Three Thanksgivings

November 23, 2015, by Kristin Neva

IMG_0538-1I try to practice gratitude. I have a long list of things for which I am thankful: Being married to my best friend. The health of our children. A handicap-accessible house. Long-term disability insurance. My parents next door to help us. A supportive church. Safe schools in a small community.

Even as I write this list, I realize the tenuous nature of everything on it. Last week, my kids came home from school and described the lock-down drills they had gone through. Something I didn’t have to do as a kid. Something school administrators didn’t worry about back then. The kids hide behind the teacher’s desk, lights turned out, window shades drawn. The teacher locks and barricades the door and they all sit in silence until the all-clear is given and they find out that yes, it was really a drill.

Life is uncertain, and while we should give thanks for the good in our lives, doing so highlights the flip-side of those blessings. During this season of life, my gratitude list is constantly shifting. Thanksgiving that Todd can walk turned into to gratitude that, after an almost two years, his wheelchair was finally approved by our insurance last week. Thank you, God!

Todd preached a message on Sunday that encouraged me. It wasn’t a message about Absolute Thanksgiving, when we have health, wealth, and prosperity. And it wasn’t even a message about Relative Thanksgiving when we can look at what we have left or compare our situations to how bad things could be. He preached about Obedient Thanksgiving, which is choosing to give thanks even in the midst of lament.

Check it out:


Miss Joy

September 29, 2015, by Kristin Neva

IMG_0203Sara jumped off the court and threw the ball into the basket, winning a round of lightning. She turned to me and smiled, and I gave her a thumbs up. She bounded from one side of the court to the other.

The week before, at basketball camp, Sara wasn’t able to make a basket. Her throws fell short of the rim, but I knew she was just as strong as the other girls. She can do cartwheels and flips, and she can cross the monkey bars. I told her, “Today, ask your coach what you need to do to get the ball higher.” I didn’t know how to help her — I was one of those kids picked last during gym class. Before I left for my workout, she was already talking to her coach.

That’s my Sara. She’s confident and coachable. She’s energetic and optimistic, and not much phases her, except for creepy, Halloween displays. Some creature jumped out at her in a Halloween aisle at Menard’s when she was four, and she’s been scarred.

At Snap Fitness, I ran on the elliptical and listened to a podcast with author Elizabeth Gilbert. She talked about fear and the creative process. She talks to it, as if it’s a person, saying something like, “Fear, you’re not all bad. You saved my life many times and kept me from dangerous places and people, but you can back off now. I’m not going to die writing this book.”

Parts of me compete for attention. Joy delights in watching Sara grow into her confident, athletic self. Anger demands to know why God won’t answer our prayers for healing, or at least halt Todd’s decline so we could adjust to life with disability. Sorrow fills me when I think that this life is normal for my children. “Will Daddy always have ALS?” Isaac asked me the other day. He remembers when Todd was able to draw a tractor for him to color. “Me and Sara are getting bigger. Daddy’s getting littler,” Isaac observed a few years ago when I helped Todd get into the van and put on his seatbelt.

It’s the ying and yang of life. You can’t have the love without the grief. The joy without the sadness. Being human encompasses both.

When Todd was first diagnosed I sought out a woman who had lived with her husband’s ALS for ten years. They had a ten-year-old son. I told her, “I’m hoping Todd’s disease progresses as slowly, but I don’t want to spend the next ten years grieving.”

“You learn to compartmentalize it,” she told me.

It’s a good thought but hard to do. I never forget the cloud we live under, even as I have unbridled delight in watching Sara grow into the person she’s becoming. My feelings consume me. One minute happy. One minute sad.

After my workout, I picked up Sara from basketball camp. We headed to the Halloween Superstore to get a blue wig — she wants to be Joy from the movie Inside Out. We ordered a little, yellow dress from Kohl’s. She will make a convincing Joy, not just in appearance, but in her personality. She embodies Joy.

As we neared the store, she froze. She stared at a bloodied, screeching clown. She refused to go in. I asked an employee if I could bring the blue wig out to the hallway to have her try it on. “Sure, there was another girl who wouldn’t come in either.”

