Oddly Normal Déjà Vu

August 20, 2019, by Kristin Neva

Life with ALS is absurd when I think about it. It’s so different than it was before the disease, and with each setback, life gets even stranger.

We tried to maintain a normal life, but nothing seems normal about feeding one’s husband in a restaurant. Just a year ago, Todd preferred to eat as independently as he could, so we would ask the waiter to bring a stack of plates to put under his dish. I’d cut up his food and push it to the edge, and he would bend down and eat face-to-plate.

Before we had an accessible van, Todd was too heavy for me to get him out of his wheelchair and into the passenger seat by myself. I’d look for a familiar face in the crowd leaving an event or restaurant, but more often than not, I’d have to approach a brawny stranger.

“Excuse me. My husband is disabled, and I need help pulling him out of his chair so he can transfer to our van. Would you be able to help us?”

No one ever turned me down, and I cherished the helpfulness of people in our small town, but it felt strange.

Now, choking is an increasingly more frequent part of our bizarre world.

At a restaurant the other day, I could see panic in Todd’s eyes. He clearly wasn’t able to swallow his food, so I reclined him and repeatedly pressed on his abdomen until whatever was lodged in this throat came out.

Others looked on in horror, but for us, it’s the new normal.

It’s getting harder and harder to remember the life we once lived.

I do recall Todd saying to our toddlers, “You can pick your friends, you can pick your nose, but you can’t pick your friend’s nose.”

Now, my best friend can’t pick his nose. Yup, that’s on me, along with toileting and all other personal care tasks.

This is definitely not the life we had imagined we would live.

I had also never imagined we’d become hockey fans. Neither Todd nor I followed any sports. We both preferred to be the ones doing the physical activity, such as hiking or biking. Now, we cheer on the Michigan Tech Huskies. It’s something we can still do together as a family.

From the accessible seating right up against the glass, I looked around the crowded arena one evening and I was struck with a realization. Most of these people are able-bodied. They could be out doing something physical, and yet they choose to be here.

It felt oddly normal. I even found myself enjoying the game, vicariously competing through this team — my team. Who knew watching sports could be so much fun?

Hockey games are easy. It can be much more work to be normal.

We wanted to give our kids a spring break vacation seven hours away in the Twin Cities. We found a truly accessible hotel that could accommodate a lift under the bed and in the bathroom. We had to arrange for a Hoyer lift to be delivered to the hotel, and a nighttime caregiver traveled with us. The van ride was hard on Todd, and we both dreaded being away from our overhead lift, but the next day we made it to the Science Museum of Minnesota.

We went to the museum’s Omnitheater. Because Todd was in his chair, they let us into the theater before others were allowed in, and our whole family sat together.

When checking out the exhibits, our son Isaac went off in one direction with Todd, while I let our daughter Sara choose exhibits that were of interest to her. In that moment, I had this lovely feeling: We were enjoying an activity together like we would have done in a life without ALS. It was like déjà vu. For a moment, life seemed really normal.

***

This article originally appeared in ALS News Today: Normal Déjà Vu: Life As We Used to Know It.

My Most Personal Novel

August 11, 2019, by Kristin Neva

Across the Bridge on Amazon for Kindle

Across the Bridge is on sale for 99 cents on Kindle! I was thrilled to see it reach #2 in Contemporary Christian Romance books yesterday on Amazon. If you haven’t read it, now’s the perfect time to buy — or forward this to a friend.

Across the Bridge felt the most personal of the three novels I’ve written. As I’ve watched Todd’s body slowly decline these past nine years, I’ve struggled with God and the suffering in the world.

I heard some advice on writing — “Tell a story about what you don’t understand.” When story is an exploration, there’s authenticity in the writing. Life is hard, so how do we persevere? How do we make peace with questions that can’t be answered?

I wrestle alongside my character Marcella Seppa as she struggles and grows. She’s hesitant to get close to widower Drew Smith, afraid of hurting his son AJ in the same way she was hurt when her father remarried within a year of her mother dying.

Across the Bridge is the only novel that made me cry while writing it, as if I was watching movie scenes unfold in my mind as I explored themes of love, loss, faith, doubt, and also beauty and joy.

