Change Begins Within

I have never really enjoyed New Year’s Eve. There were not many that were too enjoyable for me. I was also never much for New Years resolutions, either. For many, it leads to failure and disappointment. Rather than one day a year, I have a daily resolution, which allows me to focus on the now.

 I truly believe that if things aren’t going the way you want, it is up to each of us to manifest the changes that are needed to affect those things we can control. That can only happen when change begins within. I tell my 11-year-old son the same thing before he takes the ice for a hockey game. I ask him which two things he can control no matter how the game goes, and he responds “effort and attitude.” What he hasn’t realized yet is that it’s not just a hockey or a sports mantra. It can and will work for every aspect of his life: sports, school, work, friendship, marriage, etc.

 So, what is my daily resolution? To be a better father, husband, brother, son, and friend than I was yesterday. To do that, it begins within myself. Every day I wake up, I am given the opportunity to enjoy another day of my life. I’m human, so I know I fail at something every day. But I pray for forgiveness and try to be better the next one.

Isn’t that what most New Year resolutions are, anyway? Changes that we want to accomplish? Well, why wait for January 1st to start? I understand we probably have long-term goals as well, but what you do today will probably affect that, too. My point is that we all need to take ownership of who we are and if we don’t like it, then we have the power to change it. Change can be quite difficult for many of us to tread, especially if we are alone. But I believe it is possible for everyone.

 So, if you are like me and didn’t make some grand resolution a few weeks ago, try my idea. Heck, try it anyway. You are your own critic, so be honest with yourself. But if you expect changes to occur, remember changes begin within.

From Great to Awesome

By now, most people in the ALS community know the phrase “Awesome Ain’t Easy,” which was made popular by the great Steve Gleason. What separates good from great from awesome? Perhaps it is different to each and everyone of us. But, for me, I have had many examples of when things went from being great to awesome. This past weekend was the perfect example.

 I have said it many times, but I am very blessed. I have a wonderful family, great friends and a support system in place to help ease the burden of what ALS brings to a patient and the family. I have also had the opportunity to speak to organizations and be a part of the Wisconsin Chapter in ways that have been very rewarding personally. As hard as traveling has become, I had an opportunity to go to New Orleans last weekend to see Steve Gleason, and to witness an interview between him and Green Bay Packer Morgan Burnett. I was also told that I would be able to attend the Sunday night football game and be on the field before it started. The cost of the flight and tickets to the game were expensive and, although I knew we probably couldn’t afford it, I could not pass up this once-in-a-lifetime opportunity. What a great adventure I had in store for that weekend.

 What happened next made it become an awesome adventure. As parents, I believe we are in the business of making memories for our children. Sometimes, things just happen that make a memory become great. Other times, it takes a lot of planning – like a trip to Disney World or some other fun family vacation. So, what happened in New Orleans to make this an awesome adventure? My two oldest sons, Dan and Jake, showed up unannounced to surprise me and be a part of the weekend. Jake and Dan finally got to meet Steve Gleason, and Jake finally got to personally thank Steve for sending us to Italy 2 1/2 years ago. Of course, the other highlight was going into the Superdome and onto the field two hours before gametime to watch the Saints and the Packers go through their warm-ups. What an unbelievable experience. To share it with two of my children made it go from being a great adventure to an awesome adventure.

So, like I said, I am very blessed. I’m seven years into this fight with ALS and, somehow, I am still experiencing awesome moments and sharing them with my family.

Many people made last weekend happen and for that I’m very grateful. I don’t know what the future holds, but I do know that every day I wake up, I have a chance to make that day count. And sometimes a good day becomes a great day, and a great day becomes an awesome day. And I always remember, as Steve says, “Awesome Ain’t Easy.”

 

Not An Ordinary Ice Bucket Challenge

By now, most of you have seen many videos of people dumping ice water over their heads. I am no different. I have seen at least one hundred videos and even did one myself. Each video meant something for the person doing it. But what took place at a golf outing brought me to tears.

I have been part of a golf outing for 20 years. Actually, this would have been the 20^th year. But due to my progression, I could not make it. I went the last three or four years and was just driven around the course watching, but I was still a part of the fun. Fathers are now bringing sons and I had hoped to be part of that experience, but that was not in the cards.

