Tom Tatlock Story
“Mild” Traumatic Brain Injury, A Personal Journey
The purpose of this essay is to help you and others --- individuals who have sustained a Traumatic Brain Injury (TBI), their families, their friends, professionals, etc. --- to understand and appreciate some of the challenges of TBI. This is just a personal story of one person with a TBI, me. Even though I am writing this, it is not just my story. When one individual has a TBI, the entire family experiences the effects of the TBI. Without the support, love and encouragement of Andrea, my wife, I would not be able to do this. It is my hope that you can learn and benefit from the description of my experiences that enables me to write this in a personal, honest and self-revealing way. Usually I am a private person, so this both feels and is unnatural and unfamiliar.
My experience with Traumatic Brain Injury (TBI) began on May 19,1999. Our car was all packed because we were going to drive to Vermont to the college graduation of one of our sons. I decided to do one more chore, change a storm window, and while doing so, I fell off a ladder. The back of my head landed on a concrete sidewalk. For a brief time I lost consciousness. I came inside, washed the blood off, wrapped a towel around my head, and said, “Let’s go to Vermont.” Andrea was wiser and said, “Let’s go to the emergency room.” This was just the first of many examples of her wisdom in relation to my TBI. I did not always welcome or initially appreciate “her wisdom.”
I was evaluated in a hospital emergency department; was seen by the emergency room physician; had an MRI (Magnetic Resonance Imaging) study and a CAT scan (Computerized Axial Tomography) study; was seen by a neurosurgeon; and was hospitalized overnight. A repeat CAT scan showed no changes, and I was discharged. They said that I could fly to Vermont, and so I did.
Wandering in the Wilderness
After returning to Appleton, I had another CAT scan that was read as normal. At that follow up appointment I was told that “everything is fine”; “there wouldn’t be any problems”; and “you’ll be back to my normal self within a few weeks”. I am still not back to my pre-TBI self.
At that time I was still experiencing a significant amount of pain and an extreme amount of fatigue. All I wanted to do was to lay in bed and sleep. For the next several weeks I was only semi-functional. The severe headaches felt like a steel rod was being driven through my right eye and out through the back of my head. I felt totally exhausted and ached all over. Looking back on that period of time, I am amazed at the amount of pain and fatigue that I tolerated and endured. I kept expecting to “get better.” I did improve somewhat.
On June 14, 1999 I returned to work part-time. Some of the reasons included: my overdeveloped sense of responsibility to others, my sense of responsibility for my patients and their wellbeing, and my sense of the burden that I was placing on my colleagues who were providing care to my patients as well as their own. Plus, everybody told me that things would continue to get better. When I returned to work it was clear that I was a long way from my former self. I made significant changes in my work schedule: limiting the number of patients seen; restricting the number of hours at work; building “rest periods” between patients; not returning to the responsibilities of “being on-call” or seeing patients in the hospital; and eliminating almost all non-work activities in order to conserve energy and strength.
I felt that I should just persist and “try harder.” After all I had a lot of experiences ---- during medical school, internship, residency, and in the private practice of psychiatry --- where hard work and persistence paid off. However, that was not happening now. Instead of getting better, I was slowly losing ground and becoming more worn down. Instead of being able to work for longer hours I was more tired and exhausted after the same amount of work. Everything seemed to take more effort. It was “like I was bicycling into an invisible headwind” --- one that I could feel but one that was invisible to others. People would say, “You sound so much better.” But they had no appreciation of how much planning and how much effort it took for me to prepare to “be in public” --- the rest periods and naps before and after the events; the physical pain from the sensory stimulation; the effort to participate in conversations; etc. People kept telling me, “You look so much better” --- I had started a regular scheduled physical fitness program in the hope that I could increase my physical stamina and endurance, and I had lost weight and was more fit. On the appearance level their observations were correct. I was trying harder. But, I was not getting any better.
