Falling through the cracks
Brian and I were married December 1998. Brian had one operation regarding his shunt a few months before our wedding. He and the shunt1 seemed fine and everything was as we were told it was going to be.
In February 2002, Brian’s headaches were so bad he would hide in our bedroom trying not to cry. He could barely open his eyes because the light or movement bothered him. The next two years would be the worst that we could imagine. Doctor after doctor wanted MRI’s, CAT scans, X-rays, and EEGs. Doctor after doctor told us that there was nothing wrong with the shunt and that the headaches were his own doing. Doctors told us that Brian was depressed and should be on medication.
My Brian is a major tease and through all of this he could still tease me and I knew he wasn’t depressed. We went to two mental health workers and then a psychologist who told us after an hour that Brian wasn’t suffering from depression, but frustration. He took Brian off the antidepressants saying they wouldn’t do anything for him. Brian left his office smiling. Although he was off the antidepressants his GP (general practitioner) later put him on two types of morphine, pill form and liquid. They would help for about 1-2 hours then the pain would come back. He went into the hospital very sick. When I confronted the doctors that something was terribly wrong they bluntly stated he had the flu and that was all.
The day he doubled over with pain in his abdomen was a prayer answered. All those important tests taken earlier were done on his head or chest area; they neglected his abdomen where the trouble was hiding. He had a small blockage that was enough to cause a problem. The relief that we felt was tremendous.
It gave us solid ground.
Brian had an operation and was out of the hospital within 46 hours. He felt great. He was so happy to be with our 1-year-old daughter Monica again. I was working full time and able to leave Brian with Monica and not worry. Then in November, we were watching TV while Monica was in bed. Brian got up, fell down, crawled back to the couch and started retching and vomiting.
Back to the hospital we went, but this time we were angry and knew something wasn’t right again. He was in hospital overnight when the GP consulted the neurosurgeon who told us to get back into the Health Sciences Centre (HSC) fast. When we got to the HSC, he was almost in delirium with nausea and pain took over. When we got to see a doctor he actually listened to us and he did a simple test. With a syringe, he withdrew liquid from Brian’s shunt reservoir. It should have been clear like water, but it looked like milk, which suggested an infection. The doctor put him in intensive care. Nothing could be done till the infection was cleared up.
I was granted a leave of absence from work; I would stay in Winnipeg all week with Brian then go home to our daughter on weekends.
The infection was bacterial meningitis and was almost a death sentence. It left Brian with a brain injury on top of everything else happening to him. Brian had hallucinations of being abducted by aliens, and semi-trucks parking beside him with Christmas lights on. He thought that one of the nurses was me. He grabbed her trying to get her to stay with him, almost breaking her arm. He became incontinent and had to wear diapers. He would eat (when he was awake and somewhat alert) then vomit it all back up. After weeks of this routine the infectious disease doctor told us they were going to try yet another drug.
Two and half months after we entered the HSC for the second time I left the hospital and Brian was with me. He had two weeks of intense antibiotic treatments in a much closer hospital. He was finally released and for four weeks we drove back and forth for out-patient treatments.
At his check-up appointment with the neurologist, the doctor apologized. He informed us that the last year should not have happened, especially the last six months. He knew Brian had the start of an infection after the first operation six months earlier. He told us that Brian should have had a prescription for a strong antibiotic when he left hospital for the first time. He believed that was why Brian had got so sick the second time.
I was shown X-rays of Brian’s brain. The silent stroke he had, along with the scarring tissue, is why they believe he lost some of his eyesight. We finally got some truth and were happy about that, but the fact that a lot of this could have been avoided was maddening.
Brian is on medication for grand mal seizures that he did not have until he got bacterial meningitis. He cannot drive because of his loss of eyesight. He has difficulty with memory, comprehension, and concentration; he is moody along with a few more things I could mention. We have since had another child. We can only live day by day. Sometimes, it’s hour by hour.
We have come to the conclusion that because he will more than likely have to have another operation in the future, we have to live each day not dwelling on the past, but concentrating on today and the tomorrows with our kids.
– Georgina Wood
1 a shunt is a hole or a small passage which moves, or allows movement of fluid from one part of the body to another
Watch the train
My name is Charlie Coleman and I live in rural Manitoba. I am a middle-aged male and a survivor of a brain injury from a motor vehicle accident in June 2003.
