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 was 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."

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 than a comprehensive treatment center for neurologically disabled adults.

The re-entry program provided community contact which was designed to complement the treatment plan. During my time there we went on sightseeing trips in the Bay area, out to lunch several times and other recreational activities such as swimming and bowling. However, residents did not go out unsupervised without approval of the treatment team. The core program consisted of classes on neurological recovery, group work with a physical therapist, individual sessions with a speech therapist and visits to a psychiatrist and physiatrist (doctor of rehabilitation medicine) as needed. In addition, individual sessions with a neuropsychologist were available.

There was numerous support staff to provide personal assistance including supervision of patients who needed assistance in self-care or to relearn life skills such as cooking, shopping or work on personal appearance. Assistance in any area that would help a patient toward increased independence was available. The life skills staff, on duty twenty four seven, were available to get you a Tylenol in the middle of the night if you woke up with a severe headache, which happened to me several times.

For myself, the primary difference between the hospital and the community based treatment setting was an attitude of caring and individualized treatment, as opposed to being poked and prodded by medical staff and shuttled from one activity or class to another. At the same time, I realized that my level of need for personal care had decreased. I began the community based re-entry program one month after injury. At that time I was independent in self care and I did not require medication. The community based program, probably because it was individualized, seemed easier to accept and more meaningful. I would frequently swap 'hospital stories.' with the others. Most of the residents spoke of their hospital experience in negative terms. The community based setting represented neurological progress as well as greater personal freedom.