Monthly Archives: February 2014

Praying and Waiting

February 28, 2014 by Kristin Neva

I keep going back to the lessons I learned during the first year after Todd’s diagnosis. During that year, I struggled to understand why God wasn’t bringing a buyer for our house so we could move forward and build a handicap-accessible home. We kept praying and waiting. Finally, the house sold and, looking back, we can now see that it happened at just the right time.

Two years later, we are back to praying and waiting. The handicap van that was donated to us proved not to be road worthy, so we are on the lookout for a used all-wheel-drive handicap-accessible van with a raised roof. We passed on purchasing a front-wheel-drive minivan with a lowered floor thinking it would no good in the snow, considering that our current minivan barely scrapes over the snow berm the plow leaves at the end of our driveway. So we pray and we wait for a van we can afford that will be good in the snow.

Todd fell in the garage today.

The dog knocked him over. Todd wasn’t hurt and I was able to use the Hoyer lift to get him up.

“I thought I would be using a wheelchair by the time I was this unsteady on my feet,” he said.

We have a wheelchair, but no way to transport it.

In our book Heavy, I share a journal in which I contemplate the idea that God doesn’t give us what we want; He gives us what we need. I was mulling this over as it was a lesson that Todd and I were scheduled to teach the preschoolers in children’s church.

It was a timely lesson then as we waited for our house to sell. And it is a good lesson to remember now as we wait for a van to buy. Todd needs to be able to go places. Right? That’s what we need. And we need it now, because he is getting so unsteady on his feet.

My conclusion in Heavy, as I waited and wondered why God was not providing for my perceived need for him to sell our house immediately, is the same conclusion I make today as I wait for God to provide a van: Maybe our only real need is having God and His presence in our lives.

Disability in Marriage

February 14, 2014, by Todd Neva

kristinvdayLarissa met Ian in college in 2005. They dated and quickly fell in love. A year later they were planning to get engaged when Ian was in a car accident. With a brain injury, disabled, Ian wasn’t able to propose. Larissa stuck with him, anyhow, loving him in sickness even before the vows could be made. Four years later, they made official what was already in their hearts, and with the approval of a judge that it was in Ian’s best interests, they were married in 2010.

Ken met Joni at church in 1980. Ken knew of Joni, and he befriended her. She was a celebrity of sorts, having written a book and starred in a movie about her life. She had been a quadriplegic since 1967 when she was in a diving accident at age 17. They became friends, and then fell in love. Ken saw Joni for who she was: a courageous, compassionate Christ follower. Joni saw Ken for who he was: a man more concerned about giving of himself than taking for himself. They were married in 1982.

On this Valentine’s Day, my heart is warmed by these stories. Cupid’s arrow pierced the hearts of people who had every reason to put up a shield of self-interest. I have the greatest respect for these people, Larissa and Ken, for seeing a disabled person as a full person, and then willingly choosing to love and care for that person.

Kristin met me in 2002. We dated, fell in love, and got engaged. When we married in 2003, I was healthy. We made our vows to love “in sickness,” never imagining I would end up disabled.

Disability changes marriage. Illness, job loss, or the death of a child can change marriage. Traumatic events can draw people closer or they can tear them apart.

I still cannot get out of my mind a conversation I had with a male colleague ten years ago.

“You’re getting a divorce?” I confirmed, not sure I heard it correctly.

“Yeah, that’s why I can’t be at the meeting. I need to be in Oklahoma next week to sign papers.”

“I’m so sorry.”

“It’s okay. I’m the one who wants a divorce. She had a stroke and is in a nursing home.”

“Oh.”

I never looked at him the same way again.

Contrast that to my love, Kristin. She stood beside me when I got sick and there was never a doubt in my mind that she would be with me to the end. And in some ways my disability has drawn Kristin and me closer together.

Our marriage is hard, make no mistake about it, but it is also sweet. We have a lot of time together, and I know her better now than I ever have. Rather than us each having our own lives, and then sharing stories at the end of the day, we are part of each other’s daily lives. We have more inside jokes. We laugh together.

