Category Archives: Suffering

Seven Years Takes a Toll

June 10, 2017, by Kristin Neva

Seven Year Fam Pic IMG_6454Driving home after dropping the kids off for their last day of school, I was struck by the natural beauty around me. Lilacs blooming. The sun shining on trees full of apple blossoms. So much beauty, I can barely absorb it. We’re in the glory days of UP living.

At the same time, there’s much pain woven into this season of the year for me.

My second Father’s Day without my dad will be here soon. I think of him often with reminders of him everywhere. The shelf he built for Isaac to keep his Legos on. The dollhouse he built for me and then renovated for Sara. The clothesline poles he made for my birthday, and the fruit trees we planted together. There will always be an ache in my heart, and yet I’m grateful to have had a dad who loved so well.

This is also the season when we pass the anniversary of Todd’s diagnosis — seven years on June 11. There’s that same mixture of joy and pain living with ALS.

Seven years with a progressive terminal illness has taken a toll.

I’m currently trying to get Medicare to approve an alternating air cushion because Todd has pressure sores from sitting in his wheelchair. He gets uncomfortable, not being able to shift his weight. He loses muscle month by month. His feet — his whole body even — swell with edema. He has itches he can’t scratch.

It’s maddening not being able to scratch an itch. Try it. Think about itching right now, and you’ll probably get one. As I type this my face has an itch, and I’m trying to see how long I can hold out before scratching it.

That’s it. I scratched. Itch gone. Relief.

Imagine not being able to do that. Todd has an amazing attitude, but this disease is a monster.

And it’s not just hard on Todd. It has taken a toll on me as well.

After not getting uninterrupted sleep for a year and a half because I was up and down all night turning Todd, last summer I was at my breaking point. With the chronic Lyme disease I picked up from a tick bite, as well as the stress I’m under, my anxiety went through the roof when I was on duty without a break. We needed night-time help. We were thankful for the support we received so we could build the caregiver’s addition off of Todd’s bedroom, and now we are hiring help so we can both sleep at night.

Medicare pays for zero respite care, and Todd did not have a long-term care insurance policy. So the cost of nighttime care is a huge burden, and I can’t leave him to work as then we’d also have to pay someone to take care of him during the day. The yearly cost is over $35,000 for us to get six hours of sleep each night.

Thankfully, we have one volunteer who gives a night of her time every week, and we have a couple ongoing respite care grants from ALS organizations. We pay for a great deal of the expense out of pocket, but we’re left with about $15,000 per year that we couldn’t possibly cover. I’m hoping my writing takes off so we can close the financial gap, but until then we depend on our friends to generously gift us money.

Sleep is so necessary for Todd’s and my health. When caregivers cancel, as we asked them to when they’re sick, it’s as if I have a PTSD attack. I simply need sleep after I went without it far too long.

And yet, we celebrate. Todd has outlived his prognosis by two years, and the decline in his breathing continues to be gradual. I’m thankful I get to still do life with my best friend. The kids have their dad to help them with homework and encourage them. Todd finds purposeful activities to fill his time—counseling friends, creating graphics for our church, preaching a few times a year, and — my favorite—helping me edit my Copper Island novels.

There’s creative energy flowing in our house, and it’s good. Many times, I stop what I’m doing to write down something funny Todd says — inspiration for scenes in a novel. Or we’ll have a minor disagreement and I’ll say, “Let’s keep arguing and see where this goes. It’s good dialogue.”

My second novel, Copper Country, will be out at the end of the month, possibly by the end of this week if the proof copy looks good. There are some funny scenes in it. I have learned how therapeutic laughing is — especially in the midst of difficult circumstances. I’m reminded of what Todd wrote in our memoir Heavy, “There is pain and suffering in this world, but there is also joy, and not just suffering here and joy there, but suffering and joy in the very same place.”

**In celebration of this seven year anniversary of Todd’s diagnosis, the Kindle version of Heavy will be 99 cents for the month of June. Share with folks you know facing ALS or other tough stuff. It resonates with people who are dealing with various kinds of suffering.**

The Purpose of Suffering

March 14, 2017, by Todd Neva

The following is a transcript from the last 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:

Good morning, Mitch. Today I’m going to wrap up this topic of the God of Suffering with the discussion on the Purpose of Suffering.

In the seven years I’ve had ALS, I noticed something interesting— many of the people who’ve come alongside me have their own personal stories of suffering. I got in the habit of asking people what tragedy has struck their lives. They survived cancer. A sibling died. A mother is disabled. A brother is intellectually impaired.

After having my first symptoms of a weak arm, I began seeing a chiropractor. He was kind enough to see me at the end of the day so I wouldn’t have to take too much time off work, and one evening as I left the building, I saw him load a man into the front seat of his car and then strap his wheelchair onto a carrier on the trunk.

The next time I saw the doctor, I asked him about the man — I thought it might be his brother, since they looked alike. “He’s my childhood friend,” Doc said, pointing to a framed photograph on his desk of two boys in Little League outfits. Not long after that picture was taken, his friend started having strange symptoms. His muscles would seize up. It took many years to get a diagnosis, but they finally figured out he has dystonia. Dystonia is almost the exact opposite of ALS — rather than the muscles losing strength, they all seize up involuntarily. He became totally paralyzed, but with severe pain and muscle cramping.

