This is by far the most difficult decision I’ve had to make. I’m sure we all have made sacrifices in our lifetime. The biggest sacrifice I know of was by a man named Jesus. He gave his life so we can have eternal life.  

Of course there are many simple sacrifices we make every day. Most, if not all, parents would give their life for their child. What is the biggest sacrifice you’ve made?

ALS has stolen a lot from my life and my family.  It has affected every person in my family. It has produced tears and fears and changed all of our lives in different ways. 

This monster is sinking its teeth even further right now. Due to progression and financials, but mainly how this is affecting my younger kids I’ve made the decision to move into an assisted living center. I have done everything possible to be home with my family, but there has always been two things that worry me the most . My children watching me go through the dying process, and secondly, leaving them bankrupt from the financial burden ALS puts on the family. 

Obviously, this was never part of my plan, but it showed me that someone else has plan for me. Most people with ALS pass within two to five years. I’m in my ninth year and somehow I’m still making a difference in the lives of others. Being a father is the most rewarding job I’ve ever had. I’ve been lucky enough to be home everyday as they come back from school, we have time to talk and laugh about things that happened that day. I will miss that the most. I don’t think they fully understand why I’m doing this. One day they will realize it was done because of my love for them.

So now we start another new chapter. There are no guarantees about how this will play out. My hope is that my children will continue to grow and understand how much their parents love them , and how much Jesus loves them, as well. What I do know is that I still have the passion to fight this battle. I know I wouldn’t be here without the prayers and help of so many people. I will continue to ask for the same kind of support as I take on this change with all the new surroundings. 

So as we live through this sacrifice that we were forced to address, I hope to not only receive your prays and love for my family, but that it also causes you to reflect on choices that you have had to make or will have to make. The sacrifice is not the end of a path – it’s a change in direction your life’s journey has in store for you.

Pause for a Cause

As I sat here today, I realized that the walk to cure ALS is one week away. This walk is extremely important to many families in the state of Wisconsin. Since my diagnosis nine years ago, this will be my fifth walk. In the beginning I was afraid to attempt the walk because I thought it would be a sea of people, many who were close to death. I didn’t want myself or my four children to see that. However once I went, I quickly realized it was not a depressing sight but rather a hopeful situation with a lot of love, encouragement, and support.

Over the last few weeks I have seen or heard about many walks for several different causes. About twenty years ago after my divorce I had my first volunteer experience. It was my first Thanksgiving without my children. I felt I needed to do something to bring happiness to me. So I drove myself to a soup kitchen in downtown Milwuakee and served Thanksgiving dinner to those who otherwise would not get one. It made me realize that despite my personal situation I had a really good thing going – that I was still very blessed. Since that time I have given my time and talents to many different causes.

Many of you reading this have probably done the same thing I have. However, if you haven’t I would implore you to find a cause where you can make a difference in.

Another person’s life. I promise you that you will feel the warm weather that begins in your heart and will stick with you for many years to come. Obviously all of my support is going to ALS, and I would love to have you join me and many others fight find a cure for this hideous disease. If not ALS, find the cause that is close to you, your family or friends and take the time to pause for a cause.

Never Giving Up

One of the easiest things to do in life is to give up when adversity lies ahead of you. The hardest thing to do is to look at the impossible and make it possible by never giving up. This mindset can begin at any age, but the earlier the better. Nothing is impossible. There are many examples of people who failed repeatedly but, through hard work and not giving up, they finally succeeded. Some of the greatest inventions of our lifetime were the result of multiple failures and never giving up.

My daughter turns 10 years old in two weeks. I was diagnosed with ALS six months after she was born. At the time, I was told I had 1-3 years to live. I was facing the impossible with this devastating news. Trust me when I say that the easiest thing to do would have been to give up. But I didn’t. I have now lived three times longer than predicted. It has gotten more difficult but, as my friend Steve Gleason says, “Awesome ain’t easy.” Miracles are all around us, but many are never recognized.

I have many more dreams and goals I want to achieve. Some are simple and some very personal and some may say impossible. What may seem improbable or impossible may just become my finest moment. And if one of my dreams becomes one of my finest moments, it won’t be just mine. It will be shared with someone. Many would give up on these dreams, but not me. I refuse to give up on them. I have plenty of life and love to give to others.

I hope that as you read this, you reconsider something you may have given up on previously. Believe in yourself and have faith that anything is possible in life. As the great Jimmy Valvano said, “Laugh, cry, and think every day, and don’t give up; don’t ever give up.”

