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PERSPECTIVE from AN ELECTRIC CHAIR
By Mo Gerhardt
AuthorHouseCopyright © 2011 Mo Gerhardt
All right reserved.
Chapter OneTen Little fingers, ten little toes and a loud cry. Everything was normal as I made my first appearance into the world during the early hours of October 16, 1977. My parents, John and Ann Gerhardt, were thrilled to have their second healthy baby boy, Matthew Fox Gerhardt. Thank God, I wasn't a girl—not that I don't wonder what my life would currently be like if I was born a girl, but I don't know if I could have gone through life having the name Gretchen Ann Gerhardt. My initials alone would have said it all—GAG! Sometimes I wonder what goes through parents' minds when they name their babies. Don't they think about the ridicule children will go through growing up?
Even though I was born as Matthew, I will always have my brother, David, to thank for the name "Mo". He wasn't yet three years old when I was born, and the name Matthew was too difficult for him to pronounce. As hard as he tried, all that would come out was Matt-Mo. That being said, my future was forever plotted as my parents also started calling me Mo.
Sure, I've heard my fair share of "Where's Larry and Curly" jokes, and was asked when I was going to go "mow the lawn,", but the name Mo has become as much a part of me as other famous nicknames have for others. Just as George Herman Ruth doesn't have the same appeal as Babe Ruth, Matthew Fox Gerhardt doesn't connect with me as well as Mo does.
My mom was actually grocery shopping when she went into labor. A quick ride to the hospital and a couple hours later, out I came. Dr. Don Good was the obstetrician. His wife would later be my kindergarten teacher—two early signs that, yes, my childhood, in the simplest terms, would be just that ... good!
Both of my parents were school teachers within the Traverse City, Michigan, public school system. My mom took the remainder of the 1977 school year off on maternity leave, but went back to teaching the fall of 1978. That of course meant finding daycare for me. Through a friend, my mom had been advised to contact Bonnie Sonnemann, who had also given birth to a boy, Kevin, in May of 1977. Bonnie was looking to add a baby about Kevin's age to her daycare. It ended up being one of the most significant phone calls my mom has ever made.
At eleven months, you really don't have a say in who your friends are. It's simply whomever your parents take you to go play with. That's how it was for Kevin and me. We became friends before we knew we even were friends. Due to our looks, we'd never be mistaken as brothers, but I'm sure I spent more hours growing up together with Kevin than I did with my own brother. Whether it was building with Lincoln Logs indoors, making snowmen outdoors, or running around in our Underoos both in and outdoors, we did it together. After being together, just the two of us, a third was added to the mix a couple years later as Bonnie had another baby boy, Kyle.
Three is never the easiest number to play with as you always feel like you are one person short or have one too many. Even so, we always seemed to manage to come up with rules or adaptations to make sure things were even; for better or worse, that would become easier to do down the road.
I basically grew up with a baseball glove in one hand and a ball in the other. Sports are huge in my family, and baseball easily tops the list. My dad played all through his school years, spent nearly 30 years coaching high school baseball, and was the Field Director for the American Legion Junior Baseball program in Traverse City for 20 years. David was easily the top catcher in Traverse City, if not the state, for his age, and earned MVP honors his senior year on the varsity team.
I remember playing countless hours of whiffle ball with my brother in our backyard at 2206 Aspen Drive. My mom was a great sport as we literally ran permanent base paths into the grass. We always felt like we were professional players as we got to use some of the equipment our dad had for his teams. Best of all was our homeplate. We didn't have to use somebody's mitt, a hat, or any other odd toy lying around; we had a real home plate—at least to us it was real. It was a portable, heavy-duty rubberized homeplate you would use on indoor turf fields or with batting cages. No other kids had one, so we knew we had something special.
First base was the corner post of the deck that overhung the yard. Second base was a dirt patch we made by basically ripping out the grass and kicking the ground with our feet. After a few scoldings from Mom, I think she realized it was a lost cause when one day she found Dad helping us form our dirt patch for second base. It would turn out to be just one of the many things she would give up when it came to baseball and all three of her Gerhardt boys! Third base was a large tree that just happened to be placed perfectly to complete our field of dreams. The previous family that lived in the house had a fenced-in garden located in what would be left-center field. Rather than having to delay the game to open the gate and retrieve balls hit in there, this area became an extra outfielder. Any ball hit in the garden was considered an out, ghost-runners became a common term, and two brothers pretending to be the current All-Stars of the day was the norm.
