PRESENTATIONS

TALKS: DOES ANYONE LIVE FREE FROM SUFFERING AND LOSS? IS IT WORTH THE
STRUGGLE?

In November of 1971, I was an active, liberal, rebellious college student. I was very social, well organized, intelligent and goal oriented. I was fiercely independent with just the right touch of passive aggressive to authority figures. I remember laughing a lot and handling stress without much thought or anxiety. I was able to manage multiple demands with ease. In the fall of that year my world collapsed. I was a passenger in a car that was involved 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 head injury recovery.

I got an impressive set of credentials that afternoon. I right wrist was crushed, both my eyes would never again work together 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 don’t remember anything from November of 1971 to February of 1972. I don’t remember anything of the visits of my friends or the daily vigil of my mother who spend 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 confused, terrified of my surroundings and everyone was asking me how I was feeling. I had no idea why.

I continued outpatient physical, occupational and speech therapy at the 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 insisted that my mother sit where I could see her at all times. The doctors and therapists did what 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. She took me shopping where I had to evaluate and make choices about clothing, which she later returned. Three days a week, she took me swimming to strengthen my body and to re-establish my coordination and sense of balance. 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 I learned to believe that too.

In 1972, 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 could only do one thing at a time. I couldn’t eat and have a conversation at the same time. I used to hesitate between groups of words so often that I was told I sounded retarded. I did not 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 people after my injury, so I watched how others did that wherever I went. I chose role models from the people I like and respected. 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 injury. Nobody told me that I could not or should not succeed. I was a student and my job was to get my undergraduate degree. So nine months after the accident, I went back to school. In 1973, I a Bachelor of Science degree in Special Education. I did not get a teaching certificate because I knew I couldn’t deal with lots of 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 it, 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 wasn’t very good at. I had to do a lot of phone work, which required me to speak, exchange and record information very quickly. I also had to keep myself well organized and I had to prioritize.

After failing at my first job, I decided to do what I did well. So I decided to go to graduate school, out of state, far from the safety of my parents’ home. I applied to Schools of Social Work where I wanted to live and that didn’t require the graduate record exam, because I wasn’t good at taking tests. Two schools accepted me and I chose 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 my statistics course and maintaining friendships because I didn’t know my own boundaries.

Six months after graduation I got my first social work position at a suburban Detroit hospital. Six weeks later I was laid off and to this day I don’t know why. Nine months later I got another job in alcohol treatment and was fired from that one too. Please understand that I could present a very capable, qualified image, but just couldn’t live up to it. 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.

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. But 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 11½ months. 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 Head Injury Alliance meeting. I learned that I could help others who have physical problems reintegrate into the mainstream because I was 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.

Fourteen years after my injury, I finally realized that I couldn’t do everything I wanted to do. I became clinically depressed and began to grieve the loss of a life that I could never have. Another Michigan Rehabilitation Services counselor sent me to a sheltered workshop as an evaluator aide. I stayed there for 3½ 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 esponsibilities. I found myself trying to develop the skills that my new responsibilities required. The strain of trying to meet these 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, was picking me up off the floor. I’d had a seizure. I was taken to the hospital where four stitches were put in the back of my head. My neurologist put me on Phenobarbital. I had to find a new way of life and a new place to work. Again, I sought the help of Michigan Rehabilitation Services. The Head Injury specialist there sent me to my first Brain Injury Rehab program eighteen years after the injury. At age 39, I learned a lot. I learned what behaviors I could reasonably expect after a brain injury. I realized that I wasn’t totally at fault for all the jobs that I’d lost. 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. I understood that I wasn’t a failure just because I was unable to work in the mainstream.

Today I am work as a Disability Peer Counselor when I’m able, which is rarely at night. I’m usually quite capable in the mornings and afternoons. I am aware of the activities that deplete my energy and try not to do them. I know what I do well and I know when I need help. I have difficulty when I do office work, like typing or filling. I can establish relationships and talk with just about anybody. I rely on my ears for acquiring new information. In other words, I’m an auditory learner. I need to be shown how to do whatever I’m attempting. I LEAD AN INTERDEPENDENT LIFE AND I’M COMFORTABLE ASKING FOR ASSISTANCE WHEN I NEED IT.

