Category Archives: Uncategorized

Did He Allow It? A Response to a Question after the Father’s Day Flash Floods in the Keweenaw

June 19, 2018, by Todd Neva

Eagle River Falls, MI, Sunday, June 17, 2018

A friend called me because her daughters were distraught with all the damage in the Keweenaw, and she was struggling to answer their question. “Why did God allow it to happen?”

Wow! That’s a good one. Some of the greatest minds in history have wrestled with this question.

St. Augustine wrote about this in about 400 A.D. Theologians debate this today. And sometimes Christians say things that are in some ways true, but lack context or they’re not appropriate for the situation.

First, let’s be clear in that God is not punishing you. Jesus said that the Father makes the sun rise on the evil and on the good, and sends rain on the just and on the unjust.

Whether we are good or bad, we’re all subject to the forces of this world.

Did God allow it? Is he not in control?

In a broad, cosmological sense, yes. But this is where we need context, and an answer that’s appropriate for the situation.

Paul said God subjected all creation to futility “in hope 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.”

And the writer of Hebrews said, “Now in putting everything in subjection to [Jesus], [God] left nothing outside his control.”

But then he said, “At present, we do not yet see everything in subjection to him.”

So, yes, God allowed it in so much as he exposed us to the forces of nature and even the consequences of free will. And he is in control, but the plan is bigger than what we see on a day-to-day basis.

And what we see on a daily basis is a soul factory here on earth.

By one estimate, there has been over 100 billion people born on this planet. About 7 billion of those are alive today. Maybe God could have allowed the first 20 or 30 billion to be born and then ended it all, but I’m glad I had an opportunity to be born. I’m thankful to live in a community that was built long before I was here, safe in a society whose institutions were developed through much trial and error.

We’re here for a time, but our souls live on. And those who know him can spend eternity with God in heaven where all will be made perfect.

In the meantime, we get to see glimpses of heaven — when we love and when we’re loved, when we marvel at the beauty of his creation.

It’s a miracle any of us are alive in the first place. The complexity of life is such that scientists have only begun to scratch the surface in understanding it. The average adult body is made up of an estimated 30 trillion cells. If you lineup all of the DNA molecules in all the cells, it would reach 34 billion miles. It takes the earth 60 years to cover that distance when traveling around the sun.

Anybody who’s owned a car knows that the more features are on a car, the more can go wrong. And as such, in the most complex machine ever designed, one little glitch in the human body — one little protein missing, one little DNA chain broken, one bad chromosome, one little contamination — we have sickness, disease, and suffering.

My point is not to make you anxious of all that can go wrong, but to point out the miracle of all that goes right, day in and day out for so many people for so long a time.

The human body is not the only complex machine God designed. He also designed an incredibly resilient ecosystem that has sustained life for thousands and thousands of years. A combination of lifeforms that trade oxygen for carbon dioxide. The water cycle that sustains life.

We inhabit a complex, and sometimes dangerous, machine. Sometimes we don’t have the foresight or knowledge to understand all that could go wrong, such as exposure to hundred-year floods. There’s no possible way to know all that can go wrong, and there’s no way to live a life completely free of risk. Sometimes things just happen.

But when things do happen, we have an opportunity to show God’s love to those who are suffering. We can work to bring order out of chaos. Find a way to help somebody. Grief needs action.

Fabric of Life

June 11, 2018, by Kristin Neva

Eight years ago today our lives became divided into before and after. Before the diagnosis, I took a lot for granted. We had the normal hopes and dreams of any young family with two small children. After the diagnosis, we needed to learn to live with this ever-changing disease.

The months and years continue to get sliced into before and after. Before we moved to Michigan. After Todd stopped working. Before Todd gave up driving. After he got the wheelchair. Before we got the handicap accessible van. Before we needed help at night but didn’t have it. After we began hiring nighttime help so we could sleep again. Before the diagnosis, the world felt safe, predictable. After the diagnosis, the reality of the fragility of life is always forefront in my mind, and with that the sense of amazement that any of us are here at all.

This morning, I pounded out the beginning of another chapter of a novel I’m writing. I took a break to look out the window and saw two sandhill cranes strutting down our gravel driveway. This afternoon, I had the joy of hearing Sara laugh and sing with her piano teacher. This evening, I’ll attend Isaac’s baseball game and pray he hits the ball. Tonight, Todd and I will laugh together as we watch a sitcom.

Moments of before and after, both major and minor woven together, become the fabric of our lives.

PS Thank you to our family and friends who support us financially so we can hire nighttime help. We couldn’t do this without you. If you know of someone who may be interested in our story, let them know Heavy for Kindle is discounted to 99 cents from June 12 through June 19.

Now This is Humbling

December 18, 2017 by Todd Neva

I chatted with one of the white haired ladies at church on Sunday. We have much in common.

