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The Faces of Brain Injury

Brain Injury London > Public Awareness > The Faces of Brain Injury

Family & Friends

Living Life With Joel, An ABI survivor

By Marg Willemse

June 6, 1980 and July 11, 2004 are two very significant dates in my life and especially in the life of my son Joel. June 6, 1980 was the day I gave birth to Joel Boudewyn Willemse, our third son. July 11, 2004 was the day Joel’s life and the lives of his immediate family changed in a way we could never have predicted.

It would be difficult to talk about what it is like to live with a son with ABI (acquired brain injury) without starting from the beginning and explaining what our lives were like prior to Joel’s injury. Joel has two older brothers, Keith and Adam, and a younger sister, Aprille. Visiting Specialists was not foreign to me or to my husband due to the fact that both of Joel’s brothers had been born with clefts which required numerous trips to London for doctor appointments and hospital stays.

When Joel was nine years old he had his first epileptic seizure. It was hoped that as he grew older he would out grow them. Unfortunately, that was not the case. Joel has always been on anti-seizure medication of one kind or another since he was nine. He was never able to go an entire year without having a seizure. Naturally, by the time Joel reached his sixteenth birthday, his friends were all getting their driver’s license which of course Joel was not able to do. It was a tough blow at such an important time in a teenager’s life. Aprille, who is two years younger then Joel, had her first epileptic seizure at the age of thirteen. When our son Adam was fifteen, he was diagnosed with Type 1 diabetes. As you can imagine our lives were busy, yet amazingly under control. At one point our son Keith said it looked like he was the only “normal” kid we had. I imagine that all the surgeries he had gone through seemed minor compared to what his brothers and sister were dealing with.

After a year of trying different anti-seizure medications, Aprille’s seizures were under control, but Joel’s were not. Nothing seemed to work for him and it took a toll on Joel’s life, especially his self esteem. Yet, Joel managed to get through elementary and high school and went on to college. It wasn’t smooth sailing, but it was manageable. After a number of years Joel decided he had had enough of school and wanted to start working. He had been in a Law & Security course and made the decision to move to London, Ontario where he moved in with a couple of friends. Shortly after, he was hired by a London security company and was to begin his new job the following week. In the mean time he was working part-time as a bouncer at a local club. On Saturday, July 10, 2004 after his friends had left to go out for the evening, Joel was preparing for his shift at the club which would have been around 9:30 P.M… It was 2 A.M. when one of his roommates returned and found Joel seizing in his room. This particular roommate was an old childhood friend of Joel’s and had been with Joel more then once when he was having a seizure. As a parent you always dread that phone call that tells you something terrible has happened to your son or daughter. This time, when Cory called me, I could tell by his voice he was really scared and then he told me he had never seen Joel quite this bad before. He was blue, still seizing and had been vomiting. I could hear Joel in the background and asked Cory if he had called 911, which he had. We were instructed to meet them at University Hospital.

Upon our arrival we were allowed to see Joel before he was moved to the ICU. He was not responding and had been given a large dose of medication to stop the seizing. Needless to say it was a long night and we were not getting a lot of answers. Joel had only had one seizure when he was younger that required a hospital visit to stop it. Otherwise, they always stopped on their own, until this time. The doctor’s told us that Joel had seized for approximately 4 – 5 hours and due to the vomiting he may have asphyxiated. If so, this may also have cut off the oxygen to his brain, possibly causing brain damage. There were no definite answers and no explanation as to why it happened in the first place.

All we could do was wait. During the first day, we were getting a lot of information coming at us from all directions; he had a temperature of 102, there was an infection in his body they could not explain, he was dehydrated, his brain was swollen, his heart rate was too high, his blood was too thin, and he was also on a respirator. They thought he might have meningitis, so we had to wear gowns, gloves and masks when we went in to see him. The doctors had actually given Joel a drug to paralyze him; it was the only way to stop the seizing. With all this information coming at us, I decided to start keeping a daily log. It was total overload for all of us. When the doctors decided to bring Joel out of the induced paralysis it took 5-6 attempts because he would start to seize each time. On the second day they were able to get him off the medication. They also stopped sedating him, in hopes he would wake up, which he did not. We were told Joel was in a coma. By the end of third day the doctors told us that they had done everything they could, but that Joel’s liver and kidneys were failing. He was “very critically ill”. Basically, if he did not “turn that corner” soon, it did not look like he would make it.

