November 25, 2020, by Kristin Neva

A week after Todd was diagnosed with ALS, we took our children to the beach. Almost-one-year Isaac pointed to seagulls flying over Lake Michigan. Four-year-old Sara dunked up to her neck. Isaac splashed near the shore under Todd’s watchful eye. Todd leaned over and kissed Isaac on the head.

Would Todd live long enough for our baby to know how much his dad loved him? I snapped pictures of them, aware the photos may be the only things the kids have to remember him by.

I wrote in my journal, “I’m thankful for the time we have, but it’s a painful kind of gratitude.”

Fast-forward ten years, and Todd is still here but completely paralyzed. While there is still good, life is hard and it only gets harder.

November has been a rough month. In addition to the political division in our nation and the health crisis our world is facing, we’ve experienced personal loss. Todd’s father passed away at age 86 from cancer.

Also, Todd’s health continues to decline, and the results of a clinical trial of a stem cell treatment that had given me a glimmer of hope turned out not to be the homerun they were hoping to deliver — at least not for those advanced in the disease progression. Another dream dashed.

As loss piles upon loss, we bring the weight of that grief with us to the Thanksgiving table.

It was also a weighty time for our nation in 1863 when President Abraham Lincoln called for a national day of thanksgiving.

The United States was torn apart by civil war. There had been great loss of life at the Battle of Gettysburg earlier that year. Riots had broken out in Northern cities as men refused to go to war. Approximately four million Americans were still enslaved. On a personal level, Lincoln and his wife were grieving the loss of their son, who had died of typhoid fever the year before, and Mary Lincoln was battling mental illness.

In spite of national and personal turmoil — or perhaps, because of it — Lincoln issued a Proclamation of Thanksgiving.

I do therefore invite my fellow citizens in every part of the United States, and also those who are at sea and those who are sojourning in foreign lands, to set apart and observe the last Thursday of November next, as a day of Thanksgiving and Praise to our beneficent Father who dwelleth in the Heavens.

In the text of the proclamation, Lincoln goes on to note some of the good that still remained, such as laws being obeyed and harmony prevailing except in the theater of military conflict. Life was bleak in light of the loss the nation was facing, and yet this proclamation commenced the annual tradition of thanksgiving that has endured for over a century and a half.

Our hearts need this national holiday, especially when the world around us falls apart. Perhaps it feels forced, and we just need to go through the motions, but sometimes that is all we can do.

Ritual is what we fall back on when our feelings aren’t there.

This year, I’m thankful for what we once had as we grieve our losses. I give thanks for what remains, even though it’s a painful kind of gratitude.

P.S. Listen to Todd’s take on Thanksgiving from his 2015 Sermon

August 29, 2020, by Kristin Neva

“That’s the one project I wish I could have finished,” my husband, Todd, said while looking out a window at Comet’s doghouse. He had expressed similar sentiment on other occasions over the last few years.

After Todd was diagnosed with ALS, we sold our house in southeastern Wisconsin and built an accessible home in northern Michigan next to my parents. We got Comet the summer after building our new house. Todd hired somebody to build a doghouse for him with a removable roof so we could clean or replace the carpet. He insulated it with foam board, so Comet has warm shelter when he’s outside in the winter. He shingled the roof to match the roof on our house.

Todd also wanted to side it to match our house, but he couldn’t find a contractor interested in such a small project or a friend with the tools and skills to do it. The OSB board didn’t bother Comet, but Todd mused about ways to get it sided several times since.

Todd is the kind of guy who likes to finish tasks.

After he was diagnosed with ALS, Todd started checking off his list of unfinished business. He wrote letters to me and to each of our kids. He convinced me that we needed to sell our house, so we got that listed and ready to show. His brother helped him finish the one room in our 1925 bungalow that had not yet been renovated.

Todd reviewed his benefits to understand what resources we would have in place once he was disabled and after he’s gone. He organized his documents and made a list of accounts, passwords, and contact information for me. We established a relationship with a financial planner, because Todd wanted to make sure I had someone to advise me.

We met with a lawyer to draw up our wills in the event that something happens to either of us. He established me with power of attorney, preparing for a day when he couldn’t sign his own documents. Todd completed an advance directive, in case he’s in a situation in which he can’t communicate his desires for medical care.

