Category: Everyday Life

In my last post, I discussed why I don’t like being called “courageous” and in this one I wanted to address my love/hate relationship with being called an inspiration.

People often say to me, “You are so inspiring!” I used to hate it every time someone said this to me. Now I only hate it when certain people say it to me. But first, here’s when I love it.

I love being called an inspiration when the person who says it actually uses this inspiration to do something great with their life. For example, if someone sees me simply living my life and actually changes their life for the better, that’s great. I love it when people decide to take a positive step in their own lives and turn it into action. That’s when I know I am actually being inspiring. I think everyone is capable of being an inspiration to others, disabled or not, by taking on challenges and pursuing their dreams.

However, I don’t like being called an inspiration by someone who does nothing with it. I have been called an inspiration by several people in my life who then continue to tailspin out of control or live the same pathetic life they complain about all the time. I have sympathy for these people, but if I really was an inspiration to them, they’d do something with it to make their lives better. In these cases, I’d much prefer just to be told I have nice eyes — then I might believe their compliment. If I’m not actually inspiring you to do anything then how can you call me an inspiration?

Being an inspiration is a by-product of what I do. It’s not something that takes effort. If someone is actually inspired by me or my example, that is wonderful. If others with muscular dystrophy see that it’s possible to live a full and happy life, then that’s wonderful too. But really, I’m just doing what I do. The fact that I happen to be sharing my story doesn’t make me any more special than anyone else with muscular dystrophy. We all have our stories and we can all help each other out through words and actions.

How did this happen? I just got a new toilet installed in my bathroom — one of those “ADA compliant” models that is still three inches too short. Initially I decided this excitement was pathetic and I needed some more exciting things in my life. Then I realized I was just happy to see the old toilet go.

The old toilet had three main problems. First of all, it had a perfectly round seat. The only place a toilet like this belongs is in a women’s bathroom. As most men can attest, there’s something unfortunate about having to cram your junk down through the toilet seat when you are sitting down. This is what a round toilet seat forces men to do. It’s a confined space where even the least endowed are forced to deal with private body parts touching toilet seats and/or bowls. In worst cases you cannot possibly do #1 and #2 comfortably at the same time.

Secondly, the old toilet was too low. Normally this would pose a problem when getting back onto my wheelchair. But in this case, it was the transferring down onto the toilet seat that was the issue. Dropping down off my wheelchair several inches often came with a loud thud that shook the pipes inside the wall often causing the dogs upstairs to freak out. And although it only happened once, it was not a happy landing that time I crushed my testicles.

Lastly, the old toilet stopped flushing properly about two year ago. The day this started happening was coincidentally (or not) the same day my brother-in-law shut off their water upstairs to work on their bathroom. The toilet never worked the same since. I mean it worked, but it never stopped running, so every time I flushed it I’d have to turn off the water at the wall. My dad thought this was ridiculous and fixed the constant running problem but then the toilet never flushed on the first try. Magically it would always flush on the second attempt but I’d have to wait three minutes for the tank to fill up again. I really don’t like to stare at poop for that long.

So here I sit, almost 24 hours after the toilet installation and I still haven’t had to use it yet — thus my excitement. I’m pretty sure it will wear off quickly when I realize, “Oh hell, it’s just a toilet!” Until then, however, I’m enjoying the anticipation.

Maybe I do need some more excitement after all.

Even if you haven’t heard the term “learned helplessness” I guarantee you’ve seen it in action. I have noticed it time and time again in people with and without disabilities. It’s one of the most frustrating habits to witness because it’s totally preventable.

To illustrate learned helplessness, let me use my nieces as an example. They are 4 and 2 and each have their own little plastic car that they can sit in and use their feet to push around like Fred Flintstone. They love to roll down this concrete path connecting the two patios in the back yard. The problem is that once they get to the bottom, they can’t push back up the hill because it’s just steep enough to make it too difficult.

Initially, they would struggle to try and get back up the path, usually getting stuck several feet from the bottom. Then their dad would come and either push them or carry them each up the hill. Of course then they’d want to roll back down the path and subsequently the pattern started where they’d roll down, then not even bother trying to going back up because they knew their dad would come down and get them. They’d just yell for him.

Learned helplessness at its finest, or worst, depending on how you look at it.

