I’d like to tell you a story. It’s one that I know better than anyone else, because it’s mine.
In the late fall, on November 11th, 1971, I was a passenger in a car that was in a head-on collision in the Ann Arbor area. In that split second my career changed from one of a special education teacher to an entry level position in the field of brain injury recovery.
I got an impressive set of credentials that afternoon. My right wrist was crushed, my left eye dangled from its socket, and I sustained a severe brain stem injury. Fortunately, the driver of the other car was a doctor, who immediately began mouth to mouth resuscitation to restore my breathing. I was rushed to the University Hospital in Ann Arbor, where I was placed on life support.
I have no memory of 2 & 1/2 months. I don’t recall anything of the visits from my friends or the daily vigil of my mother who spent her days talking and reading to my comatose form. I recall nothing of my transfer to the Rehabilitation Institute in Detroit that December.
My first recollection is waking up in my bedroom at my parents’ house, wondering why I wasn’t at the University of Michigan, where I was a student. I had scars on my body and a cast on my arm. The words “Rehabilitation Center” and “catheter” were suddenly in my vocabulary. I was terrified of my surroundings. I was confused. It was now winter, there was snow on the ground and everyone was asking me how I was feeling. The very sad thing was – I had no idea why.
I continued outpatient physical, occupational, and speech therapy at the Detroit Rehabilitation Institute for three months. I was frightened by that place, because I hadn’t yet realized that I had been in a bad car accident. So, I had my mother sit where I could see her at all times, while I was in therapy, because I was afraid of being abandoned.
I know that sounds crazy, but I believed that I was waking up from a bad dream. As I began to regain awareness of my surroundings, I believed that I had escaped from someplace with long hallways and bright lights – that described the ground floor of the Rehabilitation Institute – no wonder fear seemed to rule my life.
The doctors and therapists did all they could and told my mother that she could expect to see improvement in my condition over the next five years. My mother then took over. Guided by her own beliefs, she developed a program for me. She took me shopping, where I had to evaluate and make choices about clothing, which she returned afterwards.
My mother’s strong achievement orientation made me achieve goals. She insisted that I try to do things for myself so I would develop some degree of self-sufficiency and confidence. If I tried and failed, then she would assist. She always believed that I could do more and in time, I learned to believe that too!
In 1972, instead of graduating from college with my classmates, I was concerned with learning to walk without using furniture for support, go up and down stairs, cook my own meals and set my hair. Things that I unconsciously do today were very difficult and required deliberate efforts.
I remember a long hallway that went from my bedroom to the bathroom & then down two steps into the family room and up two steps into the dining room and kitchen. For about 6 months, that was my whole world.
One day, while inching my way down that long hallway to the front door, in order to look at the newspaper, to see the date, I passed a long mirror. For some unknown reason, on this particular day, I decided to lift my night gown, & I was stunned. I was shinny!
Finally, my secret desire to wake up thin had happened! I could pull something positive from what was happening to me. I spent my whole life being pleasantly plump and battling the bulge. Now after 2 ½ months in a coma, I was thin. I had finally stumbled upon a diet that worked! It was OK to struggle with whatever I had to. At least, I was slender.
I could only do one thing at a time after the accident. I couldn’t eat and carry on a conversation at the same time. I used to hesitate between groups of words so often that I was told that I sounded retarded. I didn’t like that at all, so I started listening to how people in the mainstream talked and I copied them.
I also had no idea how to interact with folks after my injury, so I watched how others did that wherever I went. My role models changed as my needs changed. I decided to be the kind of person who got treated the way I wanted to be treated. Somehow I knew I had to treat others, the way I wanted to be treated.
I had no work experience before my accident. Nobody told me that I couldn’t or shouldn’t succeed. I was a student and my job was to study and get my undergraduate degree. So nine months after my injury, I went back to school.
In 1973, I got my Bachelor of Science degree in special education. I never went after my teaching certificate, because I knew I couldn’t deal with students, thirty little sources of stimulation, coming at me at the same time in a classroom. I continued to live in Ann Arbor and by simply doing that, learned to care for myself.
After graduation, I got my first real job and was fired within two weeks. I was mortified! The job required a lot of things that I just wasn’t very good at. After failing at my first job, I decided to do what I did well. Therefore, I decided to go to graduate school, out of state, far from the safety of my parent’s home.
I applied to schools in social work where I wanted to live, and that didn’t require the graduate record exam, because I was no longer good at taking tests. I was accepted by two schools, and I chose to attend the University of Wisconsin-Madison.
Graduate study posed few problems. As long as I could concentrate on one thing at a time, I did fine. I did have difficulty with establishing and maintaining friendships because I didn’t know my own boundaries.
