Social Disability: One Person's Recovery Journey
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About this ebook
This is the story of the recovery struggle from brain injury by a rehabilitation specialist whose professional experience includes working in brain injury recovery programs. He faces significant new learning about the nature of these programs from the patient's perspective while experiencing good recovery of cognitive skills. However, upon attempting to return to professional employment he finds that the experience of having had a brain injury is disabling itself in a social sense.
No one with knowledge of the diagnosis is willing to give him the opportunity to demonstrate that he has regained the ability to work at a high level. This is a cautionary tale about functional recovery and stigmatization where legal changes have little impact in an area of disability which has been described as being “of epidemic proportions”
Joseph Mulhern
Joseph R. Mulhern Ed.D has several decades experience as a rehabilitation counselor, case manager and forensic consultant including work with brain injury survivors in recovery and vocational rehabilitation programs and has taught rehabilitation counseling in the California State University system. He has a Bachelor’s degree in social work and a Master’s degree in Counseling psychology from Temple University and a doctorate in human development from New York University. Dr. Mulhern has published articles in rehabilitation counseling journals and legal periodicals.
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Social Disability - Joseph Mulhern
SOCIAL DISABILITY
One Person's Recovery Journey
Joseph R. Mulhern
Copyright © 2013 Joseph R. Mulhern
Cover design by ISSC
Book design by ISSC
All rights reserved.
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.
First Published April 2013
Smashwords Edition
Dedication
This book would not have been possible without the love and technical support of my children, Yvonne and Sean.
Special thanks to Marcia without whose caring and medical rehabilitation knowledge I would have experienced total occupational disability.
Acknowledgement must be made of the best supervisor a novice rehabilitation counselor could have had; Roland Sturm of the former New York State Office of Vocational Rehabilitation. His grasp of the essentials of the rehabilitation process and insistence on their implementation helped propel me into a career as a counselor, supervisor, educator and forensic consultant.
I've presented a fictionalized serial account of my return to work experience following brain injury.
Table of Contents
Introduction
Chapter 1
The Beginning
Early Rehabilitation Efforts
Chapter 2
The End of the Beginning
God's Program
The New Me
Limitations
Chapter 3
The Beginning of the End
Manipulating the system
Chapter 4
The Quest
Making the transition
Chapter 5
New Beginnings
Adjustment
Disappointment
Chapter 6
The Realization
The Truth Dawns
Chapter 7
Planning
The Best Fit
Taking the Measure
Finding My Way
Chapter 8
The Second Transition
Leave Taking
Disruption
Chapter 9
Positive Demeanor
Success
Special Clients
Chapter 10
Clouds
Going Downhill
Self-Assessment
Chapter 11
Wandering
Self-Analysis
Chapter 12
Another Chance
The New Supervisor
The Competition
Chapter 13
More Wandering
Targeting
An Opportunity
Realization
Chapter 14
More New Beginnings
Silver State
Confusion
Another Attempt
Quantum Leap
Chapter 15
The Gauntlet
New Start
Methods of Evaluation
Fatal Move
Chapter 16
The Slide
Act of God
No Break
Methods of Evaluation
Hope Fades
Chapter 17
Free at Last
The Tome
Shock
Chapter 18
Search for Answers
Conclusion
Afterward
References
About the Author
Introduction
This book is the story of my journey to recovery from a traumatic brain injury sustained during an assault. Brain injuries are classified by specialists as mild, moderate or, severe. Mine was initially classified as severe four days after hospital admission, and then it was reclassified as moderate after eleven days. To give some perspective on those categories: Mild brain injury is not transitory and can result in the loss of significant cognitive functions, such as the ability to successfully supervise others or perform higher-level math functions. That level of injury may require a research scientist to return to work as a junior high school science teacher. Moderate head injuries usually have more serious effects, such as socially inappropriate behavior. People who suffer injuries classified as severe usually require institutional placement.
