The Patient
“I need to be treated like a person, not like a traumatic brain injury patient. I need to feel that I have something to contribute. When I feel the relationship is the most important element, rather than the homework I do or the progress I make, then I can make progress. I need to feel ‘contained.’”
1. I had an appointment at the San Francisco VA at nine o’clock in the morning. I was given instructions by my neuropsychologist at the Martinez VA about how to go to a VA office in Oakland that would have a bus that would take me there. I got up at six o’clock in the morning to make sure that I would not be late for the bus. I had no trouble getting to the VA building where I was to catch the bus, but my troubles started then. I had been told that I needed to obtain a ticket for the bus that would take me to San Francisco, but when I asked several people where I should go to attain that ticket no one seemed to know. Finally I was told to go to the third floor of the building. But when I got there, once again I was told that the ticket could not be obtained there and I should go to the fourth floor. I was starting to feel frustrated and when the person on the fourth floor also did not have the ticket for me, I became angry and demanded to see the supervisor. Before I knew what had happened, there were five or six people surrounding me, one of them being a guard who was telling me that my behavior was not acceptable and I was to leave the building. At this point I felt completely overwhelmed, enraged, and filled with shame. I went outside and wandered around and finally found the place where the bus left from. The bus driver told me to go back in the building to obtain the ticket. I was totally overwhelmed and angrily told her that I had already tried that and no one knew where I should go. She also was alarmed by my tone of voice and motioned a guard to come over. Finally, the guard seemed to understand the problem and was able to obtain a ticket for me. When I arrived at the San Francisco VA, I was already very exhausted. Luckily, I was able to see the physician quickly and he was very nice and sympathetic with what I had gone through. After the examination he told me to go and get some tests done. I had another problem when I tried to do this, because one of the people told me that I could not have that test done at that time, even though I had the doctor’s prescription. That caused another upset for me and with the people there. So overall it was an extremely difficult situation and I left feeling confused, depressed, and shamed.
2. When I went to my regular weekly appointment with my neuropsychologist, there was a machine in the building that described medications and what they were used for. I wanted to look at that because I was trying to figure out how my medications were affecting me and what each one was for. But there was one medication whose name I couldn’t find, so I asked the secretary at the desk and she said she would look into it. After my appointment, I went up to her to get the information and she said that the medication I wanted to know about was not listed in the medications in the machine. I explained to her that it must be listed, possibly under a different name. She didn’t seem to understand what I was saying and became very impatient with me. When I was persistent, she again called several people to the desk and soon there was also a guard who was called. I was shocked that these people felt that I was going to become dangerously aggressive. All I wanted to know was if it there be another name to the medication. Finally, my neuropsychologist was called. He brought me to his office and I explained the problem to him. He was able to tell the other people, who in fact did find the alternative name of the medication I wanted to know about. But again I left feeling overwhelmed, confused, and very ashamed of myself.
3. The difficulties I first had with my neuropsychologist were around the fact that I felt he only wanted to give me homework and was not interested in who I was as a person nor in what I had to say about my experience. He only wanted to make sure that I did the homework. This made me feel insignificant and resistant to doing the homework. When he was finally able to let go of that goal and to listen to me talk about what was bothering me, I felt more relaxed and eventually could attempt the tasks he wanted me to try. But it was not until he told me that he was really interested in what I had to offer and would like to have me work on a poster with him in which I would talk about my experience of TBI, that I really felt trust that he valued me and what I had to say.
4. During the first period of treatment, in relationships with both friends and practitioners, the patient had many experiences of being misunderstood and therefore quickly accelerating to a state of catastrophizing and aggression. For example, the experience with his neuropsychologist was at first quite difficult for him. The neuropsychologist attempted to help the patient specifically with cognitive issues. But the patient was unable to cooperate, because he did not feel that he was being “seen” but rather that he was being treated like an “object”. The neuropsychologist eventually called me, communicating that he was having a very difficult time with the patient and asking for a consultation. In the consultation, after listening to his complaints about the patient, I told him that if he could establish a relationship with the patient in which the patient felt that he was really listening to him and was more concerned about him than about the tasks the neuropsychologist assigned to him, the patient would be more cooperative. When I returned from a break after speaking with the neuropsychologist, the first thing the patient said to me was, “What did you say to Dr. M.? He’s like a different person now.” That treatment has been proceeding more smoothly.
5. The most difficult aspect of my reentry into the world was that I was told that there was nothing more that could be done for me — that I had “done a real job on myself” and that’s what I would have to live with. No one explained to me exactly what it meant to have a traumatic brain injury or what parts of my brain exactly had been injured. There were no referrals to physical therapists, psychologists etc. I felt like I was damaged goods and no one wanted anything to do with me. That was a period of deep depression.
6. Time is a very big issue — both because of the memory difficulties so I never knew exactly what day of the week it was and had to cross off the days on the calendar — but also the understanding that it was going to take a long time but that some kind of a recovery would be possible very gradually. I felt there was very little understanding about the time that I needed to adjust and to heal.
We feel that acquiring “psychoanalytic” skills — for example, listening to the patient without preconceptions, and reflecting the patient’s experiences — would enhance the rehabilitative efforts of TBI practitioners and minimize the misunderstandings that lead to a belief that TBI patients are dangerously aggressive and willfully uncooperative.