I have always been strong in my faith, but I can honestly say that I have never prayed as hard or more desperately in my entire life. Fortunately, my husband and I are both from large families and we immediately had their support, love and prayers. Family members and friends sat vigil with us waiting for some good news. My mother, who was 82 at the time, was and still is a huge comfort and support to me and my family. The hospital staff were wonderful in that, they would let his Dad and I, Joel’s brothers and sister and any extended family or friends who wanted to spend time with him, go in to see Joel any time day or night. It was not until some time later that we realized they did this because they did not expect Joel to survive. He was steadily going downhill. At one point, when the doctors were basically saying there was nothing else they could do, a wonderful neurologist by the name of Dr.Young went in to see Joel a number of times and he was able to discover why Joel was not improving. With a change in medication, came a change in Joel’s body and he started to respond to the new treatment. Although Joel was still in a coma he was managing to hold on. On the sixth day a MRI was done, but the prognosis was grim. Dr. Young had actually stayed late that Friday night just to be there when the results came in as he knew we were waiting.

Dr. Young sat us down and explained that according to the MRI there was considerable brain damage on the right side of the brain. Joel would still have his speech, but he would not be able to walk, meaning he would have to be in a wheelchair. His eye sight would be affected in a way that he would see everything “flat”; he would not be able to see three-dimensionally. He would not be able to see depth either, using stairs as an example. Dr. Young said he was sorry to have to tell us this. At this point, we were happy that Joel was still alive because we felt we could deal with anything.

As we waited for Joel to come out of his coma, numerous tests were being done on a daily basis and with each day came more problems and little improvement. It was on the tenth day that Joel actually tried to open his eyes. I had just come into the room and the nurse was trying to get a response from him which they would do on a regular basis through the day. She said to him, “Joel, your Mom is here” and his eyelashes began to quiver and his eyelids started to flutter. I just kept talking to him and he kept trying so hard to open his eyes. By the twelfth day they had to do a tracheotomy. It was the next day, when I was holding Joel’s hand, that I asked him to squeeze my fingers, which he did three separate times. It seems like such a small thing, yet to us it was huge. He was responding to voice commands. Then he started to yawn and as he stopped, he opened his eyes! It only lasted a couple minutes, but he gave us more joy and hope in those few minutes then we had had in almost two weeks.

Over the next few days he continued to give us small signs that he was starting to come out of his coma. Then on the sixteenth day we were told Joel had blood clots in his left leg. The doctors administered Heparin in an effort to dissolve them. The next day Joel’s bilirubin was up and he had a yellow color. His liver and kidneys were not working properly. His temperature went as high as 106 degrees F. The doctors continued to run tests such as a MRI, x-rays, blood cultures, and an EEG. They also kept him sedated all day with a sedative that causes amnesia. The doctors told us that this would keep Joel from having any memory of all the terrible things he had endured over the past few weeks while in hospital. The following day they did not administer a sedative at all and Joel opened his eyes and followed the nurse with his eyes as the nurse moved around the room. He then gave nurse Fernando the “thumbs up” and opened and closed his eyes on command.

It was on this day (day 18) that they started to take Joel off the ventilator for short periods of time and allowed him to breath on his own. His temperature was still too high and his hemoglobin was too low so they gave him a unit of blood. The doctors decided to call the Department of Infectious Diseases to have a look at Joel. They concluded that Joel was free of any disease, which made us happy, but still left us with out an answer as to why his temperature was so high. By the twentieth day Joel was no longer receiving sedatives of any kind and was starting to move around and was becoming more alert. When I went into see him, Joel opened his eyes and when I started to talk to him he looked at me and then smiled, twice! Then, as his Dad began speaking, Joel turned his head towards his Dad. We like to think it was because he recognized our voices. By the end of the third week Joel was able to stay awake for a good part of the day. He then started having problems with his blood pressure and heart rate. They were both too high. For a number of days now they had tried to get Joel’s temperature to drop by literally packing him in ice. He was lying on a mat that actually had ice in it and they would put ice under his armpits. It was discovered that he had an infected sore on the back of his head from lying down so long, so an antibiotic was administered. The doctors said that the infection might have been the cause for the high temperature, but they could not be one-hundred percent certain. Two days later Joel was moved up to the seventh floor because he was staying awake and holding his own even though he still had a high temp which was somewhat manageable. He was put into the Intensive Observation Unit on the seventh floor and would be there until it was safe for him to go into a private room.

