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The Nature of Love and Huntington's Disease

No one in my family has Huntington’s disease and no close friends where I was born and raised or where I live currently has the disease. And yet it has been a source of Interest, curiosity and a platform for my learning about the ultimate power for goodness and love. It is that kind of learning that will remain with me for the rest of my life.

In my youth I was a folk singer and as the fashion of the 60s dictated, I learned to know the background and authorship of many of the songs I performed. My interest in contemporary folk music along with the roots of it, led me to learn about Woody Guthrie. His music inspired me to learn more about him, and the story of his life made me wonder how a man with such great talent had to suffer when he developed Huntington’s disease. Knowing nothing about this disease, I looked it up at the local library and was astounded to learn of its complications and impact on the individual and whole families, sometimes for generations.

As the years passed, my specific interest in Huntington’s disease faded with time and the needs and concerns of work and family. Then approximately nine years ago I met a man whose wife has Huntington’s disease, and as my friendship with him through social media grew over time, it brought with it a renewed interest in this savage disease as I read of my friend’s personal struggles and difficulties and yet his courage and love through it all.

Some of us learn the nature of love and its transformative powers and the struggles we sometimes face with adversity that affect our lives and those we love through having to care for someone else. My youth is gone, but it has been replaced with many years of learning about myself and others, as I have faced illnesses of my own and those I love along with the death of family members and friends. I continue to learn about what it takes to rise up when one’s hopes and dreams are interrupted by health problems. These days when I think about myself in my older years, I no longer worry as I once did about being burdened and stressed by caring for someone else, when I know someone who has spent many years with one of the most challenging of all health issues, that of Huntington’s disease. I have the example from reading the words of my friend of how love is transforming and healing in the hearts of those who care for people who have this complicated disease.

We often say we cannot know the mind and heart of God, but I have come to learn in some ways we can through what we learn by caring for others or knowing someone who is a caregiver and must deal with complex concerns that would tax most people beyond their capabilities. Yet these caregivers provide support and help in compassionate ways and do so every day for many years. That caregiving is made even more difficult when the person who needs care is unable often to respond appropriately or in the ways one would want. Love is not limited and instead for those who are able to dig down deep into their reservoir of goodness, something that often rises up when we are needed most, they learn the nature of love and the absolute wonder and magnitude of it. Perhaps that is how we learn how God loves.

Thank you, Kevin Jess, for some of my best lessons in the winter of my life of what love really means and how it can remain forever as an example of one’s ultimate victory over hardship. It will remind me every day how we can all be better in our own lives through following the model you and others like you have set by caring for another with the spirit of the Divine.




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