Monthly Archives: August 2015

Be Careful What You’re Thankful For

August 11, 2015, by Kristin Neva

IMG_2779We’ve had a few rough days. As Todd’s health declines, our old method of transferring him works only some of the time—when his feet aren’t too swollen. I had a couple rough nights in a row, getting up in the middle of the night to help Todd get comfortable. I was on edge—monthly hormone fluctuations and sleep deprivation don’t contribute to emotional stability. Both nights, I wasn’t able to fall back asleep, and I lay in bed crying and feeling forsaken. I prayed for comfort that did not come.

I tire of praying. Todd and I continue to pray for his healing every night before bed. I just did the math. We have been at this for over five years. That means we have prayed that God would heal Todd more than 1,825 times.

At night, when I’m tired and want to sleep but need to help my dear husband, I silently count as an alternative to crying or screaming. 1, 2, 3, 4…. I count to distract myself.

Sunday’s sermon on suffering also had me silently counting so I wouldn’t break down in tears. I lost it during the closing hymn, It is Well with my Soul. I headed to the bathroom and cried because it is not well with my soul.

Then, I walked downstairs to get my guitar. Two of my friends saw my tear-stained face. They listened to me talk about the difficult last few days, empathized with me, and prayed for me. I felt better.

I told them about my nighttime counting. One of my friends encouraged me to instead pray, “Thank you for my hands.” I might not feel thankful, but I can choose an attitude of gratitude that I have the strength to care for my beloved. I grudgingly agreed to try it.

That night as I was tiredly putting Todd to bed, I silently prayed gratitude and found that it did improve my mental health. When I woke up with Todd in the middle of the night, I again prayed, “Thank you for my hands.” It was better than counting the seconds until I could go back to sleep.

The next morning, I woke with shooting pain in my right arm. I laughed at the bitter irony. I finally thank God for my hands, then, wake with one unusable. Who am I? Job? Is this a test? Will she curse God and die? What the heck?

Shooting pain in my arm continues to flare up with slight movements like raising my right hand to my ear or using that hand to roll Todd onto the sling. I have a chiropractic appointment and a massage at the end of the week. Until then, I am down to one good arm for certain tasks.

This morning, cuddling up next to Todd, I screamed in pain when I lay on my right shoulder. I managed to get him in the sling and in his wheelchair using mostly my left arm. As I lowered him onto the toilet I said, “I am thankful for our overhead lift. I couldn’t do this one-handed with a Hoyer lift.”

“Be careful what you’re thankful for,” he said.

Everything we have can and will be taken, except for “an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you.” (1 Peter 1:4)

I am an American Christian and have been a part of a culture that consumes practical results-oriented teaching: 6 Steps to a Happy Marriage and 5 Ways to Raise Great Kids Who Love Jesus. I wish I could find 4 Steps to Overcome Grief and Emotional Pain. I pray, read the Bible, exercise, and practice gratitude. Four things. I should be able to overcome my sorrow and write a New York Times bestseller: How to be a Super-Christian in Times of Crisis. I long for a formula.

I’m increasingly aware and afraid that there is only one formula: death.

John 12:24-26:

Truly, truly, I say to you, unless a grain of wheat falls into the earth and dies, it remains alone; but if it dies, it bears much fruit. He who loves his life loses it, and he who hates his life in this world will keep it to life eternal. If anyone serves Me, he must follow Me; and where I am, there My servant will be also; if anyone serves Me, the Father will honor him.

The message of Christianity is the message of the cross—a message of life through death. Suffering. Sorrow. A death to self, desires, dreams. Servanthood.

But, one day, resurrection.

2 Corinthians 4:16-18:

Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison. While we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

God’s Gift of Ignorance

August 5, 2015, by Todd Neva

IMG_20150701_183235I thought my days of eating at The Fitz were over, but I keep finding creative ways to overcome obstacles. In this case, Kristin’s brothers, when they were up visiting from Texas, devised a platform system to get me over a step into the dining room of the 1957 beach-side inn and restaurant.

Kristin helped me into the building through the kitchen, while Steve and Nate set up the platform and ramps. I rolled up onto the plywood-topped pallet, carefully pivoted on the three-and-half-foot square deck, then drove into the dining room. It was worth the hassle for the best ribs in the Midwest.

I made it into Fitzgerald’s one more time, but I knew it may be my last. The pallet’s too heavy for Kristin to handle on her own. I took in the 180° view of Lake Superior with the sliver of Isle Royale 45 miles away on the horizon.

I savored every rib I could stuff into my stomach, which has shrunk — at least on the inside — to suit my reduced caloric requirements of being nearly motionless. The ribs I couldn’t eat I brought home for our almost-six-year-old Isaac. He was quite disappointed that he didn’t get to go.

A month later for Kristin’s birthday, we had yet another chance to go with the help of her parents. Lani helped me through the kitchen while Dave and Kristin set up the platform and ramps. Again, it was worth the hassle, and Isaac loved his bacon-wrapped filet mignon.

“When I grow up, we can take dad to The Fitz and won’t need anybody’s help,” Isaac said after dinner.

I delighted in his hope for the future, even though I knew how improbable it would be for me to eat at The Fitz when Isaac’s an adult. I’ll be eating from a feeding tube, if I’m even alive.

Isaac’s always thinking about me in his Lego designs and plans for the future. He builds Lego airplanes with accessible ramps. He plans to build a house with a basement, but with an elevator “so dad can visit.”

We’re honest with him and Sara about my health and what will happen to me. We talk of other pALS who’ve died, some shortly after diagnosis. They also know that some pALS live a long time, and that we don’t need to worry until breathing gets difficult.

In Heavy, Kristin writes:

In the first session, I described my overwhelming fear. The counselor explained worry affects us physically: “God hasn’t designed us to worry about the future, but to live in God’s grace for today.” … We aren’t designed to know the future, to have a probable life expectancy. In our case, modern medicine’s given us that. This disease isn’t like many others. With many other diseases, we’d have hope, at least in the beginning, that perhaps we could beat it. With ALS, there’s no treatment and no cure. We know how this is going to end. A hundred years ago, we wouldn’t have had this prognosis. Todd would have weak arms, but his probable future wouldn’t be mapped out. But we know his future, so we do need to plan as best we can—just not obsess about it.

I’d go a step further beyond saying we’re not designed to know the future. I’d say ignorance is a gift. God gave a gift of innocence to Adam and Eve, but they chose to disobey him and eat from the Tree of Knowledge of Good and Evil.

I don’t want to know too much. People asked if I’ve read Tuesdays with Morrie. No. I’m living it, so I don’t want to read it. Some find comfort in our book, Heavy, and I’m glad, but others like me prefer not to even think about it.

I’m focused on today. I’m five years into a disease that cuts most down quicker than they can adapt. I cherish every day and what I can do, such as help Kristin edit her second novel.

Yesterday, after our usual method of transferring me to the toilet failed, Kristin stuck out her chin and squeezed her eyes to hold back tears.

“What’s wrong, Buttercup, the edits weren’t too bad.”

She laughed her sorrow out.

I couldn’t imagine what else she could’ve been upset about. I’m already living on borrowed time, and we had an opportunity yesterday to find another creative way to overcome an obstacle.