I was hit by a train locomotive at an uncontrolled level crossing. The train was going 100 kilometers per hour. I was driving a dangerous-goods semi-truck and when I looked I did not see the train. It may have been hidden by the large truck mirror. The impact ripped the cab of the truck off the frame. I am told that I was not left unconscious in the accident. I suffered many broken bones and have had a few surgeries to get most of things back in place. I am finally able to walk again.
The doctors were able to put steel pins, plates, and rods on and in my bones to get my body healed back together. I have not found or heard of any doctors that could just fix up the internal brain injury I suffer from daily, like they fixed my broken bones.
I am far better now with my brain injury than I was two years ago. I still walk with a limp, but the doctors have not been able to figure out if the limp I have is from steel rods, plates and pins in my leg, the stroke I had in the accident, or from the brain injury I suffered. All I know is that I have a limp that cannot be fixed so it does not matter what caused it.
I still suffer from a few of the things that most brain injured people suffer from, like limited smell and taste, little if any patience, vision problems, hearing problems, poor memory, loss of hope, and many more. I used to have an instant anger problem. When I was confronted by a person or with a problem I would instantly blow up and lose it. After a couple of years, I now have a long fuse length before I get upset. I feel an important point here is that I now control the length of time it takes me to get upset. It has not been easy to get to this point of control.
Another important thing I have learned is how to look at how valuable I am. After my accident, I was upset with myself and believed I was useless, just a waste of skin, and breathing valuable air that other people could be breathing.
In my recovery process, I came across a doctor that asked me that dreaded question, “On a percentage basis, what percent of work could I do now as compared to before my accident?” I told him I used to work at over 90% every minute of the day, and now I would be lucky to do 10%. This was before I got control of my fuse length, and he knew that I was upset. He told me that I could look at it like I was 10% of what I used to be, and be mad all the time or I could look at it like I had a new job. The old job that I used to do and was very familiar with had ended. I now had a new job that I did not know much about so I was learning every day. As I learned what I was doing, I was 100% efficient. I have always forced my brain to work overtime and feel I have tripled my thinking capacity. I live with the thought everyday, “DON’T EVER GIVE UP.”
– Charlie Coleman
My new reality
On or around the 23rd of August 1972, I awoke to some unfamiliar surroundings. Because I could not seem to verbally communicate with any of the people I thought were around me at the time, I counted to one hundred in my head in an attempt to determine whether I was dreaming. I then lapsed back into what had been the lengthy coma that I had just started to come out of. Unfortunately, as time went on, I learned that NONE of this had been, or was ever going to be a dream!
It turned out that ever since late in the evening of June 21, 1972, which had been some six weeks earlier, I had been somewhere within New Westminster’s Royal Columbia Hospital in a comatose state after having undergone corrective brain surgery. I was informed that in the late afternoon of June 21st I had been riding a friend’s ten-speed bicycle and I had fallen off. After that fall, I had apparently walked back to that friend’s home in White Rock, B.C., where I was visiting from my home in Winnipeg. I then ate supper, which I eventually brought back up. Because of that incident, I went to White Rock’s Hospital for observation. While there, it was determined that the afternoon’s fall from a bicycle had ruptured a minor artery on the lower left inside portion of my skull or my head.
It was still bleeding, creating an ever growing blood clot and thus more and more pressure on and displacement of the brain. I was then taken to Royal Columbia Hospital by ambulance for corrective neurological surgery.
I spent 1972’s Labour Day weekend flying back to Winnipeg with my wife, followed by a three-month term in the Rehabilitation Hospital. Those three months were the start of my own education about my “new” reality. People told me I was doing rehabilitation, but I would never refer to it as that. Fortunately, in spite of that experience, I rapidly recovered most, if not all, of my mental functions, such as engineering, higher mathematics, logical and reasoned thought, plus speech. My reading and spelling took a bit longer to come back in what is for me their “full” function. From what I’ve been told, one’s memory returns in the reverse order to which it had been laid down. And even though I had only temporarily lost my abilities to do all those mundane things like design engineering, reasoning, planning, reading, writing and speaking, it seems that I have permanently lost the ability to do most of those things our North American society really seems to value, like dancing, football or hockey. In part I can only surmise that this has something to do with the fact that walkers and/or wheelchairs are just not vogue—I use a motorized cart.