The Tale of this is Beautiful

If someone asked you what the most beautiful thing you’ve ever seen is, could you answer that question? I ask that because I have a feeling the answers would be very different. I also think that our own personal definition of beautiful changes as we grow up.

When I was diagnosed with ALS, I know my definition of beautiful was different than it is now. It’s almost as if my senses were tuned into a much more detailed frame of reference. Other than the obvious things, like the birth of my children, I think I took for granted beautiful things that I never noticed. Today, it is very clear what I think of as being beautiful.

Have you ever sat in the woods without moving or making a sound? I challenge you to try this sometime. If you’re like me, you will be stunned at the sounds and sights that nature provides for us to enjoy everyday. To me, that is beautiful. How about the simple sounds of a spring rain? You can see it, you can hear it, and, yes, you can even smell the beautiful spring rains.

I would guess that most people would mention their husband or wife when asked what they think is beautiful. I remember a friend telling me how a woman can change his life perspective of what true beauty really is. He said, first of all, it happened when he least expected it, and as beautiful as she was visually, it was the connection that came from the inside that made him realize just how beautiful this person was. He fell in love with that part, and the beauty that anyone can see visually was just icing on the cake.

I can honestly say that after my diagnosis, a deeper understanding of true beauty and what is beautiful became much more focused. I have met so many people during this journey that equate examples of what is beautiful. If I had not met these individuals, I think my journey and fight would have been much more difficult. I hate this disease with a passion, but I also would be lying if I didn’t admit that my purpose was much more clear.

I still have many wishes and goals and, yes, possibly a miracle to fight for. So, do me a favor and ask yourself what you find to be beautiful and then think of reasons why they are beautiful to you. It took me a horrible diagnosis for it just to become clear to me, but hopefully you can read this and take notice of everything around you that God has given us on this earth and enjoy your life one beautiful moment at a time.

Quenching My Thirst

Well, it took a long time but warmth has finally returned to us last weekend in Wisconsin. I heard my kids all say they were parched or thirsty. Nothing that a cold glass of water or Gatorade can’t fix.

But other thirsts still exist. Maybe you’ve been working so hard that you thirst for a vacation. Maybe you haven’t had a compliment in ages and just need your boss or spouse or friend to say something nice to you. There are many areas, but I want to talk about quenching your thirst for love.

Love is all around us. Even if you don’t have someone special in your life, you have the greatest love of all: God’s love. With his love you are never alone. This is important because life has its pitfalls and it is good to know God loves us and will take care of us all.

The greatest love I have ever felt was at my children’s birth. That was when I discovered unconditional love. Four times I felt that love and you can never divorce your kids, so it is eternal. For me, that is the truest kind of love.

My kids asked me one time about love vs. being in love. I don’t remember exactly what I said, but I remember saying that you can love many people at the same time but you can only be in love with one person at a time. At least that is my belief. Sometimes you may be very fulfilled but still have this small hole in your heart that is empty. Maybe you’re waiting for that perfect puzzle piece to fill that whole. You may not be ready to have that filled, so you never see it. But if you open the door and take a chance, you may find what you’re looking for – a beautiful person inside and out to quench your thirst for love.

Maybe the Beatles are right: All you need is love. We all deserve it. I’m one of the fortunate ones who has found love on many levels.

I love you all and feel it returned even more.

 

 

 

 

 

23 Days

23 days is all it took for me to get a better understanding of our health care system. And, with that, another reason why ALS sucks.

As many of you know, I had a terrible fall at my home in October. While standing in my bathroom, I lost my balance and let’s just say the tile floor won. My daughter, Katy, was my hero, though. Fighting through the fear, tears and hysteria, she managed to get my BiPAP machine into the bathroom so I could breathe, and then called 911 while my helper kept me alert until the ambulance arrived.

At the hospital, I was told I had a broken left clavicle, broken right forearm, and five facial fractures in my left cheek and eye orbital. Stitches and various bumps and bruises rounded out the damage. I was then asked how I was getting home that night. I couldn’t have been happier to have my wife at that moment. She handled that situation without getting unhinged. In my condition, I shouldn’t have been sent home, yet they didn’t want to admit me. Thankfully, I was admitted but was unsure what the next day would bring.

