The Problem of Suffering

January 23, 2017, by Todd Neva

The following is a transcript from the first of three Good News You Can Use radio spots, which aired January 16-18, 2017, on WMPL 920 AM.  I spoke on the topic The God of Suffering.

Mitch:

Todd Neva is a lay preacher at Evangel Baptist Church. Nearly 7 years ago, he was diagnosed with ALS, a terminal disease that causes total paralysis. He lives in the Hancock area with his wife and two children. He and his wife Kristin authored the book Heavy, A Young Family’s First Year with ALS, and they blog at Nevastory.com. Their speaking and blogging ministry focuses on the topics of grief, suffering, and finding meaning after a terminal diagnosis. As a complete quadriplegic, he is uniquely qualified to discuss the topic for today: God of Suffering.

Todd:

Thanks, Mitch, I’m so glad to have the opportunity to share what’s on my heart. Today and over the next two days, I’m going to talk about The Problem of Suffering, insufferable Christians, and then The Purpose of Suffering.

For the first topic, The Problem of Suffering, I really mean the problem with reconciling suffering to an all loving, powerful God.

“With all the evil and suffering in the world, I just don’t see how God could exist.”

That sentiment has been expressed so many times by so many people, I don’t even need to attribute it. I’ve heard it said. You’ve heard it said. You may have even said it yourself. It sure has crossed my mind.

This is really a challenge to the Judeo-Christian God. Suffering does not surprise people who adhere to other religions —  their gods are vengeful and merciless, or there’s karma that requires payback, even for misdeeds in prior lives.

But Jews and Christians have to deal with a bit of a paradox — an all powerful and loving God who allows suffering.

The Apostle John tells us that God is Love, and love comes from God. God so loved the world that he gave his only Son. The Apostle Paul calls God the Father of mercies and God of all comfort. We’re told that God is all-powerful, sovereign. And Jesus encourages us to pray because our Father in Heaven gives good gifts to those who ask him.

Some people cannot reconcile those beliefs with the present condition of suffering. The challenge would be more accurately phrased: “God couldn’t possibly be all loving if he allows suffering, or if he is all loving, then he’s certainly not all-powerful.”

The typical response to this is that God is all loving, but he’s also just. Everything was perfect until Adam and Eve sinned, and then death entered the world. That is true, but it rings hollow for many people. If somebody is questioning the existence of God, it gets a bit deep in the weeds to talk about the Doctrine of Original Sin.

And if somebody is truly questioning the existence of God, it might help to first step back and examine if this world, with its order and beauty, could be anything but a work of creation. Prof. John Jaszczak will be here next week to discuss the God of Science, but in the meantime let’s assume that our suffering skeptic has some level of faith, but is just questioning God’s goodness.

I would point out that God created man and woman in his image. This means that humans are spiritual creatures. We differ from animals in that we have souls, and our souls will continue to exist even after our bodies waste away.

God is in the business of creating souls. I’m glad he created mine. By one estimate, there has been over 100 billion people born on this planet.[i] About 7 billion of those are alive today. Maybe he could have allowed the Earth to be populated by the first 20 or 30 billion and then put an end to it all, but he didn’t.

He’s allowed our world to continue with its cycles of life. Many have come, and many have gone, and now we’re here. I’m glad for the time I have. But why is it that some have eighty years and others eight minutes? I can’t answer that. Death never feels right. It always seems untimely. But whether it’s eighty years or eight minutes, it’s a blink in all of eternity.

So there is life and there is death, but couldn’t we just be born, live a charmed life, then die peacefully in our sleep at some appointed age? That’s not how it works. The process is messy.

Some children are born to broken, abusive homes.

There’s birth defects and deformities.

Accidents.

Cancer.

In my case, total paralysis.

Why does life have to be so hard?

In Romans 8, Pastor Paul writes, “18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. 19 For the creation waits with eager longing for the revealing of the sons of God. 20 For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope 21 that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God.”

In other words, yeah, life is hard, but heaven is going to be awesome. But your soul has to be right with God, and God put in place the conditions on this earth so that you would long to be with him.

