Wisconsin 1 Step at a Time: Taking Steps to Trample Muscular Dystrophy

By Bradley Carlson

Bradley Carlsons muscular dystrophy causes brutal leg cramps that leave him crumpled on the floor. He cant climb stairs and curbs, and sometimes he cant even move.

But none of that stopped him from putting his best foot forward and walking through his home state of Wisconsin. He walked through 595 incorporated cities, trekking from Lake Michigan to the mighty Mississippi.

During his journey, he experienced his share of falls and challenges, but he also met incredible people, enjoyed special moments, and witnessed the breathtaking beauty of his home state, including waterfalls, desert-like dunes along Lake Michigan, and picturesque mountaintops and forest views.

Bradley didnt set out on this journey to raise money or hand out brochures. He simply did it to show himself and others that someone with muscular dystrophy can accomplish great things.

Youll laugh, cry, meet new friends, and discover new places in this inspirational memoir about one mans refusal to give up while seeing Wisconsin 1 Step at a Time.

• Language: English
• Publisher: iUniverse
• Release date: Jan 6, 2012
• ISBN: 9781462069446

Bradley Carlson

Bradley Carlson is a lifelong resident of Wisconsin. He earned an associate’s degree in computer operations from Madison College and is a junior at Upper Iowa University. A computer analyst, he lives in Waunakee, Wisconsin, with his wife, Edna.

Book preview

WISCONSIN

1 STEP AT A TIME

Taking Steps To Trample Muscular Dystrophy

Bradley Carlson

iUniverse, Inc.

Bloomington

Wisconsin 1 Step at a Time

Taking Steps To Trample Muscular Dystrophy

Copyright © 2012 by Bradley Carlson.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

iUniverse books may be ordered through booksellers or by contacting:

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

ISBN: 978-1-4620-6943-9 (sc)

ISBN: 978-1-4620-6945-3 (hc)

ISBN: 978-1-4620-6944-6 (e)

Printed in the United States of America

iUniverse rev. date: 12/28/2011

Contents

Foreword

Introduction

CHAPTER ONE

CHAPTER TWO

CHAPTER THREE

CHAPTER FOUR

CHAPTER FIVE

CHAPTER SIX

CHAPTER SEVEN

CHAPTER EIGHT

CHAPTER NINE

CHAPTER TEN

CHAPTER ELEVEN

CHAPTER TWELVE

CHAPTER THIRTEEN

Appendix A: Perspectives

Appendix B: Muscular Dystrophy: What Is It?

Appendix C: Useful Lists

Acknowledgments

Endnotes

For Alice, Robert, and Jerry’s Kids around the world

Foreword

Wisconsin never looked so good.

Seems to me I first really met Bradley Carlson in hardly a garden spot. It was the darkness of a bowling alley bar, as he pulled a late shift and served us up some bottled beer. It was the afterglow of celebrating the induction of our area’s newest bowling hall-of-famers.

Bradley belongs to bowling, through and through. And he’s a Wisconsinite, and rightfully proud of it.

Bradley Carlson has a debilitating neuromuscular disease known as Becker’s muscular dystrophy. It defines him, but in the most uplifting of ways.

Wisconsin 1 Step at a Time is a travelogue like no other, told through the quirks, incredible beauty, and history of a great state, with a guide like no other. Becker’s muscular dystrophy ultimately forced Bradley to the bowling sidelines: it makes simple walking difficult and precarious. So this man chose to bring Wisconsin to life for readers with his sometimes unsteady stride. Six hundred cities—bridges, sand dunes, waterfalls—he walked them all.

Did you know the home with the brightest yellow paint is in Hilbert? Fish are a-plenty in Wisconsin’s waters, but it takes Bradley Carlson to introduce us to a burger-flipping trout.

Bradley’s honesty is everywhere in a journey that took ten years and was a lifetime in the making. For the record, every mile is documented in the most indisputable way. Bradley brought family, friends, and strangers along to walk all corners of the state.

My modest contribution to this entertaining and inspiring saga comes as a result of serving for many years as emcee of Madison’s Labor Day Jerry Lewis Muscular Dystrophy Association (MDA) Telethon. I somewhat stumbled into the role as a by-product of being a news reporter for WKOW TV. I’ve remained in the role to honor the courageous people who benefit from the MDA Telethon. The Telethon’s purpose is to solicit funding for medical research into Becker’s muscular dystrophy and thirty-nine related conditions, including Duchenne muscular dystrophy and Lou Gehrig’s disease (amyotrophic lateral sclerosis, or ALS). Financial pledges during the Telethon also support a children’s summer camp; the purchase of adaptive equipment to help people with physical challenges live, work, and play; and worldwide educational efforts to raise awareness of these diseases and support efforts to treat and cure them.