I sought a second-opinion consultation from a local neurologist. Nothing was improving. The headaches, the physical pain, the sensitivity to auditory and visual stimuli, and especially the fatigue continued. He told me, and his notes stated, “The patient’s clinical is very consistent with the head trauma he suffered. I am not surprised that the fatigue remains. I suspect that this will gradually abate but most likely we are looking at months before he is back to his pre-morbid state. He did not see any need for more studies or treatment. “
Throughout the fall months I did not get any better. In fact I was becoming progressively more tired and more fatigued as well as experiencing more pain. Looking back on it: it was like I was continuing to overdraw my energy account --- intellectual energy, physical energy, and emotional energy. The interest charged on those overdrafts was not at the “bank rate” but at the very high rates of payday loan shops or expensive credit card debt. I knew that I could not go on. Andrea and I talked about the situation. Then we set a meeting with our family physician. Dr. Chuck, my primary care physician, was extremely helpful and provided very wise guidance. He clearly knew not only me, but also our family and our community. He had been our doctor for more than 25 years. His advice and counsel was invaluable. He said I had to quit practicing, probably forever. Andrea was a tremendous support during this time. She could have been an even better support if I had been more open about the extent of the difficulties. I was, and probably still am, better at giving help than at asking for help. Many of our close friends were also very helpful.
Loss and Grief
When I had to stop working I experienced a severe sense of loss and grief. We had lived in Appleton, Wisconsin, for more than 21 years. In many ways being a psychiatrist was an essential part of my identity: providing a sense of self-worth and personal identity and a means for helping others and making a contribution. For me it was a vocation, not just a profession or a job. I enjoyed the challenges and satisfactions of an active and diverse practice. I had spent more than ½ of my life in medicine (in medical school, internship, residency and practice.) Only two previous experiences, when my mother died and when our daughter died, had caused me more grief and sorrow. It was very hard to explain this to others. Many persons thought that I should be happy to be retired; some even expressed envy. I did not want to define myself as “disabled” and finally decided on the word “limited.”
A Broken Leg and an Injured Brain
On February 5, 2000, I fell and broke my left fibula. I had spent the day cleaning out my office so that another psychiatrist could work there. Looking back it is clear that my TBI and my fatigue were important contributing factors to this accident. When I become overly tired or fatigued, my balance becomes significantly impaired, as does my judgment, self-awareness and self-control. After the fall and the fracture I carried down 3 more loads of books and papers before finally acknowledging the extent of the pain and injury. I drove home; Andrea and I went to the emergency room, again; this time I came out on crutches and with a walking cast on my left leg. Now it seemed that everyone “wanted to be helpful“ and that everyone “understood.” Compared to the major problems that I had from my TBI, the broken leg was nothing. But, it was visible, “real” and understandable. It was ironic that the smaller inconvenient injury generated such a much greater response. Plus, the effects of the broken leg were transitory and time-limited; the effects and limitations from the TBI are still ongoing, even now.
The Cork that Didn’t Float Up
After I stopped working I expected that things would get better. They did not. During this time I struggled with self-doubt and guilt. I worried that maybe I wasn’t getting better because I wasn’t trying hard enough. There was a tension between the observations of others and my own experience: “You look so much better” and “You sound so much better” versus everything is so much more difficult and exhausting. Then there was the skepticism and non-responsiveness of my disability insurance carrier. They clearly doubted the diagnosis and implied that I was just malingering. Being in the middle of all this and having only a portion of my former intellectual and emotional resources, I found it hard to keep everything in proper perspective. It was hard to evaluate the different agendas, overt and hidden, of some of the others. I spent (unwisely in retrospect) a lot of effort trying to educate others about TBI and its effects on me.
Not being able to work was not a vacation. Not being able to work was not like deciding to retire. Work provided: a) structure and order to the day; b) a place for social connection and interaction; c) a sense of meaning, purpose and identity; d) a way to contribute; e) a place to use and develop skills and talents; and, f) a source of income. One of the most difficult challenges for me was “How do you structure your day?” or “How do you fill your time?” This was more difficult since the effects of my TBI limited and restricted my former skills and abilities. I could not read for very long. Watching TV or even listening to music led to increased symptoms from sensory overload. Even enjoyable social conversation quickly became overwhelming.