This is Todd Neva, from Evangel Baptist Church. I’ll be back tomorrow to discuss Insufferable Christians.*

 

* The transcript from Insufferable Christians will be posted at a later date.

[i] http://www.prb.org/Publications/Articles/2002/HowManyPeopleHaveEverLivedonEarth.aspx, as accessed on January 4, 2017.

Some Dreams Don’t Die

November 28, 2016, by Todd Neva

snowcountry-3d-2Kristin wrote about the loss of dreams in Heavy, and she blogged about it here. But not all dreams died.

Since she was a child, she’s wanted to be a writer — an author — and not just an author of a memoir, but an author of the likes whose books she loves to read. Jan Karon. Karen Kingsbury.

Three years ago, she pushed her dream along by participating in National Novel Writing Month. The goal of NaNoWriMo is to crank out 50,000 words without worrying about structure or quality. Just write.

She turned it over to me to evaluate. I read the first chapter and thought she had some legs to the story.

Then I read the second chapter. Oh, boy!

But after three years of hard work — with lots of learning, small victories, setbacks, and reworking and reworking and reworking — she’s produced a piece of art that I dare say borders on literary quality. If literary means hard to read, then it is certainly not that. It is a fast-paced story with enough twists to keep you turning the pages.

Snow Country is not just a romance. (Even her men beta readers loved it.) It’s a story about family and faith. It is sweet, funny, sad (at times), and insightful.

The beautiful cover and typesetting draws the reader onto this fantastical snowy island where the characters are lovably flawed.

You may have heard the phrase, write what you know. Knowing my story of having ALS, you might not be surprised by one of the twists.

Oddly, it might’ve been my paralysis and the need for nearly 24-hour caregiving that helped her dream come true.

She really can’t work outside the home. She must be here for me during the day, so she spends part of it writing. I’m here to help her think through plot lines and to critique her work.

And she was motivated to generate income to help with caregiving. The average pALS spends $250,000 out-of-pocket as a result of this disease for home renovations, equipment, and caregiving. Perhaps still a dream, but we hope Snow Country can help close that gap.

Every book sold pays for almost 15 minutes of nighttime care so I can sleep. And if I sleep, then I don’t torture her by waking her up every hour to turn me.

And who knows, maybe the dream can get even bigger — this can take off and we can be in a position to help others. There’s been some big successes through word-of-mouth.

Would you help us promote it? Order it on Amazon. Buy it for a friend. Read it in book clubs. Tell our story. Share it on Facebook or other social media.

Let’s dream big!

Now on Amazon:

Paperback: http://a.co/dIdQuSJ

Kindle*: http://a.co/ePoYbxE

* Available now for preorder and delivery December 3.

Will be available in other online e-book stores soon.

I’m In! Thank You.

 October 15, 2016, by Todd Neva

img_3247-1What a way to celebrate my 46th birthday.

First, let’s start with recognizing that I made it to 46. Diagnosed at age 39 with ALS, a disease with a 3-5 year life expectancy, I didn’t think I’d get a chance to see my children grow. I was counting the months.

Then months turned into years, and we’ve settled into our handicap accessible home in the Upper Peninsula. Sara is in 5th grade, and Isaac is in 1st. I keep myself busy with various projects, such as doing graphics for our church. We’ve grown roots in this community, and we’re blessed to have the love and support of friends and family here and elsewhere across the country.

ALS is not a disease that one can fight alone. Slowly, month by month, I lost my independence. At some point — it’s hard to pin down an exact date — I became completely dependent on Kristin for my daily needs, but she got a break when she put me to bed.

Starting about a year ago, I lost so much mobility I wasn’t able to reposition myself in bed. I’d sleep for a few hours, then wake up sore and needing to turn. Kristin’s sleep suffered.

And now, I can only sleep for about an hour at a time. This is not sustainable for Kristin to go on night after night without sleep.

Hence the caregivers — a combination of paid and volunteer home health professionals — come in most nights. We try to schedule a helpers to come for a six-hour shift at least five nights a week. They put me to bed and turn me at night so I’m comfortable, but most importantly, they allow Kristin to sleep.