I challenged the golfers at the outing to do an ice bucket challenge since I couldn’t be there. Little did I know that my good friend who runs the outing, Scott, had already put the wheels in motion. He challenged the golfers to try and raise $100 each. What happened brought me to tears. If they each raised the minimum amount, the total would have been about $3,000. But the final amount raised was almost $13,000. That is not a typo. Friends, friends of friends, and their friends came together to make a difference in my family’s life. My wife and I were overwhelmed with their love and support. All we can do is say thank you, which doesn’t seem like enough.

So, now what? The ice has melted and millions of dollars have been raised. More studies will be funded and many more families will be helped. We all want a cure tomorrow but it won’t happen overnight. Progress is being made and will continue to, especially if those who are now aware of ALS and donated to the cause decide to stay engaged with it. For my family and I, we are forever changed and now have some extra funds to help with my medical costs all because of a group of golfers who were challenged and went beyond the norm. Once again, thank you.

7 Years of The New Normal

Next month will be the seventh year since the devastating news of ALS first entered my life. How could this be? My children were one, three, eleven and thirteen at the time. Now I have a third and fifth grader, and just sent my second son off to college to join his older brother. Statistically, I was not supposed to be here to see any of these things happen in my New Normal.

 I can’t summarize seven years in one blog, but I can tell you it has been one hell of a roller coaster ride. I was inspired to write this blog because of my neighbors behind us. They are a wonderful family with two great kids – a three-year-old boy and a one-year-old girl. I often sit on my patio and watch them play. Then it hit me; what I was looking at was my family seven years ago. Healthy parents and kids. Then a cramp and a terminal diagnosis. It brought home again how quickly life can turn from normal to a new normal. You never think something like that will happen to you; then it does. Ninety percent of ALS victims are chosen at random. It’s one of the worst lotteries to be involved in.

 So, how do I cope? That is probably one of the most common questions I get. How’s it going? How can I help? The best answer I give is that I live in the moment. A good example was this summer. I was lucky enough to see Zac Brown Band in the front row. People spent more time on their phones, taking pictures and videos, than just living in the moment and enjoying what was happening right in front of them. You also have to stay ahead of the disease. Part of living in the moment is taking care of some personal decisions. There are many depressing things I’m going through right now that need to be done. As depressing as it is, it will be all planned and decisions made. My advice to you is that you do these before you have to. I’m sure it’s a much easier process.

 Do you know how many minutes are in a year? 525,600. Think about how many moments happen in a day, a week, a year. Enough that I know every year beyond the 2-5 years I was given is probably more meaningful to me than most. And the best moments seem to revolve around a common theme. That theme is love! The love of family, friends, and even strangers make the best moments. It makes me think of a song called Seasons of Love from the Broadway play Rent.

 So, lots of ups and downs, laughter, and tears. I feel like I’m living in an overtime that I hope extends another seven years and beyond. You never know, the tsunami that hit the past month that has soaked the nation in ice water could result in a gift that could rid our world of ALS and cure those who are battling it every day. In the meantime, I’ll keep enjoying the moments in every day.

 

Jungle Jim

No, I’m not heading to the Amazon for an adventure trip. But I have experienced some interesting situations that opened my eyes once again. 

Everyone has been to a playground and played on or watched kids play on a jungle gym. Through the eyes of a child, it is just a structure that provides a challenge and enjoyment. 

Once I started to use my electric wheelchair, I noticed many different reactions. Kids around 5-8 years old give you a good stare. You can see their brain working overtime trying to figure out what is going on with me. Why is he in this chair and how does it work? Kids around 10-13 years old give me looks but many times give me a smile, and you can see a sense of compassion beginning at a young age. After the age of 15, it is the old 80/20 rule. Eighty percent of people are considerate and helpful, but 20 percent are oblivious and inconsiderate. 

That leaves the 1-3 year olds. What do they think about when they see me and my chair? Well, apparently, I can be a fun jungle gym. I heard a similar story from another ALS patient. To these young and innocent children, this is a great climbing apparatus. This chair that I’m dependent upon and screams disability to me, screams something completely different to a very young child. The 3 year olds are fascinated with the buttons and joystick, and ask questions about every hook, wheel and pad. I take them for rides and let them sit on my lap to experience the chair fold almost flat so we can lay down. The youngest children use the chair to pull themselves up and climb, making me and my chair a true Jungle Jim. 

What do I take from this? I want to be around a lot more 1-3 year olds. I’m not disabled around them. I’m interesting and different but in a cool way; at least my chair is. I hope my daughter never tires of going for rides with me on my lap. It is a moment we share that means more to me than she realizes as she continues to grow up. Once you become “different,” you sense the stares and reactions very quickly. But it is always refreshing to get the stares and reactions from young children before their innocence gets lost in our complicated world. 

