Like the Hulk, my wife sometimes struggles to hold it together
Because of Huntington's, it's easy for her frustration to boil over
When I was a child, I never missed an episode of the television series “The Incredible Hulk.” I was fascinated by Bruce Banner’s struggle — how he tried to control the monster inside him as he turned green, his muscles bulging out of his clothes; how he fought to hold it together and stay himself, even as something powerful and unpredictable threatened to take over.
I never imagined that, years later, I’d see that same battle play out in my life with my wife, Jill.
As regular readers of this column know, Jill has Huntington’s disease. It’s a cruel, unpredictable illness — one that makes her world feel overwhelming at times. I see her fight to keep her balance, to manage her emotions, to hold on to herself when everything around her feels like too much.
When noise can hurt
On a recent weekend, we took a day trip to Georgetown, Washington, D.C. We wandered the cobblestone streets, window-shopped, and eventually, for lunch, ducked into a small restaurant that had countertops along the walls. It was crowded, but we found a space by the window at the front of the restaurant and waited for our order.
It was quiet — at least until a man, after placing his order, began talking on his phone. His voice filled the room, drowning out every other sound. He stood near our seats and bumped into Jill’s more than once.
I could see her hands start to tremble and her jaw clench. The overstimulation — the noise, the invasion of her space — was piling up. Finally, she asked the man if he could keep his voice down. He got louder, moving even closer to Jill, his voice booming right over her.
I watched her struggle. I saw the battle on her face: the effort to keep calm, to hold back the frustration and fear that come with being pushed past your limits, especially when your body and mind already feel like a battleground.
After I brought our order back to where we were sitting, I asked her to switch seats with me so I could be between her and the man. Then I started coughing really obnoxiously to spur him to move away from our area.
At first, he stepped away, but then he moved back to within several feet of our seats, still talking loudly on the phone. That was when Jill finally snapped, her voice sharper than she wanted as she loudly told him how rude he was and that no one wanted to hear his phone conversation.
He looked at her as if she were the problem.
Then she said to me, “Carlos, let’s go and eat somewhere else!”
I picked up my small pizza, she picked up her cheeseburger and fries, and we left.
Afterward, Jill was ashamed by the stares she’d received from the other people in the restaurant. She isn’t the Hulk. She’s not a monster. She’s a woman living with Huntington’s, doing her best to hold it together in a world that sometimes refuses to meet her halfway.
We expect people to manage themselves, to stay calm no matter what. But we don’t see the invisible burdens they carry, the thousand tiny irritations and slights that pile up until they can’t hold it together anymore. And when they finally break, we judge them for it.
Jill’s story is a reminder that we all have our breaking points. Maybe, if we looked a little closer, we’d see the struggle and offer a little more kindness and understanding, even when someone turns green with anger.
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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