Death be not proud, though some have called thee.

Thursday, January 04, 2001

Death be not proud, though some have called thee

Mighty and dreadful, for thou art not so;

For those whom thou think’st thou dost overthrow

Die not, poor Death, nor yet canst thou kill me.

From rest and sleep, which but thy pictures be,

Much pleasure; then from thee much more must flow,

And soonest our best men with thee must go,

Rest of their bones and soul’s delivery.

When John Donne wrote these words more than 400 years ago, he could not have known how appropriate they would be for one man who passed through my life all too briefly. His name was Adam.

Adam: the first. He was the first in our family – the first grandson in a family of six granddaughters. And he was the first of us to go.

Each of us granddaughters were healthy and happy; two daughters each were born to my mother, her sister and her brother. We never knew that anything was missing until my uncle and aunt decided to have another child. Adam-Blake "A-B" Timothy Neuhaus was born Jan. 2, 1979.

As the youngest and the only boy, he was constantly doted on. My grandfather bought him a hat that simply said "#1 grandson." He was given a car bed because his father had passed his love of racing down to him.

Regrettably, I admit that I was jealous at times of the attention that he received. It seemed as though I was one of a crowd and he stood out. I later learned that this perception was far more accurate than I could have imagined.

Adam had an adorable walk as a child. All of us dubbed it his "John Wayne walk." He actually would swagger. But that huge grin on his face looked nothing like the intimidation that marked the face of Mr. "True Grit" himself. Never before and never since have I seen a child who was so completely happy. He literally glowed.

I don’t remember exactly when it was that we heard, but one day all of us were shocked to discover that that walk was an indication that Adam had Duchenne’s muscular dystrophy. It seemed so ironic that the one boy, the one everyone had waited for, would arrive and leave first.

His diagnosis was clear: as he grew older, he would become weaker as his muscles gradually deteriorated. I think that that’s the worst part of the disease – how long it takes to progress and yet how few years are allotted to those who are stricken. Adam probably would die before he reached adulthood, unless some miracle occurred with the help of Jerry Lewis and his telethon. The miracle never was an eradication of the disease; it was the impact that this one life had on me.

It’s strange the milestones you remember, things that are horrific but which help you to recall certain moments. I remember Adam using his first walker in my family’s kitchen on the day that I graduated from high school. I remember the first wheelchair he received and all of the motors he ruined because he was racing like his heroes on TV. Unfortunately, there were many more wheelchairs after that first.

His legs deteriorated and then, more slowly it seemed, he began to lose control over his arms. Whereas once he could play with Matchbox cars on the tray of his wheelchair, eventually he would ask us to play with them on his tray for him, just so he could watch.

Over the years, his mind amazed me. When I would visit, he knew everything that was happening on the news and was ready to discuss it with me if I was willing. I usually was.

He knew every race car driver who was in NASCAR. His favorite was Bobby Labonte. Adam was privileged to meet many of his racing heroes over the years, including Richard Petty and Labonte. All of them treated him very well and made that already wide smile wider still.

Despite the disease that ravaged his body, Adam made friends, went to school and got into trouble like any boy his age. In fact, his academic achievements put him near the top of his class in school and I believe that he did sit in detention at least once, for racing with another wheelchair-bound student, if I remember correctly.

I remember distinctly hugging and kissing him on the day that I left California to move to Minnesota. I thought that it would be the last time that I saw him. I was wrong. Fortunately, he came back to Minnesota to visit us. My strongest memories of his visit are trying to keep the mosquitoes from biting him as he drove his wheelchair into our house (he couldn’t swat them himself) and helping him drink from a straw while he sat in our kitchen.

I used to yell questions at God – I still do to this day – asking why a child should be made to suffer in such a way. I still don’t have any answers for why the innocent, the "best" as Donne said, should be taken from us.

Yes, Adam died. He died of complications of the disease, including pneumonia, on June 20, 1997. To this day I find it ironic that his birthdate was 01/02/79 and the date of his death was 06/20/97. The days and years were reversed, as if signaling the reversing of the joy that we all felt when he entered our lives.

He was only 18 when he died, but months before I was struck by the fact that my little cousin, the boy whom I loved so much, had become a man. The first indication was when I heard that he had made his own funeral arrangements, knowing that the end was coming.

Adam had become a man without any of us noticing. I guess that the fact that he was nine years younger than me and had to be cared for caused me to see him as a child when he wasn’t. In retrospect, I guess that he had always had to deal with a reality that continued to force him into new levels of maturity. He made that journey with grace and dignity.

Before he died he was allowed to graduate early from El Capitan High School in Lakeside, Calif. Local media in California covered the event. To one reporter who asked Adam about his life, Adam mouthed the words to the Sheryl Crow song, "Every day is a winding road."

He taught me that more than anyone ever has. If I was in his same situation, I’m sure that I would have become bitter and angry. Which is, perhaps the point. I won’t claim that he never became frustrated or angry with his situation – I’m sure that he did.

But never did I see him belittle anyone or intentionally hurt another to make himself feel better. He was good to all of us. I once heard someone say that the most extraordinary spirits choose to inhabit the bodies of the disabled and the mentally ill. There is a part of me that believes that because of Adam.

As unorthodox as it was, he wanted a NASCAR funeral. He wanted to be put in a black casket, wearing black pants and his best Bobby Labonte T-shirt. My uncle and Adam requested decals from Labonte’s car for the casket. Instead of a hearse, he wanted to be driven to the funeral in his father’s 1957 panel Chevy, with a short detour to drive around the racetrack of El Cajon Speedway.

At his funeral, the decals were on his casket, he was in his Bobby Labonte clothes and he made that trip around the racetrack. His funeral was a celebration of his life, as it should have been.

For all of the weight of his disease, Adam stayed light and loving. Daily he blessed us all with his goodness, courage and hope. I can only hope to do so much for just one person, let alone the number of people whom Adam touched while he was alive.

So, since as of Jan. 2, 2001, Adam would have been 22 years old, I want to say thank you to him for personifying courage. On my best day I fall far short of the courage that he displayed every day of his life.

When it was time for what Donne called his "soul’s delivery," he simply said, "I’m going." And he went. But I still feel him, as do all of us who knew him – every time I see Bobby Labonte race or see another child who is struggling with a disease. And though being reminded of him makes me sad at times, ultimately I smile because of the joy that he brought and the freedom that he now enjoys.

Happy Birthday, A-B!