He also checked off his list some things that were not all business. Todd had always dreamed of having a decent camera, so he purchased a full-frame Canon 5D, which we have since used to capture thousands of precious memories, from a trip to Disneyland to Comet in his newly sided doghouse.

Comet in his newly sided doghouse. (Courtesy of Lani Siirtola)

I had the idea to side the doghouse with cedar shakes after our neighbors added the decorative treatment to their gables. It made their house super cute.

So, when Todd once again bemoaned his unfinished project, I suggested that we purchase a bundle of the wood shingles, and he could coach our 10-year-old son to do the project.

Todd rolled out in his chair and gave Isaac step-by-step instructions. He helped him select and lay out the shingles. He gave him pointers on how to measure and mark the tiles for cutting. Isaac cut the pieces and stapled them in place.

“This is good for Isaac,” I told Todd. “He’s learning important skills from you.” It brought joy to my heart to see my guys work together. I’m glad Todd got to check the doghouse off his list, and I hope they get to work on more projects together.

I hope Todd has many more years, because our job of parenting our son and 14-year-old daughter is far from finished business.

***

This article originally appeared in ALS News Today: Taking Care of Unfinished Business.

Taking Care of Unfinished Business

ALS News Today Home

March 31, 2020, by Kristin Neva

When someone asked my husband how he is doing in light of COVID-19, Todd replied, “Our life isn’t that much different. Now everyone else is dealing with what we have been living with for years.”

There are similarities between life during this pandemic and life with ALS.

1. We already engage in social distancing.
We spend a lot of time at home because it is difficult to go out. We already are germ-conscious and avoid people who are sick to protect Todd’s health. Now we are taking it to the next level.

2. We know stress.
With a terminal, progressive disease, we always live with stress. This pandemic has increased our stress, but the increase may not be as exponential as it is for people who are suddenly dealing with the realization of life’s fragility. I was talking about this with a friend, and she told me, “I think now everyone is feeling what you already felt.” While most of the nation went from little to moderate risk of contracting a virus that could be fatal, Todd already had a high risk. Every cold or flu virus is life-threatening for him now that his breathing has declined and he has little strength to cough.

3. We’re desperate for effective treatment.
Our government is fast-tracking vaccine and therapy development and testing for COVID-19. Our president recently said of repurposing a malaria medication for treatment of COVID-19 that “… we have to give it a try. Let’s see what happens. We have nothing to lose.” Many in the ALS community feel the same way about therapies in clinical trials, such as Nurown, which has helped some people. If only we could access it … what do we have to lose?

4. We live with uncertainty.
Those of us living with ALS don’t know what the timeline of progression will be because the disease manifests differently for everyone. It’s difficult to make decisions, such as selling or renovating a home, without knowing how much time we have. We have a similar uncertainty with this pandemic. Are we closing down schools for a month? For the rest of the school year? How bad is this going to get? How many lives will this virus take? Unlike a natural disaster, after which we immediately start picking up the pieces, COVID-19 doesn’t have an end date. The world is in limbo, unable to make long-term plans as we wait for the other shoe to drop.

5. We obsess over numbers.
I find myself checking the U.S. coronavirus map, watching as the numbers climb daily and hoping new cases aren’t registered in our community. It reminds me of when we were monitoring Todd’s forced vital capacity every six months until he got his feeding tube. Each time we went in, we knew the results would be bad news.

6. We feel anxiety over what could happen.
I feel anxious when I consider the implications of this pandemic. If I let my mind go down that road, I start to panic. I need to remind myself of lessons I have learned in living with Todd’s ALS for a decade. Instead of living with “what if,” I had to learn to live with “what is.” In the days following Todd’s diagnosis, when his only symptom was a weak arm, I was so anxious about the future that I couldn’t sleep. I found a counselor who helped me focus on today, rather than future possibilities and probabilities. When my mind was racing with thoughts of what was coming, my body responded as though it were my current reality — with anxiety. I had to discipline my mind to not imagine a future that had not yet occurred. We learned to plan for a difficult future without obsessing about what hasn’t yet happened.

