For 10 years after the stroke, I anguished over my poor self-image. Though my body and brain were not working in tandem any longer – half my body was paralyzed, my thinking was confused, and I couldn’t speak – I constantly compared myself to myself before the stroke. I concluded that since less than half of my body worked, I was less than half a person.
My attempts to change that negative viewpoint caused me to realize how screwed up I was. I felt as if I were fighting to keep from sinking in quicksand.
I went to college over 10 years, taking classes that demanded memory, thinking and communication. When I wasn’t exercising mental gymnastics, I was doing something physical that forced my body to react and do what it should so it all would work – something to get the damaged brain tissue to respond. Everything was a constant mental and physical “boot camp.”
During this time, I worked as a special education teacher, in small and large classrooms, teaching young and old students with a wide range of physical and mental capacities. I felt good teaching, but I was still haunted by my poor self-image.
How could I understand and believe in myself when I was no longer like I used to be? At college, I shifted to psychology to counsel people with disabilities. I realized that these were my peers and we had comparable day-to-day living agendas. Even though I was counseling them, I was personally relating to what they were going through.
The word “handicapped” originated during WWI in England, when soldiers returned from the front – blind, deaf, amputated or maimed in some other way. The British government gave the veterans a “cap” so they could hold it in their “hand” to beg. And so, they became known as “handicapped.” The mindset at the time was that they were no longer “whole,” so there was nothing else they could do. Our society still carries that outlook.
With all of my confusion and torment, I wished that people could overcome the stigma and look past my disability. I wondered, “How can I help people understand this? Have there been any educational programs to help people understand about people with disabilities?” I hadn’t heard of anything like that.
As I considered how to structure this program, I realized I should start with children. They should be old enough to understand and, at the same time, young enough to still be innocent and receptive to something different. A couple of weeks later, I visited a second grade teacher and explained my “disability awareness program.” She invited me to share my experiences with her students the following week.
I was extremely excited. Finally, I had my opportunity to help children understand that people with disabilities are still “real” people! I felt as if I had just cracked open the door to my future.
That night I mentally “walked through” the previous 10 years, from when my brain exploded to the present. I remembered the first terrible experience after I was out of the hospital and at my parents’ home.
That first morning, I decided to walk around the block. I had a hard time keeping everything coordinated and also seeing where I was going; most of the time I had to continue watching and commanding my legs and feet.
Along the way there were greetings from neighbors, and even though I had to concentrate on every movement, I felt great! I thought ‘what a miracle it is that I’m alive.’
Enjoying that moment, I spotted three kids playing marbles. As I approached, one of them looked in my direction, pointed, and yelled, “Yikes! He’s weird!” Forgetting the marbles, they all ran away. I was humiliated and devastated and sputtered with frustration for a moment, but then a thought started crystallizing: “You were supposed to die, but you lived. Some people said it was a miracle. But miracles have to have a profound purpose. What’s my mission?”
Before I got home, I knew that I wanted to help people understand that the disabled are still human beings with the same emotions as everyone else. I knew that was the purpose of the miracle and determined not to lose sight of that idea.
I knew I wanted to teach children about life, to use my experiences as a window through which they could see and understand those who are different.
It had taken me 10 years to muster enough self-belief to put the program together and realize my mission. I was excited about the presentation. I collected the props – a wheelchair, cane, walker, blindfolds and joint braces. I put together a script so I could remember what I wanted to say.
The day came and before me sat 30 second-graders. I felt comfortable because I had taught many times before, but I was also scared because my presentation was going to expose a part of me that I had never shared.
When the teacher introduced me, my face flushed. For a moment, I felt lost. I closed my eyes and remembered why I was there. I walked toward the equipment and asked what they knew about people with disabilities. I continued talking and walking back and forth with my limp.
I spoke about different types of disabilities: people whose legs don’t work, others who can’t see or speak or hear, some who think slower than others, and how some types of disabilities are more difficult than others. I explained how the equipment worked and how it helped.
I paced more with my limp and mispronounced some words, mentally beating myself up for each mistake. I explained that the feelings the students feel are just like the feelings of people with disabilities. At that point, I noticed that my voice pitch went higher.
When I spoke about strokes, everything got more intense. Then I began talking about my stroke, and I paced more quickly than I thought I could. I explained how I almost died, about being in a coma, how half of my body was paralyzed. My voice was almost shrieking, as I stormed back and forth in front of the kids. At that moment, the school bell rang!
The teacher said we still had five minutes. I asked if there were any questions. There was a pause…a child in the back said, “Why are you pacing sooo much?”
I felt as if I had been caught doing something wrong. I was embarrassed, and then scared about exposing my flaws. Another second slipped by. My voice quivered and cracked as I said, “I was pacing because I was so afraid of being teased and made fun of by all you kids! Many times I have been made fun of because I walk with a limp, and when I talk, my speech is slower. Many times I say the words wrong. I get teased for being different!”
I paused, reaching for other words, but before I could speak, the students responded as a chorus, “Oh no! We wouldn’t make fun of you! We really like you! We want you to come back!” Spontaneously, they ran up and started hugging me, holding me by my legs, jumping into my arms and kissing my cheeks.
Can you imagine? After 10 years of being misunderstood, made fun of, and thought of as “less-than,” I had built a lot of very thick barriers to keep the pain away. But the children melted my heart! At my most vulnerable moment, they showed me their beauty, and how they saw something they liked about me! Then the second school bell rang and the kids ran out for recess.
Driving home, I reviewed that wonderful encounter. “For the first presentation,” I thought, “it went pretty well. The kids were so great! They all accepted me just the way I am…walking with a limp…speaking slowly and mixing up words. It turned out great! Those kids said I was OK! They were beautiful!”
Then my throat tightened and my eyes teared up. Suddenly, one of the most powerful thoughts I’ve ever had blasted through all my resistance, rationalizations and fear of the truth. “If the children can fully accept me, why haven’t I accepted myself?”
I pulled the car to the side of the road. Since my stroke, I had been doing my best, taking on the hardest situations to get my life back. By getting my college degrees and working, I had attempted to prove that I was “whole.”
My goal of returning to how I was before had obscured a crucial fact: I hadn’t accepted myself “as is.” Spinning from the second-graders’ genuineness, I realized I had to let go of trying to “get back.”
Until that day, I had viewed myself as handicapped, but my new view was that I am only limited as I think I am! My future is whatever I want to make it! I realized that the past is written in stone, but the present and future have not yet been engraved! I was so relieved that I didn’t have to do the impossible by returning to the past.
At that moment, I realized that my life was totally mine!
At the time of my stroke, 85 percent of people with intracerebral hemorrhage died, but I had lived. Standing in front of those second-graders gave me a clue to the purpose of that miracle – the more I give, the more I live.
I was ready to step forward into my future, proudly, and with my own unique gait.
Editor’s Note: Rod McLean was co-author of Stroke Survivors with William Bergquist and Barbara Kobylinski, published in 1994. This article is excerpted from their book, Stroke Recovery: Stories of Hope and Healing, which chronicles Rod’s 30 years of recovery, as well as insights from other survivors and caregivers.