Before deciding to build the addition, we did the math, and we determined that we’d be able to swing an additional mortgage payment. It would be tight, but we didn’t have much of an option. It wasn’t working well to have the caregivers across the house in the living room—and looking to the future, it would not work at all.

A friend encouraged us to do a fundraiser. “Some people really want to help,” she said. We decided to try, and we put out a goal to close the gap between what we were willing to finance and what it would take to complete the addition.

We were absolutely overwhelmed by the support we received. We have enough to finish the addition and also pay down much of the addition mortgage. This will free up more cash on a month-to-month basis to pay for caregiving.

Last Friday, I was finally able to move into the addition. My computer is set up in the corner where I have a view of the field. I have enough space to turn circles. There are extra chairs for folks to meet with me. There is a recliner for caregivers to sit in at night within earshot of me. I don’t need to yell down to the other end of the house when I need help repositioning at night. Kristin and the kids have their privacy at night.

There’s a few more things to do to finish it off — some casing, paint, doors, light, etc. But it’s already functional, and beautiful. A big thank you to my buddy Chris Raasio who oversaw the project. He and his crew do very good work.

And thank you to all of our supporters out there. Thank you to those who helped us build the addition and thank you to those who send funds to pay for night-time caregivers. Your gifts make a difference in the quality of my life, and they reduce the burden on my wife and children.

I am beyond grateful.

Todd

Addition Update 2

August 27, 2016, by Todd Neva

IMG_3200We have shingles, soffits, and windows installed. The siding is on two thirds of the caregiver’s addition, and the rough-in plumbing for the in-floor radiant heat and electrical is done.

We’ve met our $10,000 goal on the Go Fund Me drive, so we’ll be able to get the AC and tile done. And with other donations that came in separately, we’ll be able to make a big impact on the second mortgage. Getting that paid off will free up $388 per month, which would pay for 6 four-hour nights of care.

This is coming at a good time, as sleep is becoming increasingly difficult. I have virtually no movement in bed now, so my joints get stiff and achy, and I can’t sleep much longer than an hour at a time. With night help, I get turned and go back to sleep. Without help, I lie awake for as long as I can until I call for Kristin. It’s a balance between torturing me or Kristin with sleep deprivation.

It will be good to have the caregivers closer, because my diaphragm is getting weaker and it’s becoming more difficult to raise my voice.

IMG_3186By the way, a wife of the deceased pALS donated a cough assist device. I thought it would come in handy when I aspirate, but in trying it out I realized my lungs had been clogged with mucus deep down. It loosened up my lungs, and my breathing is substantially better. It felt like the first time I fully filled my lungs for many months.

A respiratory therapist at Aspirus volunteered his time to show us how to use the device. We could’ve never figured it out on our own, and it could’ve been dangerous if we used it incorrectly. What an amazing community this is.

And our durable equipment manufacturer installed a loaner head array on my wheelchair while the permanent one makes its way through the company’s Medicare approval process. That has been valuable as my arm gets too bound up at times to control my wheelchair with the hand joystick.

I am overwhelmed beyond words by the support we’ve received well beyond our worth. (Well, beyond my worth—Kristin is a gem.)

~ Todd

Addition Update

July 30, 2016, by Todd Neva

IMG_3139The addition is moving along quickly. It’s framed, and we’ll have it weathertight on Monday.

I’ve been overwhelmed by the support, both financially and physically.

My good buddy Chris Raasio, of Raasio Contracting, has been overseeing the work. To save on costs, he’s scrounging some leftover material and worked with a few volunteers who’ve shown up. It’s been like an old-fashioned barnraising.

And I’m blown away with the financial generosity from old friends, new friends, acquaintances, and even strangers. It’s hard to ask for help, and I must admit I am quite cognizant of a number of pALS and cALS who are struggling all the worse — inaccessible houses, poor equipment, lack of sleep, tighter budgets, fewer people to help.

I’d like to believe that it’s all part of the “pay it forward” concept, and that what I’ve given in the past justifies what I’m getting now, or that someday I’ll have a chance to give to someone else. I’m not sure the math works. I think I just have to admit that it is only by grace that I receive beyond my worth.