“Is that why you got into chiropractic care?” I asked.

“Yes, the medical doctors could help him, and I thought maybe I could at least give him some relief.”

Recently, after the tragic boating accident on Lake Superior, a recovery team came to look for the two men and the boy. The founder of the nonprofit organization had the best equipment money could buy, and he found the three, giving at least some sense of closure to the families. He had said he lost his brother, a firefighter who got swept away in the river as he was attempting to rescue someone.

When a loved one suffers, we suffer with them. There’s a word for that — compassion. It’s from the Latin words with and suffering. If you prefer Greek-based words, use empathy.

Yesterday, I talked about some things Christians say to try to comfort people in suffering. One that I left out is, everything happens for a reason. People like to point to Joseph, the son of Israel, being sold into slavery by his brothers. He ended up working for the Egyptian Pharaoh, in charge of storing food prior to a major drought. One day, his brothers show up begging for food. He was able to save his family. What man had intended for evil, God worked for good.

That’s a great story, but it’s a historic account of one situation. It’s not a promise that every bad situation is going to somehow turn into something good. There are many bad situations that are just awful, and nothing good will come of it except the change in our hearts if we allow God to work in us.

In Romans 8:28, the Apostle Paul writes, “And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Pastor Paul is saying that even in a bad situation, if we love God and seek him, he can use that situation to build us up. The situation itself may be horrible, but he is able to redeem all situations. Sometimes, the best thing that might come of it is that we’ll have compassion for other people who are suffering.

Compassion makes us more Christ-like.

Jesus Christ, who, existing in the form of God, did not consider equality with God something to cling to. He became human, and he suffered with his.

And he suffered for us. A few years back, a major motion picture came out called the Passion of the Christ, and every Easter kids around the world perform Passion Plays.

Words change over time, and passion has come to mean something like love and devotion, such as he has a passion for his work, or the couple was passionately in love.

The word passion originally meant to suffer. The movie was about the Suffering of the Christ, and the kids perform plays about the Suffering of Christ. His suffering was the ultimate act of love, so it’s not too far off base that we now use the word passion to mean a type of love.

I’ve suffered over the last few years with ALS. I’m a total quadriplegic. I have some pain, lots of discomfort, restless nights, itches I can’t scratch, and continual progression that will eventually lead to respiratory failure. I’m suffering, but the cool thing is that my heart has been open to the suffering of this world.

I feel more deeply for others, and I hope to play a small part in pointing people to the God of mercies and all comfort.

Insufferable Christians

February 8, 2017, by Todd Neva

The following is a transcript from the second 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:

Sometimes the kindest, most loving people say insensitive things to people who are suffering. Seeing my body waste away, people have tried to comfort me with “biblical truths” — if this were television, and if I could raise my arms, you would see me put little air quotes around biblical truths because some of these old adages are nowhere to be found in Scripture. Personally, I’m not easily offended, especially when I can see compassion in their eyes, even when they say things like:

  • God has you right where he wants you, or,
  • If you have enough faith, God will heal you, or,
  • God won’t give you more than you can handle.

I know they’re just trying to make sense of a bad situation. But others have confided in me that they’ve been hurt by these insufferable Christians.

Let’s take each of these one by one.

First, God has you right where he wants you may be a deduction based on the sovereignty of God. God is all-powerful, all-loving, and he is capable of healing, so if he doesn’t heal, he must be choosing not to heal and has you just where he wants you.

Yes, I get it, but folks can feel abandoned by God, or punished even, when people attribute to God abuse, birth defects, or cancer.

We are often not where God wants us. Would you tell a little boy with leukemia that God has him right where he wants him? Would you tell young girl being sex trafficked that God has her right where he wants her? Then why tell a forty-six-year-old quadriplegic that God has him right where he wants him?

There is no promise of the pain-free life, in fact Scripture is replete with references to our suffering, as if it is inevitable. But we have a God who cares.

The Apostle Paul tells us in Romans 8 that “the Spirit himself intercedes for us with groanings too deep for words.” Even if you don’t know what to pray for, just imagine God himself being torn and conflicted over your pain, the Holy Spirit pleading with the Father.

Your pain hurts God. He takes no pleasure in it, so a plan has been put in place, and all of this will one day be made perfect. “He will wipe away every tear from [your] eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things [will pass] away.” (Revelation 21:4)

Yes, many would agree that God cares and he doesn’t want to see you suffer — so if only you had enough faith, you’d be healed. This one stings a bit, because I’ve prayed thousands of times for healing, yet my body continues to lose strength. It’s now getting more difficult to breathe, and I’m one severe cold away from death. It’s getting harder to swallow, and every time I eat I realize how easily I could choke. Yet I continue to pray.