The wig fit perfectly, and Sara beamed. “I’m going to be one of the fruit of the Spirit,” she told me.

“Yes you are.”

She got quiet, then asked, “Why isn’t Isaac scared to go in there and I am?”

The prior afternoon, I brought Isaac in there to buy a Police Boy outfit. He loved the experience, and came home to tell Sara about a wrinkled witch that cackled and said, “I’ll have you for dinner.”

“Your fear is okay,” I told her, channeling Elizabeth. “Talk to it. Tell it, ‘Fear, you keep me away from nasty, scary stuff and that’s a good thing. You can go away now.’”

My confident, coachable girl repeated the line, and Fear backed off. Her face relaxed.

I’m going to try the same with Sorrow when it overwhelms me. “Sorrow, you’re helpful because you help me love other people and have compassion for their suffering, but you can’t have all the space, because Joy lives here too.”


Don’t Rush It

September 7, 2015, by Todd Neva

IMG_0113“How does it feel to be six?” Kristin asked Isaac last Monday.

“You know, I’m almost seven,” he said.

“Oh no, don’t rush it.”

Kristin’s fellow caregiver gave her young son the same advice after somebody gave the boy a well-intentioned pep talk and told him when his dad passes away he’ll be the man of the house.

“Mom, can I still sleep with a nightlight when I’m the man of the house?” the boy asked, unsure if he’s up for the task.

“Of course, I still sleep with a nightlight,” the mother comforted him, and then she told him he only needed to worry about being a child.

Five years ago when I was first diagnosed with ALS, Sara was four and Isaac was nine months old. The doctor wouldn’t give me a prognosis then, rather he said he’d evaluate me in a few months and from there we should have an idea. The average prognosis is three to five years, but I saw ALS take a family friend in eighteen short months.

In the days after the diagnosis, I purchased journals for each kid and in them wrote letters until I could no longer bear the cramping in my forearm. There was so much to tell them, teach them, about life. I managed to get several of those lessons from my father while he worked on my car or helped me with house projects. A book of letters is a poor substitute, but it would have to do.

I wrote to Isaac, “Now, I am not going to tell you to be the man of the family. Your job is to be a boy first. I will make sure Mom has enough men in her life to take care of those things she needs a man to do. And I will make sure you have men in your life to teach you how to be a man. But do not rush it. Growing up takes time. Just enjoy being a boy, and the growing up will take care of itself. Love, Dad”

I’ve had the privilege of watching six years of my son’s boyhood. He’s everything a boy should be. He loves trucks and Legos. He likes to build and play outside. He’s rough at times, but tender with his mother and generous with the sister. In addition to all that boy stuff, he’s a big help.

He vacuums the floor and cleans the sinks. He does all the normal chores a boy should do. Of course, because I need care, he gets to help in ways other boys don’t. He puts my feet back on my footrests. He gets me a drink if I’m thirsty. He swats flies that bug me. He straps me into our accessible van.

We ask much of our boy, but the one thing we will not ask is for him to be a man.

Be Careful What You’re Thankful For

August 11, 2015, by Kristin Neva

IMG_2779We’ve had a few rough days. As Todd’s health declines, our old method of transferring him works only some of the time—when his feet aren’t too swollen. I had a couple rough nights in a row, getting up in the middle of the night to help Todd get comfortable. I was on edge—monthly hormone fluctuations and sleep deprivation don’t contribute to emotional stability. Both nights, I wasn’t able to fall back asleep, and I lay in bed crying and feeling forsaken. I prayed for comfort that did not come.

I tire of praying. Todd and I continue to pray for his healing every night before bed. I just did the math. We have been at this for over five years. That means we have prayed that God would heal Todd more than 1,825 times.

At night, when I’m tired and want to sleep but need to help my dear husband, I silently count as an alternative to crying or screaming. 1, 2, 3, 4…. I count to distract myself.

