Matthew’s Story

Site created on July 2, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  I am attaching a letter Matt wrote 5 days after his diagnosis.

A FACE TO 3 Letters

Wednesday, May 29, 2019
Hello friends.  After being diagnosed, I said, "I am so not putting this on social media."  But, after much thought, have decided to do exactly that.

First, I will tell you that I have been diagnosed with ALS. This is also known as Lou Gehrig's Disease.  It is a motor neuron disease that affects voluntary muscle movement.  It is not contagious.  The disease is progressive, which means the symptoms will become more severe, and noticeable over time.  ALS affects everyone differently, so there is no way to predict how quickly it will progress , or which muscle group it will affect.  There is currently no cure for the disease.

Something I would like you to know, is that even though ALS will change me physically, my ability to walk and talk,  I am still the same person inside.

I remember when the "ice bucket challenge" went viral.  I honestly could tell you that, I did not know what ALS was.  I am sharing this, so you can now put a face to the 3 letters.

Having close friends that recently had a tragedy in their life, sometimes we don't know what to say, so it is awkward when we see them in person. 

Because I feel that I walk sometimes like a palsy,  I feel like people are staring at me.  I got to thinking how we tend to stare at people when they are different, not even knowing what they might be going through.  So, I have an idea that I would like to share with you.

After reading so much overwhelming information on the internet, I have learned that if a person makes it to the final stages of ALS, that the last muscles to work are the eyes and mouth.  I thought, how will I be able to communicate to them, that I Love them?  How hard would that be?  Hearing your loved ones telling you that they love you, and not able to say it back?

This is where, I came up with an idea.  A wink.  You see someone having a tough time…give them a wink.  You see someone walking funny, smile and give them a wink.  Don't know exactly what to say to someone?  Smile and give them a wink.

I am mostly saddened, that all the people I care about will have to watch me slowly deteriorate, and eventually die.  On a positive note,  I have accepted this, and know where I will be when I die.  Faith, Family, and Friends is a motto said in our family.

My final thought to try to remember, is this.  If you are out, and about doing anything.  You could be shopping, driving your car, walking, boating, at a sporting event, at a bar…..whatever.  Keep in mind, that a person that may be having a tough time, or having a bad day isn't necessarily frowning.  They might be smiling, and grinning ear to ear.  Smile, and give them a wink.  If you see someone struggling physically, try not to stare.  Smile, and give them a wink.

I understand, some people will comment, and some will not know what to say.  It's ok. Smile, and give a wink.

Now, you can put a face to those 3 letters: ALS

Feel free to share this with anyone.

Please continue to pray for my family.

Matthew…..Matty to my friends. :)  ;)

 

 

 

 









Newest Update

December 04, 2020

Journal entry by Matthew Schotte —

This is a post I shared on Facebook for those of you who are not on it.😉

LOVE and FIGHT 

Why do I FIGHT for treatments for ALS? LOVE.
What exactly is LOVE? Have you ever thought, do they even know how much I LOVE them?
Does my wife know how much I LOVE her? Do my kids know how much I LOVE them? Do my brothers and sisters know how much I LOVE them?
I LOVE them so much, I'd die for them. If they are sick, I'd take their place, so they don't have to suffer. Have you ever thought that? I often feel that about my kids. They are 30 and 27 now, and I still feel that way. We want the absolute best for them. We don't want them to make the same mistakes we made. My brother Stephen once told me an analogy that he told his kids. He said " Imagine life is like a test. You're nervous and don't know the answers. Well, there's good news! I took the test. I know the right answers and the wrong answers. You only have to ask me. And you will ace the test." We don't want them to have hardships or pain.
When they hurt, I (we) hurt. Again, we do this, because we LOVE them.
When I think about my wife, my children, my brothers, my sisters, my parents, my in laws, my nephews, my nieces, my cousins, my uncles, my aunts, my brother in laws, my sister in laws, and lastly, my friends. The thought of any of these people listed above getting ALS makes me sick. If you are reading this, you obviously fall into one of these categories. 
I FIGHT for treatments and hopefully some day a cure for ALS. I don't think you understand how much I LOVE you. I don't want another person to FIGHT ALS. I'll take this and FIGHT for You. That's LOVE.
That makes me think of 1 thing. Who LOVES us that much? God. Did you relate to any of the things listed above? Do you LOVE anyone that much? That's how much God LOVES us. He knew that there should be consequences for our sin. He sent his son Jesus to die for our sins. That's LOVE. He took the test, all we have to do, is ask. Why do we go through hardships, why do we suffer physically? Sometimes it's a tough pill to swallow. We say, why is this happening to me? There is always a big picture. For me, I think it's to show people that in tough times, to lean on God's strength and see his LOVE for me. We don't understand why bad things happen to good people. If our life was so easy and smooth, we wouldn't typically call out to God. We typically call out to God in tough times. I FIGHT every day to make a difference in the ALS community. I LOVE you all that much. I don't want you, or one of your loved ones to FIGHT this horrible disease. I'll take the pain. I'll FIGHT for you. Do you see the correlation between LOVE and FIGHT?
Romans 6:23 "For the wages of sin is death, but the gift of life is Eternal life through Jesus Christ our Lord." We just have to ask.
I am sure that there will be treatments available some day soon for ALS, and that will someday lead to a cure. I am hopeful that these treatments that are stuck in the FDA process will be available to me soon. But in all honesty, I believe that I am mostly FIGHTING for you. 
I often get frustrated in trying to explain that ANYONE can get ALS. We often hear about people that get sick and say...Oh that's sad, but in our minds say, "That'll never happen to me." I can tell you, I would have thought that. No doubt. After all, my family history has nothing. Almost my entire family has lived a long life. Most dying of old age. How did this happen to me? Why did this happen to me? There is a much bigger picture, that God only knows. 
When you see the sunrise, when you see the sunset, when you see a rainbow, those are reminders of God's LOVE. What about the storm's? The tornadoes, the hurricanes, etc? These are also a reminder of God's LOVE. He wants us to lean on Him for strength, even though it's not so pretty. A friend once told me, "We all have disabilities, just some are more visible than others."
I'm still FIGHTING for you and me. I LOVE you ALL. 
Matty 😉
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