Listen to thisWith only 1,000 days left to live, Andy is angry at the world. He is dying of Duchenne muscular dystrophy, and no one will talk to him about it. His personal care attendant, Rick, has seen it all before, lived it all before, and knows he can do nothing to change the boy. With his patience exhausted, the attendant is ready to give up, but then something incredible begins to happen. For Andy, the clock is running. This is his story. This is everybody’s story.
I took the challenge seriously. They said there was no higher calling in all of life than to serve another. If you serve the children, you may stoop to do so, but when you rise, you will never again stand as tall. I took the challenge seriously, and I found out.
I had spent ten years in recovery from alcoholism and although my life was good, I still wanted more. I gave up a good-paying job and went to work as a teaching assistant in special education. The work was usually difficult, always rewarding, but never daunting. That is, until l met Andy.
Andy was 15 years old, dying of Duchenne muscular dystrophy, and I think he knew it. Yet, no one ever spoke about it. He was angry and resentful. By the time I came to work with him as his personal care attendant, his resentments had grown so much that he had come to hate a world full of people, places, and things over which he had no control.
The first morning that I met him at the high school was a rough one for both of us. I was coming off of a long recuperation from hip surgery and was still getting around on crutches. Andy was beginning his first day of high school and all he wanted was to be invisible. He didn’t want attention to be drawn to him or to his wheelchair or to any of the accoutrements that came along with the inexorable muscular decline of his dystrophy. He just didn’t want to be noticed. There I stood, leaning on crutches, as he descended off the platform from the bus that brought him to school that morning. We were introduced, and his reception for me was reluctant.
Duchenne muscular dystrophy is simple and awful in its scope. It is genetic and only happens to little boys who are born apparently normal and healthy. Parents invest in these children, as all parents do, all of their hopes and dreams and aspirations for the future, but quickly things begin to change. By the time these children are three, they become clumsy and fall down a lot. By the time they are five, they have developed upper body strength from pushing themselves back upright so often. By the time they are eight, they are on crutches, and by the time they are twelve, they are relegated to wheelchairs. Sometimes, as in Andy’s case, by the time they are 14, they have had metal rods surgically implanted in their spines to help them sit upright and ease the pressure on their ribcages so that they can draw breath. By the time they are 18 or 19, they expire, usually due to heart failure or an opportunistic respiratory infection. Parents live with each of these inevitable declines, and all of their hopes and dreams for their children are dashed. There is nothing anyone can do. Personal care attendants such as myself see to their every need throughout the day as they go about their lives attending school, trying to fit in, and struggling to live a normal life.
When I met Andy, he was a 15-year-old boy who was angry at the world and everyone who happened to come his way. He felt that he had been cheated, given a bum deal, and on some counts, he was right. Little boys are not supposed to live their lives on canes, crutches, and wheelchairs. The only wheels they should be concerned with are those found on tricycles, bicycles, and later cars, when they are old enough to have them. The foods they eat should be greasy hamburgers and cool, thick milkshakes sucked up through straws as they laugh and talk with all their friends. Andy’s foods were the ones I gave him (or sometimes sneaked to him), provided by his mother, Debbie. His shakes were not milkshakes but vitamin-enriched fruit juices held just so before his mouth so he could deftly grasp the straw between his lips and gently draw the fluid up.
Every young boy who is 14 or 15 should think maybe, just maybe, he is cute and attractive to members of the opposite sex. These are only some of the things that every boy grows up expecting, anticipating, and ultimately enjoying, but all of these things were held in abeyance from Andy because of his severe physical limitations. Not only had his life been limited in its scope, but it had also been limited in its duration. Andy knew that he probably would not live beyond his teens. All of this combined with his given lack of perspective, the kind of perspective that comes with age, made Andy feel cheated and angry by the time I met him.
He did a good job of concealing his feelings from his peers, but not with me. I wiped his nose, scratched his itches, fed him his food, and gently handled him as he toileted. Such intimacy afforded me insights not revealed to the rest of the world. I was keenly aware of his anger and at first, forgave it. In time, I came to resent it. He treated me badly, as if I were some sort of bumbling, paid lackey. For me, he never reserved his disdain. He was brusque and curt, ordered me about, and sniped at me when I didn’t carry out his wishes promptly.
Only once did I ever speak sharply to him. It was on one particular morning when I had not arranged his textbook properly on the desk before him. He sneered at me and ordered that it be moved. I closed the book, placed my face before his, and with deep gravity said, “we’re not going to start the day this way.” He said, “Sorry” and we went on about our business.