7. There can still be good.
We look at what we still have. We’ve continued our family’s Friday night movie tradition, spending time together laughing. Boredom can breed creativity. When I limit my time on social media, I find time to write. Since schools shut down, my daughter has been working on the choreography for a dance routine. My kids, my mom, and I have spent time outdoors, cross-country skiing. With all that is going on, it is calming to see natural beauty, feel the warmth of the sun on our faces, and hear birds singing. I read stories of selfless acts and people supporting each other by shopping for elderly neighbors and those with compromised health. Several people have offered to pick up groceries for us. In the weeks to come, as “what if” becomes “what is,” I hope compassion will take root in all our hearts. Difficult situations can draw people together. That, too, has been our experience with ALS. As difficult as the disease is, it has focused our minds on what is most important — love.

***

This article originally appeared in ALS News Today: 7 Ways Life with ALS Is Similar to Life During a Pandemic.

March 8, 2020, by Kristin Neva

After three weeks of my husband, Todd, being cloistered in our home with a cold, we ventured out Saturday for Michigan Tech’s last home hockey game of the season. Our Huskies took on their archrival, the Northern Michigan Wildcats. Games between the two teams usually sell out because of increased local demand and the Wildcat fans who travel 90 miles from Marquette.

I had put off buying tickets, waiting to see if Todd got through his cold. By Wednesday, Todd no longer needed help every hour or so with an assisted cough, and by Friday he was feeling up to going to the game. I called to see if we could still get tickets. Although the rest of the 4200-seat arena was sold out, leaving standing room only, our usual seats in the accessible section were available.

Todd passed on dinner, saying he wanted to get a hot dog at the game.

“OK, but no onions,” I said. It had crossed my mind that he might have picked up his bug from the communal onion tray three weeks before at the previous hockey game, even though I had tried to scoop onions from the bottom. His sore throat started that night so that probably wasn’t it, but I was on edge after providing intensive care for nearly three weeks.

“And stay 6 feet away from anybody who coughs,” I warned him, remembering a tip I had heard on avoiding the COVID-19 virus. Todd would have to navigate through the crowd on the way to our seats, but then he should be safe because the accessible section is a single row of wheelchair slots and companion seats right up against the glass.

We live in a college town where people travel internationally, so I’m concerned that COVID-19 — caused by a member of the coronavirus family that’s related to the SARS and MERS viruses — may eventually reach our community. However, I already live with the kind of vigilance that a possible pandemic requires. The rest of the world is now taking precautions that I’ve been taking for years. Todd’s compromised lung function due to ALS means any bug could kill him, but we need to live life.

Life is risky, and I’m always calculating those risks.

A couple of months ago, my daughter went to a convention out of state with her dance studio. The possibility of a van accident crossed my mind, and a part of me wanted her to stay close to home. But what kind of life is that? I’d be protecting a life neither of us wants for her.

In the same vein, I let my son ride a dirt bike and downhill ski. We feel compelled to keep living, but we use caution. Isaac wears a helmet when he’s on his motorcycle and skis, and we do our best to avoid germs when Todd goes to crowded places.

I dropped Todd and Isaac off at the door of the arena and parked the accessible van. I caught up with them at our seats, surprised to find a number of fans standing behind Todd in the accessible section.

The teams played hard. Tech had won the night before in an 8-4 shootout, and both teams wanted the final regular-season victory.

Just before the end of the first period, Todd asked for a hot dog with jalapeños.

“No condiments from the communal trays,” I reminded him. “Let’s stick with ketchup and mustard from the pumps.” He was good with that, so I left for the concessions, and Tech scored the first goal.

The Wildcats answered with two goals less than a minute apart in the second period, and more fans crowded in behind us.

Tech tied the game in the third period, and a college student invaded part of the wheelchair slot and knelt beside Todd to take a picture with her smartphone.

And then she coughed without covering her mouth.

When it appeared that she was planning on staying in the box for the rest of the game, I decided to say something. “Could you please make sure you don’t cough on him? His health is compromised. And don’t cough on me either. I need to take care of him.” She nodded agreeably and did a better job covering her mouth when she coughed.

I wish I didn’t have to be so bold, but people need to know. We’ll continue living life with a heightened level of caution, but it would help if healthy people with cold symptoms did their part to keep viruses from spreading.

Maybe we could adopt a cultural norm from Taiwan. When I visited there more than a decade ago, one of Todd’s co-workers wore a disposable earloop facemask because she had a cold. How considerate was that!

