Author: Jon

The word thankful just cannot express how I feel about my wife. Through her fears, sadness and uncertainties, she has stepped up and revealed to be the most sweet and loving caregiver anyone could hope for. We both have our times of tears and fretting, but I’ve not seen a person put on an armor of compassion like Cindy. Dealing with ALS is like climbing a mountain of jello, you just can’t get a foothold. Issues with me come up all hours of the day. For example, I woke about midnight one night this week screaming in pain from the worse leg cramp I have experienced to date and she came bolting out of her makeshift bedroom to help resolve the issue. The entire time she is consoling me while calling upon Jesus to take this pain away. I literally am in awe of her ability to adjust to level of care I need. She would tell you she is scared out of her mind, but I have seen God give her grace, mercy and patience to handle what I’m certain would cause others to buckle. As a matter of fact, couples have divorced because the level of commitment is so demanding for ALS patients. So, to simply say thank you isn’t enough. I cherish this woman God has given me for a bride.

I cannot neglect to mention my children and their families. They have been so good to help when and where they are able. I enjoy the pop in visits from each of them throughout the week. I go to church on Sunday and a Bible study on Tuesday when I am feeling able. These are the extent of my travels outside a doctor visit occasionally (my doctor makes house calls), so when the kids pop in it is a treat. I don’t have much to offer by way of conversation due to being tethered to my BiPAP machine, but I do enjoy listening to their conversations and the laughter. Although it has only been nine months since my diagnosis the progress of this disease has move rather rapidly. Taking each day one at a time and looking for the best in each is the only way for me to face this.

Cindy thank you for the 31 years so far and showing the love of Christ to me and your children. After all those years, I still do.

This Thanksgiving I would encourage you to take advantage of the time with family and friends and let them know how much you love them. Maybe even give an example of why you are thankful for them. It seems simple and cheesy to some, but I can promise you it’ll mean the world to the receiver.  

My days begin the same. I get out of bed, which is no easy task, wipe my eyes, grab my cane, which I cleverly named Dean, and make the twenty-foot journey to the bathroom. Once my teeth are brushed and face is washed, I return to my living quarters and ease into a lift chair. Now it is time to strap on the mask which is connected to the ventilator that helps me breathe. The small chore of freshening up takes so much of my energy and leaves me needing air. The day is spent in my chair tethered to the ventilator. Here I read, watch news, ballgames (if available) and cheer on Matlock and Marshall Dillon. Since I do not sleep well at nights, there are a couple of naps to be had each day.

There are short excursions to gather the mail, let the dog out, grab a morsel or two from Cindy’s Café and stretch my body after being nestled in the chair.

I have heard people say, “I wish I could sit around and watch television all day.” I would like to go on record and say it is ‘no bueno’. Day after day, hour after hour, it grows so old.

Now, please allow me to tell you how much God has blessed me. Each morning I wake, I am grateful. No matter the quality of sleep the night prior. Each day I am allowed to hold my wife and tell her how much I love her, I am grateful. No matter how jumbled my speech from this disease. Every time Cindy places a meal before me, no matter how long it takes me to chew and swallow, I am grateful. When I am able to stand to my feet and put weight on my legs to walk, I am grateful. No matter how awkward or wobbly while walking.

Climbing stairs has become a major chore, as well as a hazard for me, so I have been sleeping downstairs. Cindy and I no longer share a bed since there is not enough room for our king size bed in the living room. I have not been upstairs in my house since this past June. While at times I feel like a prisoner in my own home, I am grateful for each and every day God allows me to be here with my family and loved ones.

Someone told me that ALS is a moving target to the medical field. No two people progress the same. From my diagnosis in early 2019 until today, I consider each day a blessing from God.

This is one of my favorite hymns. We could each save ourselves much grief if we learn to apply the lessons of this hymn.

Count Your Blessings

When upon life’s billows you are tempest tossed, when you are discouraged, thinking all is lost, count your many blessings—name them one by one, and it will surprise you what the Lord hath done.

Are you ever burdened with a load of care? Does the cross seem heavy you are called to bear? Count your many blessings—ev’ry doubt will fly, and you will be singing as the days go by.

