The Importance of Preserving Our Words
I recently received an email from Kelli Yoder, the communications manager at Adira Foundation, an organization whose mission is to “invest in better lives for people with neurodegenerative diseases.”
She wrote that the foundation had enlisted the help of StoryCorps, a nonprofit that gives people the opportunity to interview friends and loved ones about their lives. These recordings are stored at the Library of Congress’ American Folklife Center, and Kelli said StoryCorps plans to record 15 stories from the neurodegenerative diseases community.
Because Kelli reads this column, she knows that two of my loved ones — my wife, Jill, and daughter, Alexus — are gene-positive for Huntington’s disease, and she wondered if we wanted to participate in the project.
When I told Jill about the email and added that the recording would be archived at the Library of Congress, she reacted as if she had won the lottery.
“THAT IS SO COOL!” she exclaimed.
(Just between us, Jill is a giant nerd about things like this.)
“We will be part of history!”
Alexus also agreed to participate in the video interview, which took place at the end of April. We spent about 20 minutes prepping for it.
What emerged was how matter-of-fact Jill and Alexus were during our phone conversation. We could have been talking about a family event we had gone to years ago. Their courage in the face of a horrible illness constantly astounds me.
Something Jill said also struck me. She wanted us to go over the questions the night before the interview. The reason was simple, but also very profound.
“I lose my words sometimes,” she said. She didn’t want that to happen during the recording, and hoped that the practice time would help her remember her answers.
Suddenly, this recording took on a deeper, more important meaning for my family and me. Yes, it makes you feel special when someone seeks you out like Kelli did. Yes, it’s wonderful that the Library of Congress will store the recording in its archives. But what makes this conversation even more special is that it reflects a time when Jill’s mind is still sharp.
Later, as HD progresses and she and Alexus struggle for words, I will click on the recording and listen to the end of it. Because just before signing off, I said, “I love you all,” and they both responded in similar fashion.
Those words will remain seared in my brain — never to be lost.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.