At its heart, Wisconsin 1 Step at a Time opens our eyes to the struggle of living with these conditions. In addition to his own insights, Bradley includes moving vignettes from friends and family members who also have neuromuscular disease or care for those who do. Their stories bring me to tears.

Like life at times, this is not a walk in the park. Bradley’s sojourn involves constant searching for sidewalks with curb cuts, for the good fortune to stay ahead of storms, for the fortitude to recover from frequent falls, and for the humility to absorb the embarrassment of having to be gingerly helped up in the middle of town.

Through it all, as this forty-something guy traveled on foot, he meticulously noted what many might have missed. If you’re a veteran, you will appreciate Brad’s homage to Wisconsin places memorializing the deeds of those who have served. If you like pie, he takes you to Osseo. If you’re a Badger who’s tended a corner garden with love, there’s a chance you made these pages. If you have trouble getting around, it’s a how-to and where-to.

It was a great walk, Bradley writes of a fall afternoon in the community of Windsor—one of his almost countless days on the road. Feeling the leaves crunch underfoot and hearing them shuffle around is something special.

Bradley Carlson has given us something special—something that will stir for many a love of a place in America’s heartland and renewed faith in the human spirit.

Take that step.

Tony Galli

Introduction

Hello, I’m glad to meet you. My name is Bradley, and I am from a special place in the Midwest we like to call Wisconsin. Maybe you have heard of it? It is the home of cheese, cows, and corn. It is the playground of the Milwaukee Bucks, the Milwaukee Brewers, and our beloved Green Bay Packers. Did you know that we are home to the world’s largest six-pack and to a four-and-a-half-story fish and that without us, you could be without hamburgers and ice cream sundaes? Many famous people, from psychics to scientists, have called Wisconsin home. More than a few notorious criminals have lurked in our woods and cities. The incomparable Harry Houdini was even able to Escape to Wisconsin. We have giant sculptures made of everything from cement and broken bottles to rusty tractors and bottle caps. There are ghosts, serpents, and even UFOs causing a ruckus almost everywhere.

You see, Wisconsin is more than brats and beer, and much more than farms and fields. You should stop by sometime—we would gladly show you around. I know the state very well, having been born and raised right here in America’s Dairyland. I’ve seen it all, from Lake Michigan to the mighty Mississippi, and still have a lot more to see. Allow me to tell you about it and to show you around a bit.

Wisconsin, our nation’s thirtieth state, sits nicely among two Great Lakes. The St. Croix, Black, and Mississippi Rivers create our western border, and we share our entire southern border with Illinois. We are in close proximity to both Chicago and Minneapolis, making Wisconsin a vacation destination. Every weekend, thousands of cars pour across our borders en route to grand getaways. Our landscape was etched and engraved by the glacial withdrawal ending the last Ice Age, and we are thus blessed with innumerable streams, lakes, and rivers. We have forests and parks abounding everywhere. Within our borders, you can find prairie flatlands, grassy hillsides, rocky outcroppings, waterfalls, canyons, and even mountains.

Many immigrants came to Wisconsin and settled numerous villages and towns, giving us great cultural diversity. We also have a strong Native American heritage, with several reservations from north to south. These Wisconsin dwellers left a great cultural thumbprint that you can see when traveling from one city to another. We have both intriguing architecture and interesting homes. We have art in public places and public places full of art. You would not have to drive very far to get from one interesting place to another, and there are many beautiful routes on which to get around. We have so much to see and just as much to do—you would love it here.

I have traveled throughout Wisconsin and seen many things you would enjoy. Let me describe for you the panorama of Wausau from atop Rib Mountain and the breathtaking shores of lakes Michigan and Superior. I want to take you to the submarines and ships as well as the lighthouses that dot our eastern border. There are marvelous sports stadiums, not just for our professional teams but also for more than a few college, high school, and local teams about which I’d like to tell you. It will be great to describe the many inspiring buildings located in large downtown areas, such as those of Madison and Milwaukee, and to tell you about other downtowns with their own charm, such as Elkhorn and Fond du Lac. There is a restaurant in Al Capone’s Northwood hideout and another with goats grooming its roof with which I can acquaint you. I want to enlighten you about Wisconsin’s handsome and historic courthouses and even an old-style jail from which we escaped. There were farmlands and a lot of cows and horses with which to talk along the way—let me tell you what I whispered to them. We saw remarkable tunnels and crossed some extraordinary bridges, all of which I’d like to tell you about.