After several weeks together, I wanted a report card on myself. I wanted to know if I was meeting his needs. I asked, “So how am I doing?”
He said, “Hey, you or somebody else. It’s all the same to me.” I recoiled from this impudent rebuke and thought to myself, “I took a $20,000 pay cut to serve your needs, and it’s all the same to you?” I was getting fed up and wanted out of the situation. I was even thinking of quitting my job, but something better in me said to hang on, stick it out a little bit longer.
Andy had made certain demands. He insisted on the scheduling of transport to and from his classes in his electric wheelchair. Always, I was told to remember to come and pick him up from his classes ten minutes early so that we could pass in the halls unobserved. By the same token, I was to take him to his classes five minutes late. This was one of several accommodations that I made. At lunchtime, he insisted on being segregated away off in a little room adjoining the special education offices. In private, I could spoon feed him there without his being seen by the other kids. In this small room, many of our conversations took place.
Being a recovering alcoholic, I was unabashed about approaching the truth. One day I asked, “What do you know about Duchenne dystrophy?”
“Not much,” he replied.
“Well,” I said, “what have your folks told you?”
“Some, not much, really.”
“What’s your social worker said?”
He sneered and said, “I don’t have a social worker.”
“All right, then,” I went on, “your psychologist, your doctor?”
“Nothing.” He looked at me as if I was an idiot.
A long silence followed. I looked at him and remained quiet. Then he pointed with his eyes and nodded with his head indicating that he wanted another bite of banana. I lifted it to his lips and he took another mouthful.
“Do you want to know?” I asked.
He closed his eyes, dipping his chin, giving one clear nod of assent.
Sweeping the table clean of debris, I said, “Okay. Let’s go to the library.”
We went upstairs and pulled down the medical dictionary. Finding the entry for Duchenne dystrophy, I read it to him, leaving nothing out. When I was through, I snapped the book shut and looked up into his eyes. He jerked his head back and said, “Let’s get out of here.”
Andy now knew with a certainty that he had about 1,000 days left to live. He gave no indication that this had any effect on him whatsoever at all.
I have learned that it is impossible to change another person. At the times when I have contemplated such a thing, I simply reflect on how hard it is to change myself, and I immediately give up any such silly notion in that direction. The very best I can hope to do is to live my life honestly and directly, and then, by sharing my hopes, my experiences, and my strengths, perhaps I can have some positive effect on someone I care about. Beyond this, there is nothing that I can do to change another.
In all of those long conversations, I rarely spoke about Andy’s life. Instead, I talked about my own life. I told Andy what it was like to be a recovering alcoholic, how close I had come to dying, and how much my life meant to me now. He never questioned my authority when it came to what it was like to be a chemically dependent person. I never challenged his when it came to what it meant to be a kid with Duchenne dystrophy. Over time, Andy’s attitude toward me softened somewhat. I think he respected me for what I had been through and how I had to live my life on the straight and narrow now.
One day while feeding him, I said, “You know, you probably have 1,000 days left to live – that’s for sure. But I might have as few as 30 days left.”
“How do you mean?” he asked.
“All I’ve got to do is get a crappy attitude for about two weeks, and then I'll be back in the soup. After that, I'll start drinking, and trust me, the way I drank, I'll be dead in two weeks.”
“So what’s your point?” he asked.
“My point,” I said with some force, “is that it’s not a matter of whether you and I are going to die. It’s more a matter of how we are going to live. I don’t know about you, but as for me, I’m going to carpe diem “seize the day and wrest from it all the joy and happiness that I can stand. What do you think of that?”
He shrugged his shoulders and said nothing, so I dropped the matter and changed the subject.
By the time the Christmas break rolled around, I was fed up. I talked to some close friends about my problem, and they advised me that the fault was mine. I had not given Andy any clear boundaries and had allowed him to treat me badly. They reminded me that people will treat you pretty much the way you train them to treat you. If you let yourself be a doormat, they’ll treat you like a doormat. I saw that they were right, and with a new resolve, I returned to school ready to lay down the law with this kid. When I returned, a remarkable thing happened. To this day I do not know how it came about, but it did happen, and I saw it with my own eyes. Andy changed.
He no longer insisted that I pick him up and deliver him at odd times. Now he wanted to pass in the halls with all the other hundreds of kids that filled the school. Further, he wanted a little extra time before lunch to go roaming about visiting with his buddies in the cafeteria. When it came to our conversations, he now had an insatiable appetite to know everything about the world. He found girls his own age fabulously interesting. He would ask me all manner of questions, the sort of questions that all 15 year olds wonder about in private. His questions were candid, direct, and stunningly frank. He was being 15 and concealing none of it from me.