By the way, Tech lost 3 to 2 in the last minute of the game.

***

This article originally appeared in ALS News Today: Living Life While Taking Precautions.

November 4, 2019, by Kristin Neva

Friday movie night has become our favorite pastime, as it’s something we can still enjoy as a family despite my husband Todd’s paralysis. We typically find a funny movie on Netflix or Amazon Prime. Our children, Sara and Isaac, pull up chairs around Todd’s computer. We laugh together. Todd predicts the scenes. Our goldendoodle, Comet, lies in front of Sara, and she pets him for an hour and a half.

A couple weekends ago, I found something to see in the theater: “The Art of Racing in the Rain,” based on a book by the same name. In the film, a philosophizing dog dreams of becoming a race car driver. The trailer made the movie look fun.

Enzo, a golden retriever voiced by Kevin Costner, reminded me of Comet. Todd frequently provides a voice for Comet. Speaking gently, he says, “Sara, I want a hug.” Or, “Isaac, can you get me food and water? I would get it myself, but I don’t have thumbs.”

Comet hugging Sara

I skimmed an online review to make sure “The Art of Racing in the Rain” was family-friendly, but didn’t read it in detail.

We went to the theater for a last hurrah before the kids went back to school and fall activities started.

We got popcorn and settled into our seats at the back of the theater, with Todd parked in a cutout for wheelchairs. Todd tilted back, and I turned off his chair so the display for his head array wouldn’t shine in his face.

With Todd’s compromised health, I like to keep multiple hands out of the communal bucket of popcorn, so I pulled plastic cups out of my bag, filled them, and handed them to the kids. I filled a Dixie cup and held it to Todd’s mouth. He plucked kernels from the cup with his tongue.

The movie got off to a promising start. An old dog reflects on his life: His first memories with his littermates. Being selected by his master, Denny. Learning about racing and appreciating Denny’s ability to win when the conditions turn bad.

Denny doesn’t fear the rain; rather, he expects the car to lose traction, and he initiates a controlled slide going into a corner. He is the greatest race car driver, in Enzo’s mind.

Enzo gets jealous when Denny meets Eve, but he learns to appreciate her. Enzo is the ring bearer at their wedding, and he’s in awe when he finds Eve is carrying a life inside her. He hopes the child will look like him. But alas, Eve has a human child — Zoe.

I’m a sucker for a good love story. The movie flashes through scenes in their life until Zoe is about 7 years old. But then I realized I had missed a major plot point.

Eve begins taking pain relievers, and Enzo smells decay on her breath, like rotting wood. It turns into a story about cancer.

Enzo knows it, but he’s helpless to tell the other characters. They’re oblivious to the significance of Eve’s symptoms: headaches, nausea, and forgetfulness.

I looked over at my kids, wondering if they’d figured out where the story was heading. I glanced over to Todd. “I didn’t see that coming,” he whispered.

Ugh. Whoops. We would have skipped this one if I had read the review more carefully.

It’s the type of story I would read on my own. I’m drawn to books that explore themes of grief and loss. I just finished “Being Mortal,” by Dr. Atul Gawande. He tells stories about his patients and his own father, shedding light on complex issues surrounding illness, aging, and death. “Being Mortal” made me feel like my family isn’t alone in dealing with a terminal disease. We’re all human, and we all die.

However, I avoid such tender topics when I watch television shows or movies with the kids, preferring to let them be as carefree as possible. We’re dealing with enough in real life.

In “The Art of Racing in the Rain,” Eve takes Enzo for a walk and collapses on the trail. Enzo barks, bringing help to her, but then she’s diagnosed with an inoperable brain tumor.

Tears welled up in my eyes, and I anxiously glanced at the kids to see if they were handling it OK. They seemed fine.

I won’t give away the ending, but suffice it to say that Denny risks losing control, and he has to decide whether he’s going to freeze up in fear or drive hard through the rain.

“It wasn’t exactly an escape from the weightiness of our situation, but maybe it was good that the kids saw it,” I thought on the drive home, as we discussed the highlights and concluded that Enzo might be a deeper thinker than Comet.

Maybe the kids can absorb strength from fictional characters who are facing adversity and not feel alone.

