Does Anyone Live Free from Suffering and Loss? Is it Worth the Struggle?
IN THE BEGINNING:
In November of 1971, I was an active, liberal and 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 resistance to authority figures. I remember laughing a lot and handling stress without much thought of anxiety. An ability to manage multiple demands came easily to me. In the fall of that year, my world collapsed.
MY HEAD INJURY COLLISION:
In a split second, my career changed from one of a special education teacher to an entry-level position in the field of brain injury recovery. This was brought on by my being involved as a passenger, in a head-on collision in the Ann Arbor area.
That afternoon, an impressive set of credentials was awarded to me. My 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 physician, who immediately began mouth-to-mouth resuscitation in order to restore my breathing. After being rushed to the University Hospital in Ann Arbor, life support was administered to me.
From November of 1971 until February of 1972, my memory does not exist. I don’t remember anything of the visits of 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. Confusion set in and I was terrified. My surroundings were unclear to me and everyone was continually asking me, “Nancy, how are you feeling?” The sad thing was, 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. I insisted that my mother sit where I could see her while I was in therapy, because I was afraid of being abandoned.
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. She took me shopping, where I had to make choices about clothing, which she later returned. Three days a week, she took me swimming to strengthen my body and 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 that 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, this became my belief as well.
In 1972, I was concerned with learning to walk without using furniture for support. I also needed to relearn other life-skills, like going up and down stairs, cooking my own meals, and setting my hair. Things that I unconsciously do today were very difficult and required deliberate efforts.
One thing at a time became my new mantra. Having a conversation and eating could not be done at one time. I used to hesitate between groups of words so often that I was told that I sounded retarded. As you might expect, this did not make me very happy. 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 trauma, so I watched how others did that wherever I could. My role models were chosen from the people I liked and respected. A goal became to become the type of person who got treated, the way I wanted to be treated. Somehow I knew I had to treat others in this way, in order to be treated well in my new post-trauma circumstances.
REFLECTING BACK:
Before my injury, I had no work experience. Nobody told me that I could not of should not succeed. My job had been as a student working toward getting an undergraduate degree. So nine months after the accident, I returned to school. In 1973, I earned a Bachelor of Science degree in Education. A teaching certificate was not awarded to me because I did not do regular education student teaching. I knew that I couldn’t deal with all the sources of stimulation, students, 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.
WORK HISTORY AFTER THE ACCIDENT:
After graduation, my first job lasted only two weeks. This was mortifying to me! The job required a lot of things that I simply wasn’t very good at doing, such as exchanging and recording information quickly. Two more skills that I learned that I didn’t have and needed, were an ability to keep myself well organized and to prioritize
After failing at my first job, I decided to do things where I knew I could be successful. So, my next decision was to attend graduate school, out of state, far from the safety of my parent’s home. I applied to schools of social work, where I wanted to live and that didn’t require the graduate record exam. Test taking had become difficult for me. Two schools accepted me and I chose to attend the University of Wisconsin-Madison.
Graduate study posed few problems. As long as I was able to concentrate on one thing at a time, school went well for me. Still, there were difficulties with my statistics course, and with establishing 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, don’t know why. Nine months later, I got another job in the alcohol treatment, but I was unable to perform to the standards set for this job and it went by the wayside as well.
Please understand that, I could present a very capable, qualified image, but was just unable to live up to it on a continuous basis. I wasn’t aware of my deficits and believed myself capable of doing anything that I set my mind to doing. 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.
RUNNING AWAY:
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 my life over again. However, I was unable to do that. My injury had become the dominant factor controlling my life. One year later, I returned home.
My former Department of Vocational Rehabilitation counselor who had become a Michigan Rehabilitation Services counselor sent me a therapist who did occupational and psychological therapy in my home for two hours, twice a week. This therapist helped me to prepare me for a secretarial position, which I held for 11½ months. By that time, it became clear that I hated the work. I got into a disagreement with my boss and he fired me.
After exhausting my unemployment benefits, I began a private practice in social work so that nobody could fire me! This is the time I attended my first Head Injury Alliance meeting. Before long, it became clear to me that I could help others who had physical problems reintegrate into the mainstream because I was getting good at that myself. The practice was sporadically successful for two very trying years. When my last automobile insurance client terminated, my practice and I both collapsed.
14 YEARS AFTER THE ACCIDENT
Fourteen years after my injury, the realization finally hit me that I couldn’t do everything that I wanted. With that reality came my clinical depression and I began to grieve the loss of a life that was never going to return. 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 responsibilities. It became clear that my abilities needed to be developed, in order to do my job. The strain of trying to meet the radically changing requirements at the rate, at which they occurred, finally took its toll.
THE ILLNESS:
One morning, I got up for work and the next thing I knew, my boy-friend who is now my husband, was picking me up off the floor. When we arrived at the hospital, it was determined that the cause of my fall was a seizure. Four stitches were put in the back of my head and a neurologist put me on the prescription, Phenobarbital. Now, it became apparent that yet again, I needed 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 my trauma and at the age of 39, life lessons began to flood my mind. I learned which behaviors were reasonable to expect after a brain injury and that I wasn’t totally at fault for all the jobs that were now in my past. What a relief that was to learn! There were things beyond my control that contributed to my losing so many job opportunities. That awareness promised that I could take myself off of the hook. I learned that I wasn’t a failure just because I could not work in the mainstream.
MY LIFE TODAY:
Today, I work as a Disability Life Coach when I am able. I am quite capable in the mornings and in the afternoons. I rarely work in the evenings. There are activities that tend to deplete my energy and it is those that I try to avoid. I know what I do well and I know when I need assistance. Office work and manual tasks continue to be difficult for me. I’m able to establish relationships and can talk with just about anybody. I rely on my ears for acquiring new information. In other words, I’m an auditory learner, which requires my being shown how to do whatever it is that I’m attempting.