I said, “You know, I could lose my job if I answered these questions.”
He said, “Just cut the crap. I need to know.”
I said, “Okay, but it’s got to be like this. I’m not your mother, I’m not your father, I’m not your priest, and I’m not your brother, but I will be your friend and answer all your questions, but you've got to agree to keep everything we say in confidence and tell nobody else.”
He said, “Deal.”
I blush now to think about it, but I told him everything he wanted to know. That confidence between Andy and me still exists, and I will tell none of it here, but it is fair to say that he and I did a good deal of girl watching. He would point out the girls that he thought were cute, and I would point out to him the older ones, the ones from the staff that I thought were attractive. Sometimes he would admonish me saying, “You think that one’s a looker? Oh, gross. She’s old enough to be my mother.” I’d laugh and shrug my shoulders.
I still laugh when I think of all the triumphs that
we shared. I remember the day when he saw her for the first time, the
prettiest girl in the high school.
We were flowing along with that river of kids when coming downstream was
Nicole Miller. She passed us by. Seeing her, Andy stopped abruptly. I
fell over his wheelchair, crutches and all.
“Who is that?” he asked.
“Oh, that’s Nicole Miller. She’s a friend of mine.”
“You know her?” he gasped.
“Yes, and she’s a very sweet girl, too.” I said.
Andy swallowed hard and said, “Can you introduce me?”
I said, “Certainly. Would you like me to take you back and introduce you to her right now?”
“No – wait;” he said. “We’ll wait for a better time.”
The 15-year-old boy inside of me has never died, so
I knew what Andy intended. These things must be handled delicately, and
so naturally, some planning was needed. At lunchtime, when I fed Andy,
we would rehearse what he might say to her when I made that
all-important introduction.
He suggested to me that a good opening might be: “So I see that you've
got Wilke for American Studies. Do you like him?”
I said, “No. You cant ask a girl any question that might be answered with a simple yes or no. You have to structure your question in such a way as to invite conversation. Something more like, 'What do you think of Wilke?' “
He agreed that that might be a better approach. We went the next several days waiting at noontime for her to appear at the lunchroom doors. We noted which route she took when coming and going. We chose a plausible place for ourselves where we might be loitering when she would pass us by, a place where Andy’s heart could ambush her and I could make that introduction. We went through all of these preparations so that nothing could go amiss. I called it all good planning. Andy called it stalking. Our plans were made, our trap was set, but a couple of times we chickened out. Andy postponed the introduction to a further day. I never asked him why, as I knew that 15-year-old men have their very own innate sense of intuition often tempered by craven inhibitions. I let it go and agreed to make the introduction on a different, perhaps better, day.
At last, all seemed right. The day was good, the setting acceptable, and all of Andy’s snappy questions and witty ripostes to her replies had been prepared. We sat in front of the cafeteria doors as we spied her at a distance coming down the hall. She was walking with a friend.
Andy looked straight ahead and whispered, “One more thing.”
“What?”
“If I say abort, you abort. Got it?”
“Abort, yeah, I got it,” I echoed.
She continued to come our way, a real thing of beauty. I held my book up before my face and pretended to be reading. In this way, I could peek over my page and tell how far she had come. When she was 50 feet away Andy said, “we’re going for it. It’s on.”
“It’s a go,” I confirmed.
I poised myself waiting until she was within range. At just the right moment, I was to lower my book, notice her, act surprised, and spontaneously make the introduction. It was all so well planned. It couldn’t possibly have failed. I, too, had my lines assigned, but for a pro such as myself, little rehearsing was needed. At 25 feet, she was nearly upon us. Andy whispered hoarsely in excited, breathy tones, “Oh, man, I can’t believe I’m actually doing this.”
“Yeah, buddy” I laughed back. “This is what it’s all about, and it’s coming at you at the speed of life. Ain’t it a gas?”
“Yeah,” he tittered.
Just then, Nicole Miller hove up in front of us. Leaning on my crutches, I lowered my book and caught her eye.
I smiled and said, “Hello, Nicole. Say, I have someone here you might like to meet.”
Then turning to Andy Boyles, I said, “Nicole, this is my friend, Andy Miller.”
“Miller?” squeaked Andy.
“Oh, sorry. I mean Boyles “Andy Boyles. Nicole, this is Andy Boyles.”
She smiled and said, “Hi.” They began to talk.
I stepped away so as not to intrude, but before I did, I caught Andy rolling his eyes in recognition of my near disastrous gaffe. As I said before, the 15-year-old in me has never died, and it was this boy’s nervousness that made me blunder.
