ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. ALS is also known as Lou Gehrig's disease. You have heard more about ALS over the last 5-10 years. The Ice Bucket challenge blew up all over social media to raise money for ALS which was great to see. To think there is nothing medically speaking to do for ALS after all these years is somewhat mind blowing. I hope and pray that someday they will have a treatment to slow or stop the progression of ALS. There are several studies going on today that may lead to a treatment.
I wanted to write about ALS because it directly has affected my life twice. If you are not familiar with ALS it is a fatal disease with a life expectancy of two to five years from diagnosis. My first experience with ALS was with my aunt Karen and uncle Nels. We were told that Uncle Nels had been diagnosed with ALS. I really did not know what to think or even really the severity and what it was. I scheduled a trip up to Michigan to visit and help with some odd chores around their house. I started to read about ALS to see what was going on and how I could help. I am always positive and expect to get the best results and keep everyone positive. Now that I know about ALS and have seen ALS, I could never imagine hearing those words as a diagnosis. A Doctor is telling you that you are going to die, and, in most cases, you really do not have that long to live. Not to mention you will not be able to do anything on your own once the disease progresses. This news would turn anyone’s world upside down.
Well, my Uncle Nels was a fun, outgoing, happy, and positive person. Even in the face of ALS he kept a positive attitude and started checking off things on his bucket list. I regret not being there more and probably not grasping the entire situation. It is hard to process especially when you are not there daily. Over the first several years my uncle did as much as he could do and at least in the presence of people kept a very great positive outlook. I can only imagine that there were a lot of sad times and scary thoughts. I am sure my aunt and him had some really hard struggles way more than most people know dealing with this tragic situation. How could you not be devastated? In my uncle’s case he was active and loved Michigan State football, golfing, bowling, and just being outside. He enjoyed Cedar Point and all the roller coasters. His dream was to retire with my aunt and live in Florida on a golf course. He could play his golf, drink his beer, and most importantly live out his dream with my aunt. I was particularly close with my aunt and uncle; I always shared and felt a special bond with them both. I was a pain in the butt growing up and probably drove them crazy at times, but as I became an adult, I always had a loving and great relationship with them. I cherished every visit. It was so nice to visit and go to dinner, cookout, drink some beers, go to a football game, and just spend time with them catching up about life.
My uncle ended up living over six years with ALS which is amazing. The last portion where ALS continued to destroy his body becomes very difficult. Difficult to see someone you love dearly struggling and there is nothing you can do at all to help. Difficult is not the word to describe what my aunt went through- I feel like I failed her some because my lack of just not knowing what she was dealing with on a daily basis. She was struggling as my uncle’s primary caretaker. She had some help, but she took the brunt of it on all by herself. She is an amazing person, and it takes a very special person to be a caregiver. She was there every step of the way for my uncle.
I can’t imagine knowing you are going to pass away and being dependent for almost everything and not being able to do anything on your own. You can’t walk, can’t shower, can’t go to the bathroom, can’t feed yourself, can’t get dressed, and the list goes on and on.
My uncle wrote a list of NEVERS when he was diagnosed. It is heart breaking to read and think about what he was feeling. He will never drive again- never get in a car roll down the windows and drive ANYWHERE. He will never hug my aunt again or hold her hand and walk down the beach, play golf, go bowling, and this list goes on and on as well. Things we all take for granted every single day. To a person with ALS to give a hug would mean the world and they can’t do it. To hold their significant other- they can’t do it. To stand up and walk to the kitchen and grab a drink- can’t do it. Simple task of taking a shower or going to the bathroom are taken away from you.
My uncle list of things he would never be able to do again living with ALS. We all were given a copy of this at his funeral service. My uncle was an amazing person. I was lucky that I had him in my life.
My aunt and uncle were two people in my life that I respected, loved, cherished time with, laughed with, who supported me, and meant so much to not only me but my entire family. The memories of spending every Thanksgiving together growing up and having Christmases together in Ohio. We attended college football games every year and a ton of memories and visits in between. Most of all my aunt and uncle were my family but more importantly a couple of my best friends. I will always cherish the time I had with my uncle.
My second encounter with this horrific disease of ALS was with my High School friend- Scott Bolek.
Now my second go around with ALS I knew from day one what Scott was up against. I remember like it was yesterday sitting at my brother’s house with my family on Christmas Eve- my phone rang it was Scott- He said “Mark I have ALS”- Those three letters stung. Once again, someone just told Scott that he has a fatal disease and not long to live. Merry Christmas, right? I responded to Scott trying to make him have any hope at all- I said on that phone call that Jenette and I will be here for you every step of the way. I promise you I will not let you go through this alone. From that day I can say my wife and I and even our kiddos were there for Scott and his family every step of the way that we could be. I think maybe at first, I grasp what laid ahead for Scott maybe more than he did initially. Jamie his wife stepped up and was tackling every challenge just like my aunt did. It takes a special person to endure and watch this disease progress. With Scott, I saw myself-
This could happen to me or anyone. Scott and I were the same age- we went to high school together- Scott had young kids. Grady his son was in 1 st grade. Grady was going to grow up without his dad. I thought about all that Scott would miss- Grady playing HS football- Parents night- Getting his driver’s license- his first car (Scott loved cars)- maybe working with him/taking over his concrete business.