You may now wonder how I came to see so much in this heaven called Wisconsin. An idea came to me one day, and it was a really good one. Let me explain how an idea spurred a plan which became a dream that turned into a journey and, finally, became reality.

CHAPTER ONE

Epiphany

Wisconsin 1 Step at a Time

It all started out as a bad day, when I was already in a bad mood—one of the worst of all time, to be sure. However, this day of the foul mood would soon become something completely different. Leaving the apartment, I intended to walk off my mood; it was almost noon on a warm and sunny summer day (the type of day that could change a person’s mood if he gave it a chance). The plan was a short walk downtown, perhaps through my old neighborhood, before returning home—maybe a two-mile stroll at the most. It would not be as simple as planned.

Gena, a local Pardeevillian, was leaving her home and heading to work—or was it leaving work for her other job? I’m not actually sure. She was following a typical route, probably one she had followed thousands of times before and will follow at least a thousand more. What she couldn’t know was that she was about to change my life forever. At first, she was about fifty yards in front of me, and I doubt she even saw me. She was on a roll, heading down to the store her family runs and moving so quickly that I could not possibly keep up. Boy, was she moving fast! Steadily she pulled away, but I continued to follow her all the way to the store. I rounded the street corner a block away just as she was entering the doors. I never caught up to her, and although we never said a word that day, there was a communication between us so noticeably clear that it was almost tangible.

Since that first moment when I noticed her on that sunny day, I have looked back on that single second of life with almost spiritual reverence. My faith in all humankind was neatly restored over the next special hours. It was a moment of eternal splendor when she came into sight, when the whole world stopped, turned around, and looked at me in a completely new way.

You see, my life was not heading where I had planned. My job, which I had thought was a lifelong career, had gone away to China. I was back in school, trying to learn a completely new profession. Sadly, like those of so many others, my marriage had fallen apart and would soon end in divorce. I would have to move on, leaving the life I had cherished behind. It was a time when I felt completely alone in the world. I was temperamental and moody, and I just did not feel good about anything. I was intensely unhappy.

Maybe even you have been there? Have you felt like you were at the bottom of the well of despair and that even the grass was against you? Questions many of us ask ourselves were prevailing in my mind: what am I here for? What is the meaning of life? I was searching for direction, seeking my place in this world and answers to questions that were unknown to my conscious mind.

I can remember things in my life both good and bad; my first time driving and that first accident; going through college with As and yet failing high school Spanish. I’ll never forget my first day of school, my wedding day, and all sorts of other momentous events. Yet I cannot think of any one second in life that is so crystal clear as that exact moment… and I don’t know exactly why.

When you learn about my moment, you probably will not see its importance. You may find me to be crazy or a little disturbed. But that is all right. You probably will never grasp how it could possibly be so important, but I do not mind because it is my epiphany, not yours.

Epiphany? What the heck is he talking about? What did happen? He saw a girl on the street and never said a word. There wasn’t even eye contact, was there? What exactly is an epiphany anyway? These are all good questions.

Have I mentioned I have Becker’s muscular dystrophy (MD)? Have I told you that I incessantly fall down with no good reason why? Have I brought up the brutal leg cramps that leave me crumpled on the floor, unable to move? How about not being able to climb curbs or stairs without railings so that there are many places I wish to visit that I simply cannot? So you say I have not once brought up Becker’s or neuromuscular disease? I can’t believe we’ve come this far without talking about my life’s blessing.

His blessing? A disease is his blessing? This man must be certifiably mad.

Did I say anything about the tears in gym class when I could no longer stand on my legs from the pain? Did I tell you about the times I have been trapped in a chair at a restaurant because I picked the wrong spot to sit down? Surely I told you how often I fall down in a crowd and become embarrassed when nobody can help me get up? Oh, come on. Surely I must have shared the best thing that has happened in my life, my good fortune, and my gift?

Good fortune? Best thing in his life? OK, it’s settled. Let’s close the book now because this guy is completely off his rocker. Or is he?