She was glad to see me, and I told her that getting out was good for the soul.

Her friend takes her to church on Sundays, and then they go to lunch. She’s dependent on her friend to get her out of her apartment. She was lamenting her doctor’s orders to not drive in the winter.

“But it’s just my pride,” she said.

“That’s true,” I said. “The hardest part is right when you lose independence. After it’s gone, you realize life goes on and it’s not so bad.”

Though I agreed with her, I would characterize it more as humbling than the loss of pride. I don’t think one needs to be full of pride to walk on his own or drive on her own. It’s natural. It’s normal.

This Christmas season, I’m mindful of all that Jesus gave up to walk among us. He humbled himself, and now we have a God who can sympathize with our weaknesses.

“Have this mind among yourselves, which is yours in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but emptied himself, by taking the form of a servant, being born in the likeness of men. ” Philippians 2:5-7

Merry Christmas

Expanding our World to Cope with ALS

September 19, 2017, by Kristin Neva

Someone recently asked me how I cope. “Prayer? Devotions?”

I think she was expecting a more spiritual answer. But I’ve found three basic things go a long way to keeping me sane.

First, exercise. Thirty minutes on the elliptical machine does wonders for my back, knees, and mood.

Second is sleep. We hire help to turn Todd at night. It’s necessary for his health. It’s necessary for my health.

And sleep enables the third method of coping — expansion.

In many ways, disease and disability shrink our world. We can’t have the adventures we imagined—hiking, camping, or vacationing with our kids. So our big annual event is the Houghton County Fair.

But even the fair took a toll on Todd this year. He went one day, and then needed to rest the whole next. He is most comfortable in his climate-controlled office, where he feels most independent on the computer.

And that is where our world has most expanded.

We’ve learned new skills in the last few years.

Todd has learned to draw with his HeadMouse. He makes graphics for our church. He helps me with my writing.

I’ve learned the craft of writing, having published the Copper Island Novels, and I’ve become comfortable speaking to groups. And I’ve developed a sales pitch selling the books and hand-tied wreaths at craft fairs.

Now we’ve started a couple YouTube channels. On the ALS 411, I talk about tips and tricks for disabled living. The things we’ve learned over the last seven years.

And since I’ve long had a passion for teaching kids to read, ever since I coordinated a tutoring program at the Milwaukee rescue mission, I started a channel to teach phonemic awareness to preschoolers, kindergartners, and struggling readers.

Our whole family has been helping with Time with Miss Kris. Sara and Isaac help brainstorm content, and they work the lights and camera under Todd’s direction. Todd has learned to edit videos, and we’re going to produce one video a week, posting them on Tuesdays.

The dream is that between the novels, wreath making, and YouTube, I would supplement our income enough to pay for sleep without having to rely so much on the generous support of our friends and family. (Thank you, by the way, to those who contributed to our caregiving fund. And thank you to those who’ve volunteered.)

But even if my business pursuits aren’t so lucrative, it’s good for our spirits to expand our world.

PS Check out the sample videos below. Like and subscribe, too.

What Seven Years of Sickness Taught Me about Marriage

August 24, 2017, by Todd Neva

Our vows were to the extremes – in sickness and in health.

For the first seven years, we were tested by the typical marriage issues. Communication. Intimacy. Money. Distractions. Lack of appreciation.

Much of the marriage advice worked. Hug daily. Never let the sun set on your anger. Pray together. Set boundaries. Date (each other). Affirm each other.

The wisest words were spoken fourteen years ago yesterday by an old man married 50 years — “All you need to say is, ‘Yes, dear.'”

I asked Kristin if there was anything she wanted to do that she would regret not doing.

“I want to live in the inner-city and minister to the kids there,” she told me.

That was my big “yes, dear.” I sold my plush condo on the east side of Milwaukee and we purchased a house in the hood.

We got to know some kids, but our biggest impact was to our next door neighbor Bob. He was a ragamuffin whom God loved, and we got to be with him when he died.

We closed that chapter of life, then moved to Racine where we had our kids.

A good job. A minivan. A beautiful bungalow.

Then in June 2010, I was diagnosed with a terminal disease. We held to our vows of “in sickness” as I got my affairs in order to prepare Kristin for widowhood.

But the 2-to-3-year prognosis has now turned to 7 years of disability.

And what issues do we deal with now?

Communication. Intimacy. Time management. Money. Distractions. Lack of appreciation.

Marriage is marriage, folks.

Disease is hard on marriages. Any tragedy is hard on marriages. Divorce rates rise after a death of a child. It pains me to see spouses collapse under the burden of caregiving.

I don’t know how Kristin keeps going, but she does.

I can’t hug her, and intimacy is understandably difficult, but we communicate. We pray daily. We talk through issues. We date — sometimes for just twenty minutes watching a show after the kids go to bed. I affirm her.

And I still try to say, “Yes, dear.”

