Keweenaw Sweetness

July 17, 2017, by Kristin Neva

Sara Neva in Finnish Dance Costume

The Strawberry Festival is over, but fortunately the Keweenaw is still producing the little red berries. It’s some solace in a summer that’s slow in coming.

In Snow Country, Beth found hope in Pastor Chip’s words. “It’s going to take a long time for two-hundred inches of snow to melt, but it will melt and saturate the soil to give life to strawberries, thimbleberries, and blueberries.”

To the extent that Snow Country featured snow, Copper Country features berries. Keweenaw winters are marked by fall flurries, nearly daily snows in January, and spring blizzards. But our summers are marked by seasonal berries.

Early in the second book, Russ and Aimee visit Big Traverse Bay, where “low bushes with tiny white flowers, the genesis of blueberries, covered sand dunes.” And the “only shade came from a few Saskatoon trees, which would produce wild sugarplums in August.”

A few weeks later, Russ works for a lady where “trees encroached on the house, filling what was probably once a strawberry farm.”

Many of the old farms have been left fallow, as grocery stores prefer the almost tasteless strawberries genetically engineered to stay “fresh” for weeks during transport. But in the Keweenaw, we can still find berries that are half the size and twice the flavor sold by kids with roadside stands.

Later in Copper Country, Aimee and Russ are back at Big Traverse with Louisa picking berries, and the Heikki Lunta is serving fresh berry sauce on pannukakku.

There’s something genuine and earthy about a place scheduled by the seasons. Students, snowbirds, and tourists come and go, filling planes and cars in both directions. Businesses bustle or slow for their respective seasons.

I was bike riding with my kids when I spotted wild strawberry plants along our country road. I stopped and, searching for berries, found only a few for us to sample. They were small, but oh, so sweet.

With our cool weather, the berries are fewer and smaller, reminding us of how fragile and fleeting summer is. But we don’t despair. We celebrate all the more, savoring their sweetness because we know winter looms.

It reminds me of life as I reflect on living with my husband’s ALS. Life for the last seven years has been like a long winter, but we still have our good days. We’ll occasionally run to the Fitz in Eagle River for ribs. We’ll “stay-cation” for a week with daily visits to the Houghton County Fair. And we’ll celebrate and savor the Keweenaw’s strawberries, thimbleberries, and blueberries.

Seven Years Takes a Toll

June 10, 2017, by Kristin Neva

Seven Year Fam Pic IMG_6454Driving home after dropping the kids off for their last day of school, I was struck by the natural beauty around me. Lilacs blooming. The sun shining on trees full of apple blossoms. So much beauty, I can barely absorb it. We’re in the glory days of UP living.

At the same time, there’s much pain woven into this season of the year for me.

My second Father’s Day without my dad will be here soon. I think of him often with reminders of him everywhere. The shelf he built for Isaac to keep his Legos on. The dollhouse he built for me and then renovated for Sara. The clothesline poles he made for my birthday, and the fruit trees we planted together. There will always be an ache in my heart, and yet I’m grateful to have had a dad who loved so well.

This is also the season when we pass the anniversary of Todd’s diagnosis — seven years on June 11. There’s that same mixture of joy and pain living with ALS.

Seven years with a progressive terminal illness has taken a toll.

I’m currently trying to get Medicare to approve an alternating air cushion because Todd has pressure sores from sitting in his wheelchair. He gets uncomfortable, not being able to shift his weight. He loses muscle month by month. His feet — his whole body even — swell with edema. He has itches he can’t scratch.

It’s maddening not being able to scratch an itch. Try it. Think about itching right now, and you’ll probably get one. As I type this my face has an itch, and I’m trying to see how long I can hold out before scratching it.

That’s it. I scratched. Itch gone. Relief.

Imagine not being able to do that. Todd has an amazing attitude, but this disease is a monster.

And it’s not just hard on Todd. It has taken a toll on me as well.

After not getting uninterrupted sleep for a year and a half because I was up and down all night turning Todd, last summer I was at my breaking point. With the chronic Lyme disease I picked up from a tick bite, as well as the stress I’m under, my anxiety went through the roof when I was on duty without a break. We needed night-time help. We were thankful for the support we received so we could build the caregiver’s addition off of Todd’s bedroom, and now we are hiring help so we can both sleep at night.