I hope that as you read Across the Bridge you’ll feel the richness I felt writing it.

Embracing the Joyful Sadness of Life

July 31, 2019, by Kristin Neva

This year for Father’s Day, I ordered a basket of gourmet caramel apples from Amy’s Candy Kitchen, a little shop in Cedarburg, Wisconsin. Amy’s Granny Smith apples are large and covered with sweet caramel, salty pecans, or other nuts. It is an explosion of flavor, magnifying both the sour and sweet. I added a note to the gift basket that read, “Where it all began.”

While Todd and I were dating, we would drive north from Milwaukee to the historic town of Cedarburg, situated on the banks of Cedar Creek. We’d poke around in gift shops, watch a blacksmith practice the ancient craft, pick up caramel apples, and walk along the river. Cedarburg was, and remains, a special place for us. Over the years, we’ve gone back for apples while passing through town, and now that we’ve moved away, we order them on special occasions.

Living with a loved one’s terminal diagnosis is a heartbreaking, sour part of life. Experiencing such intense sadness has opened my eyes to the suffering of the world — abject poverty, violence, disease, and illness pervading the cosmos. I find being human is increasingly difficult. Yet, at the same time, I am more aware of the beauty that co-exists with suffering; the sweetness of life. The sun rises and sets in a glorious wash of color. Deer prance and jump through fields of daisies. Flowers bloom. Birds chirp. Children giggle.

I see this contrast play out in our own lives. With each birthday we celebrate, each family photo we take, there is always the nagging thought: “I wonder if this is the last.” The last birthday; the last photo. The sadness of that thought is juxtaposed with joy. “We’ve made it this far! One more memory in the bank!”

This spring, I celebrated my son’s first hit at a Little League baseball game, aware that Todd was missing the moment because the weather was too cold for him. When we returned from the game, however, Todd asked Isaac for all the details of his first hit. Similarly, I took a video of my daughter’s marching band at our Bridge Fest parade so I could show Todd, who was comfortable at home in his office. Later, Todd watched the videos with Sara by his side.

Even with sadness, there is joy. We are watching our children grow into themselves. They do well in school. They’ve matured and gained confidence. They are helpful and compassionate. We lean into what we have left.

We recently discovered that McLain State Park installed a walkway down to the edge of Lake Superior. Last week, during a particularly warm evening, I held Todd’s hand as the kids explored the shoreline while the sky turned a brilliant pink. That moment wasn’t dampened by his ALS. Rather, it was made sweeter.

That is the paradox of joyful sadness. The suffering makes me appreciate the simple joys so much more.

***

This article originally appeared in ALS News Today: Embracing the Joyful Sadness of Life.

Fighting Is Winning

July 16, 2019, by Kristin Neva

I am by nature a fixer. After my husband, Todd, was diagnosed with ALS, I found out modern medicine didn’t provide a cure. There’s no option for surgery. No drugs significantly improve outcomes. So, I turned to searching the internet for alternative therapies that might help.

“I want to fight this disease,” I told my counselor.

“If you’re fighting, then how do you define winning?” he asked.

I pondered the question before replying. “Fighting is winning. We win if we don’t give up.”

I wanted to at least try supplements, juicing, and nightly massage — things that wouldn’t cause harm or break the bank.

Todd was on board.

We purchased a massage table, and I worked on his spastic arms and legs every night, which helped his weak muscles function better. He walked less stiffly and had more use of his hands.

Since his bloodwork showed he had low levels of magnesium and calcium, he wanted to get off his proton pump inhibitor, which he had taken for a decade to control heartburn.

To alleviate his heartburn, he went on an elimination diet and found he was sensitive to gluten. By avoiding wheat, he was able to rid himself of the chronic condition that had plagued him his entire life.

He took loads of supplements, vitamins, and minerals that, according to limited anecdotal reports, had helped others with ALS. Trying something, even if there was no scientific proof it helps, felt better than doing nothing.

It was hard to say if the supplements helped, but they were relatively inexpensive and his neurologist thought they wouldn’t hurt. He even recommended a few.