On the twenty-sixth day, August 5, Joel woke up and said “Hi” to his Dad and me. It was the first word he had spoken since July 11. I asked him how he was feeling and he said, “Like crap”, which was not hard to believe at all, considering everything he had been through. Once he was awake the doctors felt it was important to get him moving. He could barely stand on his own. Physio therapy began with Joel just lying in the bed and the therapist helping Joel move his arms and legs.

He also seemed to be having a problem with being able to tell the difference between reality and the dreams he was having. He was actually calling his dad “Optimus Prime” although he knew everyone else by name. He had been dreaming about the Transformers, an animated TV show he loved to watch when he was young.

There was a Picc line in his arm which he found really irritating and he kept asking anyone and everyone that walked by if they would take it out. The nurses had tied him down to the bed because he kept trying to get up even though he could barely stand on his own. He even offered his brother Keith $20 to untie him. After a couple days the Picc line was removed and he had managed to pull out his own feeding tube. It was decided by the doctors not to replace it and they began to feed him soft foods. He could not seem to get enough water and was constantly asking for it because he was so dehydrated.

When I asked him if he knew why he was in the hospital he said “no”. So I went on to explain to him that he had had a really bad seizure, but that he was getting better.

It had become my habit to call the hospital first thing every morning to see how Joel had fared through the night and on this particular morning the nurse told me the doctors had decided to remove Joel’s tracheotomy. He was able to swallow on his own. It was at this point that Joel starting complaining about pain in his shoulder.

On day thirty, Joel was moved to a semi-private room where he had COM care watching him 24/7. Test results for his liver were coming back and the doctors were telling us Joel’s liver was still not right. They were still working on it. A couple days later Joel was moved into a private room and still complaining about the pain in his shoulder, which they eventually found to be a shoulder dislocation.

Five weeks after his admission Joel’s Dad and I went to Parkwood Hospital in London to look into the arrangements that had been made for Joel’s rehabilitation. Four days later Joel was moved to Parkwood were they gave him a couple days just to get used to his new surroundings before starting therapy which included physio, occupational and recreational. By this time it was September and I had returned to my job as a Secondary school librarian. Needless to say it was a very stressful and difficult to concentrate on my job. By the end of the third week I decided I needed to take a leave-of-absence from my job and try to get a firmer grip on all that was happening in our lives. It was about ten days before Joel’s initial seizure in July, when we had just started the construction of our new home. We were doing all the contracting ourselves. It was a project that I was really looking forward to and knew I would really enjoy. I had already done most of the footwork as far as getting numerous estimates for the various jobs that needed to be done. It just added to the already full plate that we had. During the first week after Joel was admitted to the hospital I didn’t even want to talk about the house and it was basically put on hold. We were living in a four level-split at the time and when we were told Joel may very well be in a wheelchair we knew we had to continue with the new house which was going to be a one- floor plan. Our lives basically revolved around Joel and we did our best to work on the house and be there for our other three children.

I would have to say the first six months were the most challenging as far as adjusting to all the changes in our lives. I can still remember driving home one day and thinking about how much our lives had changed. I did not even recognize my own life anymore. We were no longer living in the home we had loved for the past sixteen years. It was no longer just the two of us. Our daughter had moved back home after graduating from university and when Joel was discharged from Parkwood Hospital he naturally moved back in with us. My husband and I were so involved with Joel’s life, work, and the finishing of the new house that we had very little time for each other. It seemed we had entered into this long dark tunnel and were so busy trying to deal with the “new” Joel, and all that entailed. We both were doing all we could just to hang on to our own sanity, let alone be there for each other.