Medicare pays for zero respite care, and Todd did not have a long-term care insurance policy. So the cost of nighttime care is a huge burden, and I can’t leave him to work as then we’d also have to pay someone to take care of him during the day. The yearly cost is over $35,000 for us to get six hours of sleep each night.

Thankfully, we have one volunteer who gives a night of her time every week, and we have a couple ongoing respite care grants from ALS organizations. We pay for a great deal of the expense out of pocket, but we’re left with about $15,000 per year that we couldn’t possibly cover. I’m hoping my writing takes off so we can close the financial gap, but until then we depend on our friends to generously gift us money.

Sleep is so necessary for Todd’s and my health. When caregivers cancel, as we asked them to when they’re sick, it’s as if I have a PTSD attack. I simply need sleep after I went without it far too long.

And yet, we celebrate. Todd has outlived his prognosis by two years, and the decline in his breathing continues to be gradual. I’m thankful I get to still do life with my best friend. The kids have their dad to help them with homework and encourage them. Todd finds purposeful activities to fill his time—counseling friends, creating graphics for our church, preaching a few times a year, and — my favorite—helping me edit my Copper Island novels.

There’s creative energy flowing in our house, and it’s good. Many times, I stop what I’m doing to write down something funny Todd says — inspiration for scenes in a novel. Or we’ll have a minor disagreement and I’ll say, “Let’s keep arguing and see where this goes. It’s good dialogue.”

My second novel, Copper Country, will be out at the end of the month, possibly by the end of this week if the proof copy looks good. There are some funny scenes in it. I have learned how therapeutic laughing is — especially in the midst of difficult circumstances. I’m reminded of what Todd wrote in our memoir Heavy, “There is pain and suffering in this world, but there is also joy, and not just suffering here and joy there, but suffering and joy in the very same place.”

**In celebration of this seven year anniversary of Todd’s diagnosis, the Kindle version of Heavy will be 99 cents for the month of June. Share with folks you know facing ALS or other tough stuff. It resonates with people who are dealing with various kinds of suffering.**

The Purpose of Suffering

March 14, 2017, by Todd Neva

The following is a transcript from the last of three Good News You Can Use radio spots, which aired January 16-18, 2017, on WMPL 920 AM.  I spoke on the topic The God of Suffering.

Mitch:

Todd Neva is a lay preacher at Evangel Baptist Church. Nearly 7 years ago, he was diagnosed with ALS, a terminal disease that causes total paralysis. He lives in the Hancock area with his wife and two children. He and his wife Kristin authored the book Heavy, A Young Family’s First Year with ALS, and they blog at Nevastory.com. Their speaking and blogging ministry focuses on the topics of grief, suffering, and finding meaning after a terminal diagnosis. As a complete quadriplegic, he is uniquely qualified to discuss the topic for today: God of Suffering.

Todd:

Good morning, Mitch. Today I’m going to wrap up this topic of the God of Suffering with the discussion on the Purpose of Suffering.

In the seven years I’ve had ALS, I noticed something interesting— many of the people who’ve come alongside me have their own personal stories of suffering. I got in the habit of asking people what tragedy has struck their lives. They survived cancer. A sibling died. A mother is disabled. A brother is intellectually impaired.

After having my first symptoms of a weak arm, I began seeing a chiropractor. He was kind enough to see me at the end of the day so I wouldn’t have to take too much time off work, and one evening as I left the building, I saw him load a man into the front seat of his car and then strap his wheelchair onto a carrier on the trunk.

The next time I saw the doctor, I asked him about the man — I thought it might be his brother, since they looked alike. “He’s my childhood friend,” Doc said, pointing to a framed photograph on his desk of two boys in Little League outfits. Not long after that picture was taken, his friend started having strange symptoms. His muscles would seize up. It took many years to get a diagnosis, but they finally figured out he has dystonia. Dystonia is almost the exact opposite of ALS — rather than the muscles losing strength, they all seize up involuntarily. He became totally paralyzed, but with severe pain and muscle cramping.

“Is that why you got into chiropractic care?” I asked.

“Yes, the medical doctors could help him, and I thought maybe I could at least give him some relief.”