Sunday’s sermon on suffering also had me silently counting so I wouldn’t break down in tears. I lost it during the closing hymn, It is Well with my Soul. I headed to the bathroom and cried because it is not well with my soul.

Then, I walked downstairs to get my guitar. Two of my friends saw my tear-stained face. They listened to me talk about the difficult last few days, empathized with me, and prayed for me. I felt better.

I told them about my nighttime counting. One of my friends encouraged me to instead pray, “Thank you for my hands.” I might not feel thankful, but I can choose an attitude of gratitude that I have the strength to care for my beloved. I grudgingly agreed to try it.

That night as I was tiredly putting Todd to bed, I silently prayed gratitude and found that it did improve my mental health. When I woke up with Todd in the middle of the night, I again prayed, “Thank you for my hands.” It was better than counting the seconds until I could go back to sleep.

The next morning, I woke with shooting pain in my right arm. I laughed at the bitter irony. I finally thank God for my hands, then, wake with one unusable. Who am I? Job? Is this a test? Will she curse God and die? What the heck?

Shooting pain in my arm continues to flare up with slight movements like raising my right hand to my ear or using that hand to roll Todd onto the sling. I have a chiropractic appointment and a massage at the end of the week. Until then, I am down to one good arm for certain tasks.

This morning, cuddling up next to Todd, I screamed in pain when I lay on my right shoulder. I managed to get him in the sling and in his wheelchair using mostly my left arm. As I lowered him onto the toilet I said, “I am thankful for our overhead lift. I couldn’t do this one-handed with a Hoyer lift.”

“Be careful what you’re thankful for,” he said.

Everything we have can and will be taken, except for “an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you.” (1 Peter 1:4)

I am an American Christian and have been a part of a culture that consumes practical results-oriented teaching: 6 Steps to a Happy Marriage and 5 Ways to Raise Great Kids Who Love Jesus. I wish I could find 4 Steps to Overcome Grief and Emotional Pain. I pray, read the Bible, exercise, and practice gratitude. Four things. I should be able to overcome my sorrow and write a New York Times bestseller: How to be a Super-Christian in Times of Crisis. I long for a formula.

I’m increasingly aware and afraid that there is only one formula: death.

John 12:24-26:

Truly, truly, I say to you, unless a grain of wheat falls into the earth and dies, it remains alone; but if it dies, it bears much fruit. He who loves his life loses it, and he who hates his life in this world will keep it to life eternal. If anyone serves Me, he must follow Me; and where I am, there My servant will be also; if anyone serves Me, the Father will honor him.

The message of Christianity is the message of the cross—a message of life through death. Suffering. Sorrow. A death to self, desires, dreams. Servanthood.

But, one day, resurrection.

2 Corinthians 4:16-18:

Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison. While we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

God’s Gift of Ignorance

August 5, 2015, by Todd Neva

IMG_20150701_183235I thought my days of eating at The Fitz were over, but I keep finding creative ways to overcome obstacles. In this case, Kristin’s brothers, when they were up visiting from Texas, devised a platform system to get me over a step into the dining room of the 1957 beach-side inn and restaurant.

Kristin helped me into the building through the kitchen, while Steve and Nate set up the platform and ramps. I rolled up onto the plywood-topped pallet, carefully pivoted on the three-and-half-foot square deck, then drove into the dining room. It was worth the hassle for the best ribs in the Midwest.

I made it into Fitzgerald’s one more time, but I knew it may be my last. The pallet’s too heavy for Kristin to handle on her own. I took in the 180° view of Lake Superior with the sliver of Isle Royale 45 miles away on the horizon.

I savored every rib I could stuff into my stomach, which has shrunk — at least on the inside — to suit my reduced caloric requirements of being nearly motionless. The ribs I couldn’t eat I brought home for our almost-six-year-old Isaac. He was quite disappointed that he didn’t get to go.

A month later for Kristin’s birthday, we had yet another chance to go with the help of her parents. Lani helped me through the kitchen while Dave and Kristin set up the platform and ramps. Again, it was worth the hassle, and Isaac loved his bacon-wrapped filet mignon.

