Accepting Huntington’s Means Letting Go of the Wheel
Family has always been important to my wife, Jill. However, she wouldn’t plan many trips due to concerns about travel costs.
Jill’s attitude shifted after she tested positive for Huntington’s disease in 2018. She saw every long holiday weekend as an opportunity to visit our loved ones.
Because our dog travels with us, we tend to drive. After we moved to Maryland last summer, it didn’t take Jill long to Google how long it would take to travel to Boston to see our daughter, Alexus, who is also gene-positive for Huntington’s.
Jill then made an 18-hour playlist for the trip.
When Columbus Day weekend rolled around in October, the music came in handy, as the drive to Boston took nearly nine hours. To say Jill loves music is an understatement. I have proof: She knew every word to every song.
Just before we arrived in Boston, Carrie Underwood’s song “Jesus, Take the Wheel” came on. The chorus goes:
“Jesus, take the wheel
Take it from my hands
‘Cause I can’t do this on my own.
I’m letting go
So give me one more chance
And save me from this road I’m on.”
I vaguely remember hearing the song when it was released in 2005. I usually don’t pay attention to music unless it’s U2, the Beatles, or Bruce Springsteen and the E Street Band.
As soon as it started, Jill exclaimed, “I love this song!” (For the record, she says that about every song.) She explained that it’s about surrendering — giving up control in a situation where you never really had control in the first place. She’s reminded of this idea when she starts worrying about Huntington’s.
Because the disease is terminal, Jill knows she won’t beat it. However, she has resolved not to let her fears debilitate her.
For me, the song holds another meaning. As someone with a deep faith in God, the lyrics reminded me that I can turn to him for the grace and supernatural help I believe he provides. Doing so enables me to cope with this horrible illness by letting go of my worries and focusing on the blessings in my life.
The song can remind anyone, with or without faith, that giving up the wheel requires us to slide into the passenger’s seat and accept whatever path the driver takes.
No one wants Jill and Alexus to have Huntington’s. But sadly, that is the road we’re on. We’ve learned to accept it by surrendering and being grateful for the friends and family members who will always be there for us, even when the road gets bumpy. As the song’s lyrics so eloquently put it, we can’t do this on our own.
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