Similarly, I have had more than my share of problems accepting the typical North American reclassification my former employer, the City of Winnipeg, has given me as “permanently disabled”. However, I eventually used this in the best ways that I could. Even though I would have preferred to continue doing electronic design in the position I had with the Water and Waste Department, I ended up using a portion of the permanent disability pension I continue to get to setup, equip, and run my own in-house engineering office. Over this time, I have successfully developed around 8-10 different electronic ideas. I even applied for, and eventually got, a couple of patents on some of these ideas. Unfortunately, patents and the world’s markets are not directly interconnected! On three or more other occasions, I have also been re-employed or contracted by one of several different companies to successfully complete several electronic design ideas.
Even though from time to time it seems like all my wife’s and my efforts have only permitted us to take an occasional federal income tax write-off on a portion of our total engineering expenses, we have not given up trying to accomplish more than that, at least so far. Regrettably, it also took me about 20 years before I finally went for and got my current driver’s licence. I did this in part to relieve my wife of the entire highway driving on any of our business trips or vacations. So now that I have successfully retained this licence for the past four years, I do not intend to let it or any other skills lapse from lack of use.
The power of support
In September 1981, my wife Val, who was 26 at the time, was shopping at St. Vital Centre when she felt a sudden and intense explosion in her head. She became very ill and required emergency transport to St. Boniface Hospital. A blood vessel in her brain had ruptured and was bleeding within her skull, causing potentially life-threatening pressure on her brain. This is what is medically referred to as a ruptured aneurysm. I am an athletic therapist by profession and am trained to recognize and treat athletic injuries including those to the head. Ironically, on the day of her accident I was testing a student therapist on his ability to handle emergency head injuries.
When I arrived at the hospital, a neurosurgeon (whom I knew very well) gave me the facts in very cold and non-emotional terms. I was very shocked and angry at this response, but later learned to appreciate that this person delivers a similar message to other families on an almost daily basis. It must be particularly difficult with people you know and this was likely his way of coping with the emotions.
Val was hospitalized for three weeks and thankfully recovered to the point where she could be released. No surgery was suggested at the time. Our family and friends were our primary source of support. Perhaps people assumed that because I was aware of the medical issues involved I didn’t need any other support. Fortunately, we were young and we did not have children in need of our attention.
Two months later, to help with her recovery, Val volunteered at the school where she had been teaching before her brain injury. In September 1982, Val’s strong will, determination, and perseverance enabled her to recover well enough so that she could return to full-time teaching. We thought we were back to normal again.
In January 1984, Val and I were anxiously awaiting birth of our first child due that April. One evening Val had a severe headache and I rushed her to the emergency room. She had suffered a second bleed. This time she was six and half months pregnant. Special precautions were required leading up to and during the birth of our daughter Erin. Val required surgery following the birth.
Something very different happened this time.
I was waiting in the hospital waiting room for Val to be transferred up to the ward. When I sat down, I saw a young man flanked by an older couple. They were sitting in the very same seats where wife’s parents and I sat in the first time. I looked at their faces and knew then that they were facing the very same problem we had encountered three years earlier.
Once Val had been transferred up to the ward and was stabilized, I walked out of the room and saw these same three people clinging to each other in the small waiting room on the ward. I stopped and told them that my wife and I had been through this once before and asked if there was anything I could do. They immediately started to ask me a million questions. As it turned out, this was a young couple who, like us, were expecting their first child in six weeks. The older people were the woman’s parents.
I spent a lot of time with the husband and his family helping them to understand the medical aspects of his wife’s head injury. More importantly, I think, I listened to him talk about the emotions he was feeling. In some ways it was therapeutic for me and helped me deal with our situation as well. I had to be strong and maintain a positive attitude for all of us. Both of our wives were in the same room. They also talked to each other offering support, strength, and hope whenever the other was in need. Both of our wives delivered healthy babies and required surgery a short time later.
Our relationship extended beyond the hospital stay. Because this family was from out of town, much of our contact was by telephone, short visits when they came to Winnipeg to see the doctor, or when we travelled to their home to visit. Both of our families are now “back
This experience demonstrated to me the importance of a support group. People experiencing this crisis situation are totally overwhelmed by fear, anxiety, and the sudden change in their lives. The medical personnel, who must focus on the medical needs of the patient, may not have adequate time to provide a compassionate ear or tend to the emotional needs of both the patient and the family.
Helping others is also empowering to those of us who have experienced the crisis. It helps us to reaffirm that we have been strong enough to overcome our own problems thus far and will continue to do so in the future.
– Glen Bergeron
Man of confusion
I was 33 years old in 1990, when on an annual road trip to Regina with a buddy, my life changed forever.
For several years we had been travelling to the annual Labour Day Classic, a football game where the Winnipeg Blue Bombers and Regina Roughriders clash in a fierce rivalry. This was a fun time that we enjoyed each year.