Our marriage is different now. I don’t rub Kristin’s back. I don’t help clean the house. I don’t do house projects. Although I can make threats when Isaac disobeys, Kristin needs to physically put him in timeout. Kristin carries the load of managing the house, and she helps me bathe and get dressed. It’s humbling.

Yesterday, I asked Kristin to set up the ramps and drive my electric wheelchair into the back of the minivan. I wanted my electric wheelchair at church that night for a few hours. It’s hard to get in and out of chairs, and I want to be self-directed. I’m nervous walking, afraid that I will fall.

At the risk of being late, kids already in the van, me sitting in my electric wheelchair in the garage, waiting on Kristin as she tried to extend the ramps, I was already anxious. The ramps were stuck; Kristin couldn’t get them set up. I was frustrated. “Ugggh!” a groan arose from deep inside me. I tried to find my happy place, “It can’t be helped. Let’s go.”

Kristin drove the wheelchair into the house and then returned to help me into the passenger seat. She got in the van. “Should I get your manual wheelchair?”

I griped, “I hate—hate, hate, hate—my manual wheelchair!” I wasn’t all the way back into my happy place yet.

Kristin looked crushed.

“You shouldn’t say hate, Dad,” Isaac reminded me of the lessons we taught him. “Say you don’t like your manual wheelchair.”

“You’re right, Isaac. Thanks for reminding me. Kristin, I’m not mad at you. I’m just frustrated with the situation.”

Sitting quiet until we were a few miles down the road, I called back to the kids, “I’m sorry I got so upset. Even dads get frustrated sometimes.”

There is so much out of my control. Give it to God. All I can choose is my response. 

We had a nice conversation on the way to church. I had productive meetings and Kristin and the kids had a good time at AWANA club. We had lots to talk about when we got home. It was a good night.

The judge who approved Larissa and Ian’s marriage license said it best, “You two exemplify what love is all about. I believe that marriage will not only benefit you both but our community, and hope that everyone in this city could see your love for one another.”

Love is messy. Marriage is hard work as we make day-in and day-out decisions to connect with, care for, and affirm one another. But it’s worth it and it’s good.

 

Happy Valentine’s Day,

Todd

 

PS

You can read more about Larissa and Ian here and here.

You can read more about Joni and Ken in their book, Joni and Ken: An Untold Love Story, Zondervan, 2013.

Bowling

February 7, 2014 by Kristin Neva

IMG_5481-001Todd bowling at Sara’s 8th birthday celebration last weekend reminded me of what he wrote in our memoir Heavy: “I have time to build memories, to live well. My children will see a man who lived to his last breathe. Though I have limited physical strength, I can demonstrate a mental toughness. So much of life is out of my control, except for my attitude. Shouldn’t this be how we all live, whether we have six years or sixty? I have decided to live well.”

Heavy Now Available on Amazon.com!

Purchase Heavy on Amazon.com

February 6, 2014, by Todd Neva

“We read to know we are not alone,” the character, C. S. Lewis, said in the movie Shadowlands.

In June of 2010, I was diagnosed with ALS. Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a progressive neuro-muscular disease that results in total paralysis and eventual death, usually in three to five years. In our grief, my wife Kristin and I were comforted by books written by others who face grief and disability.

In addition to reading, we wrote of our thoughts, feelings, and experiences during the year after the diagnosis. Kristin wrote in her journal and we both blogged.

Our writings have found their way onto the pages of a book, Heavy, Finding Meaning after a Terminal Diagnosis, A Young Family’s First Year with ALS. Many other books tackle the topic of facing a terminal disease retrospectively, often from the spouse’s perspective, or from the patient after some time has passed. Heavy, instead, follows the gut-wrenching first year after the diagnosis. Our story is told from my perspective with journal entries by Kristin at the end of each chapter.

We read that, when facing ALS, it often takes a year for some sense of (new) normalcy to return. We couldn’t write this book today; it could only have been written when the emotions were raw. And it is our hope that our story will help you—in your suffering, in your grief—to know you are not alone.

Heavy is now available on Amazon.com in paperback and on Kindle.

Please check it out, and if you find it encouraging, we would appreciate if you would write a review.

Todd