Well, it is what it is. I’m a plant, so to speak, surviving only by the grace of God and the help of my caregivers. I do more than survive. I enjoy life. My writing. Preaching occasionally. All else that keeps me busy.

Thank you for the gift of life, caregivers and supporters.

Caregiver Addition

Our Caregiver Addition is underway

Our Caregiver Addition is underway.

“On nights like these, I wish I were in heaven, ” Todd said when, at six this morning, he asked me to put him in his chair to end his miserable night in bed.

I was up every hour or two with him, and it was rough for me too.

As the ALS progresses, I’m thankful we have help a few nights a week when caregivers put him to bed and turn him every hour or two. We treasure those nights of sleep.

Thank you to those of you who have sent money that allows us to hire help.

We are aware that as the disease progresses we will need more and more help. I recently spoke with a woman who just lost her husband to this dreaded disease. In his last days, she was up with him every twenty minutes.

Recognizing what lies ahead of us and finding that our current house layout is not meeting today’s needs, we are building a caregiver’s addition — a room right off Todd’s bedroom where a caregiver can sit and read within earshot.

Todd is looking forward to using this space as his office during the day — a quiet place to work on the computer and host visitors, as well as a private space for home health professionals to work on him.

In our recent hot, humid weather, Todd can’t sleep without running his window air-conditioner — but when the addition goes up, we’ll lose his second window, so at that point we’ll be unable to open a window on cooler days. So we would like to install a ductless mini-split in his room and office. He feels better and his feet swell less on hot, humid days when he has air.

We took out a loan that will get the addition up, but to keep the payment affordable, we are short about $10,000 to finish it off. We figured we can add flooring, trim, closet doors, etc., at a later date if needed, but we really would like that air-conditioning system.

Will you be a part of our caregiving team to help Todd be comfortable at night and help me sleep? If we can raise $10,000, we can finish off the addition this summer. Any additional funds will pay down the addition debt or be used for nighttime help.

If you would want to sponsor us with one night of sleep a month, consider giving on a recurring basis. We’ve found that having someone come in from 10:30 to 2:30 or 11:30 to 4:30 works pretty well. The cost is between $60 and $100, depending on how many hours the caregiver stays and whether we can find a CNA/nurse private pay or through an agency.

Our mailing address is P.O. Box 367 Hancock, MI  49930. We have also set up a Go Fund Me site for raising funds for the addition. https://www.gofundme.com/2fux5sc

Thank you for being part of our caregiving team!

Roughing It

July 7, 2016, by Kristin Neva

Fourteen years ago, when Todd and I had just started dating, we drove to the UP with friends to go kayaking. The day ended up being cold and rainy but we carried on, and all five members of our group completed the skills checklist including the wet exit where we flipped our kayaks upside down while strapped in, released the skirts, and got back into the kayaks from the water. Even in wetsuits, we were miserably cold, yet there was satisfaction in persevering.

I know people who take their babies camping, even in the rain. Some couples take their young children on 30-mile hikes. We, however, gravitated toward cushy accommodations—a downtown Chicago hotel, our friends’ Bel Air home, a water park.

Families facing ALS grieve the loss of dreams. Some are large. Some are small. Many of us feel sadness when we see other families’ vacation pictures. We wish we could take those trips with our kids, but most destinations are physically impossible. Travel with severe disability is too difficult.

Last year we made the four-hour trek to Duluth for Todd’s ALS clinic. We had a large room at the Sheraton with an accessible bathroom and a Hoyer lift provided by the hospital. It went pretty well, so this year we made the same trip plus tacked on a three-hour excursion south to Minneapolis to give the kids family vacation memories and visit extended family. And Todd had a chance to catch up with old friends.

Todd’s gradual but continual decline made travel more difficult this year. After letting the kids swim late the first night, we spent an hour in the bathroom wrestling with the lift and sling. Our frustrations boiled over. Eventually, I got Todd into bed, but his feet dangled off the end and he felt suffocated on the soft bed that prevented even the smallest movements. Though he was exhausted, he sucked it up and lay awake most of the night.