Recently, after the tragic boating accident on Lake Superior, a recovery team came to look for the two men and the boy. The founder of the nonprofit organization had the best equipment money could buy, and he found the three, giving at least some sense of closure to the families. He had said he lost his brother, a firefighter who got swept away in the river as he was attempting to rescue someone.

When a loved one suffers, we suffer with them. There’s a word for that — compassion. It’s from the Latin words with and suffering. If you prefer Greek-based words, use empathy.

Yesterday, I talked about some things Christians say to try to comfort people in suffering. One that I left out is, everything happens for a reason. People like to point to Joseph, the son of Israel, being sold into slavery by his brothers. He ended up working for the Egyptian Pharaoh, in charge of storing food prior to a major drought. One day, his brothers show up begging for food. He was able to save his family. What man had intended for evil, God worked for good.

That’s a great story, but it’s a historic account of one situation. It’s not a promise that every bad situation is going to somehow turn into something good. There are many bad situations that are just awful, and nothing good will come of it except the change in our hearts if we allow God to work in us.

In Romans 8:28, the Apostle Paul writes, “And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Pastor Paul is saying that even in a bad situation, if we love God and seek him, he can use that situation to build us up. The situation itself may be horrible, but he is able to redeem all situations. Sometimes, the best thing that might come of it is that we’ll have compassion for other people who are suffering.

Compassion makes us more Christ-like.

Jesus Christ, who, existing in the form of God, did not consider equality with God something to cling to. He became human, and he suffered with his.

And he suffered for us. A few years back, a major motion picture came out called the Passion of the Christ, and every Easter kids around the world perform Passion Plays.

Words change over time, and passion has come to mean something like love and devotion, such as he has a passion for his work, or the couple was passionately in love.

The word passion originally meant to suffer. The movie was about the Suffering of the Christ, and the kids perform plays about the Suffering of Christ. His suffering was the ultimate act of love, so it’s not too far off base that we now use the word passion to mean a type of love.

I’ve suffered over the last few years with ALS. I’m a total quadriplegic. I have some pain, lots of discomfort, restless nights, itches I can’t scratch, and continual progression that will eventually lead to respiratory failure. I’m suffering, but the cool thing is that my heart has been open to the suffering of this world.

I feel more deeply for others, and I hope to play a small part in pointing people to the God of mercies and all comfort.

Beauty in Brokenness

BeautyinBrokenness

March 1, 2017, by Kristin Neva 

“The burden of grief is heavy, like the snow that crushed that old barn out in the field, but spring will come and the snow will melt.” In my novel Snow Country, Louisa comforts her granddaughter, who is grieving her broken engagement.

“But the barn will still be broken,” Beth responds, having lost hope.

After my parent’s old barn blew down, my mom made barn board picture frames. The weathered wood has character and beauty. The broken barn was repurposed.

We love stories of people overcoming tragedy, such as Joni Eareckson Tada, who was paralyzed in a diving accident. She went on to found Joni and Friends, which ministers to others with disabilities and provides wheelchairs around the world. Joni said her ministry is why she gets up in the morning. It is inspiring when we get to see pain recycled into something beautiful.

But what if we don’t see our pain made into something new?

When a terminal disease progresses. When a marriage dissolves. When sadness turns into deep depression. When there is just brokenness, like an old, collapsed barn rotting in the field.

Todd faces ALS with courage, born out of love for me and our children. I can’t imagine him telling me he hates me or biting me in frustration, but that is the depth of brokenness some of my fellow spouses experience daily in caring for their pALS.  Frontal lobe dementia. Emotional liability. Or just overwhelming grief.

Where is the beauty then, when not only the body is broken but the mind as well?

After Beth fails to see God’s goodness, Grandma says,  “Danny offered to take it apart and haul it away, but I like having it there. Sam built that barn, and when I see that weathered barnwood, I think of him. It’s still beautiful, even in its brokenness.”

The enduring value of the barn is not in what it does or what it can be repurposed to do, but in the love of and for its creator.

Insufferable Christians

February 8, 2017, by Todd Neva

The following is a transcript from the second of three Good News You Can Use radio spots, which aired January 16-18, 2017, on WMPL 920 AM.  I spoke on the topic The God of Suffering.