The next day came and I felt worse. My left eye was swollen shut, and I felt like I had been in a car accident because of the pain. Ye I wasn’t allowed to stay another night. Thankfully, my wife talked to hospice and I was approved for a five-day respite stay at a nearby short-term/ long-term nursing home. During my stay there, I never saw a doctor much less anyone who knew anything about ALS. But my time was up and I had to leave. I was falling through the cracks and my wife wouldn’t stand for it. She contacted the ALS clinic and told them what was happening, and they got me an ambulance to take me to the emergency room at the hospital where the ALS clinic is located. I was admitted to a great hospital, seen by doctors and had a plan to get home.

I spent five days there but then had to leave, and found a long-term acute care facility to take me since I wasn’t well enough to go home. I was told the average stay was 25 days for patients. Well, on the 5^th day, I was told insurance was cutting me off the next day. While I was excited to go home, we were not prepared with the proper home care. It was a scramble at home, but we found home health that has worked out. Without the generosity of many through my Go Fund Me site, I would be in a nursing home. Unfortunately, at a cost of $8,000 per month, those funds will run out in April.

So, there is the dilemma. ALS is a grey cloud that gets lost in our health care system. And with no home nursing coverage, families go bankrupt trying to care for their loved ones. I never realized how broken our healthcare system was until I got lost in it. That being said, all the people that cared for me were great. They are just limited by insurances companies. 23 days is all it took to realize how messed up our system is.

Inside Out

I recently saw a new animated movie called Inside Out. I had no idea what it was about but wanted to go with my younger kids, Evan and Katy. I was drawn in within minutes when a scene opened with a baby and the question was asked, “Do you ever wonder what is going on inside the head of a young baby?”

The emotions in the movie were joy, sadness, fear, anger and disgust. Babies and people carry these emotions inside but sometimes can’t show them or won’t show them. The first time your child smiles or coos is so heartwarming. But what if you had all these emotions but couldn’t express them? Welcome to what an ALS patient experiences at some point during their journey. I hate to think of what it will be like not to be able to express my emotions like joy, love, sadness and a host of others. I’m slowly losing my voice, which really sucks, but an even larger part of communicating is nonverbal. As a salesperson for many years, non-verbal communication was extremely important.

Thankfully, the Steve Gleason Act was recently passed and allows technology in the form of communication devices to get in the hands of all those that need it. Now I know I will always have a voice to speak to my loved ones. Tears won’t be an issue but not being able to laugh or smile will be a drag. ALS steals so much, but having all those emotions inside that I will want to express out might be the most frustrating thing.

The Lion King is my all-time favorite animated movie but Inside Out really spoke to me on another level. They may make these animated movies for kids, but most of them are better than any movie made for an adult.

Groundhog Day

Lord knows that, if I wanted to, I could write countless blogs about the perils of ALS and nothing else. Being and staying positive during this journey is a struggle, but lately my biggest struggle has been the fact that each day is basically the same as the day before. The monotony is driving me up the wall. It reminds me of the movie Groundhog Day with Bill Murray. In that movie, he wakes up and relives Groundhog Day over and over again.

In summary, here is my day. My wife, Susan, gets me up at 7 am to go to the bathroom and then I lay back in bed for a tube feeding. Then, the family leaves for the day and I lay in bed until my nurse’s aid arrives. She helps me out of bed and then shaves my face, brushes my teeth, showers me, and gets me dressed for the day. Then, I go sit in my recliner. My aid leaves and I watch television until my helper arrives around noon. Then it’s tube feeding number two. I either sit in my chair or lay in bed depending on my energy or comfort level. If it is nice, I can sit outside in my electric chair for a while, which is awesome. My help leaves around 4 pm or 5 pm, and then the kids get home from school and they have a sitter to help them until Susan gets home from work, which isn’t until around 7 pm. Then it’s tube feeding number three. By 8:30 pm, I’m given my evening medications and am in bed by around 9 pm. I watch a little television and fall asleep. Every day is almost exactly the same, over and over and over again.

Now I know why I loved my sales career: because every day was different. I never dealt with the monotony of a desk job or as a factory worker, etc. And every morning when I wake up, I am reminded of what my dear friend Trickett said, which is that today is the strongest I will ever be for the rest of my life (from a physical perspective). As you know, ALS does not affect the brain. But what I’m finding out is that as bad as the physical challenges are, for me, the mental challenge seems to be worse.