Joel spent five weeks at Parkwood and progressed well enough to come home. When Joel first arrived home he was very moody and had a very short temper. There were many outbursts when he was with his immediate family. Yet, he seemed to know that same behavior was not acceptable when his extended family members were present. He spent most of his mornings sleeping and in the afternoon he would watch television and spend a considerable amount of time on the computer. Originally, we were concerned by the amount of time Joel was spending on the computer, but over time we came to realize that it was actually helping with his reading skills. He also seemed to be able to retain a fair amount of the information he was reading.

We also noticed that Joel was very sensitive to noise and light. During the day he would close all the drapes in the house because he could not tolerate the light. He also had a lot of headaches and migraines which made him even more irritable. Most nights he would be in bed by 7 P.M. He would come into the living room just before turning in for the night and turn the television and all the lights off and leave the rest of us sitting in the dark, literally. When we would tell him that we were watching the television he would tell us that we should be going to bed too. He didn’t like the noise. We really had to try to keep our sense of humor during this time or we probably would have gotten into even more disagreements with him. Eventually Joel was able to stay up later into the evening. We also noticed that whenever anyone came over to visit, he would say hello, but then disappear to his room or the computer room.

Approximately three days a week a support worker from the Outreach program would come to the house to help Joel work on relearning his life skills. It wasn’t long before Joel was complaining and telling us that he didn’t need help. There was a tension in the house that was present for a long time and we would feel it the moment we came through the door.

There were a couple of incidents where Joel became totally out of control. The first time he was upset because he was not able to use the computer because his sister was using it. Aprille had been hired to work in Japan and was busy making arrangements. Joel, being upset with his sister, actually started to hurt her hand and when she got upset their older brother Adam stepped in to protect his sister, telling Joel to leave her alone. This upset Joel even more and he got into an altercation with his brother. Due to the weakened condition that he was in, it did not take much for Adam to subdue his brother. It was so sad to have to see Aprille and Adam have to deal with Joel in this way. By Spring of that year Aprille left for her job in Japan. It was easy to see that the situation with Joel was taking its toll on her. When Aprille had been gone about 2-3 months, I asked Joel if he missed his sister and he replied “No”. Six months later I asked him again and that time he said “Yes, I do”. For Aprille it was probably the best thing she could have done.

In May, which was approximately ten months after Joel had been admitted to hospital, we noticed that Joel was becoming depressed and even more irritable. One Saturday morning we were preparing for the wedding of one of our God-daughters. Joel came into the room, where I was ironing his shirt, at which time I told him he needed to take a shower and get ready for the wedding. He told me he didn’t want to take a shower and when I repeated that he had to take one, he grabbed the ironing board I was working at and threw it across the room. I picked it up and put it back in place. Then I tried to calmly explain to Joel that he had to get cleaned up if he was going to go to the wedding. Again he grabbed the board and threw it. At that point his Dad entered the room to see what the commotion was about. When his Dad told him his behavior was unacceptable he got into a physical altercation with his Dad. Again, in his weakened state he was not a match for his Dad. As he made a quick exit out of the room he grabbed a candlestick holder off the fireplace mantel, turned and hit his father in the forehead with it. He then tried to grab a heavy dish off the coffee table and was about the throw it at the big window in the room when his Dad stopped him just in time. He had to literally pin Joel down on the floor in an effort to get him under control. After a few minutes he asked Joel if he was ready to behave. Joel told him that he was not going to the wedding and that he would destroy the house while we were gone. He continued to struggle with his Dad. It was at this point that my husband told me to call the police. Joel was out of control.

