hoping for the good part, the 50% chance that you are free from this Monster?
So therein lies the quandary of being at risk for HD. For it makes no difference which thought occupies your mind, 50% positive or 50% negative, the equation always adds up to 100%. Huntington's always somewhere just below the surface of your mind, always announcing it's presence with every little tremor, every dropped cup or tool, every stumble, asks the question - is this it, is this the beginning of the end of my life, is this the signal for the beginning of the destruction of my mind and body that will drive away my friends and family, and cast me forever into darkness and despair?
I cannot paint a picture here of bravery in the face of adversity, I am frightened of this disease I fear not the physical damage of HD, what I do fear most is the loss of what I am to my family, I fear that I will become lost in the perception of a stranger and of course there are the alternatives to constant worry and stress.
Your can always be tested, instead of tossing the coin in your mind. Are you brave enough to toss it for real? Do you test and realize if it is positive you have thrown away all hope, or do you continue with each day, and that coin constantly tumbling through your mind, and that voice saying you might be safe, and so you endure the nightmare and the dark dreams and wake up from sleep that is more exhausting than restful and begin another day that differs very little from the night. They say that knowledge is power, but to a person at risk for Huntington's Disease, that knowledge is an ever repeating vision of the future constantly repeated day after day.
But compared to a young person just starting out in life, I have had it comparatively easy, since my life was well under way, and the bad news was late in coming. I can't possibly imagine growing up in an HD home, and watching my mother or father being torn apart by this disease and realizing that this too could be my destiny. The additional burden and stress of trying to plan a future, find love and some degree of happiness amidst the turmoil, the every day thoughts of good grades in school, fun times with my friends, career plans, and dreams of raising a family, all seem to suddenly take a back seat to the more pressing thoughts of a reality that casts a pall of darkness over the future. Were I Mr. Webster, composing my dictionary and wanting to give meaning to the word 'uncertain', I would scribe "At Risk For Huntingtons Disease."
THE DRAGON IS LOOSE
The door just creaked open
My heart racing with fright
My mind has loosed the Dragon
For another sleepless Night
I'll toss and turn in search of sleep
But all I'm granted, tears to weep
As thoughts of loss race through my mind
The Dragon, not know for being kind
What is it I ask, why all this fear
I tremble and shake when I sense you are near
No said the Dragon, your fear is not for me
For the destruction I wreak, all can see
No I screamed, I've seen what you do
You"ll take a great mind, and foul it with glue
You'll take a fine dancer, so graceful and light
Make them stumble and fall for your own delight
The taking of sustenance, your own personal joke
To keep our bodies alive, we must risk to choke
We stumble and flail, the butt of a joke
We fall and crash till our bones are broke
Dedicated to my family
To all who have gone
To all who will follow
Ron Cleveland June 27 /01
MEMORIES
Long before We Are Born
We Are Hope In Someone's Heart
Just A Dream Of Things To Come
Of Which We'll Be A part
We Are But A Gleam In Fathers Eyes
A Son To Carry On As Heir
A Quickening of Mothers Heart
For A Daughter, Sweet And Fair
Each Counted Day, Turns Into Months
The Time Draws Ever Near
Then Comes The Day, First breath You Drew
Your Voice Rang Loud And Clear
The Years Have Faded Your Picture Now
Your Joyful Life We Had Planned
Now Faded Away To Memories
And This Picture I Hold In My Hand
And Now I Sit And Dream Each Day
The Tears Are Gone From My Eyes
And I Remember That Beautiful Day
When My Sun Began To Rise
For You Were The Gleam In Your Fathers Eyes
The Thought Of You Quickened My Heart
Never We Dreamed The Fate That Awaited
The Dragon That Ripped Out My Heart