I am sure I brought up rarely going to movies because I cannot get out of the seats to go home. Well, at the very least, I must have mentioned how much I enjoy getting funny looks from ushers and ticket salespeople when I ask for a seat without steps to it at events. How about mentioning that winter snow and ice cause five months of near-hibernation each year? No? Well, then, I must not have told you about my dear friend and lifelong companion, Becker’s MD.

Yes, it is official, he is cracked. He is totally out of his mind, and we need to get away from this book now. His disease is a dear friend and companion. It is probably time to put this book away. Or we could read more to see what other bizarre things might come out of him.

I can say that mental illness is not what this book is about. There are times that may be questionable, but so far, I am not under psychiatric care. Talking to such doctors can be very helpful, but it is a subject not at all associated with this story, though at times you may wonder about me. But, then, what is the book about?

Oh, OK, let’s think… he said it’s about his epiphany. He saw a girl. It was a sunny day. It was…

June 2001. I didn’t tell you it was June 2001? Oh, yes, that helps, right?

It was a warm and sunny June day in 2001, he saw a girl, it was the most important second in his life… hey, wait a second. June rhymes with moon, right? There are songs like this. Guy and girl, month of June, the moon, they made no eye contact but communicated without a word being said. All those details—it must be about love. Is this a story about love? That’s it, this must be a love story. It’s all a blessing because he fell in love. But MD, what does that have to do with love? Maybe she has it, too, and maybe they share something? Oh, I got it! It’s all about a guy and a girl with a common disease who persevered and fell in love! That’s it! It’s all about love!

You are 100 percent correct… and all wrong at the same time.

This story is about love in many ways, however, not in the way you may be thinking. Gena doesn’t have MD. It is not a story about her; in fact, I hardly knew her at all. I wish I did, though; she is quite amazing and may not even recognize it.

There was something about that special moment in time maybe only I could see. Others may have witnessed it and yet never really saw what it meant. What I saw in that instant, what suddenly became clear as day, what was absolutely full of clarity in the speck of time, was…

Did I tell you Gena is in a wheelchair? I don’t even know why she is in one, but that really is not important to this tale. You see, Gena being in the wheelchair doesn’t mean anything at all, and yet it means everything to this story. I have known her from a distance for about twenty years, and she has always been in the wheelchair over that time. Do you wonder if I feel guilty not knowing why? Yes, I do, but it’s not something you just ask a person without feeling rude. Knowing why is just not important to this story. What is important is Gena’s attitude and perseverance. I have never seen her hide from life just because of the chair. Her family owns a furniture store and a funeral home in Pardeeville, and she works at both very professionally. She drives a van, and you see her all over town in her chair. She lives her life in a way she should be proud of and is a true inspiration to many, including me. This story is about inspiration. This is also a story about love, attitude, and perseverance.

It is a story about that moment in my life. In that sterling, perfect moment in time, I reached my epiphany. There I was, down in the dumps and sad, unhappy about countless things, among them my MD. Going through my mind was stuff like, I could have been so much happier if I had been normal physically, my life would have been better if I hadn’t had such physical difficulties, blah, blah, blah.

Life is just not fair. Why was I not able to run and jump like so many other kids growing up? I am a good person; this should not be happening to me. Why did it happen to me? Woe is me. Oh, poor me…

Bam!

Epiphany.

Sure, there were millions of things I could not do that other, more able-bodied people take for granted. They do not see how fortunate they are. But I, too, was taking a million things for granted. I was able to get up and move every day without needing a wheelchair. Gena was able to take what life gave her and remain happy and useful; what was my problem?

I was right there behind her on my feet, walking without a crutch, without much pain, and yet I had the nerve to feel down. I could still walk, talk, see, and hear. I was able to remember most things and communicate with others very easily. I was capable of enjoying tasty food and seeing the magical world around me. There was no scarcity of my ability to hear music and listen to fabulous sounds like children’s laughter. What was there to feel bad about? Heck, I had a roof over my head and a few dollars in my pocket, I enjoyed love from my family and friends, and it was a beautiful, sunny day. So how could I ever be down in the dumps?

Now that I’ve realized that life is good and that I have no reason to be sad, what should I do about it? What could I do to get rid of the bad mood and do something with my life? You are wondering why I had to do anything, right? Why not? I had blessings that should be shared with others. But what could I do that would benefit those who were not nearly as lucky as me? Many people are a lot worse off physically than me, many of whom share my exact disease. So what was my epiphany? Well, it involved a lot of thinking over the next few hours, but it only took a millisecond to see the epiphany.