What is my purpose? What is my value? I feel like such a burden. Maybe life will be easier for my loved ones once I’m gone. These are just some of the ugly thoughts that go on in my head. Usually, I get through them, but I have way too much time to think myself into a bad funk. So whatever others or I can do to break up my own personal Groundhog Day, the better. Thank goodness summer has arrived. Just getting out of the house to smell the fresh air is enough to break up the monotony of my otherwise similar day.

Airport Layovers

Anyone who has traveled a lot knows that airline travel can be very annoying. You are at the mercy of the airliners and Mother Nature. When booking flights, I would pay more for nonstop flights. But that is more difficult when you’re not flying to major cities. If you need to switch planes, you will have the dreaded layover.

The airport layover can be frustrating but it can also allow for people watching. I love people watching, especially at airports. It’s a mass frenzy of people in motion. Are they coming or going? Business or pleasure? I’ve had the pleasure of seeing athletes, politicians and movie stars during layovers. My favorite sighting was in the Atlanta airport at a bookstore. I was standing there and, suddenly, to my left, was the beautiful Andie MacDowell. Now, I have had a crush on her since I met her on the movie set of Groundhog Day, which was filmed in Woodstock, Illinois, where I was working at the time. I still remember what she was wearing that day in the airport and I did say hello, and told her of our previous meeting. This was way before smart phones, so I don’t have a picture. But she was even more beautiful in person.

On my recent trip home from visiting some family in Raleigh, I had a layover in Charlotte. I was sitting in my electric chair and my sister was sitting by me at the gate. As I was looking around, I noticed a couple looking at me and the woman gave a nice smile. I smiled back, wondering if this was someone I had met but didn’t recall, or just someone smiling a heartfelt response to my condition. Suddenly, the couple walked toward me and the gentleman politely asked if I had ALS. Once again, before the ice bucket challenge this never happened and now it happens quite often. I responded yes, and he shared that he was recently diagnosed. I would not have guessed it, as he appeared normal from a physical standpoint. He asked me many questions and I freely answered them. It was a good conversation and I could sense he was concerned with what is ahead. Before we parted ways, his wife told my sister that this was a shot of adrenalin he needed. To see someone traveling, talking, and still living a meaningful life after seven years post diagnosis was just the shot of hope he needed. After his diagnosis, he didn’t think he would be around in 3-4 years and here I was! My sister told them about my blog and as fate would have it, they had been reading it for years. They couldn’t believe they had met and were talking to the author of jimsjourneywithals. Can you believe that?

I guess we were meant to meet each other that day. Me to give him some hope where there was despair and him to make me realize that I am making a difference in the lives of many I don’t know and will probably never meet. So don’t dread the airport layover as it may change your life profoundly, or at the least allow you to meet an actress of your dreams!

What’s In A Name?

Upon our birth, we are given a legal name. Perhaps it is a family name or a biblical name. Maybe it is just a name that your parents liked or has a special meaning. Regardless of the reason, that is your name going forward. But we know that as life goes on, people will call you by many different names.

Nicknames are the most common names others will call you. I had many growing up – uteaseme, youreasy, UTZ, and yourcheesy, which turned into my grade school nickname of cheeseball. I still remember my basketball coach saying, “Get the ball to cheeseball in the corner for the shot.” Today, the two nicknames I go by are Jimson (long story) and Uttee (another good story). I have nicknames for my kids, too, as I’m sure many of you do as well.

But my favorite name that people ended up calling me didn’t come until later in life. It wasn’t a new nickname and not many people call me this name. In fact, in the beginning, I was almost begging this person to call me this name I acquired. I became a dad for the first time on October 14, 1993. I was a dad, but it took many months before Danny called me dad for the first time. That three-letter word became the most beautiful word in my life. I became lucky enough to have that miracle happen three more times and now I have four kids who call me by my favorite name of dad. Being a parent or, in my case, a dad is the most difficult and rewarding job I could ever have. Being a parent first and a friend second is not that easy all of the time. And after having three boys, I am guilty when I say it is hardest with my daughter. Katy really knows how to work her dad over.

If you haven’t had a child yet, I’m not sure you fully understand the term of unconditional love. That is why dad is my favorite name to be called. God provided me four miracles to be a dad to and it is my job to do the best I can while I am here on earth. It is a title and a name that I don’t take lightly even though I have failed as a parent many times over the years while trying to do my best.

So, what’s in a name? I would say a lot. Growing up I never wanted to do anything to embarrass or discredit my last name because in doing so I would be embarrassing my parents, grandparents, and generations before them. My given name and fun nicknames all have a purpose but nothing will ever make me more proud than being called dad by my four children.