This afternoon, however, it became clear that this whole process was getting annoying. So my sister decided that the girls needed to figure out how to get back up to the top of the path on their own. She told them, “If you can’t push yourself up from inside the car, get out of the car and push the car up!” Within minutes, the girls were back to the top of the path, now able to execute this entire cycle all by themselves. They were totally self-sufficient.

Problem solved, learned helplessness averted.

Until I lived by alone, I was guilty of learned helplessness myself. It mostly had to do with household chores like laundry or cleaning. Although physically more difficult, these chores were never impossible for me. My mom did all of it for me, however. On the surface it made my life easier but had it continued, it might have made me totally dependent on her for the rest of my life.

Thankfully, dealing with household chores was the extent of my learned helplessness. Instead of learning to be helpless, I’ve had to learn how to do many things to help myself as time has gone on — from chores to getting out of bed to getting dressed to driving — you name it. Had someone assisted with all of these things I might never have learned to do them myself.  It is much easier, mentally, to just let someone else do something than it is to try it, particularly if the task requires a struggle.

Struggling is okay in my book, however, as long as there’s no physical harm involved. Struggling is a way of learning to do something — whether physical or mental. Accomplishing something after a struggle is empowering. If I can feel empowered every day just by getting out of bed in the morning, imagine what the rest of my day will be like?

Better!

The wheelchair stair lift at my high school was a brown monster. It wrapped around a two-flight staircase and clung to the railing like roots or long alien fingers. I’m not sure how many times it had been painted, but there were flecks of green, red, and blue wherever the paint had chipped. The passenger compartment was a big, clunky basket whose door squealed whenever it was opened and banged loudly whenever it was closed. When operating, the noisy mechanism growled and a bright light flashed as a warning. Even with all the commotion, there were weekly of reports of some absent-minded teenager racing up the stairs and getting smacked in the head by the thing as it swung around the corner at the halfway point.

I chose to struggle with stairs instead of taking the lift. This way I could hide my truth and later learn one of my life’s greatest lessons. Even though stairs were difficult for me, I would have crawled up them if I had to in order to avoid the lift. It was on a highly-trafficked staircase in the middle of the school. It required someone else to hold down a button while the rider just sat there for the slow ascent or descent. If the other kids saw me riding that lift, I’d have to answer more questions. At this point in my life I just had “a problem with my legs.” Having to use the lift would indicate it was more than that. I felt sorry for the kid in the wheelchair who had no other option but to sit there on display in that monster with the lights flashing and occasionally slamming other kids on the head.

I just wanted an elevator.

Having been diagnosed with the Becker type of muscular dystrophy in the 8th grade, my only symptoms included not running very fast, having trouble with stairs, struggling to stand up from chairs, difficulty getting up from the floor, walking on the balls of my feet, struggling to put my backpack over my shoulder, not being able to straighten my arms all the way, working hard to get in and out of a car, and, how could I forget having to wear a lift on the outside of my left shoe. We’d buy a nice pair of Nikes and then have to send the left one to a cobbler who would strip off the bottom, glue on a half-inch piece of white composite material, then re-attach the bottom. As if having the bottom back on the shoe would camouflage that bright white piece somehow?

I was as good at hiding my disorder as the cobbler was at hiding that shoe lift. I just didn’t know it. For some reason, despite all these obvious physical challenges I thought that “It’s just a problem with my legs” was a perfectly adequate, if not clinical answer to kids who wondered what was going on with me. As long as I didn’t use its actual name, I thought it would be a well-kept secret. My friends would still be my friends. Nobody would make fun of me for being one of “Jerry’s Kids.” A simple leg problem didn’t mean anything.

One time, on an application to travel abroad, my mom had written “Becker muscular dystrophy” in the section where medical conditions went. Before handing it in, I grabbed some Wite-Out and painted over the “muscular dystrophy” part and impatiently wrote “Disorder” in the bubbling mess of still-wet liquid paper. When the teacher looked at the application, nothing stood out more than that blob of ink and Wite-Out and she asked, “What’s Becker Disorder?” to which I of course replied, “It’s just a problem with my legs.”