 

Political Correctness

In my opinion, we live in a country where political correctness has gone way overboard. It seems that if just a few people are offended by something that 98% of people are not, it is changed as to not offend the few. It has gotten way out of hand but I have never been personally affected by any of these big issues.

 With this in mind, let’s talk about sports. As many of you know, I am a big sports fan. Athletes get hurt all of the time in sports. Let’s just focus on the big four sports in America – those being football, hockey, basketball and baseball. Football is a collision sport where many careers end by one violent hit. When players get hurt, they are put on the injured list. Hockey is also a rough sport. You can see someone get cut and then immediately stitched up so they can continue to play. I’ve seen hockey players play with a broken jaw by having a special visor on their helmet. These guys are tough yet sometimes they can’t play for a while and are put on the injured list. Basketball is getting rougher and the knees take a beating. Just ask Dwayne Wade. Throughout the year, players are put on and taken off of that injured list.

 Now, let’s talk about baseball. The Brewers are our local team. Many players get hurt throughout the season. If a player pulls a muscle and is going to miss more than a few weeks of playing time, do you know what list he goes on? Well, it’s not the injured list. It’s the DISABLED list. That’s right, the disabled list. Two weekends ago, I attended the Chasin’ A Cure tailgate party at Miller Park to benefit those patients and families affected by ALS. As those of us patients sat in our wheelchairs unable to do many of the simple things that most take for granted, it dawned upon me that I found myself offended by this situation. I wondered if I’ve become over sensitive. Maybe. But, then again, maybe not. I asked a few others and found out I wasn’t alone. The bottom line is that I am disabled. I get a disability check and even a disabled license plate to show for it. I will never regain what I’ve lost. In fact, as my dear friend Trickett, an ALS patient herself, says, “I wake up each day knowing this is the strongest I will ever be again.” Meanwhile, just a few days ago, a pitcher on our team was just added to the disabled list with “shoulder tightness.”

 So, what am I asking for? It’s simple: that MLB follow the lead of the other major sports and when someone gets hurt, put them on the injured list and not the disabled list. Unless you’re disabled, you probably won’t even notice this small change of one word. But if you are truly disabled, chances are you will. In the age of political correctness, this is one name change that will not cause a furor or debate because I believe we would all agree that it is the right thing to do.

 

Baseball And Failure

What’s more American than baseball, hot dogs and apple pie? Baseball is considered America’s past time. Not everyone loves baseball but bear with me. Many consider hitting a round ball with a round bat the most difficult of all athletic things, especially when it is tossed at the batter at speeds over 90 mph. That is why failure is so high in baseball. Which brings me to failure. Nobody likes to fail but you better learn to accept it if you choose to play this sport. 

I grew up playing baseball. Not only little league but most days kids would ride their bikes to the park and we would play for hours. That doesn’t happen today as everything is structured. My oldest son played and now my ten year old does as well. In fact, Evan loves it and I love the teachable moments this game provides. Evan is very competitive and baseball has challenged him. Last year was a struggle as his team won only two games all year which made for a long summer. But it taught him some good lessons about teamwork and sportsmanship. This year he has seen better success on the field with many more wins.  

One thing I truly believe about sports is that you have to learn how to fail before you can learn how to succeed. Earlier this summer, Evan found himself up to bat in the last inning with the bases loaded and the game on the line. He struck out and the game was over. He cried and was distraught thinking he lost the game. It was tough to see, but what a great teachable moment for me as a parent. Sometimes I seek these situations out as a father with limited time, and sometimes life presents them to you.

So, it was time for the failure talk. Not only about baseball but about life as well. I explained to him about how the best baseball players fail 70 percent of the time. I also reviewed all of the opportunities the whole game presented for the team. Baseball is won and lost as a team, not by a single player. Two weeks later, he was in the same situation. This time he hit a triple to tie the game and stole home to score the winning run. To his credit, he was happy with his success but said it was a great team win. 

Competition builds discipline, character and teamwork, which are building blocks for the future. Failure is one of those building blocks, too. If you talk to any successful person whether in sports or business or life, they will always have a story about the failures they endured that preceded their success. That’s why I love baseball, especially for youth. If they can handle a 70% failure rate and realize success, it should be a good building block for future endeavors during their lifetime. 

 

Who Are You Feeding?

