Author Archives: kdneva

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!

The Clock is Ticking

June 7, 2015 by Todd Neva

Heavy-cover-small99centFive years ago today, my life was divided into before and after a neurologist diagnosed me with ALS.

A family friend had recently died of ALS. The disease ravaged his body, and it took him in just a year and a half.

“How long do you think I have?” I asked.

“We’ll have a better sense after a year,” he said.

He told me if the disease progresses slowly, it will continue on a slow course. If it progresses quickly, then I will have less time than the 3-5 year average prognosis. I checked in with him every few months and he monitored my strength.

One year after the diagnosis, I drove to the clinic and walked into the exam room. Kristin and I sat in his office with bated breath. My arms were much weaker. My lung capacity had declined.

Holding back tears, Kristin pressed him, “How long do you think Todd has?”

“Five years.”

The clock was ticking.

Now, five years later, I’m optimistic that I’ll have years ahead of me.

I’m a quadriplegic in a wheelchair. I’m dependent on Kristin and equipment to transfer from bed, to chair, to toilet. I spend long hours at my computer with adaptive equipment. Because I have virtually no hand function, I eat at the kitchen island face-to-plate.

“I’m eating like Dad,” Isaac said the other day.

“Your muscles work, Isaac,” Kristin said. “Use your fork.”

So what is my secret to longevity?

Nothing. This disease ravages bodies indiscriminately and takes a different path for each. There’s little proven to extend life. But I do what I can — keep a positive attitude, pray for healing, take supplements, keep my weight up, and live an active life. Most of that might have a bigger impact in my disposition than it does on my prognosis. It feels good to try something, as long as it doesn’t break the bank.

No matter what path the disease takes, it all ends the same — miserably.

I dread that day, but it keeps me intensely focused on doing all that I can today. I worship my God. I love my wife. I engage with my kids. I listen to my friends. I’m active in my church. I eat great food with no regret. I laugh. I cry (as seldom as possible). I write.

I have a full life. I can’t imagine how I ever had time to work a regular job.

To celebrate the occasion, for the next month we’re lowering the price of Heavy e-book on Amazon to 99 cents.

Spread the word.

We All Break

RESTJune 2, 2015 by Kristin

I’m in a faith crisis.

I used to think life was working because I followed God. I went to Bible college and into ministry to make a difference in the world—I taught kids they can have eternal life through faith in Jesus and a better life here on earth doing things God’s way.

I’m still trying to follow God, but life isn’t working the way I thought it was supposed to.

I feel like a failure, because, when push comes to shove, I can’t live the Biblical truth I believed and taught to at-risk youth. I can’t get past my anger and sadness to the joy I thought he promised.

I asked Todd why I don’t feel God’s comfort.

“You’re swimming in the middle of an ocean asking what wet is,” Todd said. “You’re surrounded by the love of God, by his people, in his grace, but you don’t see it because you’ve never known anything else.” Todd knows how dark life can get because he wasn’t walking with Christ when he was in his twenties. He says our life isn’t dark.

Friends tell me I am doing fine considering our circumstances. Todd tells me I am doing a good job taking care of him and the kids.

“Why am I in a faith crisis?” I asked Todd.

“Because you’re in crisis,” he said.

I am connected through Facebook to other caregivers and many of us are hard on ourselves. We think we should be able to walk through suffering better. I wonder, would it really be suffering if it wasn’t hard? We are human. Even Jesus wept. Our Savior prayed, “My God, my God, why have you forsaken me?” One of the most encouraging things someone told me (Thanks, Pastor Steve) was “Of course, you’re having a hard time with this. You’re weak.”

We’re all weak.

Todd and I enjoy watching a spy TV series together. In one episode, a spy was captured by rogue agents. “Will he talk?” a young spy wondered if his teammate would break under the brutal torture techniques. “Everyone talks,” a veteran spy declared.

Some of us are more resilient than others, but we all break.