I miss those days of crushing a white whiffle ball deep into the outfield grass with my giant red super-sized plastic bat, creating my own play-by-play call when it came down to the bottom of the ninth with two outs, a full count, and I'm the winning run. Most of all, I simply miss just being able to put on my glove and play catch with my brother, not because we now live in different places, have full-time jobs, or are too old for such leisurely activity, but because even if I did have a glove on, I doubt I would physically be able to catch the ball, and there is no way I could throw it far enough back to him. I'm a very positive and optimistic person, but lots of times it's those simple things in life I'm not able to do that get me down more so than the obvious bigger ones.
I don't remember the specific day I was told I had muscular dystrophy. There wasn't a specific medical examination that I recall. I do remember various doctor offices and wishing I had fish tanks with the same exotic fish. I'm sure my parents sat down with me one day and, in the simplest terms they could, explained why I was slower than everybody else; why I couldn't race up the stairs as fast as my brother; why I couldn't hit a baseball as far as my friends; why it took me longer to get up off the ground; why I'd tire out so quickly. I just don't really remember anything like that. You'd think I would.
In that way, even though I wasn't diagnosed until I was eight years old, I feel as if I've lived with muscular dystrophy my whole life. I can recall being in kindergarten and not being able to get up from the floor as fast as the other kids or not being able to pop up from sitting "Indian style" as it was called then. It bothered me, but I was about six years old; it's not like I was going to analyze the situation. The muscle deterioration in Duchenne Muscular Dystrophy (DMD) isn't painful in itself; and since it doesn't affect nerves directly, my normal sensations of touch and other senses were always in order. There was never a time prior to my diagnosis when I felt my body was acting in a matter that warranted telling my parents about.
I didn't follow the normal progression of most boys with DMD. From day one, I was considered an outlier. Normally the course of DMD is predictable. Boys with the disorder are often late learning to walk, which wasn't my case. Parents may notice enlarged calf muscles called pseudohypertrophy, one more symptom I didn't possess. Preschoolers may seem clumsy or fall more frequently and have trouble climbing stairs, getting up from the floor, or running. Although I wasn't clumsy, I did show these other characteristics. By elementary school age, boys with DMD may walk on their toes or balls of their feet with a distinctive gait. To keep balance they might put their shoulders back with belly out in a walk I have always compared to a fully pregnant woman. Nearly all those with DMD lose the ability to walk sometime before becoming a teenager. I was still fully ambulatory up until the end of my junior year in high school.
Luckily my lack of speed and strength at a young age didn't go unnoticed to my parents. With both being public school teachers, they had their summers off. In reality, neither had the whole summer off as they both worked other jobs to offset the lack of pay teachers receive. Even so, we usually picked the month of August to do a family vacation. I didn't have any other relatives that lived in Michigan, so every summer we'd usually pick one of my aunts and uncles or grandparents to go and visit. August 1985 saw us visiting my Aunt Leslie and Uncle Bill, along with my cousin Stephen, who lived in New Mexico at the time. They owned a motor home, and from their house we had planned to go to California to do the Disneyland/Sea World/San Diego Zoo experience. Along the way we went to the Grand Canyon and stopped in Las Vegas. Of course I was way too young to comprehend, "What Happens in Vegas, Stays in Vegas!"
My Aunt Leslie is a physical therapist, so before we took off for sunny So. Cal., my parents filled her in on some of the things they had noticed about my development. Without my brother and me or my cousin Stephen knowing the real reasons as to why, my aunt set up an obstacle course in their backyard. We all thought it was just for fun and something for us to do outside. In reality, she wanted to see how I performed with certain elements and reacted to specific hurdles. It was then, August 14, 1985, my parents' 14th wedding anniversary, that I received my very first preliminary diagnosis of having a form of muscular dystrophy—not exactly the best anniversary present my parents could receive. Unfortunately, it wouldn't be the last time bad news would arrive on that same date during my life.
I seriously doubt anything was said to me during the trip, but I sure do remember an infusion of doctor appointments after returning home. It seemed like everyone was with a new doctor, yet each had me do the same tests. Pull this, push that, sit down, stand up, jump, hop, skip, you name it, I was asked to do it. Each appointment seemed to end up with some sort of blood work having to be done. Even as a young kid, I was able to tolerate a high level of pain, so this never bothered me a whole bunch. Of course that's not to say I still didn't play it off as having to be tougher than I actually was and be a brave little patient. A sucker, stickers, Snoopy Band-Aids, whatever they gave out, I'd walk away with it for being so good. To this day, I still seem to have a way with nurses!
