Expanding our World to Cope with ALS

September 19, 2017, by Kristin Neva

Someone recently asked me how I cope. “Prayer? Devotions?”

I think she was expecting a more spiritual answer. But I’ve found three basic things go a long way to keeping me sane.

First, exercise. Thirty minutes on the elliptical machine does wonders for my back, knees, and mood.

Second is sleep. We hire help to turn Todd at night. It’s necessary for his health. It’s necessary for my health.

And sleep enables the third method of coping — expansion.

In many ways, disease and disability shrink our world. We can’t have the adventures we imagined—hiking, camping, or vacationing with our kids. So our big annual event is the Houghton County Fair.

But even the fair took a toll on Todd this year. He went one day, and then needed to rest the whole next. He is most comfortable in his climate-controlled office, where he feels most independent on the computer.

And that is where our world has most expanded.

We’ve learned new skills in the last few years.

Todd has learned to draw with his HeadMouse. He makes graphics for our church. He helps me with my writing.

I’ve learned the craft of writing, having published the Copper Island Novels, and I’ve become comfortable speaking to groups. And I’ve developed a sales pitch selling the books and hand-tied wreaths at craft fairs.

Now we’ve started a couple YouTube channels. On the ALS 411, I talk about tips and tricks for disabled living. The things we’ve learned over the last seven years.

And since I’ve long had a passion for teaching kids to read, ever since I coordinated a tutoring program at the Milwaukee rescue mission, I started a channel to teach phonemic awareness to preschoolers, kindergartners, and struggling readers.

Our whole family has been helping with Time with Miss Kris. Sara and Isaac help brainstorm content, and they work the lights and camera under Todd’s direction. Todd has learned to edit videos, and we’re going to produce one video a week, posting them on Tuesdays.

The dream is that between the novels, wreath making, and YouTube, I would supplement our income enough to pay for sleep without having to rely so much on the generous support of our friends and family. (Thank you, by the way, to those who contributed to our caregiving fund. And thank you to those who’ve volunteered.)

But even if my business pursuits aren’t so lucrative, it’s good for our spirits to expand our world.

PS Check out the sample videos below. Like and subscribe, too.

2 thoughts on “Expanding our World to Cope with ALS

  1. Jill

    Oh I love Miss Kris! What a sweet letter Tt learning video! And I love that the whole family is involved!
    The video has a calmness much like Mr. Rogers. I think viewers will really appreciate that balance in comparison to the crazy amped-up video offerings to kids today.
    May God bless these sweet clips with much good fruit.
    *the tadpoles were cool to see, too. 👍🙂

    Reply

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