Category Archives: Uncategorized

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.

Carry Your Cross

April 8, 2019, by Kristin Neva

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

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

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

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

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

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

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

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

Dusty Road

March 6, 2019, by Kristin Neva

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

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

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

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

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

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

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

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

The Most Beautiful Woman in a Hundred Years

January 16, 2019, by Todd Neva

A paragraph in The Princess Bride caught my eye.

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

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

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

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

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

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

December 10, 2018, by Kristin Neva

George HW Bush signs the ADA into law in 1990

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

June 19, 2018, by Todd Neva

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

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

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

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

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

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

Did God allow it? Is he not in control?

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

Paul said God subjected all creation to futility “in hope that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God.”

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

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

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

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

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

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

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

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

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

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

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

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

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

Fabric of Life

June 11, 2018, by Kristin Neva

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

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

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

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

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

Now This is Humbling

December 18, 2017 by Todd Neva

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

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

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

“But it’s just my pride,” she said.

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

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

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

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

Merry Christmas