I have no memory of the single car collision that threw me into the bushes alongside of the highway. Had it not been for my buddy’s persistence asking the emergency responders, “Where is my buddy?” over and over again, they would not have found me. I would not have survived.
I grew up in a middle class family in Winnipeg. My father was a postman and my mother a stay-at-home homemaker. I grew up with two brothers, one was ten years older and the other was one and a half years younger. School was not easy for me, but my younger brother and I were passionate about sports. We played baseball, football, and hockey. My favourite was baseball. As our family never owned a car, Dad would take us on the bus to our sports events. When we weren’t playing organized sports groups of friends would gather for pick-up games on our street.
During high school I worked at KFC. I enjoyed the social aspect of working and would frequently go to socials on the weekends with friends. At the time, I was a social drinker, sometimes drinking too much like most young people. I never tried drugs. I do not drink now.
In 1979 I began work at Eaton’s on the receiving dock. I later moved to a position driving a low motor to transport goods from trucks to the receiving department. This is the position I held at the time of my accident.
I met my wife through a mutual friend. We were married in 1986, bought a home, and settled into married life. I was the primary financial support as my wife worked little outside the home. Life was pretty good; we had no children, but socialized with extended family and friends. I continued playing sports and attending sporting events.
The year before my accident my father was hit by a car when crossing the street and he required a leg amputation. I do not recall if he returned home before he passed away. Immediately following my collision, I was taken to the hospital in Regina. They tell me I had been in a coma because I had suffered a head trauma, but that I had no other injuries. During the early days after the accident, a shunt was surgically implanted to relive some of the pressure on my brain. I have a deep indent on the right side of my head that can be felt but is not visible to others. My buddy who was driving at the time of the accident had a separated shoulder but no other injuries.
My first memory after the accident was opening my eyes and seeing a row of airplane windows, probably during my transport back to Winnipeg. I do not remember being in a hospital in Regina, how long I was there or how long the physical rehabilitation process took. I was transferred from Regina to the Health Sciences Centre in Winnipeg. When I awoke from the coma my memory and vision were affected.
I remember sleeping on a mattress on the floor because I would roll out of bed. Although I do not remember feeling frustrated, I do remember having episodes of explosive anger where I’d “blow up” at family and friends. I would repeatedly ask when Dad was coming to visit, and was continually forced to relive the loss of my father when family reminded me that he had passed away.
My rehabilitation included occupational, physical, and speech therapy. I would go home on weekend passes with my wife during this rehab process and was eventually discharged home. I continued outpatient therapy. During this time, I was not really aware of how well I was doing. I would lose my temper; I would throw things, and one time broke the bedroom door. During these times my mother would come and take me out when things were (or were not) going well.
The most profound and long-lasting effect of my brain injury has been the loss of memory. Remote events I can remember, but recent events are often forgotten. Timelines and the sequence of events following the accident are hard to remember.
Over the years, I have learned to cope with these memory gaps by keeping a diary in a day-timer planner. I write out appointments, names and numbers. At times I feel frustrated when I cannot remember details, but after reviewing my day-timer I know what I have been doing. People tell me that I am never late for appointments. Occasionally though, I am in trouble if I lose my glasses or my day-timer. I have learned to use humour to deal with these memory losses.
I do not remember much about my marriage before the accident. Over time, my marriage dissolved and my wife and I divorced. This is a part of my life that I have difficulty leaving behind. I still feel angry and hurt and can easily become upset when I talk about it.
Today, I have many people who work with me and protect me in the areas that I have difficulty. For instance, the Public Trustee Office works with me to manage my finances. I have a community mental health worker that I meet with regularly and who has arranged to have someone come into my home a couple of times a week to assist, ensuring that I keep my place clean, do my laundry, and gives me support to be independent as I live in my own home.
I can no longer participate in active sports due to my slowed reaction times and reflexes. I continue my
love of sports as a spectator with season tickets to the Winnipeg Blue Bombers football and the Winnipeg Goldeyes baseball teams. Mini-packs of tickets to the Winnipeg Jets satisfy my hockey needs. I bowl weekly with a group from the Manitoba Brain Injury Association.
As I am no longer able to work, but I contribute to my feelings of self-worth and community by volunteering. I volunteer with a number of charitable organizations including: Oyate Tipi, which provides meals, food hampers clothing, and household goods to the less fortunate; Special Olympics, where I coach a bowling team of special needs children; and helping out at MBIA with various tasks. I sometimes help my older brother with yard work and chores as he grows older.
