The Inexhaustible Reality of Love

Reality bites.

That was the name of a 1994 romantic comedy movie starring Winona Ryder and Ethan Hawke. It’s about four recent graduates finding out how difficult life can be when searching for a decent job and true love after college. In pop culture, that phrase eventually came to mean that reality sucks. Actually, though, that phrase’s intended meaning was a reference to “little bites of reality.”

But for the purposes of this column, that phrase will be used in the context that reality does often suck.

As many college-goers know, being a student can be like living in a bubble. As Thornton Melon, an obnoxious millionaire played by Rodney Dangerfield, said during his commencement speech in the movie “Back to School”, “And so, to all you graduates … as you go out into the world, my advice to you is … don’t go! It’s rough out there. Move back with your parents. Let them worry about it.”

The reality of having a rare terminal illness also bites. But, contrary to Dangerfield’s advice, there is no way to sidestep Huntington’s disease. No way to ignore it, or hit the pause button, or deny it, or let someone else worry about it. It’s a relentless neurodegenerative disease that attacks generations of families. This is my family’s reality: my wife and daughter have been diagnosed with the illness.

But one of the great things about humanity is hope.

When pondering hope, I often recall William Faulkner’s 1949 Nobel Prize in Literature speech, presented during the dawn of the Cold War when recent nuclear bomb technology had shown a terrifying capacity to obliterate people and cities. Faulkner refused to believe in the “end of man.” Instead, he said that man would “prevail” and “endure by lifting his heart.”

I was reminded of Faulkner’s words when thinking about the Huntington’s disease community. Throughout the year, various chapters of the Huntington’s Disease Society of America (HDSA) sponsor a signature grassroots fundraising campaign called Team Hope Walk, which has raised more than $18 million since 2007 to support HDSA’s mission to help those affected by the illness.

Since most events can’t be held in person for obvious reasons these days, Team Hope walks have turned virtual this year, which means participants can choose their own course, such as throughout their neighborhood or even on a treadmill.

My wife, daughter, and I went on one of these walks about five years ago, before they were diagnosed.

It was a beautiful, sunny day. We walked throughout our local downtown area, next to a river. The atmosphere was festive: people wearing colorful T-shirts and carrying signs. There were balloons. I remember seeing people displaying some of the tell-tale symptoms, such as twitchy body movements. Others pushed loved ones in wheelchairs. I remember thinking, “Could Jill or Lexi be in wheelchairs one day?” That thought made me sad, but the enduring feeling of the day was one of hope.

All the families and friends there that day, many of whom will no doubt participate in virtual walks in the months ahead, displayed hope because of their willingness to participate and because of the compassion with which they treated their loved ones. They didn’t accept Rodney Dangerfield’s advice to remain in a bubble. Instead, they have the courage to take the disease head-on.

What was demonstrated that day echoed what Faulkner celebrated on the day of his Nobel Prize speech: “[Man] is immortal, not because he alone among creatures has an inexhaustible voice, but because he has a soul, a spirit capable of compassion and sacrifice and endurance.”

Huntington’s disease requires caregivers who have compassion, sacrifice, and endurance. I am ready for the task because my wife and daughter deserve that kind of love.

Yes, reality can bite, but love — especially inexhaustible love — can overcome any reality.

To find a virtual Team Hope Walk near you, please click here.

***

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.