Ken, Survivor and On Track Student
I experienced a brain aneurysm in my right frontal lobe while at home. I called the fire department which transported me to a hospital not far from my home. I was examined there and the hospital made the decision to transport me to another hospital where brain surgery could be performed.
While in that hospital, I had surgery for a bleeding brain aneurysm; during the surgery I also suffered a stroke. I was apprehensively conscious during surgery. I asked for complete anesthesia during the surgery; however, the surgeon told me he had to see my reactions during the surgery and therefore could not give me complete anesthesia. With anesthesia, the surgeon would not be able to tell if I was passing into the next life or how I was responding to the surgery. I decided then that I would have to condition my thinking to cope with the anxiety of someone boring holes in my cranium and digging around inside my head.
My surgeon induced unconsciousness for about ten days after surgery for medical reasons. I was quite docile after returning to consciousness because I was fairly unaware of the world around me. As I became more aware of the world around me, I became very frustrated with my circumstances and, because I could get no clear answers as to how long I was likely to remain in my half-way state, I had difficulty accepting direction from medical staff as well as from my wife, who later became my principal care giver. The smallest annoyances of life would "set me off" with anger, impatience, frustration, feeling sorry for myself and wondering if what I had previously known as a rather pleasant world had changed to one being basically unpleasant. I believe I unconsciously knew better, but I was dealing with an intense sense of frustration and anger; when disagreeable or adverse circumstances arose, my "short fuse" temper caused me to be quick to unpleasantness or anger. I had changed from a patient and understanding person to someone having the behavior of a borderline ogre. Fortunately, I think I have reverted to being quite patient and understanding with others; however, it took at least four years to get there.
After staying in the hospital for four weeks, I was transferred to a facility which closely supervises patients recovering from brain injury. I participated in minimal cognitive exercises at this facility since my memory and cognition were very poor. This was a very frightening experience since I was then much more aware of my limitations than I was while in the hospital. After 5 months there, I was allowed to transfer to a less intense care facility which was closer to my home.
Currently I am living at home and in October 1998 began attending On Track. Initially, there seemed to be little benefit to my attending class. I asked myself at the end of each day “what did I accomplish or contribute there?” My answers were of very brief to nothing.
Occasionally I would attempt to discontinue my attendance at On Track. At the insistence of my wife and because of my own perseverance, I continued attending On Track; I am very glad I did so. For the past 3 years my previous doubts have been replaced by gratitude for the class availability and its curriculum, the high quality of the On Track staff members, and the contribution I have been able to make to other class members’ recovery. Our instructor, Teri Demmon, recommended that I read several books on brain injury recovery and write reports on them. That was a very beneficial experience for me, even though it was very frustrating initially. Reading helped greatly toward my memory improvement and understanding of my circumstances. Many of the reports have helped some of my classmates. Some of the reports’ content has been incorporated into the class curriculum and they are part of this Internet site.
My reading, writing, and memory skills are still far short of where they were prior to my injury. At this time, most of my activities are self-directed with normal direction from the On Track staff for my class work as well as from my wife for activities she would like me to participate in or contribute to (or point out where my behavior needs correction). When I began attending On Track 4 years ago, I felt like a zombie who had to be told when and how to tie his shoes. I had some difficulty following my own notes regarding assigned homework, even though the homework was quite straight-forward. Occasionally I was also a slight behavioral challenge for my tolerant On Track instructor. Before my injury, I was well behaved and respectful of others. During the 5 years after my injury, most of the time I knew when my behavior was inappropriate; however, at times with the greatest of effort, I could not control my impatience and intolerance with some of the smallest annoyances by other people.
Each day I still wrestle with my loss of employment since I was very much a "type A" personality and thoroughly enjoyed the contribution I could make to the success of my employer and fellow employees. For me there were always greater goals to be accomplished. My sense of loss has subsided somewhat and I am reaping a sense of personal fulfillment through my contributions at On Track. I have accepted (although I am sometimes still frustrated) many of the limitations I face in my personal life due to my injury, particularly my poor memory. Acceptance of my circumstances does not come easily, but I realize there are others who have been victimized by brain injury and have fared much worse. Consequently, I am grateful for my current state and I look forward to living my life utilizing my potential to the greatest ext possible.