“When I grow up, we can take dad to The Fitz and won’t need anybody’s help,” Isaac said after dinner.

I delighted in his hope for the future, even though I knew how improbable it would be for me to eat at The Fitz when Isaac’s an adult. I’ll be eating from a feeding tube, if I’m even alive.

Isaac’s always thinking about me in his Lego designs and plans for the future. He builds Lego airplanes with accessible ramps. He plans to build a house with a basement, but with an elevator “so dad can visit.”

We’re honest with him and Sara about my health and what will happen to me. We talk of other pALS who’ve died, some shortly after diagnosis. They also know that some pALS live a long time, and that we don’t need to worry until breathing gets difficult.

In Heavy, Kristin writes:

In the first session, I described my overwhelming fear. The counselor explained worry affects us physically: “God hasn’t designed us to worry about the future, but to live in God’s grace for today.” … We aren’t designed to know the future, to have a probable life expectancy. In our case, modern medicine’s given us that. This disease isn’t like many others. With many other diseases, we’d have hope, at least in the beginning, that perhaps we could beat it. With ALS, there’s no treatment and no cure. We know how this is going to end. A hundred years ago, we wouldn’t have had this prognosis. Todd would have weak arms, but his probable future wouldn’t be mapped out. But we know his future, so we do need to plan as best we can—just not obsess about it.

I’d go a step further beyond saying we’re not designed to know the future. I’d say ignorance is a gift. God gave a gift of innocence to Adam and Eve, but they chose to disobey him and eat from the Tree of Knowledge of Good and Evil.

I don’t want to know too much. People asked if I’ve read Tuesdays with Morrie. No. I’m living it, so I don’t want to read it. Some find comfort in our book, Heavy, and I’m glad, but others like me prefer not to even think about it.

I’m focused on today. I’m five years into a disease that cuts most down quicker than they can adapt. I cherish every day and what I can do, such as help Kristin edit her second novel.

Yesterday, after our usual method of transferring me to the toilet failed, Kristin stuck out her chin and squeezed her eyes to hold back tears.

“What’s wrong, Buttercup, the edits weren’t too bad.”

She laughed her sorrow out.

I couldn’t imagine what else she could’ve been upset about. I’m already living on borrowed time, and we had an opportunity yesterday to find another creative way to overcome an obstacle.

Different Dads, Different Gifts

June 21, 2015 by Todd Neva

IMG_6472-001“If you don’t want him to hit you, then don’t smile,” Kristin said after I told Isaac to stop hitting me in the stomach.

I pleaded my case, “It’s how he says, ‘I love you.’ I just wish he wouldn’t hit so hard.” I said that second part loud enough for him hear.

Isaac strutted off like he’d won a boxing match.

When I was first diagnosed with ALS, Isaac was nine months old, and I feared he wouldn’t remember me. I hardly have a memory before age six. The few memories I have before six are scattered, but enduring. I cherish memories wrestling with my father — he lost all of his strength if I could get his socks off. Seriously, removing his socks was like kryptonite to Superman. My dad told me to punch him in the stomach as hard as I could. “Go ahead; it’s pure muscle.” I marveled at the size of his belly muscles, and roundness.

In somber reflection, I asked a friend of mine if he could teach Isaac to camp. I asked his uncle to teach him to hunt. His Papa would attend his sporting events. An old friend will visit next weekend, and I asked him to teach him to ride his bike.

Those are all things that dads should do, but they don’t make a father.

I remember my father worked hard.

I remember my father reading his Bible every evening.

I remember my father setting me straight when I was disobedient.

I remember my father speaking truth. “People are basically good,” I told him one day when I was in high school and feeling positive about the world. “No they’re not. Only God is good.”

Different dads have different gifts. As life turned out for me, I’m not going to teach him to throw ball or to swing a golf club. My gift to him is to be available. To show him a will to live through overwhelming adversity. To show him how I can be creative and productive even when I don’t get paid for it. To show him how to treat his mother, sister, and future wife. To let him know he’s growing into a fine man.

I tell him, “I love you,” by being available to be socked in the stomach.