The next day at clinic, his blood pressure was elevated. His feet were swollen, and his joints were in pain. (By the way, his breathing is down another 4 points, but still not to the intervention stage.)

Todd dreaded the thought of getting back into that bed, so we ventured out to Trailfitters and purchased camping mattresses. He slept on the floor that night, which worked better, except the Hoyer is not designed to lift somebody off the floor. It was hard on his toes, as I tried to maneuver the clunky device over him to lift him onto his chair.

After his appointment, we had a nice dinner, and then drove up to Todd’s parents the next day where we spent the evening at the lake. The kids swam, and we roasted hot dogs and marshmallows over a bonfire. From there we went to Minneapolis — Mall of America, Auntie’s horse ranch, and the Minnesota Science Museum. Life almost felt normal there for a few hours when Todd wheeled off with Sara to explore exhibits while Isaac and I spent an hour building a ball run with pistons.

Our family sat together (yeah for accessibility) and watched an Imax movie. We experienced the National Parks through the eyes of mountain climbers. And that reminded me. Some people push themselves to their physical limits for fun.

We spent a week in nice hotels, but at this stage of ALS, we were roughing it. It felt as rigorous as kayaking in cold rain.

I asked Todd, “This wasn’t worth it, was it?”

“There were more peaks than valleys,” he said.

I’m glad we did it—Take that, ALS!—but I don’t know if we’ll ever leave home again.

Mr. Mayor

I am Mr. Mayor. Isaac places a Lego minifigure in my useless, supinated palm. I announce, “Hello, Lego City.” (Hear in your mind Robin Williams’s voice from Good Morning, Vietnam.)

Play begins, usually involving some scenario were a bad guy gets away and Mr. Mayor calls the police chief. “A bad guy got away. Help!”

But something was missing, Isaac thought — Mr. Mayor’s chair.

I’ve Lived to See My Son’s Graduation

June 11, 2016, by Todd Neva

IMG_2546In our memoir Heavy, Kristin described a dream she had months following my ALS diagnosis on June 11, 2010. “God called to me and said, ‘Kristin, I have something better for Todd and something good for you and the kids.’ ”

As she tried to wrap her mind around the three-to-five-year prognosis, she wrote:

Heaven really is better. We grieve that Todd will miss out on Sara’s and Isaac’s graduations, weddings, and our grandchildren. It doesn’t seem fair for the kids to grow up without their dad. But then I think, ‘Some people live through those events without joy. What good is that?’ We are living with joy today, in the midst of sorrow.

We’re still living with joy today, and the bonus is that I got to see Isaac’s graduation.

Sure, it was his kindergarten graduation—they didn’t let me graduate until I was eighteen—but it was still pretty cool considering it was two days shy of six years since the diagnosis.

And our kids are growing up with their dad.

Yesterday I was less than masterful at fathering Sara, evoking tears as I made her give up an electronic device. Then I thought, I’m like a normal father with a ten-year-old girl who is mad at him.

I’m normal in many other ways, except I stay home a lot—almost all the time.

But I’m here when they come home from school. I ask about their day.

It’s important to me that they see I’m not idle. If you ask Isaac what I do, he’ll say, “He preaches.” Sure, only once a quarter or so, but he sees me prep for weeks ahead of time.

I fill my day with other projects, too, using a head mouse and voice dictation software to access the computer.

I don’t get the best nights of sleep, now that I’m unable to turn in bed. I sleep in late, I take naps, and I need personal care throughout the day. I am still severely disabled, but I try to stay active.

Maybe that’s why today is never as bad as I imagined it would be. I keep thinking, “If it would only stop, I can deal with this.” It doesn’t stop, yet I adapt.

Heaven may be better, but today is still pretty good.

To commemorate six years of life with a terminal disease, we’ve lowered the price of Heavy e-book to 99 cents for the next month.

Heavy-cover-small99cent

 

The Long Haul

April 18, 2016, by Kristin Neva

IMG_8164My faith is shaken when I’m sleep-deprived.

Immobile in bed, Todd’s joints ache, and he calls me to turn him. I wake in the middle of a sleep cycle, and he goes back to sleep, but my brain is in a fog the next day.