Mitch:

Todd Neva is a lay preacher at Evangel Baptist Church. Nearly 7 years ago, he was diagnosed with ALS, a terminal disease that causes total paralysis. He lives in the Hancock area with his wife and two children. He and his wife Kristin authored the book Heavy, A Young Family’s First Year with ALS, and they blog at Nevastory.com. Their speaking and blogging ministry focuses on the topics of grief, suffering, and finding meaning after a terminal diagnosis. As a complete quadriplegic, he is uniquely qualified to discuss the topic for today: God of Suffering.

Todd:

Sometimes the kindest, most loving people say insensitive things to people who are suffering. Seeing my body waste away, people have tried to comfort me with “biblical truths” — if this were television, and if I could raise my arms, you would see me put little air quotes around biblical truths because some of these old adages are nowhere to be found in Scripture. Personally, I’m not easily offended, especially when I can see compassion in their eyes, even when they say things like:

  • God has you right where he wants you, or,
  • If you have enough faith, God will heal you, or,
  • God won’t give you more than you can handle.

I know they’re just trying to make sense of a bad situation. But others have confided in me that they’ve been hurt by these insufferable Christians.

Let’s take each of these one by one.

First, God has you right where he wants you may be a deduction based on the sovereignty of God. God is all-powerful, all-loving, and he is capable of healing, so if he doesn’t heal, he must be choosing not to heal and has you just where he wants you.

Yes, I get it, but folks can feel abandoned by God, or punished even, when people attribute to God abuse, birth defects, or cancer.

We are often not where God wants us. Would you tell a little boy with leukemia that God has him right where he wants him? Would you tell young girl being sex trafficked that God has her right where he wants her? Then why tell a forty-six-year-old quadriplegic that God has him right where he wants him?

There is no promise of the pain-free life, in fact Scripture is replete with references to our suffering, as if it is inevitable. But we have a God who cares.

The Apostle Paul tells us in Romans 8 that “the Spirit himself intercedes for us with groanings too deep for words.” Even if you don’t know what to pray for, just imagine God himself being torn and conflicted over your pain, the Holy Spirit pleading with the Father.

Your pain hurts God. He takes no pleasure in it, so a plan has been put in place, and all of this will one day be made perfect. “He will wipe away every tear from [your] eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things [will pass] away.” (Revelation 21:4)

Yes, many would agree that God cares and he doesn’t want to see you suffer — so if only you had enough faith, you’d be healed. This one stings a bit, because I’ve prayed thousands of times for healing, yet my body continues to lose strength. It’s now getting more difficult to breathe, and I’m one severe cold away from death. It’s getting harder to swallow, and every time I eat I realize how easily I could choke. Yet I continue to pray.

It’s not due to my lack of faith that I’m not healed. If someone tells me that I only need enough faith, my response to them is — Jesus healed the paralyzed man due to his friend’s faith. So please pray for me. I’m counting on you, on your faith, to heal me. Sometimes Jesus healed people because of their faith, and sometimes because of others’ faith, and sometimes with no mention of faith at all — the reason Jesus healed was to reveal himself as the Son of God.

Now I can’t answer why God continues heals some and not others, or why he intervenes miraculously in some situations but not others, but he has a plan to fight evil in every case — the church. Christians should be actively fighting against evil. We should help the widows and orphans, comfort the sick, and fight injustice for the oppressed.

Well, maybe God won’t heal you entirely, but he certainly won’t give you more than you can handle.

Really? Right now I have way more than I can handle.

People may get this idea from 1 Corinthians 10:13 — “No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.”

In that verse, Paul is saying there is no excuse for sin.

As for our suffering, there’s no shame in saying it’s too much for you to handle.

Years ago when Jesse Ventura was campaigning for governor of Minnesota, a reporter asked about his faith. He said that Christianity is a crutch. He didn’t need Christ in his life, because he was strong enough on his own. I hope he’s had a change of heart, but I’m not offended by the statement. I admit that Christ is my crutch. He’s more than my crutch — he’s my walker, my wheelchair, my life support.

Because ALS is so much more than I can handle, I have to rely on other people. And if it’s even too much even with their help, I still have the hope of heaven.

Until the renewal is completed, this life is often more than people can handle — it’s part of the earthly futility that God hopes would drive us to him. And if the church is doing its job, we would be coming alongside people in their suffering, and they would see the light of Christ in us.