Now I’m going to mention some difficulties I confront, most on a daily basis.

I’ve lived with my difficulties for more than 30 years and I’ve learned that:

IT IS IN MY BEST INTERESTS TO CONFRONT RATHER THAT AVOID MY PROBLEMS

I THINK OF MYSELF AS HAVING A BATTLE WITH THE DEFIECTS CREATED BY MY INJURY. AS LONG AS I REMAIN IGNORANT OF THE STATUS AND COMBAT CAPABILITY OF MY EMEMY OR DISABILITY, I WILL BE UNABLE TO AVOID OR REDUCE MY OWN SUFFERING.

When I familiarize myself with the difficulties that might occur, my distress seems to be reduced as well as my fear and apprehension toward life with this problem. When I no longer need to be afraid of what might happen, I can better prepare myself for the options (Success Strategies) that I must make.

I have learned that in order for me to make changes, I need to have goals. Those goals must be realistic and attainable. I also need to have an ultimate goal or dream for my future. I recognize my difficulties in the here and now. I commit myself to making an effort to create the gradual changes that will hopefully lead me to my ultimate goal.

When bringing about genuine change, I need to make a sustained effort. My experiences have taught me that it takes determination, effort and time to modify behavior. While it’s important to set reasonable expectations and be respectful of the reality of my situation, I feel that I must never lose sight of what I eventually hope to realize. In his book about the teachings of his Holiness the Dalai Lama. Dr. Howard Cutler writes, “ Without expectation and hope, without aspiration, there can be no progress”.

How do I win the war against the residuals of my problem?

I have learned that I have to accept what I absolutely can’t do, before I will allow myself to learn the skills necessary to do what I want to do. Then I must remember that every day and every task is different. Just because I am able to do something today, at a particular time doesn’t mean I’ll be able to repeat the process on another day, at another time. I have created a guide for rehabilitation professionals and for survivors of injury/disability/illness. It is called, ACCEPTANCE GROUPS FOR SURVIVORS, A Guide for Facilitators. It is a structured group format that is designed to help people accept themselves and their life circumstances. It can also be used as an individual’s personal workbook. It is available at www.survivoracceptance.com or can be ordered from bookstores.

The objectives of these groups or workbook are:

Since all people learn through repetition, each meeting starts and ends in the same way. Before every group, a participant reads, RECOVERY DOES NOT MEAN THAT YOU WAKE UP AND YOU’RE FINE. IT DOES NOT MEAN THAT YOUR MEMORY BECOMES INTACT. IT DOES NOT MEAN YOU DON’T GET CONFUSED AND IT CERTAINLY DOESN’T MEAN YOU REGAIN THE LIFE YOU HAD PRIOR TO THE INJURY/DISABILITY/ILLNESS.

RECOVERY TO A PERSON WITH AN INJURY/DISABILITY/ILLNESS IS MAKING PROGESS. MAKING PROGRESS IS ACCEPTING YOUR DEFICITS. LEARNING SUCCESS STRATEGIES TO HELP YOU WITH THOSE DEFICITS AND LEARNING TO LOVE AND VALUE YOURSELF.

At the end of each meeting, all participants name a positive change that has taken place since the injury/disability/illness or they make a positive self-statement. Is it Worth the Struggle? YES!

I accept myself with all my limitations. I do the best I can with what I’ve got & I know that recovery is making progress. Making progress is simple but it’s not easy. It requires commitment and a single-minded, sustained determination to overcome obstacles and improve. Doing anything to try to make a change is positive. Making a steady effort is making progress.

At the beginning of this article I asked, Does Anyone Live Free From Suffering and Loss? I know that I don’t. My life has taught me that I was not singled out for the terrible misfortunes I have experienced. That insight doesn’t eliminate or minimize my problems, but it does reduce the suffering that comes from struggling those unfortunate facts of my life. I wish things were different, but they’re not. All I can do is the best that I can & like myself in the process.