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People Top 5
LAST UPDATE: Tuesday February 10, 2015 01:10PM EST
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- May 12, 1986
- Vol. 25
- No. 19
An Injured Athlete Plays for Time as He Awaits a Cure for Relentless Pain
His career as a teacher came to a halt. Bali games were replaced by mind games devised by Buckelew to help him tolerate the pain. Until medical research finds a way to treat his condition, perhaps through advances in laser surgery or the production of synthetic endorphins, the body's natural painkillers, Buckelew, 50, must depend on his inner resources. That and the love of his wife of 27 years, Polly, and their three sons, Michael, 26, Brian, 25, and Ty, 16, provide him a reason to "keep chugging."
The family lives in a gracious, two-story, brick home outside Atlanta. Buckelew spends some time each month, for no pay, helping his longtime friend, New York Knicks basketball coach Hubie Brown, evaluate players. He passes most of each day in bed, lying in the fetal position, which he says is the most comfortable position for his body. It was there that he spoke with Assistant Editor Bonnie Johnson.
I was an athlete all my life, and I never even had a sprained ankle before this. I took good care of my body, and it got me everything I have. My scholarship to college, my career, this house and everything in it is because of basketball. So even after the accident first happened, I wasn't too concerned. I was in pain, but it wasn't excruciating. Over the next few months, though, the pain got worse and started radiating down my left leg. The orthopedist I was seeing was treating it as a muscle problem. But after months of bed rest, Valium and anti-inflammatory drugs I started getting scared. Nothing was happening. I was unable to work, because the driving and the standing I had to do made the pain even worse. I kept asking the doctor, "What's going on? Nothing is working." He said I probably had a disk problem and that it was time to go see a neurologist.
Through friends, I got in to see Dr. James F. Hammill, professor of clinical neurology at Columbia Presbyterian Medical Center's Neurological Institute in New York. I loved the guy right away. He was kind and competent. He examined me and then did a myelogram, in which they inject a dye into your spinal canal and then put you under a fluoroscope. It showed that I had a ruptured disk. Dr. Hammill said they were going to stabilize the area by taking out the damaged disk and fusing the vertebrae using bone from my hip. He thought everything would be fine.
It wasn't until they got in there that they realized I was in heavy trouble. The root of my sciatic nerve, which runs from the lower back and then branches down each leg, was all red and enlarged. If a disk is just touching a nerve it will cause pain. In my case the disk had severely compressed the nerve. In addition, instead of the nerve root being free within the spinal canal, it was all bound up with arthritic bone spurs that were also digging into it. The nerve root was severely damaged and the damage was permanent. As it turned out, so is the pain.
Since that first operation, I've been hospitalized 34 times. My medical records look like a telephone book. I've been in Columbia Presbyterian's pain clinic several times. They shot all their guns: acupuncture, hypnotism, biofeedback, and nothing worked. I've had a total of five operations; three of them were attempts at fusing my spine. They kept trying because stabilizing the area might take some of the pain away. But what happened was that the fusion didn't hold. Two years ago I went to see Dr. Blaine Nashold of Duke University. Dr. Hammill had recommended him to me. Dr. Nashold has been very successful treating spinal cord and spinal nerve root injuries. I told him, "Look, I'll give up the use of my legs if you can take the pain away." I stayed down there a week. The last day I was there, Dr. Nashold came in and said he wasn't going to do his operation, which involved microneurosurgery on the spinal cord. He said it was a high-risk procedure that might force me to be in a wheelchair for the rest of my life, and even then he wasn't sure he could get the pain.
It was devastating. I remember pulling away from the hospital in the cab and looking back through the window thinking, "God, here I am again leaving with no success." I wasn't angry at the doctors. I have had the best and they have done the best they can. I'm angry because of the circumstances. The inevitability that tomorrow the pain is going to be there, and that the next day and the next I'm still going to have it is extremely difficult for me to take.