My epiphany was that life is good for me, no matter my circumstances. It sounds simple, and it was; however, there was more to it than that. God granted me this life, and its blessings could be used in assistance to others, to help them feel blessed as well. There were people who could benefit from what I had to offer. In the process of helping them, I would be able to find a personal inner peace. The epiphany was both complicated and simple.

My epiphany was about peace, about loving other people, and about understanding myself. It came from the attitude, perseverance, and inspiration a young woman displayed just by going about her normal life. The epiphany led to a journey we call Wisconsin 1 Step at a Time, and that is how I discovered the wonders of Wisconsin, which I now share with you.

In the hours after seeing Gena, I walked all over Pardeeville, through the entire downtown. My walk continued completely around Park Lake and even out to Highway 44. Standing there at the farthest point in town from my home, I should have been scared. I should have been thinking that I’d never make it back. But I was confident I could make it back home. When I made it to the high school, I was totally out of energy with a mile left to walk. There should have been some panic in me that I would fall right there and nobody would be around to help—but my epiphany drove me onward. Recent history had suggested that my body was not built for this kind of distance; MD would never allow me to go so far. It took longer to cover the last mile than the rest of the walk combined. Many times, I was barely able to take a few steps without a break, but I kept going. I was steadily getting closer to home and was determined to cover the distance without help.

I would learn later that the walk was seven miles, several miles longer than any walk I had the nerve to have attempted in years. Gena inspired me to walk farther than I even thought was possible. By the time I staggered through that last mile home, I knew what I wanted to do.

The exhilaration of this walk helped a vision take shape in my mind. If I could walk this far in Pardeeville, why couldn’t I walk everywhere else in Wisconsin? Why not walk every downtown to see what they had in common and how they are different? Such a goal would create a fun adventure and a chance to meet many people. The undertaking would be a worthy story to tell others, an adventure we could write about and share. We could write a book and use it as an instrument to raise money to cure MD. Growing up, I missed out on many things because of MD, and I certainly didn’t want other people to have things taken away from them. I could not stand by watching as MD ruined more lives, paralyzed otherwise healthy adults, and killed children. This was it—this was a way to do something about MD. I had a way to fight back, and I fell more and more in love with this new plan because of this line of attack.

The plan was to walk in every Wisconsin community before I even knew how many there were. I would find people to walk with me in every place so they could share the adventure and attest to me being there. There would be pictures and interesting stories gathered along the way. I would write about this journey in a book. The book you hold in your hands was a part of that plan—but it would not be that simple.

CHAPTER TWO

The Background Story

Beginnings

To tell the story of where we went, first we must describe where we have been. What brought me to the point at which a great journey across Wisconsin became a good idea? Where was the there that got me here? To tell the story best, we should begin with my childhood.

I was born and raised in Madison, Wisconsin. I was the last of six children, born many years after my next youngest sibling. As a young child, everything was fairly routine. I did the things infants do: I learned to crawl, sit up, feed myself, and walk. However, though my development at first seemed commonplace, somewhere along the line, I started to get up a little differently than other kids.

At about the same time as I was experimenting with my first steps, in the midst of the Vietnam War, my oldest brother David enlisted in the army. On Veteran’s Day, November 11, 1971, he was off to boot camp to be trained as a field surveyor. He struggled with boot camp, but he made it through. It wasn’t until basic training that the real surprise came: my brother hit the instructor with his gun. Not intentionally, but by accident. On a long run with his gun in hand, David fell. The instructor ran to David and grabbed his arm to pull David to his feet when the gun hit the instructor hard in the chin. There had been other falls, but this time, the instructor told David that it was time to see the doctor as he had had enough of this crap.

David’s visit to the doctor began an interesting chain of events. The doctor worked on finding a way to test David’s muscles. He invented a clamp to keep the muscle stretched while he removed a sample for biopsy. His invention earned the doctor a promotion for its novelty, while David was delivered a diagnosis of Becker’s MD, rendering him ineligible for army service. The army felt compelled to state that David’s service had not caused the ailment, as if a genetic disease could have been the army’s fault. Yet his superiors were impressed that David had made it so far through army training with MD: when his last day came, he had served eight months and three days—nothing short of amazing.

