Willie Nelson’s song, Always On My Mind, has a very different meaning to me. Since that November day in 1978, when Lora, Marcia and Cindy told John and I about their mother having Huntington’s disease (HD), HD has been on my mind every single day. That day was a defining moment in my life, and I would conscientiously choose to live with the threat of HD.
Before any of John’s sisters exhibited symptoms, I was watching, noting, praying, hoping HD would give the Marin’s siblings a pass. That didn’t happen and even though these three (3) beautiful women are gone from my sight and John has tested negative, I wake up every morning still thinking about HD. Because HD has been burned into my mind, became part of my DNA, it did one good thing, it forced me to be MINDFUL every day and that is what kept me sane; appreciating all the good things in my life.
People have said to me, “Well, you volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA); that’s why you think about it”. That’s not the reason; for 38 years, poignant grief lived in my heart and deep and poignant distress became my normal. I watched something so horrific that it scarred my soul and the only way I can deal with it is to help HD families in my community.
We Can Never Lose HOPE…..
To know more about Therese and Huntington’s disease, Visit Therese’s Author Website . https://www.theresecrutchermarin.com