Todd did feel better with what we were doing. He felt less fatigued, and his muscles cramped less. He said he planned to die in the best health possible.

Even with all we did, the disease progressed. Now nine years later, Todd is paralyzed with no use of his arms or legs. He can still speak and swallow, but his breathing is getting dangerously weak, and he will soon need a feeding tube. But I look back on those monies spent on all the supplements without regret.

He needed to try something for our mental health.

We have come to accept the natural course of this disease. Todd has since stopped taking several supplements, as it’s getting more difficult for him to swallow big pills, and some of them didn’t seem to make any difference. He still avoids wheat — though he can now cheat on occasion without consequence — and massage helps him sleep at night.

I’m still a fixer, but in recent years I’ve channeled my fighting energy into managing the disease and making him more comfortable.

I try to stay one step ahead of the equipment he will need at the next stage of the disease. We plan to see a pulmonologist this summer after his next breathing test, and we’ll ask if a BiPAP might help him sleep better at night.

My most recent find, which I’m quite excited about, is an adjustable bed frame that’s compatible with Todd’s Amazon Echo smart speaker. He can ask Alexa to tell his bed to raise the head, raise the feet, or turn on the massage.

Todd is now getting longer stretches of sleep — up to 2 1/2 hours. This doesn’t solve all our nighttime issues, as Todd is still a side sleeper and needs someone to turn him and scratch those incessant itches, but it does give him a bit of independence.

We may not have cured the disease, but we keep fighting to manage this beast, so we are indeed winning!

***

This article originally appeared in ALS News Today: Faced with Incurable Disease, Fighting Is Winning.

Prepare, Not Protect

Todd and Sara, October 2010

July 9, 2019, by Kristin Neva

My world changed forever 13 years ago when I became a mom. I lay in the hospital bed with my newborn daughter’s crib next to me and my husband sitting nearby. I was in so much pain I felt like I couldn’t move.

“Sara’s turning blue!” Todd said, panicked.

My pain ceased to exist. I leaped out of bed, pulled the call cord in the bathroom, ran into the hall, and yelled, “Baby’s choking!”

A nurse came quickly, but by that time Sara was already fine. Todd’s lifeguard training had kicked in, and he had turned her facedown and patted her back to help her get the mucus out.

With my heart still racing, I held my little girl, acutely aware that my precious child was vulnerable. It was my duty to protect her from the world.

Every night I prayed, “God, thank you for Sara. Keep her safe and healthy, and help her to keep breathing.” I worried about sudden infant death syndrome. I charted her poops. I researched vaccines, nipple confusion, and BPA. Sara grew, and I managed our lives.

On a family vacation to Disney World when Sara was 3 and I was pregnant with my son, Isaac, Sara picked out a small, stuffed dog to bring home as a souvenir. Lady was Sara’s new best friend. Sara took her everywhere and slept with her.

One night, we couldn’t find Lady at bedtime. Sara was in tears. After a week of searching the house and looking into my heartbroken little girl’s eyes, I decided to buy a replacement Lady.

It was not so easy. The Disney Store said Lady was available only in the theme park. Eventually, I found a seller on eBay who made occasional trips to the park to purchase toys and then resold them for twice the price to distressed parents like me. A new Lady arrived, and all was right with the world.

But a year later, Todd was diagnosed with ALS, and our world changed forever — again.

I felt blindsided, struggling to process the diagnosis. This was a problem I could not solve.

My mind raced. What was our future going to be? Anxiety filled me. How was I going to raise the kids by myself? How would I support them with my liberal arts degree?

For the sake of my family, I was desperate to get a grip, so I found a counselor. “I want my children to feel like they are in a secure world,” I told him. “I want to protect them from pain.”

“You can’t protect them from pain,” he said, “but you can prepare them to go through it.”

We all need to prepare our children to face life’s inevitable challenges. Children who have a parent with ALS will have that struggle to deal with. Other kids will face different problems.

One evening during the year after Todd’s diagnosis, our family, along with my mother, went out to eat at Red Robin, which is much loved because they offer the kids free balloons.

Later at home, the kids were playing, and we heard a loud pop! followed by silence, and then “Whaaa!” Sara’s balloon had hit a hallway light. She was heartbroken.

