I do not, nor do any members of my family have ALS, but someone very dear to me had it and he eventually died from it. Delray Waite, the father of my best friend Alex Waite passed away in 2008 after nearly two years of battling this disease, but before we get to that lets go back to the start.
Delray was my second father. From the 5th grade I starting part time living with the Waites', I say this metaphorically because I still technically lived with my wonderful parents, but they would agree that I spend the majority of my time at their house. Alex was my best friend, his family was my favorite family on the whole earth. I did everything from go on family vacations, boating, regularly eating family dinner, and much more. I was another son. That's why what happened next would end up affecting me more than I could have ever imagined.
When Delray was diagnosed, I wasn't sure what to think. I remember he had recently gone in for carpal tunnel surgery but was not getting better, that was the first indicator that told the doctor something was wrong. Hearing the news and learning what exactly ALS was, was a blow to the family, what happened after the diagnosis was far worse than I ever imagined.
Watching from the outside I was able to get a less emotional view on the disease. I watched a man that I respected and loved so much go from an excited talented man who I once watched do a back flip off a diving board, to a body that could do nothing more than sit on a couch with his head propped straight and a button between his knees so he could select a set of words on a screen in from of him that he wanted to say, because his lungs were barely strong enough to support breathing, speaking was nearly impossible.
In the span of two years the I could see exactly what ALS did to his body, it started out in his hands and feet. It started subtle, he lost his ability to grip things with his hands tightly, this made eating difficult, so all of his cutlery was equipped with foam handle grips to help him hold better. His walked moved from a light glide to a clunky thud. After about a year he could not walk without assistance, he was confined almost permanently to a jazzy electric scooter, he could no longer feed himself and his speech was slurred. Around a year and a half he had a special scooter that he could control with his head, because he had lost control of his hands. His body had transformed from a strong confident man, to a weak, feeble body. The man that I had learned so much from, so many life lessons, so many life experiences now had only one more left to teach me.
Endurance to the end.
The worst part of ALS is not that you slowly lose function of all of your body. The worst part is that your brain does not get nearly as affected as the rest of your body. Imagine your worst nightmare where you want to scream but can't, or want to run away but your feet won't move. Now imagine that being your life. Your brain is working like normal, you can think, problem solve, communicate, do everything like you've always been able to, but your body cannot. As hard as you try or will your body to move, it just won't. That is the worst thing that I've ever seen anyone have to go through.
Delray was my second father, he helped raise me, and for the few short years that I had the honor of knowing him he taught me more than possibly anyone save Christ himself. Delray never gave up, he never had a negative attitude, he always fought, and more than anything he knew that even though his body was going to die his spirit was going to live on forever. The best comfort anyone can ever have is knowing that the person that they loved so much is now able to do those things that they could not here on Earth. Delray now has a perfect body, he is no longer in pain. If he wants to move he can, what he thinks he can do. His example has motivated me and sculpted me into the person I am today, the husband I am today, and the father I will be in the future, because he was an incredible father.
I have not felt closer to any crowd funded project in my life before the Ice Bucket challenge began. I recently challenged myself, not to dump a bucket of water on my heard, but to take an active roll, not only am I donating to the ALS foundation, but I am starting to make donations a monthly activity. If we all join together for a good cause we can change the world. President Dieter F. Uchtdorf of the Quorum of the Twelve Apostles of the Church of Jesus Christ of Latter Day Saints taught us that we don't need to do all of the work ourselves. Life is too big for us to do it alone, but if we all lift where we stand, whether we have $5 in our bank account, or $5,000,000 if we all do what little we can, we will change the world. These donations may help that one underfunded Doctor finally find the solution and end this terrible disease.
Delray Waite, the man that inspired me to be the man I am today.
For more information or ways to donate go to This Website.
Photo borrowed from The Waite Family. (I hope it's OK that I used it)
Delray was my second father. From the 5th grade I starting part time living with the Waites', I say this metaphorically because I still technically lived with my wonderful parents, but they would agree that I spend the majority of my time at their house. Alex was my best friend, his family was my favorite family on the whole earth. I did everything from go on family vacations, boating, regularly eating family dinner, and much more. I was another son. That's why what happened next would end up affecting me more than I could have ever imagined.
When Delray was diagnosed, I wasn't sure what to think. I remember he had recently gone in for carpal tunnel surgery but was not getting better, that was the first indicator that told the doctor something was wrong. Hearing the news and learning what exactly ALS was, was a blow to the family, what happened after the diagnosis was far worse than I ever imagined.
