Category Archives: Uncategorized

Carry Your Cross

April 8, 2019, by Kristin Neva

As we journey through lent, one thing that strikes me is the human frailty woven throughout the events leading up to the crucifixion.

The disciples could not stay awake to pray with Jesus in the garden.

Peter, who had boldly declared that he would never fall away, that he would go to prison or to death, denied Christ three times.

Much earlier, Jesus had told his disciples, “Whoever wants to be my disciple must deny themselves and take up their cross and follow me.” We read in the book of John, after Jesus is tried before Pilate, Jesus literally carries his own cross.

Traditionally, Christians have meditated on the stations of the cross which include Jesus falling under the weight of that cross. It’s not specifically stated in scripture, however in the account of three of the gospels the soldiers force Simon of Cyrene to carry the cross. After Jesus has been sleep-deprived, after he had been mocked and beaten, it is likely that he stumbled under the weight of that cross—that he physically could not go on.

When Todd got a bad cold several weeks ago, he was dependent on others to press on his abdomen so he could cough. In the midst of those intense days during which Todd couldn’t be left alone for fear he would choke on mucus, one of our night-time caregivers called in sick. I was exhausted. Like those disciples who couldn’t stay awake with Jesus, I knew I couldn’t stay awake, pressing on Todd’s chest all night. I cried as I called through my back-up list and nobody was available until I neared the end of my list. He’s an artist, not a CNA, not a nurse, but he’s a friend who was willing to come so I could sleep a few hours. The human body can only physically do so much.

Our friend helped carry the cross, a little bit of heaven in a difficult situation. Todd recently observed that he has had ALS nearly 20% of his life. “That’s a long time to be sick,” he said. He’s been paralyzed for five of those.   It’s too heavy of a cross to bear—so we are dependent on others—those who volunteer, those who give money so we can hire night-time care. In the midst of this seemingly impossible situation, when people come alongside us, our spirits are lifted, we feel like we are not alone when a bit of God’s kingdom is displayed on earth.

This Lenten season I feel solidarity with the disciples who couldn’t stay awake, with Peter, with Jesus who couldn’t carry his cross, with humanity. Our human bodies have limitations and we need each other.

Dusty Road

March 6, 2019, by Kristin Neva

“Remember that you are dust, and to dust you shall return.” That truth, which the church is called to consider on Ash Wednesday, is set before those with ALS every day.

Each time a muscle cramps on its way to burning out. Every time there is a new loss of function. When car keys are surrendered. When a wheelchair is ordered. When basic needs require assistance. When choking on dinner becomes the new normal. Living every day with the knowledge that you or your loved one may be one respiratory virus away from death.

Today, on this Ash Wednesday, both Todd and Sara have a bad bug. It started a couple days ago with chills, a fever, aches, and a cough. Sara’s cough is deep and painful, but it’s productive. Todd can’t cough as deeply, and he can only cough a few minutes until his diaphragm is too tired. We’re using medication to loosen and thin the secretions, cough assist devices, and a technique that looks like the Heimlich.

At 5:30 this morning, the night caregiver woke me to help Todd. I could hear the fluid in his lungs as he said, “Stacked breathing!”

With my hands clasped and placed under his sternum, I counted “1, 2, 3” — and he took short breaths on each count — and when I said “cough,” he exhaled. He swallowed the mucus and said, “Again.” We repeated that until he could breathe freely.

“Do you think this is it?” I asked him, anxiety building within me.

“I think I’ll make it through this one,” he reassured me.

Lent reminds us to consider the tenuous nature of life. We’re all on a dusty road to death. Leading up to Easter, Christ’s followers watch the object of hope and adoration go to the cross.

The Most Beautiful Woman in a Hundred Years

January 16, 2019, by Todd Neva

A paragraph in The Princess Bride caught my eye.

Before I get to that paragraph, let me explain that the book is different from the movie. The central conflict in The Bride chapter is who is the most beautiful woman in the world. Buttercup was barely in the top twenty at the beginning of the chapter, which was quite remarkable considering she didn’t like to bathe or brush her hair.

Her love for Westley quickly propels her to the eighth most beautiful woman, and then she gets word that Westley died at the hands of the Dread Pirate Roberts.