***

This article originally appeared in ALS News Today: The Art of Choosing a Family-friendly Movie.

October 28, 2019, by Kristin Neva

ALS is now affecting my husband’s breathing. On occasion, Todd’s lungs fill with fluid and he needs me to give him an assisted cough, just as his physical therapist taught me to do. He stacks his breath as I count to four, and I push on his abdomen below his sternum.

On Sunday morning, Todd needed several assisted coughs as we were getting ready for church. On the 10-minute drive there, my stress level rose as he struggled to breathe in the back of the van. I asked if I should stop. He shook his head no.

When we arrived, I told my daughter to grab my guitar and head upstairs. Sara and I were scheduled to lead preschool music.

Todd backed out of our accessible van, and a friend asked, “How are you doing?”

“I’ll be better when I can breathe,” he said through the gurgling in his lungs.

In the parking lot, Todd reclined his chair. The church shuttle bus pulled into the lot and stopped short of Todd. A stream of people got off the bus as I gave Todd several more assisted coughs.

Todd inclined his chair, and I told our son, Isaac, to come and get me if his dad needed help coughing.

Todd and Isaac wheeled into the sanctuary, and I joined Sara upstairs.

One minute I was acutely aware of the precarious nature of Todd’s health. The next, I focused on capturing the attention of rambunctious preschoolers between the two services.

I played guitar and Sara led motions. I delighted in the children singing and dancing. They were eager to wave scarves, shake shakers, and take a turn drumming on the cajon. A 4-year-old girl wanted to help, and she boldly took a place between me and Sara. This made me smile. Singing with the kids is a joyful break from stress.

After music time, I joined Todd and Isaac in the sanctuary. While I was upstairs, Todd had needed another assisted cough, and a paramedic friend helped him. Todd’s lungs filled up again during the sermon, so he wheeled into the lobby to get help.

He had an occasional weak cough throughout the rest of the service. I anxiously looked his way.

“I’m fine,” he whispered.

After the service, he said, “I think my lungs finally cleared out.”

“This is why people use the cough assist machine every day,” I said.

“Maybe I should,” he halfheartedly agreed. He doesn’t like how the device fills his stomach with air and makes him feel like he’s going to throw up. “Maybe it would be better now that I have the PEG tube. You could open the valve and relieve the pressure in my stomach,” he said.

I was able to relax on the drive home, but then I realized I had a headache. It was not surprising, considering the adrenaline that had been pulsing through my body.

We ate lunch, and I set him up on his computer. I hoped he would find time to edit the audiobook we recorded. Even though it was a cool fall day, we kept the windows closed and turned on the air conditioner in his office as it seems to improve his breathing.

It feels surreal to be living on the edge of life and death when breathing is compromised. It’s an absurd normal for me, and I must find ways to release the chronic stress. I exercise while I listen to podcasts or audiobooks, I journal, and I find outlets to be creative.

Todd’s lungs were clear, so I drove to the gym.

I jumped on the elliptical and listened to a chapter of my audiobook. As I pedaled, I felt the tension melt away in my mind and body. When I was done, I wiped down the machine and got myself a cup of tea. I drove home feeling calm and sane.

***

This article originally appeared in ALS News Today: Just Breathe: Dealing with Chronic Stress.

October 21, 2019, by Kristin Neva

“What? But there’s a guarantee on your website,” I told the customer service representative for the herbal company. I had requested a refund of a digestive supplement because it didn’t work for me.

He repeated his scripted line: “That product is nonreturnable because it’s consumable.”

“Wow!” I couldn’t believe my ears. I appealed to his reason and asked him to look at his company’s website.

It was impressive, and so were the testimonials, but what sold me was the “180-day money-back guarantee.” I checked the FAQ page to see if there were any strings attached. “If it doesn’t work for you, call customer service and get your money refunded, no questions asked.”

“It doesn’t matter what the website says,” the rep told me.

I asked to talk to his supervisor. He put me on hold, but the supervisor didn’t pick up.

I was upset. I had been sold a lie. I was the victim of false advertising, a guarantee that the company wouldn’t back up.

It wasn’t the first time that I had been disappointed in a guarantee.

Ten years ago, my husband, Todd, and I were in good health. Todd had a decent job, and we lived in a beautiful bungalow with our two young children. We were living the American dream.