When you look at others with their lands and gold, think that Christ has promised you His wealth untold; count your many blessings—money cannot buy your reward in heaven nor your home on high.

So amid the conflict, whether great or small, do not be discouraged. God is over all; count your many blessings—angels will attend, help and comfort give you to your journey’s end.

Chorus: Count your blessings—name them one by one; count your blessings—see what God hath done.

The Plane Tree – Aesop Fable

Two Travelers, walking in the noonday sun, sought the shade of a wide spreading tree to rest. As they lay looking up among the pleasant leaves, they saw that it was a Plane Tree.

“How useless is the Plane!” said one of them. “It bears no fruit whatever, and only serves to litter the ground with leaves.”

“Ungrateful creatures!” said a voice from the Plane Tree. “You lie here in my cooling shade, and yet you say I am useless! Thus ungratefully, O Jupiter, do men receive their blessings!”

Our best blessings are often the least appreciated.

The Latest

I had an appointment this week with my pulmonologist in Green Bay. Each visit I am asked to perform specific test to evaluate the strength of the muscles my lungs need to function properly. The average or normal person has a forced vital capacity (FVC) of 80%. Prior to my hip surgery in December 2018, my FVC was 74%. This is when I noticed my body wasn’t feeling right. In February 2019 my FVC was 59% and in March it was 47%. Today it was 36% and this brought up a conversation with the doctor that I again was not ready to have.

He said that I would need to begin thinking about whether I would want a tracheostomy. This is a huge life change not just for me, but for those who are caring for me. I am still uncertain at this moment what I will do, so I am asking you to pray that I make the right choice for me and my family.

I have images of being unable to speak, breathe or eat on my own. I know right now how frustrated I become when unable to communicate with others due to poor speech or being on my ventilator. Images of watching my grandson play and not talking to him or telling him jokes. Me being unable to tell my wife how much I love her. Unable to speak to my kids and communicate my love for them. Images of solitary confinement in my body fill my mind. How is that living? On the other hand, I would be around longer to see my kids and grandson grow older. As long as God allows, I would have Cindy by my side. Please pray I do the right thing.

The Day to Day

There are days I feel like giving up. My mind tells me I can do things I’ve done all my life, so I get out of this chair and pursue my interest to only endure a short time. My legs feel weak and my breathing is laborious. I’m fooled by “mind over matter.” Experiences like this make it difficult to stay positive. It seems like every Sunday I feel worse in the morning than other days. There have been a couple of Sundays I chose to stay home and not preach. Most of the time I power through and go to church so I can bring the message.

The apostle James tell us that we are to give thanks for all things. I’ve learned to thank God I’m faced with ALS. This experience has taught me more patience, compassion and understanding the feelings of others. My eyes have been opened to all the hurt around us each day. I thank God I’m still alive. I thank Him for the good days I have and the bad days I live through. I thank Him for my wife. Oh, how she has been a blessing to me. I’ve never felt so loved than since this journey began. Cindy has been so understanding and patient with me.

July was a busy month at the Wells household. On Monday the 8th my in-laws pulled in hauling a cargo trailer. In that trailer was a vertical platform lift (VPL) that they sacrificed to purchase for me. Well beyond his retirement years, my father-in-law worked alongside my mother-in-law to build a beautiful deck on the front of our house and installed the VPL. In addition to the deck, he installed a brand-new front door to accommodate a wheelchair. My mother-in-law made most of the meals, cleaned and did laundry as well. It was unreal watching these two work as hard and long as they did. I thanked them both often, and I kept hearing, don’t thank us… thank God for giving us the strength and health to be here and do this.   I have never felt more love on this earth than I have than the past few weeks. 

Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day.

2 Corinthians 4:16

I may be the most fortunate man I know. God has blessed me with a beautiful life. He allowed me to marry the most beautiful woman I know, and she gave me three of the best kids I could ask for. On top of that, I have a family who loves me, and I am so grateful they spent the past few weeks with us. How many men could say that they were sad when his in-laws left after living with them a month? I don’t know any.