Sources of Support and of Frustration
Andrea continued to be very supportive. She was more understanding when I was able to be more open and direct in describing how I felt. If I was exhausted, suffering from ”brain brownout”, or hypersensitive to noise; it was very important that I tell her at the time. I said that “I’m interested but I’m so tired that I can’t pay attention or follow the conversation” or “It is not you. It is just that the sound of you eating Cheerios, or chewing carrots, that is driving me crazy.” But in the beginning, and at times when I was too tired, it was hard for me to recognize what was going on, much less put it into words.
During this time of confusion, uncertainty and self-doubt I found that reading and learning more about TBI, especially “mild” TBI became a source of support. Through reading I increased my knowledge and understanding of what was going on. This information helped me to realize that I was not alone; that others had similar symptoms; and that there were strategies and techniques that could help.
After getting my cast off I kept trying to find sources of adequate assessment and treatment for my TBI. On April 18, 2000, I saw a local specialist in rehabilitation medicine (a board-certified physiatrist) because of my persistent symptoms of fatigability and difficulties with high-level cognitive function. On May 22, 2000, I saw the same person, but he had nothing new to offer. He said, and his notes indicate, “I have no specific interventions to offer other than the passage of time. He should be physically and mentally active as he is doing.”
Between those 2 visits I saw a psychologist who was/is associated with an inpatient neuro-rehabilitation program. He was not a neuro-psychologist but had an extensive background in rehabilitation. His impression was: “1) cognitive decline post-TBI; 2) chronic fatigue syndrome; and 3) medical problems including post-traumatic brain injury per physician reports.” One of his recommendations was to “read a book called Managing Pain Before It Manages YOU, a book that maintains a theme of getting more active while maintaining a balance in one’s life rather than always giving into the pain.” To increase my activity level he recommended, and I quote from his notes, “I suggested to him that he choose some particular activity that he wants to increase. He should chart that activity level for 3 consecutive days. Then on the 4th day do 80% of that level. On the 5th day 90%, on the 6th day 100%, on the 7th day 110%, then 120%, etc.”
I have to admit that I was very angry and frustrated by this advice. If the advice that simply trying harder and trying to overcome the pain had worked, I would never have needed to seek help from him. I had expected more--- that he would have known more and thus been more helpful to me in creating a treatment plan that would lead to improvement.
Finally Some Help
On May 16 and 17, 2000, (almost 1 year after my fall on 5/19/99) Andrea and I went to the Brain Injury Association of Wisconsin state meeting in Stevens Point. We heard 2 of the presenters from the Mayo Clinic, Dr. M and Dr. B. Andrea approached Dr. M and asked if it would be possible for me to be seen at the Mayo Clinic. He helped to make those arrangements. In July 2000, Andrea and I made our first trip of many to the Mayo Clinic. I was feeling desperate and overwhelmed. I was trying as hard as I could, and nothing was getting better. The outpatient treatment team worked together in collaborative and coordinated way. Each person on the treatment team (Dr. D, a neurologist/psychiatrist; Dr. S, a neuropsychologist; and Sue, a cognitive therapist) had an area of expertise and experience. Dr. D was in charge of medical evaluation, further tests, medications, and patient education. Knowing that he had seen other persons like me --- individuals whose work demanded the efficient use of higher cognitive, the abilities to abstract and integrate, etc. and who then suffered significant fatigue and impairment after a “mild” or moderate TBI --- was extremely helpful to me. Dr. S did the neuropsychological evaluation and testing. Working together in psychotherapy we explored, and exposed, some of my expectations which were now unrealistic in my post-TBI state. This was very helpful in decreasing the secondary problems of unnecessary guilt, shame and feelings of inadequacy.