Buttercup retreats to her room in despair, and when she emerges “she never looked as well. She had entered her room as just an impossibly lovely girl. The woman who emerged was a trifle thinner, a great deal wiser, an ocean sadder. This one understood the nature of pain, and beneath the glory of her features, there was character, and a sure knowledge of suffering. She was eighteen. She was the most beautiful woman in a hundred years.”

This is the type of beauty possessed by the female protagonists in Kristin’s books. There is an element of pain in each of their stories that matures them, gives them depth of character, makes than ever more appealing to their love interests.

Kristin writes authentically from her own pain, and she too has become more beautiful over the last several years.

Legacy of George HW Bush Seen in Quality of Life of People with Disabilities

December 10, 2018, by Kristin Neva

George HW Bush signs the ADA into law in 1990

I cried as I listened to a tribute to George H. W. Bush, realizing how much he impacted our lives. In 1990, he signed the Americans with Disabilities Act, which ensures that Todd has access to services and buildings that improve his quality of life.

Long before the ADA, culture and attitudes regarding people with disabilities were changing. The Rehabilitation Act of 1973 extended civil rights to people with disabilities. That law banned discrimination on the basis of disability by recipients of federal funds. The Department of Health, Education and Welfare established regulations to implement the law in 1977.

During the Reagan administration, Vice President Bush led the Task Force on Regulatory Relief, however Bush heeded the concerns of the disability community and ensured that society did not take a step backward, keeping intact the regulations that gave access to people with disabilities.

The regulations he supported ended up being the basis for the ADA, which extended the civil rights of people with disabilities to all public accommodations.

George H. W. Bush personally benefited from the bill he signed. After developing Parkinson’s disease, he still enjoyed getting out, even in his wheelchair.

Because we live in an old community, I can see what life would have been like if Bush hadn’t supported the regulations that came out of the Rehabilitation Act, or if he hadn’t signed the ADA into law.

Todd has no way to access many local businesses and restaurants that were built at the turn of the twentieth century and grandfathered into a perpetual state of inaccessibility. One step to enter a business is insurmountable in his 400-pound power wheelchair.

He couldn’t attend my daughter’s Suzuki violin recitals in the old building where I had attended elementary school. Last weekend, he easily wheeled into my son’s elementary school, which was built during Bush’s first year in office.

Our life outside of our accessible home is dictated by which buildings Todd can access. The church we attend. Restaurants we patronize.

He could attend the all-school production of The Little Mermaid, in which our daughter played the part of a princess. The historic Calumet Theatre has been modified to be accessible with a ramp going up to a side door. It is possible for him to get inside, but the old auditorium certainly wasn’t designed for wheelchairs with aisles too narrow and steep for safety or comfort.

Contrast that to the modern Rozsa Center for the Performing Arts at our local university, where we watched our daughter’s choir performance. We entered at ground level. He parked his chair next to companion seats, so our son and I could sit next to him with unobstructed views of the stage. We enjoyed the performance without logistical stress.

These may seem like little things to healthy people, but they make a world of difference in the life of people with disabilities. I’m so grateful we live in a society that values the least fortunate.

We could still do more. Hopefully in the next thirty years, we’ll see additional changes that would further improve life.

It’s difficult to travel even an hour from home, since most bathrooms and hotels do not meet the needs of those with paralysis. I imagine a country where accessible bathrooms and hotel rooms have overhead lifts. Freedom!

But traveling is the least of our concerns, given that life at home is still difficult. The biggest need for the ALS community is caregiving.

Through Medicare, we get three hours of caregiving assistance each week—two showers. However, Todd requires virtually twenty-four-hour assistance, including being turned at night so he doesn’t lie awake in pain and develop bedsores. I tried to provide that care, but my efforts were unsustainable, mentally and physically, after more than a year of not sleeping for more than an hour at a time. Now we, like many middle-class families with ALS, need to fundraise to pay out-of-pocket for help with the extensive care needed. It’s either that or sleep-deprivation for the spouse, which is what often happens.

Thank you to the friends and family who help us pay for Todd’s nighttime care.

We need Medicare reform so that families with severe disability can get a reasonable amount of home health care—so basic needs are met. After all, dealing with disability is something that might lie ahead for any of us or those we love. We are all one diagnosis or one accident away from paralysis.

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.