Celebrating a Year of Being Part of a Courageous Community

Celebrating a Year of Being Part of a Courageous Community
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This week marks a year since I started writing my column, “A Family Tradition.” Having a forum like this has provided an amazing opportunity to share about the journey my wife, Jill, and I have embarked on since her Huntington’s disease diagnosis in 2018.

Honestly, I wish neither she nor my daughter had the disease so that I wouldn’t have to write about it. I also wish I could run 100 meters in nine seconds flat. But that will never happen. So, you take the good and the bad in life.

One of the gems I’ve found in sharing in this column is the importance of being part of a community. One positive aspect of writing for BioNews Services, the parent company of Huntington’s Disease News, is being connected to other writers and editors who contribute to this site via Slack, a business messaging platform that helps organizations and people stay in touch with each other.

An overwhelming majority of those using BioNews’ Slack application have a rare disease. I don’t. I’m a caregiver, so I stay silent most of the time, chiming in when appropriate. I feel a little like an outsider because I am not chronically ill. But I do read the comments, and what strikes me to my core is the bravery of everyone who is a part of this community — they are positive, resilient, and vulnerable in the face of great fears and sufferings.

They inspire me. They remind me of my wife and daughter because that’s how they are, too. And so when I write, I try to be positive, resilient, and vulnerable, too.

Over the past year, I’ve received comments from readers about something in the column that struck them. I have appreciated gaining insight into the courage of other families who face Huntington’s. These people inspire me, too.

I have tried my best to be honest in telling a story from one family’s perspective, but especially from the point of view of a caregiver, so that others who are going through the trials and tribulations of dealing with Huntington’s can feel that they’re not alone and that they may be inspired or helped along their journeys.

An important lesson people are learning in this age of the coronavirus is that we need one another. We need restaurants to gather over meals. We need to hug each other when we see each other in the street. We need the ordinary activities that help us share our hearts with one another and that help us to be human. At the moment, all those simple pleasures have been taken away from us.

But, as I’ve learned from being part of this BioNews community over the past year, community life can take many forms. Every form of community I’ve been engaged with in my life prior to writing this column was through people I met in person.

Although I may never meet a reader of this column or someone in Slack in person, I know that I am honored to be a part of this community because it represents what this world needs more of: courage, whose original meaning is to “tell the story of who you are with your whole heart.”

That’s one thing a pandemic can never take away from us: courage in the face of suffering.

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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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Carlos is a journalist in the Midwest, who through the grace of God has been blessed with a brilliant, beautiful, and courageous wife and daughter. His wife found out she was gene-positive for Huntington’s Disease (HD) at the age of 41, while his daughter found out she was gene-positive for HD when she was 22. Carlos’s aim in writing column is to offer a caregiver’s perspective while also trying to inspire those families who are dealing with Huntington’s. He loves to evangelize, read, play soccer, and share — according to family members —really bad puns. (For the record, Carlos thinks his puns are really punny and funderful.)
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Carlos is a journalist in the Midwest, who through the grace of God has been blessed with a brilliant, beautiful, and courageous wife and daughter. His wife found out she was gene-positive for Huntington’s Disease (HD) at the age of 41, while his daughter found out she was gene-positive for HD when she was 22. Carlos’s aim in writing column is to offer a caregiver’s perspective while also trying to inspire those families who are dealing with Huntington’s. He loves to evangelize, read, play soccer, and share — according to family members —really bad puns. (For the record, Carlos thinks his puns are really punny and funderful.)
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