My mother tried to distract her, but Todd said, “That’s OK. She needs to grieve.”

Supermom me would have promised that we’d get a balloon at the dollar store in the morning, but I let Todd take this one, instead.

“Come here, sweetheart.” Todd grabbed her hand and led her to the living room. Sara crawled up onto his lap. He held her, and she cried. He whispered, “It’s OK. It’s OK.”

Before Todd’s diagnosis, I tried my best to shield my children from pain and hurt. Post-diagnosis, I sometimes let them be sad so they can develop grieving skills.

If our child is being bullied or if we need to mediate sibling conflict, we should obviously step in and act, but at other times, we can recognize that our role is to support and comfort through the pain rather than try to erase it.

***

This article originally appeared in ALS News Today: Sometimes in Parenting, We Decide to Prepare, Not Protect.

A Weed Is a Plant Without a Purpose

June 11, 2019, by Todd Neva, foreword by Kristin Neva

“A weed is a plant without a purpose.” On the nine year anniversary of Todd’s diagnosis, he talks about finding purpose in living with ALS.

If I had made the video, I would’ve added a bunch of other meaningful things he does — Helping me with my creative projects. Editing my novels. Listening and talking me down when I’m upset. Coaching me on various household projects. Laughing with me as we watch movies or shows.

And the best thing is being a great dad to our kids — watching movies with them, affirming them, encouraging them. And co-parenting. If we both think something the kids want to do is a bad idea, then I know I’m not being an overprotective mom.

Thankful for my husband! Happy Father’s Day!

Video transcript:

A couple days ago a friend of mine stopped by. She is a caregiver of mine who had volunteered for a couple years turning me at night. She stopped by. She was telling me about the first butterfly, monarch butterfly, that she saw of the season, and she’s a little concerned because the milkweed is not out yet here in the upper part of Michigan.

It reminded me of a scene in my wife’s book Across the Bridge. Marcella is in the garden and a monarch butterfly flutters by, and it lands on a milkweed. And Marcella thinks to herself that that plant she had once considered a weed is sweet sustenance for that monarch’s flight to Mexico.

A weed is really just a plant with no purpose.

People ask me how I get by with a relative positive disposition, and I will say it’s because I have purpose. There’s things that I do that I busy myself with. I intentionally seek out challenges and projects.

I’m on my church’s communication team and I help with graphics for promotions and advertising and things like that.

I preach on occasion. I write a blog, and I do these videos.

Now not everybody has got the skills I have to do those specific things, but there are things that everybody can do. There’s something that anybody can do.

Even if your purpose in life is just to endure suffering to get by, to manage this disease with a certain level of grace, and to help your caregiver or your children cope with what is hard for them too

Some nights I lie in bed and I’m in pain, and I see it as my purpose to endure that pain for just another hour, just to give my caregiver, to give my wife, just one more hour of sleep until I have to wake her up.

Sometimes I breakdown. Sometimes I just can’t stand it. I have to call out for her. I can’t make it an hour, and that’s okay. At those times you shake it off, as as much as a guy with ALS can shake it off, you shake it off. You move on and then the next day you try to get by with a purpose.

You need to pick up something that’s heavier than yourself — well with ALS it’s really easy to find those things that are heavier than you for a purpose in life.

It could be the most trivial thing. It may be to have a pleasant disposition or maybe it’s helping with the finances, using adaptive technology on your computer to balance the checkbook. Become an Internet troll, whatever, something that you can do. Just find a purpose, and do it. You’ll get through this.

Life is suffering. It’s hard, and if you haven’t suffered it’s just because you haven’t lived long enough, so we shouldn’t be surprised by it. We just have to get through it.

Resurrection

April 18, 2019, by Kristin Neva

Todd had his breathing tests this week, and it wasn’t good news—it’s never great because his breathing weakens every 6 months, but usually just a few points. However, the decline was 9 points in the last 6 months, 16 points over the last year, which means it’s time for him to get a feeding tube—before the surgery would be life-threatening. This is new territory for both of us, and it’s disheartening.