Because of this “problem with my legs” I got permission to leave class five minutes early in order to get up the stairs in time for my next class. I had a special pass. It took me longer, but not five minutes longer, to go up the twenty steps. The truth is that I left five minutes early to avoid being seen climbing the stairs one-by-one like an old man or a toddler. I knew that if I only left one or two minutes early, the bell would ring when I had ten steps left and the other kids would start trickling, then flowing through the stairwell. Then, since I could only climb stairs if I used the railing on the left side, I’d also end up climbing against traffic and have students looking at me funny for going up the “wrong way.” Although this happened less than twenty times during my entire four years of high school, these were the most stressful and frustrating moments I experienced.

I really wanted an elevator.

Eventually I figured out some tricks. I realized there was a stairwell by the gym that wasn’t near any classrooms and therefore rarely used by students. If I had to, I could walk way out of my way down there and avoid being seen by anyone after the bell had rung. Another trick got me out of struggling to climb the bleachers during school assemblies. I would sneak up a set of stairs that led to the gym mezzanine and stand along the railing at the top, behind the bleachers. Of course that meant standing up there with the P.E. teachers. The first time I did this they looked at me like, “Why the hell are you up here?” but they didn’t really mind.

Although I had ways of dealing with the stairs, leaving early from class only eliminated part of my feeling of embarrassment. The other part was the act of leaving early itself. I struggled to stand up from the classroom desks, so with five minutes left I’d work up the courage to stand up, waiting for an appropriate time to inconspicuously do so. This was never easy and the worry grew exponentially as the end of class drew near. The desk could squeak or creak or I might not push off the desk with enough oompf and have to try getting up again. I’d also have to pack up my backpack, which meant trying to quietly close the zipper that never seemed to act with any amount of discretion. No matter what I did, the other kids would notice, or at least I thought they would. My favorite classes were the ones where the end of class meant small group discussions. With all the noise, I could just sneak out.

I really, really wanted an elevator.

During high school, I couldn’t talk out loud about having muscular dystrophy. I could write about it, though. When it came time to write college and scholarship essays, I couldn’t write enough about it. The words were sent to strangers, so it felt okay that a college admissions officer thousands of miles away would know the truth. In this case, the truth worked to my advantage. It made me different. It made the fact that I still went to school each day and struggled getting up from my desk and up the stairs seem special, particularly when it meant I could carry a 4.0 GPA at the same time.

But then one day the truth came out. I had written an essay for a Wisconsin state scholarship and referred to my disorder by name. Two kids from each school were selected to get the scholarship and attend a fancy dinner in Madison near the state capitol. I was one of them. My friend Mandy was the other. The dinner was on my birthday, so I was excited about it. When I arrived at the dinner, each seat had a large section of the day’s newspaper that was dedicated to all the students who won the scholarship. I flipped through it to find my name. I found my name, and my picture – this unfortunate shot of me wearing a leather jacket with my hair flying high just like The Fonz from “Happy Days.” It was a spontaneous photo from my senior class picture shoot that never should have left the film. I figured my mom must have sent the photo in behind my back and I was mad. But then I spotted a special article in the side column that said, “Student excels despite muscular dystrophy.”

My heart sank. There it was, in black and white, in a paper that all my friends got delivered to their house. In a paper that my friend down the table was reading. I wanted to run and grab it out of her hands. I wanted to run and grab all of the newspapers printed that day. Now I was embarrassed and stressed. This had gone from the best birthday ever, to the worst. It wasn’t “just a problem with my legs” anymore. My friend now knew it by name.

I went back to school that week expecting a lot of questions. I got none. It made me wonder if everybody knew all long but never said anything to me. (I know now that my mom had a propensity to go and secretly tell teachers, counselors, & other relevant parties all about my medical condition.) My friends still talked to me. We finalized our plans for Senior Ball. It was all very confusing to me. They must not have known because they didn’t treat me any differently. Or did they know but didn’t care? I’d never thought of that as a possibility.

Oddly, it was a relief. It felt like I didn’t have to do any covering-up anymore. It made the act of leaving class early and climbing the stairs less worrisome. Unfortunately this feeling came with only a month left of school before graduation.

It still would have been nice to have an elevator.

Graduation came and went and pretty soon it was time to go to college. I arrived on campus and one of the first things I had to do was pick up the golf cart I was renting so I could get around the large campus. I physically couldn’t ride a bike and things were too far to walk. The golf cart was a nice perk. I took the cart for a tour and then back to my dorm where I chained it to a light post outside my window. After meeting a few people, it came time to go setup my phone line at the student union. One of my new friends asked to come along with me and we hopped in the golf cart. “Hey, this is cool, how come you get to use this?” she asked.