I didn’t know it at the time, but I had unwittingly bought into the prosperity gospel. We weren’t perfect, but we were trying to do good in the world. We loved each other, our kids, and our neighbors. God was blessing our lives.

Then Todd was diagnosed with ALS at just 39 years old. He was told that he’d likely live only another two to five more years. There was no cure or treatment.

I was so disappointed in God.

I found a blog by a young youth pastor I had worked with in Chicago. He lost his wife to cancer. Like us, they had two small children. I read through tears about their journey and her eventual death.

“It’s so unfair,” I told Todd. “They were following God. Good marriage. Happy family.”

“So, you think it would be fairer if only drug dealers got sick?”

Yup. If only there were a correlation. If you break the law, you get ALS. Cheat on your spouse, get cancer.

It seems like that’s how life should work. You reap what you sow. Do what’s right, and blessings will come your way.

But that’s not how life works. God doesn’t guarantee wealth and health, but it’s so easy to fall into those belief patterns because it’s almost become part of the human psyche, a promise of the American dream.

Work hard, and you’ll succeed. Take care of your body, and you’ll be healthy.

Everybody at some level buys into a philosophy of self-determination. Life does work when we make good choices — until it doesn’t.

And then disappointment sets in. We are stuck in that gap between expectation and reality — the higher the expectation, the greater the disappointment.

Life happens, and the American dream turns into a nightmare. When tragedy strikes, life becomes too complicated for easy answers and banal sayings. We may find ourselves in a crisis of meaning. Some people want to give up, and that sense of nihilism can extend to others. Some people get mean. Couples divorce.

Where do we go from here?

We must fight and refuse to give up. We keep trying and doing what’s right. But we adjust our guiding philosophy to something more realistic than cheap slogans and worthless guarantees. We find something true that still demands our agency.

Here it is: Life is hard. It’s unfair. But we can make it better than it could be by the choices we make.

Try to improve your situation. Practice gratitude. Sacrifice yourself for others.

Find purpose and meaning by living with love for the sake of our fellow humans and our own hearts.

We know that we can make it better than it could be because we see the results when people make the wrong choices.

People can make choices. That’s my message of hope. Todd and I choose to be kind to each other and our kids. We have agency, even in the dire war zone of ALS.

By the way, I did get my refund, thanks to the power of social media and a comment I made on the company’s Facebook page. The company was apologetic and promised it would never happen again. If only I had that much influence with God as I pray for Todd’s healing.

***

This article originally appeared in ALS News Today: We Have No Guarantees with ALS, but We Do Have Choices.

September 9, 2019, by Kristin Neva

[This article was written for ALS News Today prior to Todd’s surgery to insert a PEG tube on August 12, 2019. Keep reading after the article for a follow-up by Todd.]

I love learning some new skills, but not all of them.

Thirteen years ago, I took a creative writing class that set me off on a journey that has included three novels, a children’s book, and now a weekly column. This week, I hope to take a puppet class.

I’m also learning how to manage a feeding tube this week. It’s a skill I wish I didn’t need.

One of the hardest things about caring for someone with ALS is adapting to continual change. After we adjust to a new normal, my husband, Todd, has another setback and we need to figure out how to manage the next stage of the disease.

A few months after his diagnosis nine years ago, Todd enlisted me to shave his face. I still remember my apprehension as I picked up his razor and ran it over his cheeks, hoping I wouldn’t nick him. He didn’t ask me again. Then he grew his first beard. He ended up liking it, and it was easier for both of us.

Today, shaving him would be no big deal, but I was still reeling from the diagnosis at the time and it was overwhelming.

Since then, I’ve taken on more tasks, learning new skills as Todd loses independence.

I’ve learned how to squeeze just the right amount of ketchup and mustard onto Todd’s hamburger.

I’ve learned how to pour water into his mouth at just the right pace so he can swallow pills.

I’ve learned to use the Hoyer lift to get him off the ground when he falls. (Remember to crisscross the leg straps so he doesn’t fall out.)

After we got his wheelchair and an accessible van, I learned how to secure him with Q’Straints.

After his arms became too weak to use the joystick, I learned how to drive his wheelchair while walking beside him. I figured out how to maneuver through doorways by reaching over his shoulder or walking backward in front of the chair.