MD had now become part of the Carlson family. I started school, and it was in first grade physical education class that physical issues began to appear—my legs became severely cramped if I tried to run for an extended period of time. So it was off to the doctor to see what was happening with me. Because David had already been diagnosed with MD, the doctor had a starting point: he examined me and announced that I, too, had the muscular ailment. It would have taken a biopsy to determine the specific type of MD, which we declined, and although the doctor believed it was probably the same type as David’s, we were uncertain.

What could I do about it? Of all things, the doctor recommended that I go jogging at night with my dad. Yes, the solution to my muscles not being able to handle running was to jog! I was young then and never would have thought to question a doctor’s advice. For about a month, Dad and I would hit the pavement after dinner—after a while, we could even jog to Donutland and have a treat before making our way home. Ironically, I cannot remember my legs ever cramping up after any of those jogs. I don’t know why we stopped jogging, but I do know I rarely rode a bike after that.

A Little about My MD

MD is a group of diseases causing muscle deterioration and weakness. The muscles lack a key protein needed for proper function. Voluntary muscle tissue decreases and becomes progressively weaker. In late stages, fat tissue replaces lost muscle tissue. This makes the muscles look larger than normal. In most cases, the arms, legs, and spine become deformed. There is no known cure for MD at this time.

I do not have the better-known Duchenne MD; we eventually discovered that I have what is commonly regarded as its cousin, a particular form of MD called Becker’s. Becker’s is milder than Duchenne, affecting older boys and young men. The usual progression of Becker’s takes several decades. Further discussion of these types may reveal a little about me as well as what guided me on this journey.

Both Duchenne and Becker’s are passed from carrier mother to affected son. It is important to consult a health care provider as soon as possible if a child is seen to have a tendency to fall; a lack of coordination; difficulty getting up from sitting or lying down; an unusual, waddling gait; enlargement of the calves and other muscles; or high levels of creatine kinase (a muscle enzyme in the blood), because these symptoms could indicate MD. A physical exam, medical history, and laboratory tests will help confirm any diagnosis of MD, including blood tests for enzyme levels of creatine kinase, electromyography to measure electrical activity of the muscles most affected, muscle biopsy (removing a piece of muscle) for disease markers in the muscle tissue, and genetic testing.

The pattern of symptom development for Becker’s resembles that of Duchenne, but with a much slower rate of progression. Muscle wasting begins in the legs and pelvis, then progresses to the muscles of the shoulders and neck, followed by loss of arm and respiratory musculature. Calf muscle enlargement (pseudohypertrophy) is quite obvious. Cardiomyopathy may occur, but the development of congestive heart failure or arrhythmias (irregular heartbeats) is rare.

Treatment is aimed at controlling symptoms to maximize quality of life. Water routines, including swimming, offer exercise without the fear of falling down. Inactivity (like bed rest) can worsen any muscle disease. Physical therapy cannot strengthen the muscles, but it can help greatly with maintaining strength, depending on disease severity. Orthopedic appliances like braces and wheelchairs may improve mobility and self-care.

Genetic counseling may be advisable if there is some history of MD in the family. Sons of a man with Becker’s do not inherit the disorder, but 50 percent of any daughters may be carriers, which means their sons will have a 50 percent chance of developing Becker’s or, in some cases, Duchenne.

My Hero, Mr. Taylor

Throughout elementary school, my physical education teacher was Willie Taylor. The man taught me some of the most valuable lessons I have ever learned. Mom wanted to curtail my physical exertion in school, keeping me out of situations in which I would be in danger of cramping up. Willie would have nothing to do with that; he was adamant that I could participate in some way. When we did less strenuous activities like capture the flag or dodgeball, he would expect me to participate just like the other kids. When we would have timed runs or activities I would not be able to handle, he would expect me to walk or be active in some other way. I remember a girl in the class who had asthma and often could not do things either; he also had her do what she could, without pushing us beyond our capabilities. He would offer us the option to do other things in a way that made us feel good because we could be a part of the class.

Now I know that he was teaching us a very important lesson: to do what we can with what we have and not to dwell on what we can’t do. That one lesson has seen me through my entire life. I cannot thank Mr. Taylor enough for that. He had an enormous impact on my life and on those of many children who passed through his world.