The foregoing are modal
outcomes (i.e., examples of what usually happens to the majority in each group). There are exceptions, which specialists refer to as anomalous outcomes.
This book details that type of recovery and its aftermath, from critical care to professional employment. It was a bumpy road with many unexpected challenges.
Another purpose of this book is to highlight the rehabilitation methods that were most effective in helping me make a comeback from the physical, mental, and emotional effects of the trauma.
My goal almost from the time of injury, or at least when I regained conscious self-awareness, was to be successfully reemployed. Since those who are in training or in practice as rehabilitation counselors also have that goal for their clients, it is my belief that the book will be particularly pertinent to that audience.
The fact that I was a rehabilitation counselor with significant experience in the area of head injury rehabilitation seemed to complicate planning. A medical social worker in the acute care setting said, it’s difficult for us to work with you because you’re one of us.
Chapter 1
The Beginning
March 8, 1996
My initial reaction to waking in a strange place was depersonalized confusion.
I was in an institution of some type, surrounded by faded pea-green walls. My wrists were bound to keep me from venturing from the bed. However, that did not seem to bother me. I knew that I had a death defying experience but was unsure about how or what. I only knew I had been deprived of a near-death experience. There was no tunnel, white light, or encounters with those who had gone before.
Gradually, I became aware of a treatment routine. I received numerous daily injections, without explanation. Meals were served in a cafeteria setting with other patients. Most were in wheelchairs. Volunteers came by for occasional bedside visits to provide company.
Although I did not yet realize it, I had been savagely beaten and left to die on a darkened street several days before in Los Angeles, where I resided and worked as a vocational rehabilitation counselor. Luckily for me, someone had spotted me and called an ambulance. I would not remember what had occurred during that life-altering night. Because my assailants took my wallet and then emptied my checking account, I can only surmise that I was a victim of yet another Los Angeles mugging.
After several days of consistent consciousness, I learned that, as a result of the beating, I had a hearing loss in my left ear (testing later confirmed that my hearing was about 35 percent of normal). Also disturbing was the realization that I was without my personal possessions, including my wallet, car keys, and cell phone. I couldn’t call anyone without making a request.
When I felt stronger and started walking around the ward, I found that the glass doors were locked. I felt like a prisoner living in a restricted area.
The first positive experience in the hospital was a visit from Marcy, a longtime friend and colleague. She explained that I had been found semiconscious on a sidewalk by a retired LAPD officer who had made a 911 call. I had been taken to the nearest hospital, which happened to be a world-class medical center with a trauma unit. Since my vital signs were dropping, they’d first worked to get me medically stable, and then I had been admitted to the critical care unit. Marcy went on to explain that I had remained in critical care for eight days and that, during that time, she’d met with my twenty-two-year-old daughter and nineteen-year-old son.
My daughter, Yvonne, had arrived with her mother, whom I had divorced nearly a decade earlier. Months later, Yvonne told me that I had greeted her mother right away when they entered the hospital room but that I’d had no recollection of my own daughter—at least, not on that first day. I had to take her word for this, as I had no recall of the incident.
My friend Marcy prevailed on Yvonne to assign my power of attorney to her, in effect making her my conservator and case manager. Since my daughter was a full-time college student in Texas, she was glad Marcy was there and willing to use her rehabilitation experience to help. In the bedside meeting, Marcy explained that once she had power of attorney, she worked to get me admitted to a private acute care rehabilitation hospital, which is where I regained consciousness. I was grateful for her help, which would include travel, evaluating suitable programs, meetings with treatment personnel, and multiple visits.
Sometime during the first several days in acute care, I remember being wheeled on a gurney for an MRI or a CAT scan while experiencing a headache that was so severe I thought the information would have to be obtained by autopsy. It was difficult to imagine how I could survive that level of pain. I don’t recall being given pain medication at that time. Later I was moved into more structured rehabilitation programming, which included physical and occupational therapy, speech therapy, and an attempt at a neuropsychological evaluation.
