Rebellion and Freedom

Some days are just sad. Life happens and we are totally helpless to change it. And the overwhelming emotion is pure, deep sadness.

We received word a few days ago that my uncle, Marvin Burck Tollett, had died. The last few years of his life were extremely difficult as he dealt with an incurable disease, a terrible inheritance from his father, my grandfather. Charco Marie Tooth Syndrome, CMT for short, started stealing his mobility at a very early age. He turned 67 on Sunday. Sometime that night he fell from his wheelchair, hit his head and died. He was found Monday morning.

Uncle Burcky was only 7 years old when I was born, the late-in-life little brother for my mother, 13 years his senior. She had begged her parents for a sibling and they came through as she was entering her teens in the tiny Texas town of Sudan. Fifty miles north of Lubbock, in the heart of cotton and cattle country, Sudan was at one time an idyllic place to grow up. My mother was raised in the “Happy Days” of the fifties. Burck came of age a decade later in the turbulence of the sixties.

My mother adored her little brother. She and her friends treated him like her real life doll, dressing him up and taking him places. Although, he must have been a typical bratty little brother, too, as she left him at the bus stop one time on his own when he was five! He wasn’t the least afraid. When she thought better of her actions and came back to get him he had a big smile on his face. He completely trusted her.

Burck lived a mostly typical small town life until his early teens when he sustained a life-changing football injury – a severely broken leg that put him in a body cast for months, flat on his back in bed. Today I’m sure that kind of injury would be handled differently. I can remember as a child climbing up on the hospital bed in his room at their home and lying across his casted body. It was fascinating and a little scary to me, but it left him with one leg permanently shorter than the other. It also left him with a bitter attitude about life in general and fueled a rebellious time in his late teens and college years.

After high school Burck went off to live in Austin, the epicenter of rebellion in Texas at the time. He grew his hair to his waist and a beard like ZZ Top. I thought he was the coolest thing ever, my very own hippie uncle. Of course that was the era when everyone “inhaled”, and experimented with worse. The drinking that started as a teen grew to epic proportions. I have vague recollections of the intense worry of my mother and her parents. I fondly remember him giving me my first 8-track player and a Jim Croce tape that I played until it wore out. He was my hero, in worn out jeans and dingo boots.

He did somehow survive those years, but not without a lot of family angst. My grandparents were very conservative and had no idea how to manage this restless son. He earned his college degree closer to home at Texas Tech, receiving a diploma in Horticulture. He went on to work for the City of Lubbock in their parks department, and later became the Superintendent of Parks in Waco, Texas. There was a marriage to a girl from another tiny panhandle town that didn’t last, but produced my cousin Zachary Tollett just one month after my own son was born in 1984.

Sometime in early adulthood CMT began to catch up with my uncle. Charco Marie Tooth is a disease of the peripheral nerves that control the muscles. Symptoms include severe neuropathy and muscle wasting, leading to falls, wounds, and severe pain. In extreme cases, as his was, walking becomes a challenge. He managed to keep it under control but was wearing leg braces by an early age. (This on top of the built-up shoe required after his football injury.) Like most things he rebelled against his condition for years until it couldn’t be ignored. Studies have shown that the kind of lifestyle he lived can contribute to the severity of symptoms. Unfortunately, the symptoms also drove him to drink more heavily to help mask the pain and misery he was in. A vicious cycle.

By the time he retired he had decided to move back to Lubbock to be nearer to Zach and his family. We have been through many scares in the last two years with Burck, as he struggled to live from a wheelchair, unable to walk or care for himself in any meaningful way. He’s been in and out of the hospital due to falls and wounds that wouldn’t heal. But to the end his rebellious streak lived. When he retired he grew his hair back down to his shoulders! The family hated it, but it was his statement that he was still in control of his life. He also resisted all efforts to curb his drinking. Zachary and his wife Jennifer are saints for the years of loving care they provided his dad.

My heart is so heavy for my mother who is crushed to lose the little brother she held so dear. And I ache to think of Zachary’s daughter Zoey and her soon-to-arrive sister growing up without their Papa. But as my faith tells me, I can rejoice that my Uncle Burcky is no longer in pain. I truly believe he walks strong and tall beside the parents he struggled against for so long. There are no more battles to fight, no rebellion to be waged against the forces that controlled his life on this earth. My hippie uncle has been set free.