“Because I have muscular dystrophy and can’t ride a bike,” I said, without even thinking.

It didn’t matter anymore. It came out of my mouth as easily as it came out on paper. I didn’t have to hide it from anyone and didn’t feel uncomfortable sharing it. I had learned that it didn’t matter to my old friends and it wouldn’t matter to my new ones. If it did matter to someone I was meeting, would I really want to be friends with them anyway? All the stress was gone and I appreciated that because of all the stress I’d felt before. Every time I climbed the stairs in my dorm to visit friends, I was reminded of high school and my lesson.

This dorm still needed an elevator though.

My high school finally got an elevator the year after I graduated. One day during winter vacation from college, I went back to visit a couple of my old teachers while school was still in session. The new elevator was near the entrance I happened to come into that day. Since my favorite teachers were upstairs, I decided I might as well try it out. I pushed the “up” button but nothing happened. I pushed it a couple more times. Then a teacher coming down the hall said, “There’s a special key for that.”

Of course there was. I was forced to climb the stairs even though there was an elevator right in front of me. I started up the steps, one by one. Halfway up, the bell rang. Of course it did. But I wasn’t nervous. I wasn’t stressed. As kids trickled, then flowed down the stairs, I wasn’t self conscious. I made it to the top and went to visit my teachers. It was closure. It was confirmation of a lesson learned.

I really didn’t need the elevator that day. It felt good taking the stairs.

I was looking at my blog stats and one visitor arrived after searching for “muscular dystrophy is embarrassing” and viewed almost 40 pages on the site over the course of an hour. Not sure what sort of impression my posts left on that particular visitor but I thought I’d address the idea of embarrassment and having muscular dystrophy. I don’t think it’s embarrassing to have muscular dystrophy or any disorder, for that matter.

In my experience, the times when I have felt embarrassed due to my disability are long gone. I know this because a year or so ago, I was being transfered to the aisle chair on a plane and during the lift, my pants slid down far enough to moon the flight attendants nearby. Was I embarrassed? No. I laughed and this allowed everyone around me to laugh too. It was funny.

Often we are embarrassed by things that really are funny. This is probably the easiest type of embarrassment to get over. Once you are able to laugh at yourself, you can eliminate feeling embarrassed by these incidents and the situations become fun instead. For myself, this now includes falling, pants coming off, and a variety of other incidents where I would find myself laughing if I saw someone else do it. Why can’t we all just laugh together? We can.

There is, however, a feeling of “embarrassment” that can come up when dealing with more permanent situations vs. funny incidents. For example, when I started having contractures and walking on my toes, I felt what I thought was embarrassment. Over time, however, I realized that this wasn’t embarrassment as much as it was me not feeling comfortable with my situation. That’s why I put embarrassment in quotes. I wasn’t really embarrassed, I was just feeling different and self conscious.

Self conscious is probably a better term for this type of feeling. I was aware that I was different. I was walking differently, climbing stairs differently. Now that I use a wheelchair, I get from place to place in ways different from most people. Is this something to be “embarrassed” about? Absolutely not. It’s not even something to feel self conscious about. Embracing the fact that you’re simply different is the first step in getting past these feelings. I noticed I stopped feeling self-conscious when my “different” routine became normal to me. In other words, the more I did those things that made me feel self conscious, the less abnormal they felt to me and the self consciousness went away almost completely.

Here are some things I use to remind myself not to feel self conscious when I am out and about and the feeling creeps up:

1. Most people are worrying about themselves most of the time, not me.

2. Whenever people look at me differently it’s because they’re probably seeing something new to them. As humans we tend to inspect new things with curiosity.

3. Would I rather be out and about right now or stuck at home, afraid of what people think?

4. “I’m good enough, I’m smart enough, and dog gone it, people like me.” – From SNL…this always makes me laugh when I start to worry because it makes the worry seem so stupid.

5. Who cares?

Worrying and fear get in the way of a lot of our life’s journeys. Getting over these fears, particularly the fear of embarrassment can lead to much bigger and better things. If you’re not concerned about falling on your face, or walking differently, or using a wheelchair, then you can get to your destiny much faster, with some laughter and a good story or two you pick up along the way.