I later learned that examination was not feasible for me at the time due to lack of cognitive integration. After several days—or perhaps a week—I was able to walk short distances, and I obtained more information about my status. It was because I was in a locked unit that the large glass doors at the end of the hall didn’t open.
In essence, one blow to the head transformed me from being a fairly well-compensated, independent professional to a supervised inpatient in a closed unit. The subjective experience was that I went out for a newspaper late one evening and then woke up eight days later in a hospital, except that I had no awareness of that passage of time. For me it could have been an overnight experience, but I had an eight-day period of amnesia.
Although I was in several treatment modalities,
I think the most effective therapeutic factor was the passage of time. Mental status can be greatly different several days after injury compared to several weeks. The physical healing process is critical. At the same time, I think that participating in structured activities, even though I experienced some as stultifying, was probably more restorative than just lying around in bed with casual reading or television. I found that greater progress would be achieved later in recovery. At least twice I had the mental image of a large transparent jigsaw puzzle that consisted of perhaps five or six pieces. One or two pieces were missing, and then one of the missing pieces would slip into place. I think the image was a symbolic representation of memory return, which happened that way for me: return or availability of information in large chunks. The amnesia was a memory loss for events.
Early Rehabilitation Efforts
For most hospital patients, some interaction with a medical social worker is inevitable. Their job is to see that you get necessary services while in the hospital and to insure that discharge is handled in a timely and appropriate manner. In my case, due to the nature and severity of the injury, discharge would typically be to another treatment program in a less restrictive setting. However, my social worker seemed somewhat nonplussed by the fact that I was rehabilitation professional with a background that included working with clients with brain injury. She once told me, It’s difficult for us to work with you, because you’re one of us.
Most of the work with her focused on reconstructing my work history to provide a better understanding of what I did for a living beyond the job titles which were rehabilitation counselor, case manager and forensic consultant. While the central factors in each job seemed easy to grasp, for me, I had a difficult time imparting that knowledge to her. The rehabilitation counselor is concerned with developing a profile of the individuals’ residual vocational strengths after injury and then developing and implementing a plan for a successful return to work (in collaboration with the client).
A vocational forensic consultant is responsible for developing a profile of the persons’ vocational skills that are no longer available due to injury or death and then costing out that economic loss over the remaining work life. The basic concepts of the work seemed straightforward, or so I thought. After several discussions, she asked for contact information in order to speak to some of my past employers, which she explained was not to certify my veracity, but rather to gain a better understanding of what I did. If I had known at the time that I would be sacrificing considerable future work possibilities by providing that information, informing my professional network of the type of injury sustained, I would certainly have withheld it. How and why that could happen is the subject of this book. It is a process that seemed to operate independently of actual progress in recovery from the disability.
Occupational therapy was one of the classes that I had on a daily basis. It consisted of using household and/or basic work tasks for cognitive training. I was given written instructions on how to bake a cake. When the result was less than successful, the method I used was reviewed and the therapist stated that one missed or botched procedure represented a ‘deficit." I objected, stating that I did not know how to bake a cake before injury, and I still didn’t, so the net loss was zero. Of course the idea was to evaluate my ability to follow sequential instructions as well as the actual outcome. I am sure there were other classes in OT, where I acquitted myself adequately, but that are the one that stands out.
I remember physical therapy as a robust and enjoyable experience. Perhaps that was because the therapist was a younger, athletic male who was friendly and actively involved with me I enjoyed using the indoor pool at the hospital with the therapist encouraging me to do additional laps. Another workout found us at a small outdoor track. When I tried to run a lap, which I would estimate was no more than 1/8 of a mile, I felt as though I weighed three hundred pounds, instead of my usual one fifty or so. The therapist explained that was a result of disuse, essentially lack of exercise during the time I spent in bed. I wondered how long it would take to regain the physical conditioning that previously allowed me to run 5k’s in the low twenty minutes and to do mountain runs with ease.
