When You’re Unequipped for Difficulty

“We were ill-prepared and unequipped for the hike,” I told my husband, Todd, after returning home. The kids and I went to see Douglass Houghton Falls in Michigan’s Upper Peninsula with my friend, who was visiting from out of town. Todd stayed home because he has ALS and is paralyzed.

I don’t leave him at home alone for long periods of time, so we timed our adventure for when he had a shower aide. There was plenty of time to drive there and walk the short distance to the top of the falls, but the kids and I had already been a few times, so my son suggested we see the bottom of the falls.

I had been there as a kid, but for years it was closed to the public. The land was recently purchased by the Michigan Department of Natural Resources, and although it isn’t officially open, the falls can be viewed from the bottom by hiking three-quarters of a mile along a creek. The trail isn’t marked, but I had saved directions on my phone after learning how to get there from my park ranger friend.

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We walked down an old railroad bed that had been repurposed into an all-terrain vehicle trail until we could see the creek, which passed through a culvert under us. I threw the water bottles that I was carrying in a bag down the steep embankment, and I used both hands to hold on to roots as I carefully scooted down. My daughter slid down on her butt.

We followed a narrow trail along the creek. We climbed over downed trees. At one point, my foot slid, and I fell and bumped my knee, tearing a hole in my capris. My friend scraped her knee in the same place.

A challenging hiking trail. (Photo by Kristin Neva)

It was slow going on the uneven trail in 90-degree weather. We didn’t have proper footwear. A walking stick would have been helpful, and a backpack for my water. We didn’t know how much farther we’d have to go, and I had limited time to be away from Todd. And so, we turned around without reaching our destination.

I felt a mixture of relief and disappointment as we headed back.

The people I know who’ve made it to the bottom of Douglass Houghton Falls are more experienced hikers. But even my park ranger friend, who hikes many miles, said it’s a hard trail.

I could’ve done it if I had been better prepared.

I think about all the ways people in the ALS community are ill-prepared and unequipped for ALS.

ALS is a hard hike physically, emotionally, and spiritually for both the person with the disease and the caregiving spouse. Some handle it better than others.

It’s a scramble to find help. Many families with ALS are financially ruined after home renovations and hiring aides and nurses, and caregiving spouses become physically exhausted when they don’t have enough support.

Some with the disease withdraw or become angry due to physical pain, depression, or cognitive difficulties that sometimes accompany ALS, and that exponentially increases the stress on the caregiver.

Sometimes people just can’t go on. I wish no one had to deal with ALS, but until there’s a cure, those living with this disease need more resources. We need to be better equipped.

I’ve watched other spouses express a mixture of relief and sadness when they turn the care of their loved one over to a nursing home.

We didn’t make it to the bottom of the falls, but I was still glad to be on an adventure with the kids and my friend. We sampled wild berries along the way, and that encouraged us to keep going for a little while longer. It was a difficult hike, but we found beauty in the journey, such as a tree we saw growing over float copper.

Resilience. (Photo by Kristin Neva)

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