United in Grief, We Are Huntington’s Strong

Author’s note: This column is for anyone with Huntington’s disease or their family and friends.

Dear Huntington’s community:

Many of us don’t know each other, but we are bound by our suffering, heartache, pain, sorrow, and grief. And also by our hope, love, and mercy. We are linked together by a gene that has affected us or someone we love. We are connected through our tears. We feel grateful for life’s small blessings and try not to take our lives or those of our loved ones for granted.

We are a community of hearts beating as one in our hope for a cure.

We are Huntington’s weak, but more importantly, Huntington’s Strong.

We stand united in compassion and empathy for all who have endured this hideous and tragic disease.

The purpose of this column is to offer hope. To remind us that we can be bowed down but remain undefeated. We are saddened, but not mired in despair.

The hope I refer to comes from all of us in the Huntington’s community and our loved ones — friends and family, and even strangers — who love us, pray for us, and offer comfort and consolation in times of need. They share our laughter and our tears, bringing us much-needed relief from our pain.

Readers may identify with my experience as a caregiver, and with those of my wife and daughter, who are gene-positive for the disease. That is why I am sharing this message of hope.

Together, we can pray for each other. We can hope for the best for each other. Raise funds to find a cure for Huntington’s. Spread awareness. Share our tears when we hear of a Huntington’s diagnosis — because we are a community.

We are Huntington’s Strong.

The idea for this column was inspired by the community of family, friends, and neighbors who have rallied around my family following the recent tragic death of my sister, Rose.

She and my 22-year-old nephew Dylan had just arrived home in the late evening after attending a vigil for Allhallows Eve. A fierce storm was passing through their town that night. The rain was pelting down hard, driven by a strong wind. As they waited for the storm to ease, Rose and Dylan sat in their car, which was parked in the driveway between two others, listening to music. Rose wanted to hear one more song.

Several large trees grow in their yard, and Dylan was concerned that one of them might topple on top of their two-story home. He said to his mother, “Mom, I think we should sleep in the basement tonight.”

Just then, a 150-foot oak tree fell, landing on all three cars. The trunk of the giant tree split, smashing down on the passenger side where my sister was sitting. Dylan, who was in the driver’s seat, was unhurt. Rose’s spinal cord was crushed, and she died shortly afterward from her injuries.

In the following days, friends and family rallied around us, showering us with love, food, and tears. That is what community is about. The root word in Latin means “shared by all or many.”

In other words, united by something — grief and love for my sister, her family, and my family — they shared their hearts with us.

Their example has inspired me to share my belief that we are already united by a hideous gene. We must pour out our prayers, love, and support to others in our community, even those we don’t know.

By sharing our hearts together, we can be Huntington’s Strong.

If you or anyone you know is experiencing emotional distress related to a natural or man-made disaster, please call the Substance Abuse and Mental Health Services Administration’s Disaster Distress Helpline at 1-800-985-5990 or visit its website here.

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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.