Sue had the hardest job. Her task was to help me to learn strategies so that I could deal more effectively with this TBI. First, we had to do something much more difficult ----to stop my automatic response of just doing more and trying harder. Her first assignment was one that I couldn’t comprehend or complete. She said, “Stop when you hurt. Stop when you are tired. Stop when you are in pain.” I did not have those skills or that awareness. [They weren’t taught in medical school and I certainly didn’t learn them in practice.] Finally we decided that I should just stop after 90 minutes and rest for 30 minutes. That was hard. After approximately 15 minutes I would begin to be aware of the extent and intensity of my pain. Almost simultaneously I felt the need to get up and do something so that I wouldn’t turn into a lazy slug. The next assignment was harder: “Put your mind at rest. Don’t thing about anything. Just meditate.” This was impossible at first. Now I can usually do it if I’m not too tired, if I’m not too involved or too worried, or if I’m not writing. One early result was that Andrea and I took turns driving. The benefits of regular rest, quiet time and meditation were and are quite clear; but I still have trouble doing it. They help prevent ‘brain brownout,” increase judgment and self- control, and improve my overall quality of life.
I remember Dr. S saying that I didn’t need to try harder because they would help me “try smarter.” What a relief. These people had seen other people like me. They had experience. They had plans. No longer did I feel so alone, so isolated, and so much adrift. At first our trips had a desperate and driven quality that came in part from my “false hopes and unrealistic expectations” --- they would help me get back to my old self; I could resume my practice; I would be just like I used to be; and I would be cured. That didn’t happen.
We became regular commuters driving the 4 ½ to 5-hour trip back and forth between Appleton, Wisconsin, and Rochester, Minnesota. At first I was not very wise. I insisted on doing all the driving. This would leave me exhausted for several days. When my pain or headaches increased, I just turned on the radio to provide a distraction, which of course made my headaches worse. Finally, we learned to share with each of us driving for 90 minutes. This was a much better solution, as well as safer. Andrea was a good driver, but I was a poor passenger. After all I had grown up in a family where the husband/father drove and the wife/mother rode. It was crucial to break old automatic patterns of thinking and acting so that a new partnership could be created --- one that responded to the new post-TBI reality. Andrea and I are still continuing to build a deeper, more open and honest relationship because of the TBI. Sometimes it has been difficult, even quite difficult, but it is wonderful and worth the effort.
New Definitions of Success
Over these last 8 years I’ve learned (and relearned, many times) that I can’t measure my present self against my former, pre-TBI self. Now it is crucial and essential that I stop and rest before I become too tired or exhausted. Instead of just doing what needs to be done or as much as I can do, I need to stop sooner so that I can remain more aware of my limitations. If I don’t stop soon enough, my judgment, my self-awareness, my impulse control and my self-control all decline. Then I have a tendency to “go on automatic pilot”. This leads to doing too much, to getting overextended, to getting “off the program.” it takes a lot longer and a lot more effort to get back on track than it does to get off track. There is just a small window of awareness. If I don’t stop within it, I fall into “The Wylie Coyote Syndrome.” Because just like Wylie Coyote in the Road Runner cartoon, I keep going faster and faster, becoming more and more out of control, getting further and further over the edge of the canyon, and then go crashing down — to the canyon floor for him and into exhaustion for me.
Most importantly for me and for really anyone with aftereffects from a TBI, it was and is crucial to persist until one finds the professionals with the appropriate and necessary expertise and experience. I am profoundly grateful to the Mayo Clinic Traumatic Brain Injury Program staff for helping me find a new life of happiness and joy.
Some Strategies and Activities that Helped
Sue taught me how to recognize the new limitations that TBI had imposed on me. Through recognizing and acknowledging this new reality I have gained more control over my life. I have learned (and am continuing to learn) to make wiser and better decisions.
1. Planning and Picking of Priorities: When I can acknowledge my limitations, I can make more realistic and successful decisions.
2. Emotional Shock Absorbers: Together Andrea and I can build our emotional shock absorbers by keeping our senses--- a sense of humor; a sense of gratitude; a sense of caring and mutual respect; a sense of reality (even when difficult); a sense of possibility and hope. At times the ride was rough--- we got bounced around and even broke an axle or two; but we are still on the journey. Even now after 8 years I (we) are continuing to learn: to acknowledge my limits; to anticipate and to plan; to make accommodations and adaptations; and to consistently follow the treatment plan. One of the hardest realities for me to accept was the fact that the day is longer than my ‘functional’ self. Though I’ve avoided this trap, I can understand the appeal of alcohol to “fill the day” and “dull the pain.”