It’s not due to my lack of faith that I’m not healed. If someone tells me that I only need enough faith, my response to them is — Jesus healed the paralyzed man due to his friend’s faith. So please pray for me. I’m counting on you, on your faith, to heal me. Sometimes Jesus healed people because of their faith, and sometimes because of others’ faith, and sometimes with no mention of faith at all — the reason Jesus healed was to reveal himself as the Son of God.

Now I can’t answer why God continues heals some and not others, or why he intervenes miraculously in some situations but not others, but he has a plan to fight evil in every case — the church. Christians should be actively fighting against evil. We should help the widows and orphans, comfort the sick, and fight injustice for the oppressed.

Well, maybe God won’t heal you entirely, but he certainly won’t give you more than you can handle.

Really? Right now I have way more than I can handle.

People may get this idea from 1 Corinthians 10:13 — “No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.”

In that verse, Paul is saying there is no excuse for sin.

As for our suffering, there’s no shame in saying it’s too much for you to handle.

Years ago when Jesse Ventura was campaigning for governor of Minnesota, a reporter asked about his faith. He said that Christianity is a crutch. He didn’t need Christ in his life, because he was strong enough on his own. I hope he’s had a change of heart, but I’m not offended by the statement. I admit that Christ is my crutch. He’s more than my crutch — he’s my walker, my wheelchair, my life support.

Because ALS is so much more than I can handle, I have to rely on other people. And if it’s even too much even with their help, I still have the hope of heaven.

Until the renewal is completed, this life is often more than people can handle — it’s part of the earthly futility that God hopes would drive us to him. And if the church is doing its job, we would be coming alongside people in their suffering, and they would see the light of Christ in us.

 

The transcript from The Purpose of Suffering will be posted at a later date.

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.

God Can

August 15, 2013 by Kristin Neva

RocksIn the Fall of 2010, we went to Northern Minnesota so Todd could hunt possibly one last time. I hit the Deer Widows’ Craft Sales with Todd’s mom. Still reeling from Todd’s diagnosis and the loss of our dreams, some engraved beach rocks caught my eye. I found all of our names and another rock that said “Our Love Is Forever.” As I paid for the rocks, the seller reached down and grabbed a rock from a basket. “Here’s an extra one. You can have it.”

The rock was engraved with the words “God can.”

Back at home in Wisconsin, I set the rock on the window sill above my kitchen sink and read the words on it often. We were praying for Todd’s healing, praying for our house to sell, praying for peace and joy.

Over a year later our house finally sold and I packed the rocks amongst other miscellaneous items. We moved to my hometown, built a handicap-accessible home across field from my parents, and settled into life in Upper Michigan.

Another year has passed and I am still getting organized. I came across the rocks a few days ago. Smiling, I placed them on the kids’ bathroom counter.  Sara and Isaac excitedly found their names. Sara read the writing on the other rocks. “God can,” she read. “God can do what?  What does that mean?”

“You tell me,” I said.  “What can God do?”

“He can turn water into wine. He can walk on water. He can feed 5,000 people. He can heal.”

Yes. God can heal.

I am teaching Sunday School at our church this summer. The curriculum for last Sunday paired the story of Jesus’ healing the blind man in Mark 8 with the verse Philippians 4:19, “And my God will meet all your needs according to his glorious riches in Christ Jesus.”

The curriculum pointed out that just as Jesus met the blind man’s need for healing, He will meet our needs. So where’s the healing for Todd?

To put Philippians 4:19 in context, Paul writes in verse 11: “I have learned to be content whatever the circumstances. I know what it is to be in need…”

Wait a minute. Paul was in need? Paul was telling the Philippians that God will meet their needs even as he was in prison, at times hungry and in want.

Paul goes on to say, “I can do everything through him who gives me strength.”

God promises us strength. Maybe we get healed. Maybe we don’t.  But He is with us, giving us strength.

We continue to pray for Todd’s healing yet the ALS slowly and relentlessly progresses. At the same time we see God’s hand in the timing of our house sale, in the building of our house with people volunteering to help with various projects at just the right time, and now we are in a place where we have the support of nearby family and are building new friendships.

Paul saw God using him to share the message of salvation through faith in Christ. And I am finding joy in passing on the things I am learning from God’s word to the Sunday School kids, helping prepare them to face adversity, teaching them that although life doesn’t always go the way we would choose, even in the midst of prison or pain, we can praise the God who is with us, giving us strength.

So what was the point of all those healings and miracles that Jesus did? To show us that Jesus is God’s son, the promised Savior. Jesus fulfilled prophecy when he healed people, he showed love and compassion to the sick and disabled he came in contact with, but He didn’t go around seeking out people to heal. In fact, in Mark 8 He told the blind man not to go into the village. He didn’t want the emphasis of His ministry to be His miracles when He had something much bigger on His mind. Jesus came to give us spiritual healing through faith in Him.

After Jesus healed the blind man He asked Peter, “Who do you say I am?” Peter told Him, “You are the Christ.” Jesus told the disciples not to tell anyone and then began to teach them about what was coming: His death and resurrection, the reason He came to this earth.  He tells the crowd, “If anyone would come after me, he must deny himself, take up his cross and follow me.”  Our Lord suffered and died on a cross for us.  Here on earth, we too suffer, and we follow Him.