Accepting help from my loved one with HD is a lesson in partnership
The fundamental truth of our marriage is that we're stronger together than apart
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When my wife, Jill, recently offered to help me with work, my first instinct was to say no.
As a communications director with no staff, I’m used to doing everything myself. However, there’s a price to pay, as a typical workweek is usually about 55 hours and filled with meetings to attend, emails to respond to, documents to proofread, social media posts to share, a website to constantly update, and deadlines that always seem to arrive too soon. It’s exhausting, but it’s my job — and my responsibility.
So when Jill said she could help with some of the smaller tasks — the things that eat up my time but don’t require any specific expertise — I hesitated. She immediately noticed. “Are you worried I can’t do these things because I have [Huntington’s disease]?” she asked.
The question hit me hard. I hate that she even had to ask it.
What married couples do
As regular readers of this column know, Jill is gene-positive for Huntington’s disease (HD), a neurodegenerative terminal illness that affects much of a person’s ability to work. The involuntary movements make typing difficult, and the cognitive changes can affect concentration, organization, and processing speed. Memory becomes unreliable. Multitasking grows challenging. For someone like Jill who once worked at a school and dealt with dozens of teachers and navigated complex parent communications with ease, watching HD gradually chip away at those capabilities in her is heartbreaking.
But that wasn’t why I hesitated.
“It’s not that,” I said. “It’s just that this is my work. I don’t want to burden you with it. It’s not fair to ask you to take on some of my responsibilities.”
Jill chuckled.
“Do you remember all the times you helped me when I was working?” she asked.
Of course I did. She would call me whenever she needed to talk to a Spanish-speaking parent. I’d drop what I was doing and handle the conversation. When she needed documents proofread with quick turnarounds, I’d work through them at lightning speed. She used to joke that my brain was a supercomputer, processing corrections faster than a speeding train.
I helped because that’s what married couples do for each other. I never thought of it as a burden. I thought of it as supporting someone I love.
“You never hesitated,” Jill said. “This is no different. Let me help you now.”
She was right, of course. Marriage isn’t a one-way street. The help I gave her wasn’t a burden; it was a partnership. Refusing her help now wasn’t protecting her; it was denying her the same love I had shown her each time she needed me for something.
Living with HD doesn’t mean Jill has stopped being capable or valuable. It just means some things take longer. Some tasks are more challenging, and we’ve had to adjust our expectations accordingly. But it doesn’t mean she has nothing to offer. It doesn’t mean she wants to sit on the sidelines while I exhaust myself trying to do everything alone. I promised to ask for help the next time I needed it.
“I know I’ll be able to help,” she said. “And who knows? Maybe I’ll do some things better than you.”
Before I could respond, she added with a smile, “Remember, women can do everything a man can do backward and in heels.”
Talk about a truth bomb.
HD has changed many things in our lives, but it hasn’t changed the fundamental truth of our marriage: We’re stronger together than apart. Sometimes the hardest lesson isn’t learning to provide help, but learning to receive it, especially when pride or fear tries to convince us that accepting support somehow diminishes us.
It doesn’t. If anything, it reminds us that love isn’t about protecting each other from burdens. It’s about sharing them.
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.
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