Early in our marriage, Kristin talked about writing a book. She’d observed that most good books were written by people who were at least in their 40s, probably because they had something to say by then.

She wasn’t quite 40, but caring for a husband with a terminal disease seasoned her, so she had a vision for Heavy.

We wrote it so others who are suffering wouldn’t feel alone.

And then she took on the next big challenge — writing fiction. I love that, because there’s often more truth in fiction. We got to explore themes in Snow Country and Copper Country that we wouldn’t otherwise have touched.

And a week ago she asked me to write this anniversary blog, as she’s written the last couple.

But truth be told, this date snuck up on me, in spite of me sitting around all day. She had to remind me of the blog yesterday. I’ve been distracted by some other projects and Netflix.

Our marriage is tested by the typical issues.

I ordered her flowers this morning, and “yes, dear,” here is your blog.

Happy anniversary, buttercup!

Keweenaw Sweetness

July 17, 2017, by Kristin Neva

Sara Neva in Finnish Dance Costume

The Strawberry Festival is over, but fortunately the Keweenaw is still producing the little red berries. It’s some solace in a summer that’s slow in coming.

In Snow Country, Beth found hope in Pastor Chip’s words. “It’s going to take a long time for two-hundred inches of snow to melt, but it will melt and saturate the soil to give life to strawberries, thimbleberries, and blueberries.”

To the extent that Snow Country featured snow, Copper Country features berries. Keweenaw winters are marked by fall flurries, nearly daily snows in January, and spring blizzards. But our summers are marked by seasonal berries.

Early in the second book, Russ and Aimee visit Big Traverse Bay, where “low bushes with tiny white flowers, the genesis of blueberries, covered sand dunes.” And the “only shade came from a few Saskatoon trees, which would produce wild sugarplums in August.”

A few weeks later, Russ works for a lady where “trees encroached on the house, filling what was probably once a strawberry farm.”

Many of the old farms have been left fallow, as grocery stores prefer the almost tasteless strawberries genetically engineered to stay “fresh” for weeks during transport. But in the Keweenaw, we can still find berries that are half the size and twice the flavor sold by kids with roadside stands.

Later in Copper Country, Aimee and Russ are back at Big Traverse with Louisa picking berries, and the Heikki Lunta is serving fresh berry sauce on pannukakku.

There’s something genuine and earthy about a place scheduled by the seasons. Students, snowbirds, and tourists come and go, filling planes and cars in both directions. Businesses bustle or slow for their respective seasons.

I was bike riding with my kids when I spotted wild strawberry plants along our country road. I stopped and, searching for berries, found only a few for us to sample. They were small, but oh, so sweet.

With our cool weather, the berries are fewer and smaller, reminding us of how fragile and fleeting summer is. But we don’t despair. We celebrate all the more, savoring their sweetness because we know winter looms.

It reminds me of life as I reflect on living with my husband’s ALS. Life for the last seven years has been like a long winter, but we still have our good days. We’ll occasionally run to the Fitz in Eagle River for ribs. We’ll “stay-cation” for a week with daily visits to the Houghton County Fair. And we’ll celebrate and savor the Keweenaw’s strawberries, thimbleberries, and blueberries.

Beauty in Brokenness

BeautyinBrokenness

March 1, 2017, by Kristin Neva 

“The burden of grief is heavy, like the snow that crushed that old barn out in the field, but spring will come and the snow will melt.” In my novel Snow Country, Louisa comforts her granddaughter, who is grieving her broken engagement.

“But the barn will still be broken,” Beth responds, having lost hope.

After my parent’s old barn blew down, my mom made barn board picture frames. The weathered wood has character and beauty. The broken barn was repurposed.

We love stories of people overcoming tragedy, such as Joni Eareckson Tada, who was paralyzed in a diving accident. She went on to found Joni and Friends, which ministers to others with disabilities and provides wheelchairs around the world. Joni said her ministry is why she gets up in the morning. It is inspiring when we get to see pain recycled into something beautiful.

But what if we don’t see our pain made into something new?

When a terminal disease progresses. When a marriage dissolves. When sadness turns into deep depression. When there is just brokenness, like an old, collapsed barn rotting in the field.

Todd faces ALS with courage, born out of love for me and our children. I can’t imagine him telling me he hates me or biting me in frustration, but that is the depth of brokenness some of my fellow spouses experience daily in caring for their pALS.  Frontal lobe dementia. Emotional liability. Or just overwhelming grief.

Where is the beauty then, when not only the body is broken but the mind as well?

After Beth fails to see God’s goodness, Grandma says,  “Danny offered to take it apart and haul it away, but I like having it there. Sam built that barn, and when I see that weathered barnwood, I think of him. It’s still beautiful, even in its brokenness.”

The enduring value of the barn is not in what it does or what it can be repurposed to do, but in the love of and for its creator.

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