The Many Challenges of Getting Out

Normally, we live much of our life at home. My husband, Todd, has ALS and is paralyzed. He spends his time in his wheelchair set up at his computer, and I can’t go far in case he needs help. Our traveling days are over, and we can’t visit most people in their homes because they are inaccessible to Todd in his 400-pound power wheelchair. But we had a couple fun events last weekend that were doable.

Our friends held their daughter’s graduation party in their yard, and the weather was warm. Our son was eager to get to the party. He is good friends with the graduate’s younger siblings, and they had told him there was going to be a bounce house.

I got myself and Todd ready to go, and as I signed a card, my son asked, “Why’s it taking so long?”

“Because I have to do everything,” I said.

We finally got Todd loaded in the van and left.

Todd’s neck is so weak that bumps in our driveway and on the country roads cause his head to bounce around like a bobblehead doll. He doesn’t like to wear a neck brace, so I drove slowly and carefully, cringing whenever I saw his head bounce.

At the party, the tables were set up not far from the driveway, but the ground was too uneven for Todd to be able to drive the wheelchair himself using his head array. I used the attendant control and parked him at the closest table with other guests.

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I went to get food, and when I got back, Todd was sitting lopsided in his wheelchair. He had me push his shoulders over so he was a little more level.

It’s getting harder to get out of the house, but the alternative is being stuck and bored at home. We are usually pretty isolated, so it was nice to engage in conversation even though I’m sometimes reminded of what we’ve lost.

Most conversation centers around what’s new in people’s lives. What we’ve been up to recently has been getting Todd through a bad cold — not as fun as sharing vacation stories or as interesting as new business ventures. I can relate to others with normal parental enthusiasm when we talk about the activities our kids are doing and how much they have grown up, but our life with ALS is foreign to most people.

The sun descended behind the tree line, and the weather cooled. We started to leave, because Todd gets chilled easily. We chatted with another couple on our way out — until Todd’s teeth chattered from the cold.

“I forget how disabled I am,” Todd said as I loaded him into the back of the van.

Life is much easier for Todd in his climate-controlled office using adaptive equipment to navigate his computer. When we’re out in the elements, the extent of the disease progression becomes glaringly obvious.

We attended my cousin’s wedding reception the next day.

After the jostling Todd took the day before, he asked me to put his foam headrest on his wheelchair for the drive over there, and he wanted me to try strapping his head down. But after only a few seconds, he told me to take it off. He felt claustrophobic with his head pinned back.

Todd’s neck fared better in our driveway and for most of the way there, because even when his head bounced around, it was against soft foam. But the final half-mile was rough when we turned off the highway onto a gravel road, following balloons and hand-written bright green signs directing us to the Mule Barn — an old Jacobsville sandstone building fitted with a new roof and floor. Balloons and white Christmas lights were strung along exposed beams, and a DJ played country music from the back of the hall. It was a cool venue.

As we were visiting with other relatives, I was again reminded of how far Todd’s ALS has progressed. Todd couldn’t raise his voice above the buzz of background conversation and music. I had to be his megaphone, repeating what he said. His voice became increasingly weak, and I had to lean in close to hear him. After a while, he quit trying to talk at all.

We stayed for dinner, and then decided to head home because Todd was exhausted.

My cousin cleared the crowd so I could back directly up to the door. He thanked us for coming.

“I wouldn’t have missed it,” Todd said. “I’m sorry I can’t stay, but I have limited endurance. My life is so easy at home, I sometimes forget how weak I am.”

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