It has been 23 years since my life was changed by a brain injury caused by a single vehicle collision. A lot has changed in my life. I am grateful for the care that I have received in hospital and in the community.
Some of my friends have stopped calling and several have passed away, as have both my parents. My social life consists of volunteering, spectating at sporting events, and spending time with my brothers. I remain physically healthy, although I don’t eat as well as I could because my cooking skills are limited.
I am satisfied with my life. I have one dream that I would like to achieve—to attend a home game of my favourite football team, the Green Bay Packers.
It is not always easy living with a brain injury, but if I keep positive and keep busy I realize I have a lot going for me. I am thankfully for the people in my life. My life is definitely different and I have had many losses that I still struggle with and parts of me that I still mourn. I have a new best friend since my brain injury—my day-timer.
I never do anything without him and he accompanies me everywhere.
– Gary McFarlane
A mother’s love
We were a normal family—a dad, mom, and two kids named Chris and Courtney.
We thought that we had normal ups and downs: not enough money, and lots of issues with raising two kids, learning how to be good parents, loving the craziness of our life, being with friends, feeding everyone, and keeping our kids safe.
Chris and Courtney are three years apart and very close. As a 22 and 19-year-old, they still loved to do things together, and one spring night they decided to meet after Chris’s work shift was over.
We never knew who was home. It was only in the mornings, counting shoes at the door, that knew who was there. We woke the next morning to get ready for work and suddenly our phone rang. It was 6 a.m. It was the Concordia Hospital and I was told that our daughter Courtney had been in an accident. She was bumped up and shaken, but wanted us to come and get her. That was all they told us and at that point, we didn’t know who else was involved.
We decided to go to the hospital together in one vehicle. As we were driving, we heard on the radio that there was an accident that closed the road that we would have taken. When we arrived, we stopped at the nurses station to locate Courtney. As we stood at there waiting, I glanced at a room thinking that someone looked familiar. As the nurse explained that Courtney was ok I got this bad feeling. I asked who was involved, she said three occupants were in the vehicle, two were admitted at this hospital, one was sent to HSC with a head injury, but was stable as well. I asked the name, but she didn’t know. She only knew that he was a male, 22 years old. I knew right then, that it was our son Chris. She quickly called the Health Sciences Centre (HSC) and confirmed that Chris had been admitted to the intensive care unit.
We found Courtney in a room, crying and sobbing uncontrollably, telling us that there had been a horrible accident that Chris had been knocked out and she thought it was really bad. We quickly made arrangements for grandparents to come to be with Courtney, before leaving for the HSC to be with Chris.
We weren’t prepared for what we found when we got there. They ushered us into a private family room, doctors arrived, they looked serious and told us that Chris had received a devastating brain injury and the next 24-48 hours were critical.
As we sat in this tiny room with most of our family, the feelings we felt overpowered us—numb, hopeless and scared beyond words.
My next memory is finally being able to see Chris for the first time, down a long hallway, scary, going through security doors and seeing Chris, tubes, monitors, ventilator and finally settling on Chris. As I watched him, I just knew despite what we had been told, he was fighting a battle that I had never experienced in my life, but he was still with us. I just knew.
Everything was a blur—family, friends; I was overwhelmed with the outpouring of support.
I believe at one point there were 37 people sitting with us on that first day. Our life had changed so much in that day; we became sheriffs of our son’s care, and keepers of well-being. Every day, I would call the hospital before I would leave the house to see how his night was. We had rotating family and friends staying with Chris, trading off with them sometimes three times a day. I wish I could tell you that Chris woke up fine one day, but the reality is he woke up and was in a vegetative state for about four months.
We were with him most of the time, fighting for him, talking to him, telling him he was so loved.
Eight months later they transferred Chris to a long-term care facility, telling us he would not get better. We asked to bring him home, but were told he was too sick, and his needs were too high for us to handle.
There were lots of nightmares, two transfers to other hospitals, and one day, I looked in the mirror and thought, Chris would never choose to live like this, we’re going to bring him home!
It’s been three and half years since we brought Chris home and we’ve seen lots of changes. Chris can laugh, joke, and walk with a walker. We’re so proud of him and I know that his story will continue. One day his voice will return, one day he will march into those hospitals and tell them, here I am, and I made it.
We are so thankful to so many people that have been with us since that awful day. There is so much more to do and tell people.
– Tammy Kehler