Outside of school, I saw him a lot growing up; he was always pleasant, and despite the passing of the years, he always recognized me. When I learned years later that he was an incredible athlete in his own right, I knew why: he always had the right attitude about things, and I tried to emulate his positive approach to life by doing whatever I could to stay active.

Bowling for the Health of It

Probably because I had three brothers, I had a real competitive streak, but my MD didn’t allow me to compete well. I did get to play some basketball in the backyard, and I threw the football and baseball around, but I wasn’t able to be active in sports. I was a large boy when I enrolled in high school, and I will always remember the disappointment on the face of the sister when she asked if I would play football for them and I had to tell her I couldn’t. But there was one outlet of which I was able to be a part: bowling was my way to be competitive with my limited physical stamina.

Most of my youth was spent in some bowling center in the Madison area. I bowled Saturday and Sunday mornings in leagues; eventually, I also found Wednesday and Thursday evening leagues in which to participate. My friends and I were always running off to be part of tournaments held around the Midwest. Bowling was really my passion, and I was almost good at it. When I left junior bowling, I leapt into an equally busy schedule of adult bowling. I was bowling Tuesday and Thursday nights, Wednesday mornings, and in any tournament I could find, which kept my weekends busy. However, that was not going to last as long as I would have hoped.

One afternoon, my friend Len asked me to bowl with him in the league, and I arrived early to practice. I laced up my shoes, took down three bowling balls and placed them in the rack, entered my name into the automatic scorer, and headed up to bowl. I took my normal approach, but as I went to release the ball, I fell to my knees and watched the ball dive right into the gutter. Falling down, especially in summer with humidity in the air, is not unusual. Often a bowler will stick on the approach and stumble or fall until she works her shoes a little or just gets used to the stickiness. But this wasn’t normal falling—my knees just buckled, and I went down. The worst part was that I couldn’t get up right away. I pulled myself over to the ball return and used that to get up. I thought that was really weird, and at first, I was thinking it was a normal sticking in summer bowler’s fall. I went up without the ball and tried a couple short practice slides on the approach. It seemed OK, so I picked up the ball once again and tried another shot. This time I didn’t fall, but I didn’t feel well balanced and threw another gutter ball.

The ball came back; I picked it up and tried again. I fell to my knees a second time but somehow hit a couple pins with the throw. Again I struggled to get up—I crawled to the ball return and was able to get to my feet. I couldn’t understand what was going on. I threw the ball again, and this time I was able to stop my fall by grasping my knee while another gutter ball was rolling down the lane. I sat down on a chair and tried to collect my thoughts. What was going on? I looked up at the automatic scorer; I had a 2 in the second frame—about 38 fewer points than my average of 200 would require. However, it wasn’t the score that concerned me—why couldn’t I stand up?

After another couple minutes, I got up to try again. I did another practice approach, and that was OK. I picked up the ball and finally threw one time without a fall. I got a four count as I was completely unnerved just trying to throw the ball, but I did it without falling and hit some pins! Another ball to throw—I let it go and again found myself kneeling on the approach with another gutter ball. My wife, Evonne, was watching from behind this whole time, and I knew she was equally concerned about what she was witnessing. It was hard enough to realize myself what was happening, and I became determined to work through it so no one else would see me fail.

In the fourth frame, I fell on my rear end after another throw into the gutter, and I sat there bewildered for about three minutes before crawling back to the ball return to find out that that wasn’t enough to help me up. I crawled farther back to the seats to push myself up into a chair. I don’t know if it was shame, anger, or sadness, but I had tears in my eyes. I knew what was happening: MD was here to seize bowling away from me. I could not let it win. I rose up and threw another gutter ball with another trip to my knees and another crawl to the seats, this time with tears rolling down my face. After four frames, the score was MD 300, Bradley 0. I had to keep going. Ball in hand, I tried a much slower, more careful approach. I stopped, hit one more pin, and was left holding my knees for balance when the ball left my hands. The ball came back, and I stubbornly set out on another approach, determined to strike right through my MD.

On my rear end a second time, watching the ball crawling up the gutter, I accepted defeat. I sat for five minutes or more in complete disbelief. Bowling had been so much a part of my life for so much of my life, and here it was being taken away from me. I threw my balls and shoes back in their bag and sat tying my street shoes while the tears dried on my face and my competitive heart ached. My final game of the bowling era ended with a score of 7. I tried to pay the guy at the counter for my half game, but he wouldn’t charge me, which added pity to my party.