As if all that wasn’t stressful enough, I had to learn to assist him in coughing. He told his physical therapist that he couldn’t quite clear his lungs, so she showed me where to press below his sternum.

“OK, I’ll try it. Tell me if I’m doing it right,” I said. Todd stacked his breath as I counted, “One, two, three.” Then I pressed as he exhaled.

After I got used to each task, they didn’t seem like a big deal. I remind myself of this because the future feels daunting.

This week feels daunting, as it’s time for him to get a feeding tube. I’ll need to learn how to flush it and, eventually, feed him through it.

Others who care for people with ALS tell me it isn’t hard to use the feeding tube. Todd’s shower aid has worked with many clients who’ve had them, and she says it’s easy.

After this surgical procedure, will I still be able to give him an assisted cough without hurting him? The surgeon thinks so.

Will it be painful for him to be transferred? Turned in bed?

I’m sure I’ll figure it out, but for now, it’s a big unknown. I’ve watched a few YouTube videos, but I won’t feel comfortable until I’ve had hands-on experience.

If all goes well with Todd’s surgery and recovery, I’ll go to the puppet class. Oh, how I wish that was the only new skill I’ll be learning this week.

***

This article originally appeared in ALS News Today: Learning New Skills I Wish I Didn’t Need.

***

My PEG Tube Experience
September 9, 2019, by Todd Neva

My PEG tube surgery went well. We were at the hospital for three hours, but the actual procedure was only ten minutes, and the surgeon said it went flawlessly.

The anesthesiologist kept me breathing on my own during the procedure, increasing the chance that my lungs would continue to function after the surgery. The precaution was to use only a “twilight” dose of propofol, which meant that he needed to first de-sensitize my gag reflexes. That was a fairly dreadful process, but I’ve had worst gagging episodes at dentist appointments.

It took a week for me to recover, during which time I managed the pain with Tylenol and back sleeping. I can now be turned to sleep on my side — the caregiver just needs to make sure my hand doesn’t snag the tube. It doesn’t bother me otherwise, and there’s no pain. And we’ve been able to do assisted coughs with no issue.

We weren’t sent home with instructions, so it was confusing at first, but we figured out how to manage the feeding tube. It is not difficult.

We’re not using it for nutrition yet, so Kristin just cleans around the stoma, replaces the gauze, and flushes the tube out daily.

It’s been helpful to have the PEG tube. We can use it to relieve gas that I would otherwise have difficulty burping up. My nighttime caregivers can give me water if I’m thirsty, because it’s too difficult to get more than a sip from a straw when I’m lying on my back or side. We’ve used it to inject NyQuil after I was already in bed, and we used it to inject baking soda and water when I had indigestion.

My neurologist suggested I get the tube two years ago, but that seemed premature. The cost of waiting was that we needed to monitor my breathing more frequently. My forced vital capacity had finally declined to the point where now was the right time to have the surgery. All went well, so in retrospect I’m glad we waited.

However, we’ve heard stories of people waiting too long, and then the surgeon refused to do the surgery, or they did the surgery but recovery was too difficult. If my breathing had been declining anymore rapidly, I would not have waited — especially knowing how easy it is to have one.

My biggest irritation, honestly, is that my stomach’s a little itchy underneath the medical tape.

August 26, 2019, by Todd Neva

Anybody who has visited me knows Comet, and they know Comet wants to show his rug and be petted.

Comet likes to hug Sara. He sits and lifts a front leg, and Sara knows that means she should kneel in front of him. He puts both paws on her shoulders.

When Kristin cooks food, he sits pretty, but patiently, hoping he’ll get some food. Maybe a fish skin. Trimmings from a ribeye steak.

Comet doesn’t expect anything from me. He knows I can’t pet him, and I can’t give him table scraps.

He’s my buddy, nonetheless. He hangs out with me in my office.

When he’s bored, he goes to the window and stares outside, and then he looks over to me expectantly.

He knows I can’t let him out, but he knows I have the power to call people to his aid.

“Isaac,” I call to the other end of the house, “come let Comet out.”

Comet then waits by the door for Isaac to come.

It’s how I feel about prayer. For years, I prayed for God to heal me, but now I mostly pray for help. And many people have come to our aid.

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.

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