Guest Voice: Confronting fear when living with Huntington’s disease

Fear. Everyone has it. Everyone has that something they’re afraid of.

I have many — of heights, of what tomorrow holds, all of it. But when you’re in a Huntington’s disease (HD) family, fear feels amplified. Ever since we got my husband Nathan’s HD diagnosis 10 years ago, it has been a constant companion.

There’s the fear of tomorrow and what it will bring and what we will lose. I understand that no one is promised tomorrow, but when you’re living with a terminal illness, you can’t expect normal.

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I worry about the future for our HD-positive daughter from Nathan’s first marriage, and that our son could someday find out that he’s also inherited the disease.

When the kids were small and one of them would stumble, thoughts of HD would rear their ugly head. My first thought would be, “Is this the beginning of HD?” I prayed that it wasn’t.

Regret is a concern I’ve always had, but, yet again, it’s amplified by HD. “Did I do enough for Nathan? Did I do it right?” I’ve asked myself all of these questions, and believe me, there are many.

But the biggest fear, which surfaces during the holidays and birthdays, is whether this could be our last one with Nathan. So I go as far as our finances will take us. I think outside the box with gifts.

Handicap-accessible cowboy boots are an example of that. Nathan has always loved his boots. Typically, when he dressed up, he’d wear cowboy boots instead of dress shoes. But Huntington’s made boots a thing of the past. There was no way we could get them on or off, so we went with zip-up sneakers — until one of the HD organizations put out an end-of-life packet.

A hard conversation and a perfect gift

We should’ve had the conversation long ago, but we were afraid to talk about the elephant in the room until that packet ignited my need to know what his final wishes are.

It was easier to start with myself, so I used the packet to write down what I wanted before finding out what Nathan wanted. His answer was to be buried in his suit and the cowboy boots that had been given away long ago.

So, in typical me fashion, I researched and researched until I found accessible boots to give him. I wanted him to enjoy them now instead of having them later. The zipper is in the back, and the boots can be hard to put on due to his inability to hold his leg up, but he loves them.

Nathan knows that I’ll typically try to move heaven and earth to find whatever he wants. Thankfully, he doesn’t ask for the moon too often. And when he does, I make a joke about it.

Laughing our way through it

We were watching an old episode of the British TV series “Top Gear” when I told Nathan that if we must watch a show about cars, I needed something pretty to look at, so the celebrity host fulfilled that. While watching, Nathan decided he wanted a Porsche.

“Do you have Porsche money lying around somewhere I don’t know about?” I asked. Then I told him that his power chair is his Porsche. To this day, that’s what we call it.

We do most things with this type of humor. The worry is always there, but it’s masked by humor.

Fear is a huge thing, and sometimes it’s very hard to put aside. But somehow, we manage to do that. We shake it off with sick, twisted humor. I won’t lie; there are days when it feels so big that I can’t do that, but somehow, I do.

Then I realize that fear can sometimes be OK. I won’t say it’s good, because it’s not. But it makes me realize that I appreciate more what we have in the present moment. I always tell people in the HD community to plan for the future, but live in the now. And when I have those moments of fear, I come out realizing that our future, HD or not, is never promised.

So, yes, I have a lot of fears, but I have a lot of other things, too. I have hope for our children, love that I never thought possible, and so much more.

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