Victor Frankl poses a question to those who are suffering to help them gain perspective: What would you say to yourself when you are 80, lying on your death bed looking back on life?

The 80-year-old Kristin would say to herself, “You squeezed what happiness you could out of your time with Todd and the kids. Todd loved you. The kids love you. It was wonderful to be so loved. You invested in the kids. You stuck with Todd. You did the best you could. It was a long tough season, but you hung in there. It seemed like your grief would never end, but in the grand scheme of things, it was just a part of your story, and there was good in those difficult years. You grew in empathy and in love. You expected too much of yourself, but you did fine. You were mad at God, but all those kids you worked with before ALS and many people you met after Todd’s diagnosis got the short end of the stick, too. Everyone has to learn to deal with suffering.”

My 80-year-old self is kinder to me than my 37-year-old self. Maybe broken is an okay place to be. The Psalmist was broken. The Apostle Peter was broken. We eat the Lord’s Supper and remember Christ’s words: “This is my body, broken for you.”

My story is one in a long line of broken stories. It is a minuscule subplot of God’s great story of redemption.

As I have talked to others, I realized I am not the only one struggling to cope with the brokenness of this world. A friend and I decided to start REST, a Christian, 12-step support group for women who need recovery from the heartaches of life. Life can be brutal. It requires re-definition. It’s a hard process and we aren’t designed to go it alone. REST, Raw Emotion Support Time, will be meeting at Evangel the second and fourth Sunday evenings of each month, beginning June 14th and running through November.

Pray for us—or join us.

The Gap

May 3, 2015, by Kristin Neva

IMG_2629“Did you think I was as old as you?!” He looked at me incredulously.

Ouch.

I was at a coffee shop with a writing group. A fellow writer also grew up in the area. “What school did you go to?” I asked, thinking we might play the who-do-you-know game and once again confirm that there is only one degree of separation between Yoopers.

He graduated from Houghton High School.

“I went to Hancock,” I said, “but my best friend went to Houghton. What year did you graduate?”

“2005”

“Oh,” I said. With his facial hair, it was hard to tell he was ten years younger.

I am fast approaching forty.

I’m at the age when many people come to realize life is not going to go as they expected.

Until just a few years ago, my life seemed to go according to plan. Graduated high school. Went to college. Had a rewarding job coordinating a tutoring program at an inner-city ministry. Met and married Todd who had a good job at a good company. A couple years after we were married, I was delighted to become a stay-at-home mom to Sara. A few years later, Isaac was born. We had dreams to travel, renovate our 1925 bungalow, and have more children.

We all had dreams when we were young, but then, at a certain point, life is what it is. My friend thought she’d be a business woman, but has found herself at home with four kids. I have another friend who dreamed of being a mom, but encountered infertility, then hoped to adopt through the foster care system, but thus far remains childless. Others thought they’d marry, but remain single. Other friends struggle financially.

Life doesn’t turn out as we expect. That gap between unachievable expectations and reality is called disappointment.

When Todd was diagnosed with ALS, we were more than disappointed. We were filled with grief. Our reality collapsed.

Would baby Isaac even remember Todd? Some people with ALS are cut down and die in less than a year. The hope we had for the future became unachievable expectations.

My once active husband, who used to remodel the house in his free time, never imagined that he would be confined to a wheelchair, his limbs nearly completely paralyzed. I had always imagined a family life including physical activities like bike rides, hiking in national parks, and occasional winter vacations to some place warm. I never thought I would be my husband’s caregiver in my thirties. I transfer him with slings and lifts. I help him toilet, bathe, and dress. I take care of the kids, prep meals, and run errands. I never imagined I’d be doing it all myself.

Over time, we’ve had to adjust our expectations, and we have to keep adjusting as the disease progresses. But, Todd tells me that he is not confined to a wheelchair, instead liberated by one.