He gives power to the weak, And to those who have no might He increases strength.

Isaiah 40:29

My condition has progressed a little since my last visit to Froedtert Medical College in Milwaukee. My breathing is what has worsened. I have been using a non-invasive AVAP with oxygen for just over three weeks and it seems to be helping. My FVC was only at a 30, but they told me I have a Glottic closure which is not giving them an accurate reading. I am in the process of being fitted for a power wheelchair. With my breathing being such a struggle, I am not able to get out and do much, but hopefully when I get the wheelchair, I won’t use up so much energy walking and be able to get out of the house a bit more.

I appreciate all of you who have continued to follow our blog and pray for us. I cannot express how grateful we are and how much those prayers have empowered us.

In September we will be doing the ALS Association Wisconsin Chapter Walk. They provide grants and other resources to families with ALS in Wisconsin. They have already helped us, and now we would like to help them so they can continue to help many others like us! We would love for you to join us in the walk if you are local and if you can donate any amount to help us reach our $1,000 goal, that would be awesome! Visit the link below for details! GO TEAM WELLS!!

https://donate.alsawi.org/team/240675

In the past two weeks I have had the opportunity to share the gospel, and as a result, witnessed three souls come to Christ for salvation. Being allowed to tell the story of God’s plan for salvation is such a humbling privilege. One of the three who saw their need for Christ took place over the internet. In the years I have shared the gospel, this was a first for me. I can’t tell you how happy I was to use this platform to share Christ. It was immediately apparent to me that even though I am told my voice will fade to nothing, I will still be able to tell others about God’s saving grace.

It is by God’s grace I am still able to preach and for that I am so very grateful. Preaching is one of the events that brings me much joy. I will deeply miss it, if and when the times comes. (Cindy keeps reminding me that the Lord is returning soon and I will not have to endure all this disease offers)

This week I was asked by the athlete director of our high school to speak to the baseball program. He and I have been meeting weekly for coffee and through the course of our conversations he asked if I would like to share with the boys. I jumped at the opportunity! He told me I could speak on whatever I felt led to share. What a privileged opportunity to share the love of Christ with a group of young men from a public school. At the conclusion of our time every young man who attended walked up and shook my hand, introduced themselves and thanked me for speaking to them. I was totally humbled when one said to me, “The varsity team has been praying for you and we will continue.”

Through all the storms, God is still providing opportunities to do His good work.

23 except that the Holy Spirit testifies in every city, saying that chains and tribulations await me. 24 But none of these things move me; nor do I count my life dear to myself, so that I may finish my race with joy, and the ministry which I received from the Lord Jesus, to testify to the gospel of the grace of God.

Acts 20:23-24

On Thursday we went back to Foredtert Medical College in Milwaukee for a scheduled visit with the ALS doctor. We meet with 10 different people, all who work with different areas dealing with ALS. It was a busy morning with someone new coming in the room every 10 – 15 minutes. A “Forced Vital Capacity (FVC)” test is done each time I visit to determine the the strength of my lungs. The test allows them to see how much force I have when exhaling. In late February I recorded a 58% and Thursday my results were down to a 47%. We were told that I need to consider having a feeding tube inserted in the very near future. The urgency is that if the number reaches 40% it will be too late to insert. The reason is that the anesthesia weakens the diaphragm and lung muscles and if my FVC is at 40% I could go into respiratory failure. Although I do not ‘need’ the feeding tube to receive nutrition at this point, it is suggested having it done now and be prepared for when I will. The surgery to insert the tube will be done in a couple of week.

Would you please pray that my numbers do not drop lower and that this surgery is successful and without complications?

While the disease seems to be progressing faster, I know that God is still in control. He has final say in what happens to my earthly body.

Not one second of this ordeal is easy on Cindy or my children. I think of them so often. I do not want them to hurt or be in need. Cindy is working extremely hard each day. She not only works a full time job, but then comes home and has to do household duties that I am unable to do. The physical toll is great, but the emotional and spiritual is at least as difficult, if not greater. Please continue to pray for Cindy. She is truly the hands and feet of Jesus for me at this time.