I just wish he wouldn’t hit so hard.

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.

Let Us Add Eggs

eggs-001May 11, 2015, by Todd Neva

“I don’t believe your research,” a client at a large food manufacturer said twenty years ago. “The survey shows more people baking from scratch, but flour sales are down.”

Further analysis found fewer people baking from scratch, but more people said they were. It turned out that “scratch” changed definitions. Adding water, butter, and eggs to a mix was baking from scratch.

Mothers love baking from scratch. It’s a better display of their love.

The food scientists said they could make a better mix if they required only water and/or butter. The results will be more consistent, higher quality.

Our research showed women wanted to add the eggs. That fine line between baking from scratch and baking from a mix was whether or not she got to add eggs. The food scientists had to work a little harder to empower those women to add their own eggs, because people like to do things themselves.

I like to add my own eggs. I like to do things myself. Kristin could do a better job on my teeth, but I prefer to cradle the spin brush in my paws and move the tip around with my tongue. Kristin could feed me, but I prefer the waitress bring a stack of plates to lift the food closer to my mouth so I can eat independently.

I’m happier when I’m independent. Engineers have worked hard to empower me to do things myself. The touch screen on my iPhone allows me to call, text, and access email. I can’t use a regular phone or even a modern flip phone because I can’t press the buttons. I have a window that opens up to the world that sits on top of my desk, and I have a trackpad mouse and the clicker at my feet. I can’t use a regular mouse. I use dictation software. I can’t use a regular keyboard.

With a progressive neurodegenerative disease, I’ll continue to adapt. Eventually, I’ll need eye-gaze technology to control my computer. When I can no longer speak, I can use the Dynavox. This amazing speech generating device gives voice to the voiceless. It is expensive, but for only fifty dollars more, the manufacturer will enable a little feature that allows users to make calls, send text messages, and access the Internet.

Many people with ALS (pALS) can’t afford the Dynavox, but fortunately Medicare pays the thirteen monthly rent-to-own fees for the unit, after which time the patient owns the unit. Unfortunately, during the rental period, the government prohibits the manufacturer from turning on that little module that gives so much independence to mute quadriplegics. For thousands of dollars, pALS are given a voice, but they are denied from spending fifty dollars of their own money to have a window to the world.

The feature can be turned on after the thirteen-month rental period, but that’s too late for many pALS. To add insult to injury, if the person ends up in a skilled nursing facility or hospice care, Medicare will no longer pay the rental fee and will require her to send the machine back if she is not able to purchase it outright. The patient is left lying in bed unable to communicate her most basic needs, even unable to utter a distress call in a life-threatening situation. Communication does not simply improve quality of life; it preserves life.

Alas, there is hope. On April 22, 2015, the US Senate passed The Steve Gleason Act (S. 948). The bipartisan law, if it passes the House of Representatives and is signed by President Obama, will allow people to upgrade their speech generating devices, if they wish to pay the extra money for that liberating feature. The bill would also end the cruel practice of taking away a person’s only way to communicate in the final months of her life.

Tell your US Representative to pass The Steve Gleason Act (S.948/H.B.628).


UPDATE: As of July 30, 2015, The Steve Gleason Act is the law of the land. 

U.S. Sen. David Vitter announced that President Barack Obama has signed S. 984, The Steve Gleason Act of 2015. The Steve Gleason Act, authored by Vitter, will make speech generating devices (SGDs) more accessible, helping patients diagnosed with diseases such as Amyotrophic lateral sclerosis (ALS) live more independent lives. Vitter’s legislation passed through the Senate in April and passed the House earlier in July.

“Steve and Team Gleason deserve all the praise in the world for not only shedding light on this issue, but helping get our bill across the goal line,” Vitter said. “Making this equipment more accessible and affordable will allow more ALS patients to literally have a voice to communicate with their family and friends.”

Many who read this blog reached out to tell me they were in contact with their representative. Thank you! You made a difference.

~ Todd

The Gap

May 3, 2015, by Kristin Neva

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


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?”


“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.”