Todd continues to approach life with a smile. He gets out as much as he can and acts as a sounding board for his friends. He listens to and encourages me. He uses voice dictation software to write. He spends time with the kids. We enjoy family movie nights and attend sporting events together. This is our life. I’m a mother, a wife, and a caregiver. I’m committed to my husband and to my children, to my marriage and our family.

Also, I’ve developed a new passion: writing. Todd and I wrote our memoir Heavy together. More recently, I’ve been writing fiction. Writing is a good creative outlet for me in the midst of never-ending laundry and dishes. I completed my first novel, Snow Country, and found a literary agent. He submitted it to a half dozen publishers, and we are waiting to hear back from them. In the meantime, I am working on novel number two: Copper Country. I write and Todd is my editor-in-chief. He helps me brainstorm and structure my stories. Writing has brought energy to our marriage.

Todd says, “The gap between unachievable expectations and reality is opportunity.”

A Little Miracle

IMG_2606April 19, 2015 by Kristin

“That was ideal!”

“I wouldn’t say that.” Todd said.

Viruses and ALS do not mix well. Todd can’t turn over in bed, so there is little relief from sinus pressure. He can’t get himself out of bed, so he’s unable to run to the bathroom in the middle of the night.

These facts have turned me into a hand-washing fanatic—one hundred times more so than when Sara was a brand-new baby. We vet people’s health before they visit us. If I forget to bring the hand sanitizer to church, I make a beeline for the bathroom to wash my hands after the meet and greet—my anxiety is palpable. I have Sara wash her hands and change her clothes as soon as she’s home from school. We do our best to avoid colds and stomach bugs, for Todd’s sake. He has weathered a few colds but he avoided stomach issues until this weekend.

Todd woke me up at 2:30 in the morning. It could have been a messy situation. Todd is dependent on me to transfer him with slings and overhead lifts. I can only move so fast. Nonetheless, Friday night the timing and transferring worked flawlessly. I got him to the bathroom in time. I got a bowl from the kitchen before he even knew he needed it. A gait belt attached to our overhead lift supported Todd while he sat in the bathroom and leaned over a bowl I held in front of him. The kids were at a sleepover at my parents so they weren’t woken and we could sleep in.

One of my big fears—Todd getting a stomach bug—came true and we weathered it well. I shook my head in amazement. I was filled with gratitude and relief.

I can’t comprehend God’s sovereignty in light of all the suffering that takes place in the world. I passionately hate ALS and I passionately love Todd. I believe God feels the same so I don’t understand why he doesn’t provide a cure for this wretched disease this side of heaven. Not just for Todd, but for all those suffering.

As for me and God, I pray angry prayers much of the time, because with this disease, there is no cure for the caregiver either. Like many CALS (caregivers of people with ALS), I feel overwhelmed and battle depression. If God’s not going to intervene with an ALS cure then at least he should give me supernatural strength. “Go to God in prayer,” I’ve been told, “and he will give you love, joy, and peace.” I go to him, but much of the time, I don’t feel God’s comfort. I relate to the Psalmist who said “But I cry to you for help, O LORD; in the morning my prayer comes before you. Why, O LORD, do you reject me and hide your face from me?” (Psalm 88) I find a bit of relief in knowing I am not alone. Forty percent of the Psalms are laments. I lament to God and I pray The Lord’s prayer, “Thy Kingdom Come.”

Life down here is hard. This world is broken and people suffer in ways too much for the human soul to handle: abuse, starvation, disease, early death.

At times, I sense God’s presence and protection in our lives. I was biking with the kids the other day when Sara lost control of her hand brakes on a steep hill. I watched with horror, helpless as she picked up speed. She dragged her foot and lost shoe rubber, slowing herself down. She made it down the hill unscathed and I was so grateful. I praised God.

Friday night, after our ordeal went smoothly, I used words like “ideal” and “excellent” to describe the experience. Todd looked at me like I was crazy. “He’s the God of little miracles,” Todd joked. The God who doesn’t heal him, helped us through a night of sickness.