My son came to visit early in my stay in the acute care facility. I remember him trying to make light of the situation in his jocular manner. I asked John to bring his car around to a rear entrance of the hospital so I could get out without being discharged. At the time I was about two weeks post injury. Fortunately, in hindsight, he didn’t sign on to that plan. That request seems to reflect the frustration I felt being there. This frustration was produced by the dull routine therapy rounds, and the impersonal treatment setting--with the exception of physical therapy.
During my forensic career I worked with a neuropsychologist who also worked in that rehabilitation hospital. We worked conjointly with clients who had sustained neurological and physical injuries. My contribution was a vocational and economic assessment and the psychologist would provide information on medical and psychological factors. I had access to his reports and often built my report, in part, on his findings. As I became familiar with his work, I recommended him to a number of attorneys when I had cases where there was a need for a neuropsychological evaluation. I also invited him to present in at least one of the workshops I put on for attorneys on how to use and what to expect from expert witnesses. It seemed to be a mutually beneficial relationship in a business sense.
He came to visit during the first week of my stay in the facility. I described my subjective experience of mental loss as minimal and told him I had difficulty determining what actual limitations resulted from the injury. His reply was, That’s classic.
I don’t remember the balance of our conversation which probably means the visit was brief. My psychologist colleague was also the developer of an innovative, computer based system of cognitive rehabilitation. The system was well known in rehabilitation circles and I had previously worked with some of his graduates.
However, I wasn't offered an opportunity to work that program, and no reason was given. I don't know if a referral was ever considered. Later when I had completed inpatient rehabilitation (when the insurance money ran out) I thought of visiting his office, to show off my level of mental integration and ask why I was not given an opportunity for cognitive rehabilitation on a system that was so well known. But that meeting never took place.
My primary concerns while in acute care were: how long could I handle being there, and where I would go next? At that point, after several frustrating weeks in the program, I decided to contact Marcy and asked her to locate a more active program in a less restrictive environment. I really didn't like the routine impersonal atmosphere with no apparent specific goals as well as the encounter with the overly intrusive social worker. Marcy picked up on my concerns and said she would look for a suitable program with a more individualized emphasis in treatment. It was good to feel I had her support.
Since this book is written for a niche
audience of rehabilitation specialists; those in training and rehabilitation educators, the chapter summaries are primarily in the nature of professional implications. I am speaking on the basis of my experience, as a professional as well as someone with experience in recovery.
I don't believe it is generally recognized that the hospitalized traumatic brain injury patient often experiences dual traumas: the effects of the injury itself followed by entry into a depersonalizing, sometimes austere institution. Certainly rehabilitation counselors who typically do not get involved until medical stability is achieved cannot be expected to be aware of that dimension, yet the effects of that induction can be ongoing. One has only to hear the hospital stories from those with experience in recovery to realize important needs have not been addressed. The only feedback I received concerning my condition and prognosis was overhearing the physiatrist say to the ward clerk, I think he will recover without significant deficit.
Chapter 2
The End of the Beginning
Marcy called back several days later, and told me she visited a community based head injury recovery program in the Bay area which she believed would provide me support and stimulation and more individual attention. Within several days, I met with a representative of the program who traveled to the rehabilitation hospital to interview me. Although I don’t recall many of the details, the meeting must have gone well because I soon found myself on a flight to Oakland to begin treatment at that facility. I was able to make the flight myself though I was escorted to the airport entry gate by the physical therapist. The short flight to the bay area reminded me of many trips I had taken over the same route as a consultant when I was independent with a good income. It took a strong effort to shift my focus to the present and what lay ahead. I was met at the airport by the same representative who interviewed me. The treatment center was located in a large, turn of the century frame house in the East Bay on a leafy street of similar homes. To all appearances, it was just another well maintained residence rather