 

The transcript from The Purpose of Suffering will be posted at a later date.

The Problem of Suffering

January 23, 2017, by Todd Neva

The following is a transcript from the first of three Good News You Can Use radio spots, which aired January 16-18, 2017, on WMPL 920 AM.  I spoke on the topic The God of Suffering.

Mitch:

Todd Neva is a lay preacher at Evangel Baptist Church. Nearly 7 years ago, he was diagnosed with ALS, a terminal disease that causes total paralysis. He lives in the Hancock area with his wife and two children. He and his wife Kristin authored the book Heavy, A Young Family’s First Year with ALS, and they blog at Nevastory.com. Their speaking and blogging ministry focuses on the topics of grief, suffering, and finding meaning after a terminal diagnosis. As a complete quadriplegic, he is uniquely qualified to discuss the topic for today: God of Suffering.

Todd:

Thanks, Mitch, I’m so glad to have the opportunity to share what’s on my heart. Today and over the next two days, I’m going to talk about The Problem of Suffering, insufferable Christians, and then The Purpose of Suffering.

For the first topic, The Problem of Suffering, I really mean the problem with reconciling suffering to an all loving, powerful God.

“With all the evil and suffering in the world, I just don’t see how God could exist.”

That sentiment has been expressed so many times by so many people, I don’t even need to attribute it. I’ve heard it said. You’ve heard it said. You may have even said it yourself. It sure has crossed my mind.

This is really a challenge to the Judeo-Christian God. Suffering does not surprise people who adhere to other religions —  their gods are vengeful and merciless, or there’s karma that requires payback, even for misdeeds in prior lives.

But Jews and Christians have to deal with a bit of a paradox — an all powerful and loving God who allows suffering.

The Apostle John tells us that God is Love, and love comes from God. God so loved the world that he gave his only Son. The Apostle Paul calls God the Father of mercies and God of all comfort. We’re told that God is all-powerful, sovereign. And Jesus encourages us to pray because our Father in Heaven gives good gifts to those who ask him.

Some people cannot reconcile those beliefs with the present condition of suffering. The challenge would be more accurately phrased: “God couldn’t possibly be all loving if he allows suffering, or if he is all loving, then he’s certainly not all-powerful.”

The typical response to this is that God is all loving, but he’s also just. Everything was perfect until Adam and Eve sinned, and then death entered the world. That is true, but it rings hollow for many people. If somebody is questioning the existence of God, it gets a bit deep in the weeds to talk about the Doctrine of Original Sin.

And if somebody is truly questioning the existence of God, it might help to first step back and examine if this world, with its order and beauty, could be anything but a work of creation. Prof. John Jaszczak will be here next week to discuss the God of Science, but in the meantime let’s assume that our suffering skeptic has some level of faith, but is just questioning God’s goodness.

I would point out that God created man and woman in his image. This means that humans are spiritual creatures. We differ from animals in that we have souls, and our souls will continue to exist even after our bodies waste away.

God is in the business of creating souls. I’m glad he created mine. By one estimate, there has been over 100 billion people born on this planet.[i] About 7 billion of those are alive today. Maybe he could have allowed the Earth to be populated by the first 20 or 30 billion and then put an end to it all, but he didn’t.

He’s allowed our world to continue with its cycles of life. Many have come, and many have gone, and now we’re here. I’m glad for the time I have. But why is it that some have eighty years and others eight minutes? I can’t answer that. Death never feels right. It always seems untimely. But whether it’s eighty years or eight minutes, it’s a blink in all of eternity.

So there is life and there is death, but couldn’t we just be born, live a charmed life, then die peacefully in our sleep at some appointed age? That’s not how it works. The process is messy.

Some children are born to broken, abusive homes.

There’s birth defects and deformities.

Accidents.

Cancer.

In my case, total paralysis.

Why does life have to be so hard?

In Romans 8, Pastor Paul writes, “18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. 19 For the creation waits with eager longing for the revealing of the sons of God. 20 For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope 21 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.”

In other words, yeah, life is hard, but heaven is going to be awesome. But your soul has to be right with God, and God put in place the conditions on this earth so that you would long to be with him.