Later that year, in the spring, Andy came to me and said, “I’ve been thinking about running for student council.”
I said, “I'll get on it right away. Now, we’ll have to print up some signs and get balloons.”
“How would you know anything about running a campaign?” he asked, interrupting me.
“Campaigns are a cinch,” I said. “My wife ran for city council twice, and she won both times. I ran those campaigns.”
“Okay,” he sighed. “I'll trust you on this one.”
“No problem,” I said with my usual panache. “And think of it. We've already got the cripple vote all sewn up.”
“You can’t vote,” he said.
“Whatever.”
We set about to run Andy for the student council. He
ran a good campaign, meeting and greeting his fellow students, asking
them to vote for him. I always stood off at a distance and watched him
go. Sometimes I did this through a rainbow prism of tears. He ran, and
he won the election handily.
There were other changes at home too. He joined a Monday night Young
Life Group and had its members come to his house regularly.
Andy had changed, and I felt changed by him. We had shared with each other our disabilities and taught each other that while they seemed unfair, they were not limiting of our potentials.
At the end of the year, I decided to not return to the school district. It was time for me to move on. As a going away present, I prepared a special award for Andy. It was a homemade filigreed certificate of merit. I titled it:
The Carpe Diem Award
To Andy Boyles
Seize the day and the hour at hand,
nor wait for another to come.
I gave it to him on my second-to-the-last day of work. It was then that I told him I would not be returning. The news upset him, and he protested, “This sucks. It’s not fair.”
I said, “I know, Andy, but life isn’t fair. You and I know that.”
His eyes began to glisten, and his mood became somber.
I asked, “Did you know that I didn’t like you when I first met you? You were mean to me and very rude. At one point, I actually went looking for a different job.” Andy’s eyes widened, and he listened closely.
“I just couldn’t take it anymore. But then something mysterious happened.”
“Yeah, I know,” he said. “I changed.”
Now a tear escaped his eye. I looked down at my hands to give him some room.
He said, “Now, I’m not crying, but I’ve got something in my eye. Will you please lift my hand so I can wipe it.”
I lifted his hand. He wiped his eye. I blotted his cheek with a brown paper towel.
I said, “You began to treat me with respect. You began to find the joy in living and started taking things one day at a time. And you began to laugh “laugh at a lot of things. And you blew off the silliness of so much of what we see around us every day. You, my friend, began to be all that you could be.”
Now I leaned in conspiratorially and whispered, “Andy, you and I know something wonderful, a secret the rest of the world isn’t in on.
“No, it isn’t fair. you’re right. It isn’t fair that I should have been a little boy who would grow up to be a chemically dependent person, or that I should have hips that are made out of spare parts that make it painful for me to walk. And it isn’t fair that you should be a nice little boy who gets muscular dystrophy, gets crippled and put into a wheelchair, but neither of us cares much about that stuff.
“Both of us, you and me, buddy, we’re going to live every day until we die. This day is a gift to us. It’s our chance to make the most of our lives, to do with them as we please, to treat others honorably, to be honest in our actions and to laugh at whatever life sends us. You and I know this thing, this secret, and it’s ours to share and cherish.”
Andy went on without me. This was fair, and it was right. He was fully fledged and had leapt from the nest that we had shared. He went on through his junior and senior years of high school, graduating with a B+ average. He took every day one day at a time, and, with a rapacious grasp, he wrung from it all the joy and satisfaction it had to offer. Then one day last summer, during the second week of August, He succumbed to heart failure and died.
A month later, I spoke by telephone with his mother, Debbie. She told me that Andy had loved his last few years of life. He thrived from his sophomore year on and really hit his stride in his high school years. She said that in all of her experience, she had never seen a boy, or for that matter any person, approach life with such unflagging vigor. This was how he was truly known to his friends and family. We shared many things that day. We also cried together. I told her of the day that Andy had cried with me and how I had blotted his tears with that brown paper towel. I informed her that I had saved that towel, and for reasons that I didn’t understand, I was unable to part with it. Then, realizing to whom I was speaking, I said, “Debbie, you’re his mother, and I really think Andy’s tears belong to you. I’m giving this towel back to you.”
I think of Andy every day. I can’t get him out of my mind. While I am so, so sorry that he died, I am a shade happier that he lived.
I took the challenge seriously. They said there was no higher calling in all of life than to serve another. If you serve the children, you may stoop to do so, but when you rise, you will never again stand as tall. l took this challenge seriously. And I found out.
This feature: Talbot, R.P. (2002). Carpe diem: Andy’s story. Reclaiming Children and Youth 11, (1), pp.47-51