It is puzzling to me that we only sense God showing up some of the time and in some ways, but I guess that is the reality of living in a broken world. I pray for physical healing for Todd this side of Heaven as Todd’s body gets weaker. I pray that I would be able to shake the cloud of sadness I live under. Healing this side of Heaven seems elusive.

God did the biggest miracle when he came to this earth in human form, when he died and rose, so that one day, we will not need to endure this broken world. In the meantime, I pray “Come, Lord Jesus.”

MDA Anyone’s Life Story

MDA Minnesota/Western Wisconsin FacebookMay 30, 2014, by Kristin Neva

May is ALS awareness month, and for its monthly newsletter, the Muscular Dystrophy Association for Minnesota/Western Wisconsin featured Todd in its Anyone’s Life Story profile.

Here are a few of the questions that Todd answered:

What was your professional occupation?

I was a business manager for a large consumer packaged goods company. I mostly work with numbers — business analysis — across a variety of disciplines, including marketing, finance, and manufacturing.

Please tell us about your life before ALS:

Prior to ALS, I worked a lot, golfed some, and spent time with my young family—my daughter was three years old and my son was newborn when I had my first symptoms. Counting the hours, I suppose I spent much of my time working. Counting the memories, I spent much time with family and friends.

We attended a good church and hosted a small group at our house for Bible studies and prayer. We loved hosting gatherings, in general, such as an annual Memorial Day barbecue and a Christmas party. I also spent much time renovating our old 1925 craftsman bungalow.

Please tell us about your life with ALS:

Since having ALS, I worked less, until I couldn’t work at all. The golf ended quickly—in fact, it was the first thing to go. I spent the initial months after my diagnosis finishing the renovations on that bungalow, preparing it for sale so that we can build a handicap-accessible home up north close to my wife’s parents. ALS is a disease that is best faced with a support structure nearby.

It took a year and a half to sell the house, which seemed interminably long, but it did sell and we did build that house next to my in-laws. I was still able to work for a couple years after my diagnosis, then finally went on total disability in June 2012.

Now my time with family has increased—my daughter is eight years old and my son is four years old. I help homeschool my daughter, in part so that we can maximize my time with her, building memories that will last her lifetime.

We found another church and have made many good friends, but we do not host as many gatherings as we used to—my wife has enough to do raising two kids with nothing more than my moral support while being my full-time caregiver. But I do have a number of good friends who are willing to pick me up in my accessible van and cart me off to restaurants for an occasional meal.

What has been some of your toughest challenges living with ALS?

Change.

The toughest challenge is change. At any given point, I think to myself, “If it would just stop now, I could deal with it.” But it doesn’t stop.

This disease, ALS, is relentless, robbing me of independence month after month. I vividly remember the first time I couldn’t swing a golf club. “It’s okay, I thought, I can do without golf.” As clearly as I remember where I was when I saw the twin towers collapse, I can picture myself sitting at the kitchen table when I was first unable to squeeze the mustard bottle. “It’s okay,” I thought, “my wife can put my mustard on my hamburger.”

There were more setbacks, month after month, each devastating: unable to comb my hair, unable to button my shirt, unable to pull on my cowboy boots, unable to drive, unable to bathe myself, unable to lift a glass to my mouth, etc.

I have very limited use of my hands. I struggle to walk. I fall occasionally. I sleep a lot. I require a personal caregiver for the most basic tasks.

But even now, I think, “If it would just stop, I could deal with it.” But it doesn’t stop. ALS is relentless.

How have you needed to adapt to enjoy life with ALS?

God has given us the most amazing ability to adapt, from the power of our subconscious minds to the gift of geniuses who invent tools. This is what gives me an earthly hope: knowing that I have already adapted to so much, and knowing that other people who progressed much further than I have adapted and found great quality of life.

Some of the adaptation is subconscious. As some muscles give out, my mind effortlessly finds new ways to lift, pull, or hold. I don’t think much of it until somebody points out the clever way that I’m eating or drinking or writing. Some adaptation is creative. I have a problem that needs to be solved, and I have to think of a solution, such as ramp or lever.