So many life events Scott knew he would miss and not be around for. One night we talked, and I tried to get Scott to leave some thoughts and recordings on topics for Grady and his family to look back on. It was sad and we both cried but I think Scott always felt like he had more time than he ended up having. Scott was officially diagnosed 12/24/2018 and passed away 4/27/2020. Scott lived 16 months after hearing that terrible news on Christmas Eve.
Scott and I met in Jr High School in North Ridgeville. We played football together through High School. We kept in touch after high school. We lived together in Strongsville where we rented an apartment together for a year. We took several vacations together going to Vegas and Cancun two of our more memorable places. Scott loved boating and always had a boat so there were many weekends out at Put in Bay. We both had motorcycles so rode those too fast, snow mobiles, went to Norwalk raceway, went out to bars (way too much), owned a business together, Mohican canoeing trips, too many sporting events and concerts to count, and just so many memories over our 30+ years of friendship. I would say the last 16 months of our friendship were so much more than the previous 30 years. I tried to make Scott feel like he was loved and we tried to do as much as we could with him.
We talked everyday several times a day. Our families spent as much time together as we could. We did Thanksgiving, Christmas, and Easter together. Some other close friends and I from high school tried to do as much as we could with Scott. None of us knew what he must be thinking and how he was feeling. I can only imagine waking up every morning looking at my wife and kids knowing I have very little time left. What is going to happen to my family? Will they forget about me? Will they be, ok? Not to mention just the thought of not being with your kids is enough to make me breakdown by itself.
My aunt said one time and I will never ever forget it. Be kind to people- If you see someone hold the door for them—Anything. What she meant was to try and make someone else’s day a little better if you can. Smile let people know you care. Be polite. She said you never know what others are dealing with in their life. She is right – she was that person- she was struggling being a caregiver to my uncle watching her husband pass away slowly and all her dreams and future plans were not going to happen. She was that person that got out of the house for an hour while someone came to help take care of my uncle. She had to run to the grocery store or pick up prescriptions and rush around to get back to my uncle. The last thing she needed was people out and about to treat her bad or be rude because they were having a bad day or were in a hurry. Maybe we all need to stop and think about that next time we are out- hold the door for someone- smile- let them go ahead of you in line- don’t beep your horn because you are so impatient- buy someone a coffee- BE KIND!
I tell my boys every morning as I drop them off at school – Smile – Be kind- treat people nice and do something nice for someone today. My wife is the same way and I think it has worked so far, we have some very kind and compassionate kids. The boys probably get tired of hearing it but I know they understand it.
With Scott as many memories, as we made over 30 years the last 16 months we made just as many. We went to Cavs games, Casino trips, dinners, Holiday’s spent together, concerts, talked stocks/investing, and just hung out as much as we could. Scott wanted my family to move out by him and his family. He pushed and looked for land. I am not sure Jenette, and I wanted to move at the time- the house we lived in was paid off for over 10 years and we lived in a development with kids all over. However, building us a house gave Scott so much joy and things to look forward too. It was his mission to get this done and to Jenette and I it was worth it right there. It allowed us to spend so much more time together planning, meetings, and talking house stuff. Scott was on top of every meeting and step- He was happy, and I think he felt like he was contributing (something ALS takes away from you.) Unfortunanlty, Scott did not get to see the final project complete, but he had everything lined up and people in place to do all the work. He saw the beginning just not the final project. Our families remain close and to this day Scott’s family is part of our family. Jenette and Jamie (his wife) are as close as can be and we spend as much time together as we can with them.
One of the best memories for Scott over his last year was Grady playing football. Scott was able to watch Grady play football and have a great season. This brought Scott so much joy. It was something he looked forward to each and every week. These are all the things he wanted to be here for and will miss seeing. How do you cram a lifetime into a couple years? We tried to give Scott as many memories and joys as possible. To keep him busy and feeling loved. It was important for me. I miss him being here to talk to. Life is short- We hear this all the time but truly cherish each day and make memories.
My hope is that someday they have a treatment for ALS. It will not bring back my uncle or Scott, but it would be amazing for all those people who are issued a terminal diagnosis. After watching ALS and watching loved ones with cancer (both are terrible). At least with cancer you have a fighting chance and some hope of beating it or have it go into remission. Currently there is no hope for a person who is told they have ALS. It is a terrible progression of a disease to watch.
If anything – I learned to always try and be kind to everyone for you never know what someone else is dealing with in their life. It could be someone like my aunt who just gets out of the house for a couple hours and is a caregiver. It could be someone just lost a spouse, mother, or father. It could be someone just lost their job and experiencing financial stress. When you cross paths with anyone the best you can do is to be happy, smile, and be kind. A small act of kindness can go a very long way. I loved my uncle and he taught me so much I was blessed he was family to me. I loved Scott and I am thankful we became such good friends. I hope I can be a part of his family and fill in even in the smallest of ways in his absence for his family.
Facebook Live | Facebook (This was Scott’s service on Facebook- I spoke at 24:30 for about 5 mins.) This just tells the story of our friendship.)