This is Todd Neva, from Evangel Baptist Church. I’ll be back tomorrow to discuss Insufferable Christians.*

 

* The transcript from Insufferable Christians will be posted at a later date.

[i] http://www.prb.org/Publications/Articles/2002/HowManyPeopleHaveEverLivedonEarth.aspx, as accessed on January 4, 2017.

Some Dreams Don’t Die

November 28, 2016, by Todd Neva

snowcountry-3d-2Kristin wrote about the loss of dreams in Heavy, and she blogged about it here. But not all dreams died.

Since she was a child, she’s wanted to be a writer — an author — and not just an author of a memoir, but an author of the likes whose books she loves to read. Jan Karon. Karen Kingsbury.

Three years ago, she pushed her dream along by participating in National Novel Writing Month. The goal of NaNoWriMo is to crank out 50,000 words without worrying about structure or quality. Just write.

She turned it over to me to evaluate. I read the first chapter and thought she had some legs to the story.

Then I read the second chapter. Oh, boy!

But after three years of hard work — with lots of learning, small victories, setbacks, and reworking and reworking and reworking — she’s produced a piece of art that I dare say borders on literary quality. If literary means hard to read, then it is certainly not that. It is a fast-paced story with enough twists to keep you turning the pages.

Snow Country is not just a romance. (Even her men beta readers loved it.) It’s a story about family and faith. It is sweet, funny, sad (at times), and insightful.

The beautiful cover and typesetting draws the reader onto this fantastical snowy island where the characters are lovably flawed.

You may have heard the phrase, write what you know. Knowing my story of having ALS, you might not be surprised by one of the twists.

Oddly, it might’ve been my paralysis and the need for nearly 24-hour caregiving that helped her dream come true.

She really can’t work outside the home. She must be here for me during the day, so she spends part of it writing. I’m here to help her think through plot lines and to critique her work.

And she was motivated to generate income to help with caregiving. The average pALS spends $250,000 out-of-pocket as a result of this disease for home renovations, equipment, and caregiving. Perhaps still a dream, but we hope Snow Country can help close that gap.

Every book sold pays for almost 15 minutes of nighttime care so I can sleep. And if I sleep, then I don’t torture her by waking her up every hour to turn me.

And who knows, maybe the dream can get even bigger — this can take off and we can be in a position to help others. There’s been some big successes through word-of-mouth.

Would you help us promote it? Order it on Amazon. Buy it for a friend. Read it in book clubs. Tell our story. Share it on Facebook or other social media.

Let’s dream big!

Now on Amazon:

Paperback: http://a.co/dIdQuSJ

Kindle*: http://a.co/ePoYbxE

* Available now for preorder and delivery December 3.

Will be available in other online e-book stores soon.

I’m In! Thank You.

 October 15, 2016, by Todd Neva

img_3247-1What a way to celebrate my 46th birthday.

First, let’s start with recognizing that I made it to 46. Diagnosed at age 39 with ALS, a disease with a 3-5 year life expectancy, I didn’t think I’d get a chance to see my children grow. I was counting the months.

Then months turned into years, and we’ve settled into our handicap accessible home in the Upper Peninsula. Sara is in 5th grade, and Isaac is in 1st. I keep myself busy with various projects, such as doing graphics for our church. We’ve grown roots in this community, and we’re blessed to have the love and support of friends and family here and elsewhere across the country.

ALS is not a disease that one can fight alone. Slowly, month by month, I lost my independence. At some point — it’s hard to pin down an exact date — I became completely dependent on Kristin for my daily needs, but she got a break when she put me to bed.

Starting about a year ago, I lost so much mobility I wasn’t able to reposition myself in bed. I’d sleep for a few hours, then wake up sore and needing to turn. Kristin’s sleep suffered.

And now, I can only sleep for about an hour at a time. This is not sustainable for Kristin to go on night after night without sleep.

Hence the caregivers — a combination of paid and volunteer home health professionals — come in most nights. We try to schedule a helpers to come for a six-hour shift at least five nights a week. They put me to bed and turn me at night so I’m comfortable, but most importantly, they allow Kristin to sleep.

Before deciding to build the addition, we did the math, and we determined that we’d be able to swing an additional mortgage payment. It would be tight, but we didn’t have much of an option. It wasn’t working well to have the caregivers across the house in the living room—and looking to the future, it would not work at all.