Six months after graduation, I got my first social work job at a suburban Detroit hospital. I was an alcoholism intake therapist. Six weeks later, I was laid off. Nine months after that, I got another position in alcohol treatment and was fired from that one too.
You see, I could present a very capable, qualified image but I just couldn’t live up to it on a continuous basis. I wasn’t aware of my deficits, and I believed I could do anything I set my mind to.
From that point in 1977 until the end of 1979, my job expectations and experiences deteriorated. I either quit or was fired from jobs that I didn’t like or couldn’t do.
Have you ever just wanted a chance to do things over and begin again? Well, that’s just what I did. In January of 1979, I “ran away” to another state, where I knew no one, to see if I could start a new life. I tried to leave all my terrible accident related experiences in Detroit and start over. Unfortunately, I couldn’t do it. My injury had become the dominant factor controlling my life. I returned home one year later.
My former Department of Vocational Rehabilitation counselor, who had become a Michigan Rehabilitation Services counselor, sent me a therapist who did occupational, vocational and psychological therapy in my home for two hours, twice a week. She helped prepare me for a secretarial position which I held for nearly one year.
I hated the work and got into a disagreement with my boss, who fired me. After exhausting my unemployment benefits, I started a private practice in social work so that nobody could fire me. This is about the time I attended my first Michigan Head Injury Alliance meeting. I felt I could help other physically challenged people reintegrate into the mainstream because I was getting pretty good at that myself. The practice was sporadically successful for two very trying years. When my last automobile insurance client terminated, I fell apart and the practice collapsed.
I finally realized that I couldn’t do everything I wanted. I became clinically depressed and began to grieve the loss of a life I could never have.
Another Michigan Rehabilitation Services counselor sent me to a sheltered workshop as an evaluator aide. I was probably the most over qualified aide this agency had ever had because I had a master’s degree, but I stayed there for 3½ long years, because I could do the job, and I was unaware of other opportunities.
The staff changed at the workshop and so did my job responsibilities. I found myself trying to develop the skills that my new responsibilities required. The strain of trying to meet the radically changing requirements, at the rate at which they occurred finally took its toll. One morning I got up for work and the next thing I knew, my boyfriend (who is now my husband of 20 years) was picking me up off the floor. I’d had my first seizure.
He took me to the hospital where they put four stitches in the back of my scalp. Frustrated by the isolation imposed upon me by my deficits and those that came from being literally plucked from the life that I had expected to live, I reluctantly acknowledged that I was depressed. I could just barely take care of myself. I was able to accomplish tasks and exercise in the mornings. I could only socialize on a limited basis, and I was always sad.
Once again I sought the help of Michigan Rehabilitation Services. The head injury specialist there sent me to my first brain injury rehabilitation program in 1989. At age 39, I learned a lot. I learned what behaviors I could reasonably expect after a head injury. I realized that I wasn’t losing my grip but that I had a brain injury.
What a relief that was! There were things beyond my control that contributed to my losing so many jobs. I could take myself off the hook. Also in 1989, I was married. After my wedding I began speaking to survivors of brain injuries about what empowerment meant to me.
I went on to do some soul searching and realized that my greatest strengths were in talking to people and in group work. So in 1990, while working as a rehabilitation associate for an outpatient mental health clinic, I created the format for “Acceptance Groups for Brain Injury Survivors”. The group’s primary purpose was to create an environment where survivors of brain injuries could talk to one another about problems living in the mainstream. In 2001, after collaboration with a professional medical writer I published Acceptance Groups for Survivors: A Guide for Facilitators.
In 2002, my website was built and I began sharing my experiences, my thoughts and general information about disabilities. My web site also became a place where visitors could get support for living with any obstacle they were facing.
It is my belief, that the severity of the challenge or disability cannot be determined by anyone other than the person who is living it. In other words, my hell or bottom is no better or worse than yours. Hell is Hell. It is a great equalizer!
I’ve smoothed out a lot of my “rough edges”. I don’t like having my deficits, but I have learned what they are, in a very intimate way. I believe that I compensate for them very well. Personal empowerment means I own all the consequences of my choices, good and bad. I can’t live as active a life as I once had expected, but I can honestly say that I do whatever I want, because I’m the one who has changed those wants.
In the eleven years since I wrote the original version of this story, my life experiences have only cemented the lessons I learned when I was first hurt. Those lessons are; 1) Take one step at a time 2) Keep it simple 3) Finish what you start 4) Be kind & respect yourself. And the one that I’ve added is; 5) Believe you will succeed.