I knew I was going to be in a wheelchair when I was nine years old, Barney began. After I saw my friend Beth being wheeled down the corridor of our school, I knew my turn was coming.”
"Barney in Bed Dying" Paintng by Judy Joy Jones
“Barney, I’m going to paint you,” I told my friend who was dying of muscular dystrophy at the tender age of 28.
Sitting at the foot of his bed, I took out some paper, colored markers, and starting painting, careful not to disturb the IV’s in his thin arms, or what was left of them.
“I knew I was going to be in a wheelchair when I was nine years old,” Barney began. “After I saw my friend Beth being wheeled down the corridor of our school, I knew my turn was coming.”
“Barney, did you ever think you would walk again?”
“No, I knew I wouldn’t and the minute I met Tracy which was one year ago, I knew why. She had just gotten out of a rehabilitation hospital where she had been in a coma for six months. Tracy lost control of her car and crashed into the side of a mountain as she was driving home from college during spring break. She was 19 years old.”
“I started teaching her as fast as I could about how to live as a paraplegic. Tracy is the only reason God put me in this wheelchair for the last nineteen years of my life.” I could feel the heat from Barney’s body coming through the covers. He was burning with fever.
“Lift me up on the bed so I can lie next to Barney!” demanded Tracy to the attendant as she wheeled her up to his bedside.
“And I can tell you it’s been ‘heaven and hell’ knowing this woman!” “Hey Tracy, ever hear you get more bees with honey?” Barney said with a huge grin on his face and a compassionate glance to her attendant.
“Barney!” Tracy screamed, “you know my mood swings are from my brain damage … made worse because the people in the hospital didn’t turn me over like they were supposed to while I was in the coma.”
“Tracy, you always have excuses, and by the way, why don’t you put on some make-up? A man on his deathbed wants his woman to look her most beautiful!” His eyes twinkled and looking my way he added, “You could use a little make-up yourself!”
My thoughts strayed to the first time I met Tracy. “Hey, watch where you are going!” I screamed as she nearly ran me down with her wheelchair. “Well get out of the way or I’ll be late to my class!” she shouted back.
And thus began my whirlwind friendship with Tracy and Barney. I went everywhere with them. They fought constantly, sometimes purposefully bumping their wheelchairs into one another to ‘bring home a point.’ Tracy’s depressions came on suddenly and turned into either fits of crying or anger. Barney calmed her down, teaching her little by little how to work with attendants, to make food for herself using special utensils, to open cabinets with dangling ropes, and much much more.
And the louder she screamed the more he loved her. Deep inside, she knew he was giving her the critical skills she would need to survive and make a new life for herself as a paraplegic.
But mostly Barney gave Tracy love, poured it into her, staying by her side night and day to help her through horrid headaches and mood swings. Barney was dying, giving his last breaths to Tracy, who was just beginning to live.
“Tracy, do you really believe Jesus walked on the water?” I asked her one night, looking at the picture above her bed.
Turning beet red with anger, she said in a loud voice, slurring her words due to her brain injury, “Why don’t you crash into the side of a mountain, go into a coma and wake up with severe brain damage six months later and try starting a new life in a wheelchair? Then ask that stupid question!”
“Look at me!” she ordered, “One day soon I will walk again and I am going to get my degree in vocational rehabilitation. And you know why I can do all this in spite of the doctors and everyone else telling me to give up and accept life as an invalid?”
“Why Tracy?” I asked.
“Because He did it. Jesus walked on the water, and so am I. God is remaking me in a new way so I can be of service to people like myself. But you can’t understand, you are too selfish!” Tracy said, between sobs, glaring straight into my eyes.
“No I didn’t crash into the side of a mountain at the age of 19 Tracy; you are absolutely right, I can’t really understand.”
“Tracy,” Barney said, wheeling through the room as I jumped out of the way, “if she is so selfish, why is she trying to help you relearn to walk? Come on, stop feeling sorry for yourself and get to work! I’m not going to be with you much longer.”
“Come in here and watch as my attendant moves me from the wheelchair to the bed. Listen to me talk with him. Watch Tracy, learn.” Tracy cried even louder but obeyed anything Barney said like the child she was in her new role.
Barney died that night.
Sometimes, when I stayed with Tracy on weekends, I could hear her talking with him long after his death. “But how can I? I don’t know how!” she would argue. Tracy poured out her heart to him. Several times I went into her room just to make certain Barney hadn’t risen from the dead in body as well as spirit.
Barney continued to guide, and teach Tracy, and when she felt like giving up–which was every hour on the hour for the entire first year; she pointed to the picture of Jesus walking on the water and looked at me with tears in her eyes crying; “I can, I can and I will!”
Tracy did learn to walk again, as well as completing her degree with honours in vocational rehabilitation counselling, just as she had so defiantly announced she would the day I asked her if Jesus really did walk on the water.
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I have two second cousins, one at 11, who was hit by a car and rolled in a ditch, resulting in brain damage and a fractured hip, four weeks in a coma and a long delay in repairing the hip. The second, also a girl at about 12 or 13, hit by a car on her bicycle and thrown headlong into a telephone pole.
After long rehabilitation, the brain being what it is, both made recoveries, but never completely, suffering long-standing disabilities and emotional problems. Both were able to marry. The first one that I know the most about, married a mentally retarded janitor and she worked for an insurance company. They never drove, but used city buses to get around town. The first one would be about 70 now, and I believe her husband has died. Her mother, where I got much of this information, my great aunt, died a few years ago. But she has two sisters and a brother to still help look after her in her retirement.
I know of two sisters with MD. They both got college degrees and one told me how to get state assistance for paying for attendants and showed me the way to getting back to driving a high tech vehicle when she did. I also have read Ralph Braun's remarkable life story recently. When diagnosed with MD and told that he would die as a teenager, defied all odds, designed and built his own assistive vehicles, married and had children, and then built an international corporation from his little hometown in Indiana. Unfortunately he did die, before his autobiography was published.
Ron