A friend encouraged us to do a fundraiser. “Some people really want to help,” she said. We decided to try, and we put out a goal to close the gap between what we were willing to finance and what it would take to complete the addition.

We were absolutely overwhelmed by the support we received. We have enough to finish the addition and also pay down much of the addition mortgage. This will free up more cash on a month-to-month basis to pay for caregiving.

Last Friday, I was finally able to move into the addition. My computer is set up in the corner where I have a view of the field. I have enough space to turn circles. There are extra chairs for folks to meet with me. There is a recliner for caregivers to sit in at night within earshot of me. I don’t need to yell down to the other end of the house when I need help repositioning at night. Kristin and the kids have their privacy at night.

There’s a few more things to do to finish it off — some casing, paint, doors, light, etc. But it’s already functional, and beautiful. A big thank you to my buddy Chris Raasio who oversaw the project. He and his crew do very good work.

And thank you to all of our supporters out there. Thank you to those who helped us build the addition and thank you to those who send funds to pay for night-time caregivers. Your gifts make a difference in the quality of my life, and they reduce the burden on my wife and children.

I am beyond grateful.

Todd

Addition Update 2

August 27, 2016, by Todd Neva

IMG_3200We have shingles, soffits, and windows installed. The siding is on two thirds of the caregiver’s addition, and the rough-in plumbing for the in-floor radiant heat and electrical is done.

We’ve met our $10,000 goal on the Go Fund Me drive, so we’ll be able to get the AC and tile done. And with other donations that came in separately, we’ll be able to make a big impact on the second mortgage. Getting that paid off will free up $388 per month, which would pay for 6 four-hour nights of care.

This is coming at a good time, as sleep is becoming increasingly difficult. I have virtually no movement in bed now, so my joints get stiff and achy, and I can’t sleep much longer than an hour at a time. With night help, I get turned and go back to sleep. Without help, I lie awake for as long as I can until I call for Kristin. It’s a balance between torturing me or Kristin with sleep deprivation.

It will be good to have the caregivers closer, because my diaphragm is getting weaker and it’s becoming more difficult to raise my voice.

IMG_3186By the way, a wife of the deceased pALS donated a cough assist device. I thought it would come in handy when I aspirate, but in trying it out I realized my lungs had been clogged with mucus deep down. It loosened up my lungs, and my breathing is substantially better. It felt like the first time I fully filled my lungs for many months.

A respiratory therapist at Aspirus volunteered his time to show us how to use the device. We could’ve never figured it out on our own, and it could’ve been dangerous if we used it incorrectly. What an amazing community this is.

And our durable equipment manufacturer installed a loaner head array on my wheelchair while the permanent one makes its way through the company’s Medicare approval process. That has been valuable as my arm gets too bound up at times to control my wheelchair with the hand joystick.

I am overwhelmed beyond words by the support we’ve received well beyond our worth. (Well, beyond my worth—Kristin is a gem.)

~ Todd

Addition Update

July 30, 2016, by Todd Neva

IMG_3139The addition is moving along quickly. It’s framed, and we’ll have it weathertight on Monday.

I’ve been overwhelmed by the support, both financially and physically.

My good buddy Chris Raasio, of Raasio Contracting, has been overseeing the work. To save on costs, he’s scrounging some leftover material and worked with a few volunteers who’ve shown up. It’s been like an old-fashioned barnraising.

And I’m blown away with the financial generosity from old friends, new friends, acquaintances, and even strangers. It’s hard to ask for help, and I must admit I am quite cognizant of a number of pALS and cALS who are struggling all the worse — inaccessible houses, poor equipment, lack of sleep, tighter budgets, fewer people to help.

I’d like to believe that it’s all part of the “pay it forward” concept, and that what I’ve given in the past justifies what I’m getting now, or that someday I’ll have a chance to give to someone else. I’m not sure the math works. I think I just have to admit that it is only by grace that I receive beyond my worth.

Well, it is what it is. I’m a plant, so to speak, surviving only by the grace of God and the help of my caregivers. I do more than survive. I enjoy life. My writing. Preaching occasionally. All else that keeps me busy.

Thank you for the gift of life, caregivers and supporters.