Try as we may to make life simple, it is hard and can be quite complicated. The news seems to be filled with more evil than good. The good is out there but it doesn’t make the headlines. Recently, my hometown made national news because twelve-year-old girls tried to kill a classmate. We live in a wonderful community and the goodness is rising up to help the injured child. We all wonder how this could happen, just like the senseless school shootings and other tragedies that occur.

 

Like many others, I don’t have the answers but it reminded me of the story about the two wolves that live inside of each of us. It goes like this:

 

 A grandfather was telling his grandson the story of a terrible fight and it is between two wolves. One is evil – he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.” He continued, “The other is good – he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith. The same fight is going on inside you – and inside every other person, too.”

 

The grandson thought about it for a minute and then asked his grandfather, “Which wolf will win?”

 

The grandfather simply replied, “The one you feed.”

 

We try to protect our children but they are exposed to more negativity at an earlier age than ever before. And it is not just the kids. Those of us who are adults and parents are the role models for the behaviors of our kids. Nobody is perfect and certainly there are no guarantees in life. But I do believe that if we all feed the good wolf inside of us, this world will be a much happier, peaceful place to live in.

 

Building Your Resume

Easter is a time of renewal and rebirth. To me, it is the most important religious holiday as it gives all of us hope for eternal life if you are a Christian. It made me pause and reflect on how I am living my life and building my resume for that day when my human life ends.

How many resumes have you built? The first one was probably built for college. My older son’s application process for college was not that simple. They don’t just ask for your GPA. They want SAT or ACT scores. They look at what you do with your free time – whether it’s sports, community service, work, school clubs, etc. What you have done with your life to that point all goes into each university’s selection process that determines whether or not you’re accepted. It’s a very competitive process during which many people get denied more often than not to most universities.

Then there’s your work resume. This is so important that there are professional resume writers and books galore that explain how to properly do this. That resume will show all of your strengths and examples of what you have accomplished to make you the best candidate for that promotion or new job. This resume will constantly be updated as your professional career continues.

How often have you thought about the resume of your life? There is a line on a resume that asks what your objective is. What is your objective? Is it happiness? Love? Friendship? My objective is to get to heaven. So, what am I doing and how am I living my life to achieve my objective? I doubt enough people have gone through the process of building a resume for your life. If you haven’t, you should do it and see how you look to date at achieving your resume’s objective. This process may open your eyes to what you are doing well and expose you to areas that are lacking. Trust me, I make mistakes every day but I also know forgiveness is achievable for everyone who wants it.

My resume is constantly being updated but my hope is that when the time comes, my resume will grant me access to the greatest place in the world. So, join me and start building the resume of your life.

 

The Packer Sweep

As many of you know I am a big Green Bay Packer fan. Being born in that city means it is in your blood. I recently watched a documentary on Vince Lombardi who many believe is the greatest coach and motivator who ever lived. His players would follow him anywhere. One of the bread and butter plays of those teams was the sweep. Pulling linemen from one side to the other side to provide more blocking and creating a bigger hole for the runners to go through. Even though the defense knew it was coming they couldn’t stop it because of the precision of eleven men doing their job.

It got me thinking of who I have followed in my life. As life comes at me who is creating the holes to go through and leading me to a greater good. Obviously for me the person providing the greatest opportunity to follow is God. Then I think of all the people who have led and motivated me.

My parents guided me for many years growing up and still are to this day. My mom is always there to lend an ear, and although my father has passed, his lessons and presence still resonate. I learned many business and sales techniques from the different bosses I have had. When I was diagnosed with ALS I had my faith, family, and friends to lean on but still something was missing. I had no one to relate to, no mentor to guide and lead me through this process. That all changed with one phone call from New Orleans a few years ago. Whether he wanted it or not, on that day Steve Gleason became my “pulling guard” leading me through the hole and showing me how to continue to lead a full life. I thought I was but see someone going through the same fight in the matter Steve did was very motivating. Trust me, there are many days it is easier to quit or give up but then I think of him and I push on. I don’t know how he feels about this role in his life but I’m not the only who feels this way about him.

I have since met other ALS patients who motivate me by their actions and I’ve been told the same by many others. It is like a relationship, when one is down the other is there to pick them up. We all need people to help lead us through life and if my life is any example I’ve had many people fill that role. Like the Packer Sweep it takes a team effort to find the greatest success. We can’t do it alone. And like Vince Lombardi was to those Packer teams, Steve Gleason is a leader to many of us fighting ALS.