Over the years I've had to learn how to deal with it. I have to get plenty of rest; that's really important. Activity of any kind—sitting, standing or walking too much—all elevate the pain level. So this is where I live, in my bed. I also know that if I'm real tight and tense I can make the pain worse, so I work on my relaxation techniques, like tensing my entire body up as much as I can and then completely releasing.
Then I have my mask that I put on. It's a mental game that I play to fool people and get through the day without feeling sorry for myself. I put it on, for example, when Ty comes home from school. I go downstairs and fool around with him and find out how his day went. I also work at not being grouchy or irritable. Continually fighting the pain like that is exhausting. I work at it anyway, but every day, at one point or another, it gets so that I have to close the door and pull the covers over my head and cry. It hurts that much. I keep telling myself, "It'll back off—you know where the pain is coming from," and that puts me a little more at ease.
Narcotics are my mainstay, and I'm addicted to them. I take heavy painkilling drugs day and night. That's what allows me to get to sleep. But drugs are no cure. They take only a little nip out of the pain. I have avoided increasing the dosages as my body becomes used to them. I already have multiple ulcers and other complications from the drugs. If I kept increasing the dosages it might cause other problems down the road. It's very exasperating.
Things would have been even tougher if we weren't such a close family. I can't drive, I can't mow the lawn, I can't shop, so Polly and the boys have had to pick up the slack. Ty has never known me without pain. I can't go to his basketball games or show him moves or teach him to drive like I did his older brothers, and it kills me. But there's no bitterness and no pity either. We play around and joke a lot. It's a way for me to get my mind off the pain and keep things as normal as possible. I still make decisions from right here in this bed. It's central headquarters.
Polly has been cut out of a lot of things. We don't have a social life. We can't go to the movies or have friends over to dinner. She works full-time. She used to be a teacher when we lived in New Jersey, but her teaching certificate isn't recognized down here in Georgia, so she works in the local Laura Ashley store. I like the idea that she's out. Watching me lying here in a heap is not so great. But it kills me that she has to work. The only other money we have coming in is from Social Security and my teacher's disability pension. We've used up all of our savings and now we're just treading water. The only thing we have is this house. We got it by working our tails off and saving when we were younger, but we have no right being here now. We can't afford the taxes, the bills. We're going to have to get out.
But Polly never complains. We've just gotten closer. She's been frightened a lot of times but there's no pity and she doesn't baby me. I know a lot of wives would be long gone. It's not easy living with a disabled person. There are a lot of things that are not done away with but that are curbed because of my problem, like our sex life. We've had to work around that, but we've done it together.
If there's anything that can distract me somewhat from the pain it's basketball. That's why my involvement with Hubie has been so important. It's also been a chance to help my friend who has been with me for over 20 years. Advising Hubie gives me a sense of worth and purpose. I had a career and I've been robbed of that. I have an ego and I've been robbed of that too. This gives me a small chance to get some of it back. The Knicks' Gerald Wilkins was my guy. I recommended him and he's coming through really great, and that gives me a lot of satisfaction.
Lately, I have seriously considered quitting. It takes a tremendous toll on me physically. Just a weekend trip to New York exhausts me, and the pain elevates to such a level that it takes weeks before it goes back down. But in the end I feel like I have to continue doing it because it's mental therapy and it's keeping me going. Otherwise I'd just lay in this bed and rot.
I've come close to giving up, just wanting to go to sleep all the time. I was always very fastidious and I find that I care less about whether I shave or dress. But I'm very proud that I haven't gone crazy. People have said to me, "I could never handle it," but I say, "What is the alternative?" I'm not about to hang myself in the closet. Taking my life would be the most unfair thing to my family and my friends, who have stayed by me. There are a lot of people with more problems than I have. Kids are on drugs, wives are leaving. I couldn't handle that.
I'm not saying I'm not worried. There's no end in sight to my pain. I've gotten very good at handling a high level of it, but it's gone on for so long and I'm so tired of it. I just want it to go away and leave me alone. I just want to lead a normal life.
- Bonnie Johnson.
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