Living with a sense of humor helps me make it through life. It also is the only thing that kept my uncle alive. That’s a promise.
Robert. That’s my uncle’s name. I like to think that Heavenly Father took Robert away from us because Heaven needs a little more sense of humor. Even though this story is one of much heartache, and many tears, I hope to tell it with a bit of my uncle’s uplifting spirit.
Robert is my mom’s baby brother. He is the golden child; he is the only boy, you see. I think of this awful disease in a strange light. Think of a cow. You know how some farmers raise cows to be as plump as they can be without bursting, and then they send them to the slaughter so they can eventually be eaten? It’s pretty awful isn’t it? But guess what. You know those other cows that DIDN’T get slaughtered; they live long miserable lives of eating grass from familiar fields’ day-after-day. Meanwhile, those other cows lived short lives eating as much as they could and to them that was heaven, I’m sure! Now even though their lives were not of great length, those plump cows lived happy lives, and after they are gone they bring much happiness to testosterone crazed men who love to barbeque their lives away. Anyways, sorry to go off on a tangent about cows, but this all has a point. Robert refused to let a day go by that he wasn’t making someone, somewhere laugh. I don’t just mean laugh casually, I mean hysterically laugh until you find your chest hurting and your eyes watering. I remember always looking forward to Robert’s visits, but by the time I was a teenager his visits became sparse.
Shortly before his fortieth birthday Robert developed a pain in his arm that he couldn’t seem to ignore. After sometime of being irritated by it, and asking around as to what it could be, he and his family came to conclusion that he had Carpal Tunnel Syndrome. So he scheduled a doctor’s visit. The doctor wasn’t convinced that it was Carpal Tunnel Syndrome, so he ran a few tests. On Robert’s fortieth birthday he received a phone call informing him that what he thought to be a minor problem was in reality the end of his life. He was diagnosed with Lou-Gehrig’s Disease and told all about it and the time frame in which he had left to live. Imagine being told when you are but forty years old that you will only have five years left to live. Now imagine that you have a daughter who has a hole in her heart and has to survive off of a battery powered pump, and a son who is but seven years old and sees you as the center of his whole world. Wouldn’t that hurt you so much inside? Not Robert, not him.
Robert saw this as a challenge. A challenge as to how much happiness he could bring to others in the few years he had left in this world. So as his challenge began, so did ours.
Lou-Gehrig’s Disease, explained in a nice way, slowly shuts down all the muscles in your body, drains your spinal fluid, and leaves you limp and useless until finally your heart shuts down, taking you out of your misery. It was not easy for my family, especially my mom, to comprehend how God could diagnose any of his precious children with this disease. It is not hereditary, contagious, and it is definitely not something you can avoid or cure. It comes to whom it wants, when it wants. Doctors cannot explain why it happens, or really even what it is. They only know what it does to the human body, but they also know they still can’t find the cure.
So as the years went by with us all suffering together, we created stories and adventures that are amongst the best times in my life. Often Robert would make a joke about his arm hanging limp beside his body. We didn’t find his sickness humorous in the least bit, but he made us laugh regardless. When he lost the ability to walk for long periods of time, he would try to race us while he was in his wheelchair pulling himself along with only the strength of his frail feet. Any time I walked into the room he would say with the biggest smile on his face, “you’re purdy!” I loved it when he said that to me. I knew he heard that saying off of Spongebob, the cartoon, so it was even more humorous.
In the few times that Robert would silently sit in his wheelchair and listen to the family’s conversations, he would sometimes go into a daze and stare into space and when he did I would look into his eyes. They were happy eyes, but I could tell they held pain deep within them. I think that’s what hurt me the most. Knowing that this was the happiest man I knew, but he had to hold more pain then I could imagine. I couldn’t imagine the pain he had, because he never showed it to us. He strived his whole life to be a happy man, and he succeeded. I have never met a man happier, in better times, as my dear Uncle Robert. He may be away from us temporarily, but his legacy lives on in our family. His jokes are still shared, his rabbi beard is still spoken of, we still call each other “purdy,” but most importantly his sense of humor still lives in this world through us, his family, and his strength. So we still live here grazing on grass for the time we remain, while he enjoyed everything he had here on this earth, and became an inspiration for us all.
Beautifully written. My cousin passed away from the same thing. A difficult dease indeed.
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