The time has come to say farewell — but not goodbye
Columnist Becky Field pens her final column with gratitude and reflection
When I answered a Facebook post in a Huntington’s disease (HD) community support group, little did I know what kind of a journey it would take me on.
Fellow colleague and columnist B.J. Viau was looking for someone who might be interested in writing a column for Huntington’s Disease News. To my complete surprise, I was offered an interview and got the job!
Huntington’s disease has taken the lives of my great-grandmother, granddad, and dad, and it continues to affect my family. After many years of consideration, I decided to take a genetic test in the summer of 2023 to see if I would also develop Huntington’s disease.
My eldest daughter was about to get married, so I had my children and potential grandchildren on my mind. They could all be at risk. It occupied my thoughts every day.
Through genetic counseling and my knowledge of the CAG repeat sizes in my family, I knew that if I was positive, I’d likely start experiencing physical symptoms in the next few years.
My test result was negative, which cleared not only me from developing the disease, but also my children and subsequent generations. It caused mixed emotions for me and my family.
I hadn’t seen much written before about the day-to-day, personal experiences that HD causes for patients, caregivers, and families. I was excited but apprehensive about my new position as a columnist. I’d always loved English at school, but that was some time ago! I hadn’t written very much since my college days and didn’t have any professional writing experience.
I needn’t have worried. The whole community at Bionews, the parent company of this website, was so warm, welcoming, and supportive.
SMA News Today columnist Brianna Albers was assigned as my column lead. She was a huge help to me and was always available to lend a hand. A talented columnist and writer herself, she offered me welcome writing tips, editing and technology skills, and emotional support.
My editors, Paige Wyant, David DeWitt, and Dave Boddiger taught me so much and were always kind and caring. The subject matter was sensitive and emotional for me to write. Their humanity was always present. I felt supported not only with my writing, but emotionally, too.
The community content directors, Brad Dell, Kevin Schaefer, and Matt Lafleur were amazing to work with, too, and we became firm friends. They gave me an amazing opportunity and believed in me when I was in doubt of my own abilities.
I enjoyed the extra opportunity of moderating for Huntington’s Disease News, finding others to write about their HD stories. These were featured throughout the month of May in this site’s Community Spotlight section. Through their stories, I felt a strong connection to the writers, and we’ve stayed in touch.
We also had monthly community calls with other columnists from various rare disease communities, where ideas for columns were bounced between us. We supported one another, and the bond between us felt strong due to the common difficulties we share.
It is with a heavy heart that I am now saying goodbye to my readers. I believe I’ve shared as much as I can for now, as unfortunately, I’m limited in what I can write about regarding my family members due to privacy considerations. But I will continue my advocacy work through the Huntington’s Disease Association’s HD Voice, helping HD researchers with their projects.
I’m so grateful for this opportunity and am blown away by the love and support from those I’ve worked with and others in the HD community. I’ve made lifelong friends, strengthened my knowledge about HD, and honed my writing skills.
Thanks to all of you who have read and followed my columns, as your support has been extraordinary. The comments I’ve received have been so kind and supportive. Some of them came on my toughest days, when HD was doing its worst to my family. The love and support I received in those comments has meant so much to me and kept me going. It kept me fighting.
I promise to continue supporting members of this community and to remain a part of it. I hope we can celebrate new treatments together and, one day, a cure for Huntington’s disease.
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.
About the Author
Comments
Kathleen LANGLEY
Thank you and Goodluck!
Like you, I tested negative to HD, I lost three siblings, my father, my grandmother and others before them. Presently, I advocate in Australia, and for privacy reason's I have to be careful going public too, but I manage through social media as an example, to raise awareness of it, and to educate it via links to my videos (created for me) and other information.
My experience alone, has helped me by sharing it, along with my memories of those I have lost. Although very sad in losing my family members, I feel both privileged and closer to them, by speaking for them. I never mention names and careful with photos. There are family members who are not happy with me for doing as I am, but there are some who like the reason I do it, but prefer not to hear about it...So, yes, it is sometimes difficult, but for the good of so many more, I do speak where and when I can.
Good on you for what you have shared, and I am happy to hear you felt supported. x
Rebecca Field
Dear Kathleen, the privacy aspect of speaking about HD is a difficult one. So many family members are impacted and, like you say, not all want to speak publicly. It's balancing the advocacy work, whilst respecting other people's choices, that makes it tricky. But I have always also felt it is important to speak out, to give a voice to those that no longer can.
Nancy E Hansen
Becky--I'll miss your columns. I have always resonated with your observations and your contributions have helped me feel less alone taking care of my husband who has HD. Best wishes, Nancy
Rebecca Field
Thank you, Nancy. I'm not abandoning the community and will continue to fight on. Thank you for always supporting me. I wish you and your family all the best - Becky.
Helen Drummond
Becky, thank you so much for your columns. As you have said for those carers , supporters of family members with HD [ in my case a 43yr daughter , in an extended family with no previous history of HD, diagnosed 8 years ago ] , it's the little everyday behavior challenges and hearing how others manage them that I have found the most comfort in your columns. Very best wishes for the future from New Zealand.
Rebecca Field
Dear Helen, HD is so challenging to navigate. I'm glad the columns have helped. At least we know, we are not alone. Sending love and best wishes to you and your family - Becky
Karl Miran
Becky: I enjoyed your voice and your ability to relate your, and your family's journey with HD. We all learn and get strengthened by the others who are in the same boat with us. Thank you.
Rebecca Field
Dear Karl, thank you so much for taking the time to comment and for reading my columns. It definitely feels like we are stronger together and then we feel less alone. I will continue to be part of the HD community and take part in research. Sending love to you and your family - Becky