In the near future, Cindy will need to be with me on a more regular basis which means she will not be working full time. It humbles me to mention this, however I know if it is not mentioned then the need would not be known to some. What I am dancing around is our financial needs. We were told this week that I do not qualify for disability due to lack of contributions to social security and I do not take a salary from the church. SSI is a possibility, but would take up to five months before we receive any financial help.

If you are able and willing…my daughter Machelle has started a GoFundMe page for us. You can access it by clicking the GoFundMe button at the right of this page or visit the “How you can Help” tab. If you feel God leading you to help in any way, it would be of great help and I know that God will bless you even greater.

We both are carrying large burdens but learning every day to place those in God’s hands and let Him carry them for us. I don’t know what we would do if we did not have Christ in our lives.

Be still, and know that I am God;
 I will be exalted among the nations,
 I will be exalted in the earth! Psalm 46:10

I look around my house and see so many things that need to be done. Unfinished projects to unstarted ones. Each are necessary, and some are more important than others. Like most families, we either have the time and no money, or have the money but no time. Honestly, our problem is more the former. No matter what the project and resources, there always seems to be an unwelcomed issue that rears its ugly head. A roof leak, furnace breaks down, air conditioner compressor fails, or the flux capacitor freezes up on the time machine. Just yesterday Cindy said, “I just need time to stop so I can get caught up.” We have all felt this way from time to time.

We cannot stop time. However, we know how to spend it, lose it, waste it, and pass it. Sadly, it takes a lifetime for us to learn how to take time. We cannot take more time than each day allows, but I believe ‘taking time’ is meant to make the best use of the time we have been given.

I plan to invest the time I have on the things and people that matter the most to me. What is important to you? For me, aside from my relationship with Christ, it is my wife, kids, and grand baby. Investing in these people the things which are eternal is my goal.

“And these words which I command you today shall be in your heart. 7 You shall teach them diligently to your children, and shall talk of them when you sit in your house, when you walk by the way, when you lie down, and when you rise up.

Deuteronomy 6:7

Life for most can take many different paths. I’ve spoken with people who are bitter and angry because their life didn’t go the way they had hoped. For some reason or another, they felt or thought they should be happier, healthier, wealthier, or more advanced. You know as well as I do that life seldom turns out the way “we plan it”. Time goes by and before you realize it, days turn to weeks, weeks to months, and months to years. Each day comes and goes like the air coming and going through our lungs. I cannot recall what I did two weeks ago anymore than I can recall each breathe. Similarly we take for granted each day just as we do each breathe.

At the end of our time on earth it would be nice if we had no regrets. Now, I would be dishonest if I told you that I would not want more for my wife and children. It’s my opinion that most parents, especially dads want to provide to the fullest for their family. The “things” of this world will fade or rust away. If you don’t believe that, just go to the landfill one day and glance around at all the “things” people have thrown away because they were broken, rusted, or inoperable. Some of these “things” cost a lot of money. The only thing I am interested in is loving others and leaving this world with no regrets.

Charles Swindoll has said, “life is 10% what happens to you and 90% how you react to it.” Reacting is not often my best look. However, if I choose to respond in love, I find there are no regrets waiting ahead. Mr. Swindoll is correct with his ratio. Life throws curves, change ups, knucklers, and fastballs each day. It is our responsibility to respond accordingly. The only way is to ask ourselves, “what would Jesus do” at this very moment. Charles Sheldon brought this thought to us in his book “In His Steps” years ago.

Casting Crowns is one of my favorite Christian groups. I love the lyrics of their song titled, “Only Jesus”. In particular this verse.

Did I live the truth to the ones I love
Was my life the proof that there is only One
Whose name will last forever

Casting Crowns ~ Only Jesus

A pastor on the left coast said in a book a few years back, “it is not about you, it is about Jesus.” This is the absolute truth. Life is all about relationships. We have them from the day we enter this world. However, there is only one relationship that should matter the most, and that is our relationship to Jesus Christ.

A new commandment I give to you, that you love one another; as I have loved you, that you also love one another.

John 13:34