I walked over to the league secretary and said, Do me a favor. When you see Len come in, tell him I cannot bowl; I’m finished. We talked a while, but he didn’t realize I was done for good. He thought I’d work through it and be back next week, but I knew that the bowling career for which I had lived since I was about four years old and in which I had participated devotedly for twenty-two years had ended in a heap on the floor. I eventually waited for Len so I could tell him in person. I felt so guilty letting him down and was beside myself with disappointment that it was hard to do. I bought the team a round of drinks and slinked off into the darkness, dragging my proverbial tail between my legs. The MD was the reason I was done, but I felt as if I had personally let the team down and, more than anything, that I had allowed MD to win.

Losing the Battles

If I were to look at a calendar, I would be able to tell you the date MD won that battle over bowling, but the date is unimportant. That I was about to turn twenty-six is most important because it was at that age that most of my battles were lost. The falling at the bowling alley was only the beginning of what became a real problem: I would be standing completely still and suddenly fall to the ground; I would be walking and seem to trip on nothing and crash to the floor. What began as a twice-a-month problem soon advanced to a twice-a-week one. I only avoided injury because I learned how to fall with some modicum of grace.

After several weeks of hitting the ground three or four times a week, I finally became determined to learn what was happening. I made the dreaded appointment to see a neurosurgeon specializing in MD. He put me through a battery of tests that would probably be considered torture in some circles: one test involved long needles and electric shock. Millions of people have had the same test, but at that moment, that didn’t matter to me; I was nervous as could be. My dad was there beside me; the twenty-six years of my MD mystery were about to be uncovered—I was finally to discover its type. Yes, it was likely unusual to have had my dad there, but I think he needed to know what this was as badly as I did.

The doctor inserted a needle into my muscle and administered a shock, and my muscular reaction to the shock was read. Certain levels of reaction were expected, and several of my muscles were not up to normal expectations. The doctor also took blood to examine—after the needles, that one was a piece of cake. The neurosurgeon had a preliminary idea of what was going on but sent the test results to Baylor, Texas, for finalization. However, the doctor was fairly certain I had Becker’s MD and told me so before I left the office. I had an appointment to meet with a MDA clinic doctor and headed home. My enemy now had a name.

I soon discovered how good the MDA clinics are. With their help, I learned about my MD. They advised losing weight to take pressure off my body, particularly my knees. Otherwise, it was a matter of trying to maintain some exercise without doing damage to myself. The toughest piece of advice was being told that once my muscles became tired, I needed to stop doing whatever it was I was doing right away. It was bad to work the muscle beyond fatigue—rather than making it grow, it would destroy it. Yet another battle was lost to MD: I had always believed that I could do things without the limitations of fatigue stopping me. The important thing, however, was that walking was good and should be available to me for most of my adulthood, if all went well.

Over time, MD came out the victor in many little battles that would have been taken for granted by a more physically gifted person. In addition to Bowling being lost, there was the loss of my ability to run up even two steps; to climb a ladder out of a swimming pool or to change a lightbulb; to hop, skip, or jump; or to carry or lift objects beyond fifteen pounds.

Many other battles were lost. There was the last day I ascended or descended a stairway without the use of a railing. One day, stepping onto a curb from the street was effortless; this ability, too, was taken away, forcing a constant search for curb cuts. There are many businesses that have no curb cuts or cuts that are completely useless, located as they are behind ice machines or other inhibiting structures. Suddenly visiting a business or home became limited to those with level entries. I lost the ability to visit friends and family because of steps into their homes; sometimes just one big step could keep me out. A recent battle lost was not being able to scale the one step in my parents’ home to use the bathroom; now, to visit there, I have to leave as soon as a need to use the bathroom occurs. If I am over for dinner, I eschew drinking to stay longer. These are only a small sample of the many battles I have had to fight.

Feelings of Falling

MD comes in so many varieties and has so many symptoms that it’s hard to thoroughly describe what distinguishes one type from another. Becker’s MD has falling down as one of its blessings. Many falls have been funny, others not so much. I fell once getting off the bus and had to quickly roll up the curb to avoid the bus crushing me as it pulled away. Another time, I fell in front of a bus on the street and needed similar rolling techniques to avoid it. My increase in weight over the previous years only contributed to my falling.

Because of this, I had become trained in how to fall with at least a moderate amount of grace, and I have attempted to master what I call the slow-motion fall, a