Watching from the outside I was able to get a less emotional view on the disease. I watched a man that I respected and loved so much go from an excited talented man who I once watched do a back flip off a diving board, to a body that could do nothing more than sit on a couch with his head propped straight and a button between his knees so he could select a set of words on a screen in from of him that he wanted to say, because his lungs were barely strong enough to support breathing, speaking was nearly impossible.
In the span of two years the I could see exactly what ALS did to his body, it started out in his hands and feet. It started subtle, he lost his ability to grip things with his hands tightly, this made eating difficult, so all of his cutlery was equipped with foam handle grips to help him hold better. His walked moved from a light glide to a clunky thud. After about a year he could not walk without assistance, he was confined almost permanently to a jazzy electric scooter, he could no longer feed himself and his speech was slurred. Around a year and a half he had a special scooter that he could control with his head, because he had lost control of his hands. His body had transformed from a strong confident man, to a weak, feeble body. The man that I had learned so much from, so many life lessons, so many life experiences now had only one more left to teach me.
Endurance to the end.
The worst part of ALS is not that you slowly lose function of all of your body. The worst part is that your brain does not get nearly as affected as the rest of your body. Imagine your worst nightmare where you want to scream but can't, or want to run away but your feet won't move. Now imagine that being your life. Your brain is working like normal, you can think, problem solve, communicate, do everything like you've always been able to, but your body cannot. As hard as you try or will your body to move, it just won't. That is the worst thing that I've ever seen anyone have to go through.
Delray was my second father, he helped raise me, and for the few short years that I had the honor of knowing him he taught me more than possibly anyone save Christ himself. Delray never gave up, he never had a negative attitude, he always fought, and more than anything he knew that even though his body was going to die his spirit was going to live on forever. The best comfort anyone can ever have is knowing that the person that they loved so much is now able to do those things that they could not here on Earth. Delray now has a perfect body, he is no longer in pain. If he wants to move he can, what he thinks he can do. His example has motivated me and sculpted me into the person I am today, the husband I am today, and the father I will be in the future, because he was an incredible father.
I have not felt closer to any crowd funded project in my life before the Ice Bucket challenge began. I recently challenged myself, not to dump a bucket of water on my heard, but to take an active roll, not only am I donating to the ALS foundation, but I am starting to make donations a monthly activity. If we all join together for a good cause we can change the world. President Dieter F. Uchtdorf of the Quorum of the Twelve Apostles of the Church of Jesus Christ of Latter Day Saints taught us that we don't need to do all of the work ourselves. Life is too big for us to do it alone, but if we all lift where we stand, whether we have $5 in our bank account, or $5,000,000 if we all do what little we can, we will change the world. These donations may help that one underfunded Doctor finally find the solution and end this terrible disease.
Delray Waite, the man that inspired me to be the man I am today.
For more information or ways to donate go to This Website.
Photo borrowed from The Waite Family. (I hope it's OK that I used it)
Thank you Brent. Those two years were really hard for me and I hadn't supposed it would be hard on those outside the family, as you have portrayed. DelRay Waite was truly an amazing man that taught me almost everything that I know about this life. Without him it has been rocky and bumpy. I still learn from him everyday through the example that he left behind from my brothers, mother, and even friends. His influence lives through all those he touched. I can't tell you how thankful I am that you wrote this. I don't think I have ever admitted this to anyone but I am scared to death that this disease will pass down. I don't know that I could bear another member of my family going through this or even myself. When I am in the lowest places in that tempest of fear and doubt my father always comes to mind. There were times that he could have just given up and vegged out - literally - but he didn't. There were times that I would get frustrated and walk away from the situations that were happening. He would come and find me and somehow get his weak arms to lift to my shoulder. He knew how hard it was. He knew it was painful. He did what he could to make sure we knew he was okay, that it was okay. I cry as I write this but not from a memory of the pain, from a memory of the love, kindness, charity, fatherlyness, gentleness, and genuine care that he left here and still shares with us. A better example of Christ, I do not know. People say they strive to be like Christ, that is fantastic. What striving to be like Christ means to me, is striving to be like my father, DelRay Waite. Big boots to fill. but he proved it is possible.
ReplyDeleteThank you Brent.
Alex Waite
P.S. That picture sums up his attitude/character in one picture. Perfect pick. :)