Heading into Easter, it’s tough when one’s reality doesn’t fit the narrative we often hear of redemption promised today. I explore this theme in Across the Bridge. When Marcella Seppa meets her new tenant, widower Drew Smith, a spark ignites, but she won’t consider dating him. She doesn’t want his son, AJ, to experience the hurt she felt when she was young. Marcella lost her mother when she was fifteen years old, her father quickly remarried, and her stepmother pushed too hard to foster a relationship her. Well-meaning people used Christian platitudes in an attempt to comfort her, but it resulted in Marcella having a faith crisis.

Drew is at church on Easter with Marcella who rarely attends anymore.

A guy wearing a polo shirt and khakis stepped to the mic. “Welcome. I’m Pastor Dave. We’re so glad you could join us for Resurrection Sunday. First off, we’re going to hear some stories about resurrection in the lives of ordinary folks who have found hope in Christ.”

A video—obviously done in house, as Drew recognized the background from the lobby—featured a young couple and their beautiful, adopted eighteen-month-old daughter. They took turns sharing about their struggles with infertility. They kept their faith in God, and their prayers were answered, but in a way they didn’t expect. Next up was a middle-aged couple sharing their story of an affair. They had been on the brink of divorce, but then the husband repented, his wife found grace to forgive him, and they both found healing in Christ. Lastly, a woman talked about being healed from cancer. The doctors had found a tumor in her brain. It was terminal. The tumor disappeared, and there was no scientific explanation.

Marcella sat stiffly, looking down at her lap. Drew grabbed her hand.

“God so desperately wants to bring healing in our lives,” the woman on the video concluded with a gentle smile.

When the congregation burst into applause, Marcella pulled her hand away and stood. She exited the sanctuary.

It was a tough service for Marcella. She remembered that when her mom was sick, there had been prayers, promises had been claimed, and Marcella couldn’t understand why God would pick winners and losers.  It’s tough when experience doesn’t fit the narrative you’ve been taught. If you pray hard enough, long enough, have faith, rid your life of sin, then there will be healing.

But what about when mental or physical illness continues for years? When a marriage is not restored. When there isn’t healing. When needs go unmet. These don’t fit the narrative.

Where does that leave us on Resurrection Sunday?

We need to change the narrative we tell. The writer of Hebrews said that we do not see all things subject to Christ. So let’s just say that disease, broken marriages, and mental illness are not of God. Not his plan. Not his will.

As Christ followers we’re called to fight evil. To pray. To act. To give. To serve. And Christians have done this as society developed. They’ve built hospitals, orphanages, schools. They’ve cared for the sick. They’ve fed the hungry. This is often the only resurrection we see on earth. We pray “your kingdom, your will be done, on earth as it is in Heaven” and then we act to make it happen as much as we can, because we are God’s people, his presence on earth today. And we hold onto hope that this world is not all there is.

My character Beth processes her grandma’s ALS diagnosis in my novel Snow Country.

“He is risen,” Pastor Chip greeted his congregation on Easter morning. A smile broke across his face.

“He is risen, indeed,” the congregation responded. Someone started clapping. Soon, nearly everyone joined in.

“Hallelujah,” Grandma shouted, her hands not cooperating to clap.

Lilies sat on the steps in front of the chancel. Behind the pulpit, a large urn held palm branches children had paraded up the aisle the week before. Resurrection Sunday was a celebration of life, real life in Christ. After the darkness of winter, spring was coming, though it would be a white Easter in the Keweenaw, Beth thought ruefully. In California, Mother would be hiding Easter eggs in the yard for Cora and Tate to find.

Danny’s rotating schedule once again made him available on Sunday, and he sat by Beth’s side.

The message of resurrection found residence in Beth’s heart. Yes, Lord, yes. Because of you, because of your love, I am filled with love this morning. She looked to Grandma on her left, and then to Danny on her right. He reached out and squeezed her hand.

All their problems were temporary. Life on earth was temporary. Ultimately, they would be with Christ. New bodies. No more sadness. No more tears. Beth rejoiced in the resurrection that guaranteed her resurrection, Grandma’s resurrection.

This we can celebrate. Happy Easter!

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.