Writing the Soundtrack to My Life With My Gene-positive Wife

A soundtrack has been playing in the back of my mind for weeks now, ever since I last saw my wife, Jill. Following are some of the songs that have been on my mental playlist:

• “So Far Away” by Dire Straits
• “So Far Away” by Carole King (different than the Dire Straits song)
• “Somewhere Out There” by Linda Ronstadt and James Ingram

Some sample lyrics from the Ronstadt-Ingram song: “And even though I know how very far apart we are/ It helps to think we might be wishin’ on the same bright star.”

Yes, I freely admit I can be sappy when it comes to song selection.

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I have not seen Jill since the end of June, when she left our home in Illinois to visit our daughter in Boston for two weeks. By the time she returned in mid-July, I had already moved to start my new job in Virginia. We will see each other in mid-August, once the moving company picks up our stuff to trek it out to where I am.

Needless to say, being apart like this hasn’t been easy. The tenor of my texts to her illustrates this. Here’s one example: “I miss you like a blue sky misses the sun during a gray day.”

So, how does all of this apply to the Huntington’s disease (HD) community? Although I try to live in the present moment, sometimes I project into the future. When that occurs, I imagine missing Jill.

If her illness were a movie, we both know how it would end.

The hero doesn’t overcome great odds and win. Instead, the villain, HD, smashes my gene-positive wife with the thunderous force of Thor’s hammer, causing great suffering. She will be unable to eat. She told me she doesn’t want to be put on a feeding tube. She will lose a radical amount of weight. Her brain will not be as sharp. She will retreat inward because reality will not be the same for her as it is now.

And then, as is often the case with gene-positive folks, HD will cause her to die way younger than if she didn’t have it. And when that occurs, the devastation of HD will continue because I will miss her. I will miss her like the world would miss oxygen if oxygen were suddenly sucked from the universe.

If all this sounds depressing, it is, and yet, I have learned a lesson during this time apart. It’s a simple one, but it’s worth sharing, as I know many people who read this are in the same boat as I am, wondering about the future without the one they love.

Here’s the lesson: Sadness about the future is normal and understandable, but it saps our energy and distracts us from creating good memories in the present.

I’ve been practicing accepting and riding the waves of sadness in missing her, but not lingering or dwelling there. Instead, I have learned to carve a path that may start with melancholic thoughts, but then within minutes segues into the joy of living life fully.

And to live fully means knowing that all I say and do in my relationship with Jill — trying my best to share my heart with her and listening to hers — reveals our love for each other. Our love is the best soundtrack on the market because it’s our lived reality, not something from someone else’s imagination.

In short, it’s a hit soundtrack because it’s ours, and it will never die.

Ultimately, knowing that I’m writing the soundtrack to our lives, and not just being a passive listener to someone else’s is what inspires me to overcome any and all sad thoughts. It causes my heart to explode with acceptance and peace, because no song is as good as the song you write and sing with the one you love.

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