Some adaptation is collaborative. The ALS clinic is an excellent place to find solutions to problems.

Some adaptation is technological. There are adaptive programs embedded into every computer, such as the on-screen keyboard and the touch-to-click trackpads on laptops. To write this, I’m using voice-to-text dictation software. Eventually, I will use eye-gaze technology, and may speak using my prerecorded voice.

Has ALS brought new significance to any aspect of your life, such as family, attitude, hobbies, passions, career, etc.?

Oh, yes!

There is so much significance in a disabled life. It is a gift beyond measure to have my priorities and attitudes focused on what is important in life. I look back at my career with pride and the sense of accomplishment, but I regret that I put so much of my identity behind what I did. On a recent interstate trip, I commented to my wife, “If I’m healed, I’d like to become a trucker.” I would happily forgo the rat race of the corporate career for the freedom of the open road. My wife would like me to become a preacher if I were healed.

Shortly after my diagnosis, my wife and I began to write a book. Heavy, Finding Meaning after a Terminal Diagnosis, was published in January 2014 and is available on Amazon. I’ve also had an opportunity to speak and preach on the topic of suffering. Suffering is such a universal condition — if you haven’t suffered, you simply haven’t lived long enough. But as common as suffering is, those who are suffering often feel alone. Our goal in writing the book, and my objective whenever I had an opportunity to speak, was to be a companion in suffering so that others will know that they are not alone.

Do you have a favorite quote, song, saying or any “words to live by” that inspire you?

“Yesterday is history. Tomorrow is a mystery. Today is a gift. That’s why it’s called the present.”
― Alice Morse Earle

Is there anything else about yourself and/or ALS that you want to share with others who read your story?

ALS is a dreadful disease, without a doubt, but it is a disease that gives its victims time. Some people are cut down by cancer. Some people die in an instant by heart attacks or auto accidents. Surely there’s no good way to die, but all things considered, I’m glad that I have time. I have time to build memories with my wife and children, ensuring that they know how much they are loved. I have time to get my house in order, financially and spiritually. For some, this disease progresses so rapidly that there is continual stress, but even for them there is time to say goodbye. For others, like myself, this disease progresses slowly, allowing us to find new interests and meaning in a disabled life.

It’s not all bad. I pray for a cure, even miraculous healing, but I don’t dwell on it. My days are fairly normal. I wake. I eat. I communicate. I laugh. I sleep. I have many interests and find things to keep myself busy.

I am not dying of ALS. I am living with it.

A Reality We Did Not Imagine

March 10, 2014 by Kristin Neva

When Jesus was arrested, Peter was ready to fight. Minutes earlier he had promised Jesus that he would die with him, and he was prepared to do it. I will stick with you. If we die, we will die fighting.

Peter did not want to give in and submit to Jesus’ arrest. That was not his plan, not what he expected. It didn’t make sense. Die fighting? Yes. Give up? No. When the Master called him to another plan, he was blind-sided. This cannot be. The cross is not what I imagined.

How often are we called to a reality that we did not imagine? We are prepared to take on the world, to do great things. And then we meet a new reality. Our dreams die. We live a mundane existence, rather than the life we aspired to. We suffer.

Are we willing to surrender to a different plan? A plan we never imagined.

As he pulled out his sword, Peter did not know that he was trying to prevent the very thing that would bring ultimate good.

As we resist our painful realities, could we be trying to prevent the very thing that will bring greater good into our lives?

Peter did not know it on that dark day, but resurrection was coming. It is coming for us.

1 Corinthians 13:12 “Now we see but a poor reflection as in a mirror; then we shall see face to face.”

Review of Heavy

We do not know how far the reach of Heavy will be, but our book has already touched some people facing difficult circumstances. The responses we have received from readers motivate us to continue to share our story. Thank you to blogger, Monica H, for reviewing our book.  Check out her review of Heavy here.

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.