The Cliff and the Choice

The Cliff and the Choice

From the Summer 1999 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

This poem was submitted by Julie Sando, a woman who recently went in for HD testing. Her words VIVIDLY describe the "testing process" and some feelings one might have! The Illinois Chapter has received permission to reprint this poem.

Walking a path there are no signs, no direction, I am alone. I walked through crowds and still the sense that I am somewhere else and cannot fit in like I used to overwhelms me.
I come to a fork in the road. To the left is the unknown road called "What If", to the right the sign says "Test Ahead." At the end of each road is a cliff. I walk to the edge of each one. To the one at the left I ask myself, "What if I test? What if I don't? What is best? What is worse? What if I have it? What if I don't? What are my choices? What are the risks, being at risk?
To the one on the right I ask myself, "What will I find? What will I do? Positive, negative or the unknown in between. Will I step off the edge and fall from the cliff? or will I take off and soar to the heights?
I walk back and forth at the fork in the road turning back so often I have worn a path of its own. Sometimes I think I know and I take off in one way only to stop in my tracks my resolve in pieces on the ground and my soul weary from the journey.
There are even days when I almost forget and I do not go to the fork in the road. I am alive for now and I am going to live today for all it's worth. I am going to tell someone I love them, I am going to cherish this family, this day, this job, this house, these friends, the things I have taken for granted. I sort out what matters and I smell the roses along the way. I feel I have aged and at times I feel like a child -- vulnerable.
One day I take off at the fork in the road. Only I do not stop I go to the right and the test I take... realizing that the test began long before this time and place only I did not know it. I begin to walk toward the cliff wondering what lies ahead.
It is just me and the Lord and I am trusting completely in Him. I cannot look back and I cannot stop I am compelled to go on, it is my time. As I get to the edge I can barely move my feet, my heart is racing, I know I am going to step off.
I hear the words I did not know I would hear. Negative! Negative! Was I meant to soar? As I run off the edge I am hitting a wall, I fall smack dab down on the edge and land with a thump. I do not understand why I cannot fly? I meet shock, then grief comes to visit, I am thankful, I am happy but I am crying.
I am feeling so much emotion that I have buried down deep. Emotions for my mother who is in mid to late stages of HD. Emotions about this whole journey and process that I have not allowed myself to feel. They come floating up calling my name. Time to take attendance no more tardies they say. You can't put us off. I am so confused. What is this I am feeling?
Others say you can now be the person you wanted to be. I will never be the person I was and I don't even want to be. I like me better now. I was more the me I was meant to be in this journey than I ever was before. I lived in it, I did not wait for some result to dictate my life. I will continue to change because I am a part of HD. My family, my mom, my sib's who are still on their own walk through the fork in the road. My friends in the HD community, Positive, Negative, At risk, Caregivers, loved ones and friends of those impacted by HD. We are family. I will always be a part and I will always live now, and I will grow and I will love and receive. And I will give back.
Slowly I get up and step off the cliff and I see something I never saw before until now. I was never alone, the Lord was and is with me. And with those who tested positive, and at risk and with the caregivers. He never left one. And all my curiosity of whether or not I would fall off the cliff or soar from the heights was also answered. WE ALL GET TO SOAR. No one falls down...we soar closer to heaven and we taste it. And we are changed.

It takes courage to be a part of HD. We cry, we get mad, we are afraid, we laugh, we risk, we are weak, we are strong, we make choices, we live and we die ALL OF US...but we get to do something that some people will never do when we step off that fork in the road...We get to soar!
*****Author's Notes*****
I recently tested negative for HD after being at risk for a number of years. My mother has tested positive in mid-late stages. I have siblings who have not tested. I would never tell someone whether they should test or not test. It is a personal choice.
HD has affected me profoundly. I have made some very special friends in this community and I am so much richer for it. We are family and I am deeply indebted to them for not just being there before but during and after this testing process. I will always have it in my life, in my family for now. I care passionately about this disease and am going to pray and fight for a cure. We all can do the same, "One Voice At a Time."

Update: Since writing this I have journeyed through many emotions. Survivor guilt being one of them. Through time and understanding and mostly prayer, I have come full circle. I am becoming whole inside again. This past June I attended my first HDSA conference in Arlington Va. I loved every part of it. What a joy to go and learn and to be able to come home and use that knowledge in my care of my mom and in helping the HD community at large. The other highlight was meeting a number of our online community. All I can say is these wonderful people are part of my heart. Lastly I recently had the privilege of being asked to be Co-President of our area HD chapter here in Seattle. I am humbled and excited to be a part of something that touches so many. It is my privilege to be an ambassador for the cause of HD. I give a lot of credit to the family here online. I am who I am because of you being a part of my life. I love you.

Update: I am working on a book of sorts called "Even If". It is about my life of which Huntington's Disease is a part. In fact, the knowledge of HD kicked this whole book off. I hope it touches someone right where they are at.