It is easy for others to say “it could have been worse; consider yourself lucky”. I accept that; however, it is still not easy to live my life as it is while trying to reduce my focus on what my life was like prior to my injury and what it may have been like without the injury. I will continue listening to other people regarding their evaluation of my recovery and persist in my continuing recovery and adaptation to my deficits. Not only does recovery require the support of others, but most importantly it requires an intense personal commitment, definition of realistic goals, honest goal achievement evaluation by oneself as well as evaluation by trustworthy and empathetic family members and associates.
My recovery plan includes continuing attendance at On Track, more reading regarding brain injury causes and recovery, taking advantage of offerings by medical professionals, more physical exercise, and contributing to the recovery of other people who have been similarly afflicted. My contribution to the recovery of others has been gratifying; if I had not been injured, I probably would not have considered serving others in this manner.
Some of my ideas for better mental health after brain injury are as follows:
Limit accusations of others and finger pointing; take responsibility for your own thoughts and actions.
Seek medical and caretaker help for impulse and emotional control. Lack of self-control goes hand-in-hand with brain injury. Try to objectively evaluate yourself; ask for review of this evaluation by trusted personal and healthcare associates.
Self-monitoring and personal record keeping. I keep a daily personal diary on my PC regarding events of the day or past couple of days. The entries are brief and usually revolve around interaction with other people where there was a significant depth of interaction, where there were areas of conflict, or when starting a new relationship or deepening an existing one. I pay particular attention to issues of substance where the potential outcomes were not obvious at the beginning of dialog. The most interesting dialogs are those where there is mutual give and take or negotiation; in these cases I try to pay attention to my own feelings, contribution, and unintentional injection of confusion into the dialog. I also try to understand the other person's viewpoint, his acceptance of my view point or disagreement with me, and the other person's emotional state during our interaction. These diary entries also serve as a check on my memory and my perception of my behavior during these interactions.
For anyone to recover from any injury, proper medical attention must be given; support systems must be available and used. Most importantly, the survivor's outlook must be one of determination to recover as completely as possible, acceptance that he/she may not recover soon or fully, and identification of and belief in appropriate support resources.
Determination to recover is the factor over which the survivor has most control. Determination to recover includes applying whatever intellectual and physical resources the survivor has at his command to identify and accept his/her limitations, accept that his life will probably never be the same as it was before the injury, and emotional strength to effectively deal with personal and environmental roadblocks along his recovery path. The survivor must select resources he can manage, those which he believes will provide him support, and those which will provide him positive models of behavior, encouragement, appropriate criticism, logistical support as reasonably needed, as well as academic assistance.
A caregiver must be able to tolerate the survivor's probable significant amounts of unpredictable behavior. A caregiver's condescension, unreasonable or inappropriate criticism, and lack of encouragement can adversely affect both the survivors rate and quality of recovery. Caregivers can be most effective when they try to understand the likely emotional state and probable reasons for inappropriate behavior by the survivor. Consider that the survivor is probably suffering from a severe sense of loss, a lack of self-direction which probably is also highly frustrating for the survivor, denial by the survivor of his adverse circumstances, and a likely high level of anxiety regarding his/her future. Caregivers must face the fact that the survivor's physical and verbal activities may have to be controlled to an appropriate degree; this is not a pleasant task for either party. As a result, caregiver control must be conducted in a caring manner without being offensive or appearance of an attempt to act as a controlling personality. A caregiver has an excellent opportunity to develop authentic leadership capabilities under these circumstances. This places severe demands on the caregiver regarding his or her behavior and techniques.
Failure after long perseverance is much grander than never to have a striving good enough to be called a failure. -- George Eliot
Mary Ann, Ken's Wife and Caregiver
On February 11, 1998 my life was turned upside down. I learned that my husband had suffered a cerebral hemorrhage and would have to have brain surgery. The neurosurgeon told me that “it was not going to be a walk in the park"; however, the neurosurgeon believed he could repair the burst blood vessel in Ken's right frontal lobe and that Ken could lead a near-normal life. I had no idea what that meant at the time. For two weeks Ken was in a coma; when I was finally able to talk with him, we decided to see if he could sit in a chair. We had to tie his upper body to the chair back because there was a risk of his falling from the chair unless he had physical support.