Are you there God? What are you doing? I thought You were supposed to supply our needs. I have a basic need for sleep and I am not getting it.

I plead with God for healing, a cure for ALS, or if not that, then at least sleep—for both of us. We’ve tried different mattress overlays and he even took a $37,000 turning bed for a test drive one night. Nothing works to get him comfortable, and we have concluded there is no solution other than turning him a couple times each night.

Todd’s ALS is progressing slowly, and for that we are thankful. But now we are in the long-haul of managing caregiving for a quadriplegic.

Over the last year and a half, I’ve become increasingly sleep-deprived due to being up at night turning him in his bed. I’ve felt as though my faith is eroding, and I’m often overwhelmed by the suffering and pain in the world.

The morning of March 22, I had just returned from dropping the kids off at school when the phone rang. It was my mom. She had been awakened by the police who told her my dad had been found unresponsive in his truck.

I prayed, “Jesus, Jesus, Jesus, help us, Jesus,” as I dressed Todd and lifted him out of bed with the sling and hoist. We rushed to the hospital and arrived just as my mom was being escorted to the room where my dad’s body lay.

As the three of us sat in tears, I said, “The tomb is empty.” Because of Christ’s death and resurrection, we believe my dad is healed and with Jesus.

I had a sense of relief, even as I am often filled with doubt, that there, in that moment, I still had faith.

Not faith in a Sunday-School version of God where we follow him and life goes well. Not faith in a Santa-Claus God who gives us goodies. Not faith in a fixer-God.

But faith in a Risen Savior.

Faith that one day things will be okay because Jesus lives. Faith that my dad has been resurrected because he placed his faith in Christ. Faith that one day all of us who trust in Christ will be whole and healed.

And I felt hope. Hope because my dad is with Jesus. Hope because the difficulties in this life are temporary.

My faith is reborn as I think about my dad’s life. At his funeral, we chose for the Scripture reading 1 John 3:16-18. “This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers. If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him? Dear children, let us not love with words or tongue but with actions and in truth.”

My dad loved with actions and in truth.

Every spring he traveled to Reynosa, Mexico, ministering to the people in the Colonias. He took kids who visited from the inner-city fishing and boating. He drove to Canada to buy a used range-of-motion machine and spent months refurbishing it so Todd could use it in his wheelchair. When I went on a grain-free diet, my dad found recipes online and baked Paleo bread, birthday cakes, and pizza for me. He was a man who chose to serve—to be the hands and feet of Christ to those he came in contact with.

When I reflect on my dad’s life I see the answer to my faith-crisis questions. God works through people like my dad. He wasn’t flashy. He was a down-to-earth guy who just kept loving people.

That’s how I want to live too. As I serve Todd and my kids, I want God’s love to be made complete in me.

And there are many others who are the hands and feet of Christ to us as we face ALS.

Weeks before my dad’s death I had scheduled a nighttime caregiver through a home health agency. The night she came ended up being the night before my dad’s funeral. For the first time in a year and half—the night before one of the hardest days of my life—I slept eight hours and felt rested.

Since then, Todd has recognized what a difference sleep makes for me. For the last couple of weeks he has tried to tough it out most nights, which means he lies awake for hours at a time, uncomfortable because he is unable to turn. He’s in a fog the next day.

This is what it’s come down to. Either he sleeps or I sleep.

The time has come for us to have more help at night so we can both get some solid rest. On a few nights, we’ve hired a home health caregiver from an agency to come from 10 p.m. to 7 a.m. We’ve been pleased with the nursing students the agency sends.

As we’ve shared our sleeping difficulties with a few friends, God’s people have responded with action. Some have given us money—it costs $180 to hire a professional caregiver for a night. Ten-thousand dollars would cover one night a week for a year. A friend has said she’d like to organize an effort to raise funds for caregiving help, and a retired nurse volunteered to take an occasional over-night shift.

Also, we are exploring building an addition off Todd’s bedroom so we would have a room for volunteer and paid caregivers to be within earshot of him. Several people have offered to help us build the addition.

God’s love is working through his people.

Stay tuned for details about our caregiving fundraiser and our building project.