It was finally determined I would need to have a muscle biopsy performed in order to get a true and final diagnosis, at least as of then. The operation would be performed at the University of Michigan C.S. Mott Children's Hospital in Ann Arbor, Michigan, not exactly the first place a family of Michigan State University fans and alumni parents wanted to hear they had to go to. An exception could be made in this situation as we were dealing with medical issues and not touchdowns or baskets, as long as my hospital gown wouldn't be maize and blue. I also say "operation" as opposed to "procedure" because at that time the muscle biopsy performed required me to have full anesthesia, as opposed to just a local anesthetic in my thigh where the biopsy was performed.
It's funny the things you remember from certain events, especially those that occur at a young age. Once again, I don't remember any specific discussion I had with my parents about having to go and have an operation. What I do remember is the gift shop in the hospital and being able to get a collection of super balls that were painted to look like mini billiard balls. I remember being wheeled into the operating room on the gurney and bawling my eyes out when I got to the point where my parents could no longer be with me. I remember there was a large African-American female aide with me, something totally new for a boy who grew up in an almost exclusively white northern Michigan community, who said something to the effect that everything was going to be all right and she was going to wipe away my "crocodile tears." I had never heard that term before and was a little confused as to what she was referring to.
I remember waking up from the surgery and being told I might feel a little nauseated; I wasn't. I remember being told I may be nauseated upon being moved for the first time. I was! I remember when I got back to my room, I had a new roommate. All of his toes had been cut off from a lawn mower accident. I had always wanted to be able to use our lawn mower, but had never been allowed to. Cross that one off the wish list! I remember getting out of bed to use the bathroom, which surprised the nurses because they said it was usually too painful for people to be walking that soon after having a muscle biopsy in the upper thigh. But when you've got to go, you've got to go. After that, I ended up using a wheelchair around the hospital until I was discharged.
I don't remember exactly how long it took for the results to be determined and given to my parents. I'm sure they could probably tell you right down to the hour of the day. I can't imagine what it is like for parents to be told their child has a terminal disease and will be lucky to live beyond his teens. That's exactly what was thrown in my parents' faces. From having a healthy son that just seemed to be slower than the other kids, to all of a sudden having a son with something called Duchenne muscular dystrophy, which they were being told would take my life as a teenager—early twenties if I was lucky—was, I'm sure, a living nightmare. Shock, disbelief, guilt, pain, grief—there probably isn't an adjective that could fully describe their feelings. Diagnoses like that usually do one of two things to a family; it will either rip them apart or draw them closer. Luckily for me, I can't imagine having a closer-knit family than what I've been blessed with.
After missing my most extensive amount of school due to my biopsy since having the chickenpox in kindergarten, I was anxious to get back and see all of my friends. I was still in some discomfort, but able to walk around without much difficulty. Getting up from the ground was an even greater challenge, so my teacher, Mrs. Force, allowed me to sit in a chair when the rest of the class was seated on the floor. This was one of the first times I realized having a disability would have its perks every now and then! I couldn't believe how jealous most of the class was. All of a sudden instead of being the kid that struggled to stand-up, I became the kid that got to sit in a chair. That's quite the promotion in the world of a second-grader. Unfortunately, that only lasted about a week or two as I fully recovered from my biopsy and was relegated back to the floor with the rest of the class.
I wish I had more positive things to say about the clinic and doctors at U of M. Well, not really since they're still Wolverines, Michigan State University's biggest rival, but my experience with them was mostly disappointing, both personally and medically. My parents had a couple of run-ins with the doctors and never really felt comfortable or that their questions were being answered. Of course I was too young to be asking questions, but I do remember vividly the medication I was put on and the resulting side-effects. Prednisone is a common drug, used for a wide variety of disorders. It is a corticosteroid that works to treat other conditions by reducing swelling and redness and by changing the way the immune system works. Normally it is used for a brief period in low doses. It is also the one drug that scientifically has been proven to slow down the course of certain muscular dystrophies, but only when taken continuously and in mega-doses. The reason most doctors don't like prescribing prednisone is due to its many side-effects. It's been known to cause extreme changes in mood or personality, acne, sensitivity to the sun, thin or fragile skin, increased bruising, slowed healing of cuts and bruises, increased hair growth, changes in the way fat is spread around the body, vision problems, sudden weight gain, and swelling of the lower legs, among many other reactions. Prednisone can also slow or stunt growth and increase the risk of developing osteoporosis.
Excerpted from PERSPECTIVE from AN ELECTRIC CHAIR by Mo Gerhardt Copyright © 2011 by Mo Gerhardt. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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