Words of Encouragement Bond Us to Other HD Families
In a recent column, I wrote about the high emotional cost my wife, Jill, and I face by writing a weekly column about her journey being gene-positive for Huntington’s disease (HD). It doesn’t help that our daughter is also gene-positive. Jill wondered if our weekly column was helpful to our community.
Based on the responses we received, the answer is, overwhelmingly, yes.
After the column was published, we received more comments from readers than we had ever gotten before. Every time one was posted, an email was sent to notify us. I would read them out loud to Jill, and some of the comments made us cry. All of them filled our hearts with hope and love.
The column is helping people. It is giving families solace. It is making them feel less alone. Some people even shared that the column helps them learn more about HD.
I’d like to thank all of our readers, with a special thank-you to those who wrote to us in the comments.
Following are several snippets we received:
“It is encouraging for all who read and are in similar situations to you.” — SB
“I really appreciate this column, like others, it helps to create a sense of ‘normalcy’ around HD.” — AW
“Please know that I and other readers feel a connection with what you write about and your column creates a community and helps those of us in this community to be better informed and feel less alone.” — Meghan D.
One person even wrote in German, a language we don’t speak; thank goodness for Google Translate. Another, a caregiver, wrote a touching poem about her daughter, who has battled HD for at least 15 years.
One of the main points that people repeatedly made was that our mental well-being is more important than any other factors in deciding whether to stop or continue writing the column. We should do what is best for us.
What readers shared answered Jill’s original question, but it also affected us in other ways. Each post made us feel closer to you, our readers. They made us feel less alone in my family’s HD journey.
The fact that people were willing to share their HD journeys reminded us that this is one heck of a courageous community.
Jill and I have decided that one day we may choose to stop writing about HD on a weekly basis, but that time is not now. At the moment, we’ll continue to share our lives with others.
Thank you for reminding us that while HD may be a terrible disease, one that dramatically changes a person’s mind and body, it cannot take away the love that we can show each other through simple words and actions. Thank you for sharing your love with us. Our hearts appreciate it a lot.
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.
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Comments
Mary M Andersen
Thank you! It must be hard to keep it going with all that is going in your lives. It does help keep us connected knowing we are not alone. May God bless and continue to give you the ability to keep it going.
Carlos Briceño
Thank you for your encouragement! It can be difficult, but knowing we help people feel more connected, helps us keep going. As long as Jill is okay with sharing, I will keep writing.