3. Cooking: Andrea says that one of the benefits of my TBI is that, for the last 6 years, I have become the cook, the meal planner and grocery shopper. Cooking has provided many benefits: a) cognitive exercises in planning ahead, organizing, prioritizing, b) a way to contribute to our family; c) a task for each day; d) an opportunity to learn new things; e) a way to express creativity; f) a tangible, visible and eatable outcome--- that tastes good according to Andrea; g) and yet another way to learn my limits. After attempting meals that were too complicated, I have learned to scale back my expectations. (On 2 occasions I cut my fingers severely enough that I had to go to the E R for stitches. Andrea was not at home either time.) I am a slow learner but reality is a persistent teacher.
4. Gardening: From cooking to gardening was a natural progression. First there were herbs outside -- then also inside in the basement during the winter; then there were flowers and more flowers to attract birds, etc. The physical work is a wonderful break from thinking, plus good exercise too.
5. Exercise: Starting in August 1999, I have been working out regularly with a personal trainer doing aerobic and weight training 3 times a week. One of the most problematic difficulties of my TBI is a problem in initiating activities and then following through with them on a consistent basis. So the cost of this is worth it to me. In addition to the benefits of exercise I have made new friends. They are considerate of my sensitivity to noise and loud music. Beginning in January 2005 I started a Yoga class at the local YMCA. This has helped my flexibility, my balance and my sense of humor—as well as entertainer others. Seriously, I wish that I had done this sooner.
6. Volunteer Activities: From the beginning I have found that being involved in volunteer activities to have been critically important. Regularly scheduled activities really helped me with the problem of social isolation. Some of the other benefits include --- an opportunity to contribute to others; a stimulus for thinking and problem solving; a place to use my skills and strengths and to develop new ones; and a source of structure for my time. It seems that I am much more aware of my deficits, mistakes and limitations than the other people are. It is important for me to be able to say “NO” in order to not become overextended on the basis of expectations of others. They are likely to see me at my best and do not really know how much effort I am exerting or what is being taken out of me. Andrea’s organizational skills and gentle guidance have enabled me to make many contributions to others.
Becoming an Advocate and an Educator
The Brain Injury Associations, both the state (BIA-WI and BIA-MN) and at the national level (BIAA), have been very helpful. In addition to the pivotal 2000 annual meeting, both Andrea and I were deeply moved by our participation in the 2005 BIA-WI walk in Milwaukee. Persons of all ages and levels of injury or impairment, their multi-generational families, and many different professionals participated.
My own experiences with “mild/moderate” TBI have motivated me to become a more effective and outspoken advocate for persons and their families affected by TBI. I want to educate others so that the many different forms and manifestations of TBI can be better recognized. My hope is that earlier and more accurate diagnosis and evaluation can lead to better and more effective interventions, which then will lead to better outcomes in the quality of life for both the persons who have sustained a TBI and for their families.
Many people have helped me. I have learned a great deal from talking with others, from reading, from conferences and from formal course work. In 2005 I applied to the graduate program offered by the School of Education and Human Development at George Washington University in Washington, DC. This 5-semester distance-learning program certainly increased my knowledge and expanded my understanding of TBI.
In addition to working with experienced and respected faculty of GWU, I was able to interact with and learn from the other students who came from many different states, professional backgrounds, and clinical settings. After my final course, “Vocational Assessment,” I strongly believe that all persons with TBI who have significant symptoms or limitations, can benefit from vocational assessment. An assessment can even help people who are not able to return to paid work but who need to identify their skills, abilities and areas of possible interest.
This program was a real challenge but also a wonderful experience. I was the only person with a TBI and the only person in my age group. Andrea did not tell me the extent of her doubts concerning the demands of the program and my present limitations until after I finished the program. I earned my graduate certificate in Special Education and Brain Injury in August 2007.
In the future I hope to use my knowledge and experience to educate others about TBI. At present I am serving on 2 advisory boards. All of my experiences have strengthened and reinforced my commitment to advocacy and education.
I am still learning patience, humility and my own limits: “Tom is a slow learner, but reality is a persistent teacher.”