I LEAD AN INTERDEPENDENT LIFE AND I’M COMFORTABLE ASKING FOR ASSISTANCE WHEN I NEED IT.
My Daily Difficulties are:
- My fatigue
- My feeling that I had lost my place in the world and that I have no reason to live.
- My need to be organized when it is so difficult to do.
- My tendency to compare my injury, rehabilitation and recovery to others.
- Having an oversensitivity of reactions to catastrophe and occasionally thinking about death – I don’t think I being unreasonable to occasionally consider this after having had a trauma. It’s merely one way of coping with some very horrible circumstances.
- My stamina and endurance – my stamina is dependent on the time of day, the activity, and my interest in & desire to do whatever behavior I’m considering.
- I need to be cognizant of my eating, sleeping, exercising, and taking my medications.
- The inconvenience of having to take multiple pills, four times a day.
- The cost of medication and medical care.
- My memory, I forget things, I put something somewhere and then completely forget where I put it.
- I miss appointments or meetings, I often don’t remember the names of persons I’m talking to – you, name it and I’ve forgotten it.
I’ve lived with my difficulties for more than 38 years and I’ve learned to think of myself as a warrior. With that mind-set, I’ve come to the following realizations:
- IT IS IN MY BEST INTERESTS TO CONFRONT RATHER THAN AVOID MY PROBLEMS.
- I THINK OF MYSELF AS HAVING A BATTLE WITH THE DEFICITS CREATED BY MY INJURY, DISABILITY OR ILLNESS.
- AS LONG AS I REMAIN IGNORANT OF THE STATUS AND COMPAT CAPABILITY OF MY ENEMY OR PROBLEM, I WILL BE UNABLE TO AVOID OR REDUCE MY OWN SUFFEERING.
REACTIONS TO DIFFICULTIES:
As 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 all my problems. When I no longer have to fear what might happen to me, I can better prepare myself for the options or the Success Strategies that need to be made.
Another lesson and life change for me has been to have goals. Those goals must be realistic and attainable. I also need to have an ultimate goal or dream for my future and recognize my difficulties in the here and now. As I make new commitments to myself, it is important for me to make an effort to create the gradual changes that will lead me to my ultimate goal.
When bringing about genuine change, making a sustained effort is important. 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 from all of my hard work.
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 to accept the things that I absolutely cannot do before I will allowmyself to learn the skills necessary to do what I want to do.
- I must remember that every day and every task is different.
- Just because I’m able to do something today, at a particular time, doesn’t mean that I’ll be able to repeat the process on another day, or at another time.
I developed a guide for survivors of injury/disability/illness and for rehabilitation professionals. The guide is called, Acceptance Groups for Survivors, A Guide for Facilitators. It is written in a structured group format that is designed to help people accept themselves and their new life circumstances. It can also be used as a person’s personal workbook.
After earning more credentials and wanting to change the color of the Guide’s cover, I decided to publish the book again. It is available on Amazon.
OBJECTIVES OF THE GROUPS:
- 1. To grasp the concept of acceptance as a three-step process: Recognizing problems, admitting deficits and accepting the reality of the present moment.
- To become invested in one’s own recovery.
- To build an understanding of the need for “Healthy Interdependence”.
- To explore feelings accompanying disability.
- To understand that personal worth is not determined by ability to function.
- To deal with loss and then be able to learn how to mourn and let go of the grievances.
- To become aware of personal strengths and weaknesses.
- To build a solid framework of realistic goals.
- To learn problem solving skills and then incorporate them into my life.
THE MEETINGS:
Since all people learn through repetition, each group meeting begins and ends in the same way. The group leader reads this opening statement & the rules for group behavior:
Recovery does not mean that you wake up one day and you’re fine. It does not mean that your memory becomes intact. It does not mean that you don’t get confused and it certainly doesn’t mean that you regain the life you had prior to the injury/disability/illness.
Recovery to a person with an injury/disability/illness is making progress. Making progress is accepting your deficits, learning success strategies to help you with those deficits and learning to love and value yourself.
The Guide is comprised of 24 sessions. Before each session are group objectives. There are five questions asked in each meeting. At the end of each group, all participants either make a positive self-statement or identify a positive change they have make, that is a result of their injury/disability/illness.
IS IT WORTH THE STRUGGLE? ABSOLUTELTY, YES!
I accept myself with all of my limitations. I do the best I can with what I’ve got and I know that recovery is not only making progress, it is one step. Making progress is simple, but 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. The simple act of making a steady effort is making progress. I have learned that this has got to be enough for me, on a daily basis.
Every morning, I get a new opportunity to be better than I was yesterday. I put a lot of small accomplishments together and find that I’ve realized a huge goal. My ability to reintegrate into the mainstream is a product of many small accomplishments tied together in a neat bundle. I work very hard every day, to live as well as I can.
At the beginning of my talk 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 that I’ve experienced. That insight alone doesn’t eliminate of minimize my problems. Instead, it reduces the suffering that comes from struggling with the unfortunate facts of my life.
I wish things were different, but they are not. All I can do is the best that I can and allow myself to enjoy and be proud of the progress I make on a daily basis. This is also all I can expect of others.
By Nancy Bauser, ACSW, BCETS, BCDT
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Nancy Bauser is a Trauma Recovery Expert and a Certified Disability Life Coach (CPC). She is Board Certified Expert in Traumatic Stress (BCETS) and holds Board Certification in Disability Trauma (BCDT). During the past many years, she touched and transformed many lives – read some of her Client Testimonials – Click HERE! Explore her latest program to help Recover After Trauma – Click HERE! (opens in new tab)