Early on I witnessed his extreme loss of motor skills, cognitive skills, and memory. Ken could not write his name legibly and had great difficulty writing the alphabet. He could not solve the simplest of arithmetic problems, even though he had received excellent grades in calculus and advanced mathematics courses which were part of his university electrical engineering curriculum. When we walked around the hospital he said to me, “this place is getting a little big for us, perhaps we should sell it”. He did improve to the extent that he could be released from the hospital and be placed in a nursing facility.
I began the task of finding a temporary home for Ken where he could be monitored while I was at work. I found that board and care homes did not have the proper facilities to care for brain-injured persons. The hospital identified a nursing facility which was about 120 miles from our home where he could receive proper care.
Six months after he entered the nursing facility, I found another facility closer to our home since by then Ken needed less intense care. I talked with the management and they were willing to give Ken a try. They provided him with a studio apartment; he could bring some of his favorite furnishings and computer equipment to make his surroundings as comfortable and familiar as possible. Since this facility was close to our home, I could see him some weekday evenings and bring him home on weekends. I discovered the On Track Program, and Ken began attending On Track's brain-injury recovery classes while living at this care facility.
For a long time he did not remember where we lived; he thought he was living in England where he had lived in the past. This was a very frustrating time for me as I did not understand how he could be so confused. Ken also suffered from an extreme anxiety and obsessive compulsive disorder. For example, when I would attempt to take him out of the care facility for a weekend, he would open and close the drawers in his chest of drawers for up to an hour since he believed he had to verify contents of the drawers. I would have to ask one of the care providers to order him out of the room so we could be on our way home or another destination.
When Ken was released from the brain injury facility and allowed to come home it was not an easy transition. He continued to think he was still working in the computer industry and would call a previous employer inquiring about his job; he would attempt to make airline reservations for business travel; and he would continually pace around our house and the streets nearby.
My advice to a relative or spouse of a brain injured person is to learn all you can about brain injury; don't give up hope that your loved one will improve over time. It is still very difficult dealing with Ken's permanent memory and emotional difficulties, but Ken has made substantial progress since his injury.
Adriane, Survivor and On Track Student
Prior to my stroke, I thought I was in very good health aside from being overweight. I have always been blessed with low blood pressure. My hobbies were my work and my animals. I loved my work. As a word processor, I was very blessed with great people to work with and a good work environment. Every day was different and fun.
On Valentine’s Day 1999, I decided to do something about being overweight, by taking some diet pills. I believed an over the counter diet pill would help me speed the process of losing weight instead of time-consuming walking. Some time after I took the diet pills, a friend called 911. The next thing I knew, firemen were crawling through the dog door of my house and I was in an ambulance trying to tell the paramedics how old I was and what my name was.
I remember having trouble talking and using my left hand. I still do not have the use of this hand. The next couple of months I spent in an acute rehabilitation unit at a hospital. The doctors and therapists explained that I have left side neglect, which means that my awareness of my left side is pretty much neglected.
I am blessed with my family who has assisted me in finding housing. My residence is a facility designed to help people born with neurological disabilities strive to gain independence. I have the opportunity of learning to live somewhat independently once again.
On Track has provided me with a level of support that I never thought of or considered as being important. My friends and family have been of great general support; however, On Track classmates and teachers have the knowledge and experience that is essential in my recovery. On Track staff has a patient, compassionate understanding of our disabilities and our limitations as well as the complete person we are now.
My belief is that everything in our lives happens for a reason. I try to always remember to greet each day with joy, and to treat people with courtesy. I am one of the most blessed people I know.
Michael, Survivor and On Track Student
Prior to my stroke there were many aspects of everyday life that I took for granted. Most important to me was my overall physical health.
Since my stroke I have been prone to a series of occasional grand mal seizures which leave me confused and extremely exhausted. In light of this, it is important for me to always have someone with me for safety reasons whether I’m at home or out for a stroll. Another result of my stroke has been poor short-term memory. Although I have realized some small improvements since being discharged from the hospital, my memory is still terrible at times. My mobility has also been reduced significantly due to physical reasons such as extreme fatigue and a paralyses of the left side of my body. I am unable to walk or travel extended distances. I cannot drive a car, so I am dependent on my wife or friends and family to drive me to and from activities away from home. This does not lend itself to me having a flexible schedule and of forces others to be flexible in order to accommodate me.
For the time being, my wife and I plan to continue with my physical and cognitive rehabilitation programs. These include participating in the On Track program, physical, speech therapies at a local rehabilitation center, and taking courses at Diablo Valley College.
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