It was the hardest thing I have ever had to do as a mother, but I knew I had no choice; there was no way of knowing what he was going to do next. He was out of control. After calling the police, I called our son Adam. Joel has always listened to Adam even when no one else could get through to him. After the arrival of the police and Adam, Joel seemed to calm down, but was claiming that his father had thrown him across the room. The police could see the blood on his father’s forehead and tried to talk with Joel, but he was in a very agitated state. One of the officers’s told me that he was worse then they originally thought and were going to remove him from the house. They then wanted to warn me that they were going to have to put him in handcuffs. I can’t even express how terrible it felt to see him that way. They then put him in the back seat of a cruiser and they spoke with him there. The officers agreed that his brother Adam would take him over to their brother Keith’s house and he would stay there for the next day or two. It was an absolutely heartbreaking time. The following Monday we took Joel in to see our family doctor and explained to the doctor what was going on. After talking to Joel he decided to put him on an antidepressant. Joel was already on eleven different types of medications since being discharged from hospital so this added another one to the list. After a few weeks we started to notice Joel’s mood started to improve; the medication was making a difference.

During the time Joel was living at home with us, I had a difficult time finding some type of support as far as rehabilitation for Joel was concerned. When he was discharged from Parkwood, we were told we would be able to find services in our own county. The best we could do was the Outreach program. There were no specialized programs for anyone with an acquired brain injury in Lambton County. It was through doing some research of my own that I discovered the Dale Brain Injury Services in London, Ontario. Their objective is to work with their participants to help them maximize their potential for independence and reintegrate them into their community. This was the goal that Joel had set for himself. There was a waiting list, but by March of 2007 Joel was accepted into the program. Four months later it was felt that Joel was ready to live independently. Joel was happy to have achieved his goal is such a short amount of time. He moved into a house in London and lived with some students from the university. He continued to receive visits from a support worker from the Outreach Program in London.

Over the next year and a half both of Joel’s older brothers got married and his sister Aprille was still working and living in Japan. They went on with their lives and it was probably the best thing for them. Although one of the toughest things for Joel has been watching his family and friends go on with their lives and all his plans had come to a grinding halt.

Watching our other three children move ahead has been good for both of us, but as Joel’s parents, our hearts break for him. Joel may have a brain injury, but he knows exactly everything he has lost. As his parents, all we wanted to do and still want to do, is make everything right for him. We could not have dealt with all that has happened to Joel if it were not for his brothers, sister, extended family, and friends. You try to pull from an inner strength, that we all have during some of the toughest times in our lives, but sometimes that’s not enough and that’s when it helps to have others to talk to; especially other parents who are dealing with the same type of situation. I work as a Secondary school librarian and I will never forget having a teacher, that I had once worked with at a previous school, stop in to see me. Her own son had been in a car accident and was also an ABI survivor. I knew she had a good idea what it was I was dealing with. Naturally, when she asked me how I was doing, I smiled and gave her the same answer I gave everyone, “Joel was really coming along.” She looked and me and smiled saying,” I know what you’re doing.” When I asked her what she meant, she said, “You slap that smile on your face and tell everyone everything is fine, I did it myself all the time”. I have to admit she was right, but for me it was the easiest thing to do. You really don’t think people want to hear about everything your dealing with and sometimes it was just easier to fool myself and everyone else into believing that everything is fine.

Life was a struggle for all of us, but where to go from here? We were living day to day and dealing as best we could. For me a turning point came when my younger sister Pat invited me to go on a trip with her. Basically, my brother-in-law Pete was giving me his ticket to go on an Alaskan cruise. It is one of the nicest things anyone has ever done for me. The idea of going away on a holiday was not even anywhere on the radar for me. It did not even occur to me that a trip, and getting away for a while, was just what I needed. We were only gone for ten days, but it was a turning point for me and my husband. The trip gave me the time and space I needed to get refocused on my life and my marriage. My husband and I had become so focused on Joel and everything that was going on that we lost sight of each other, even after 29 years of having a truly, happy marriage. It is very much like when a loved one dies; everyone deals with it in their own way. We were both mourning the loss of the son we had lost and were trying to get to know and love the new personality that had come into our lives so unexpectedly.

July 11, 2008 will mark four years since Joel acquired his brain injury. Joel is not the same person he was four years ago, but over the past four years we do see more and more of the old Joel. He will never be the same exact person that he was, but interestingly enough there are things about Joel that we actually enjoy more now then ever. Changes include a greater appreciation for his family and a greater appreciation for his grandmother, aunts, uncles and cousins too. They have all been so good to Joel and his immediate family and he recognizes that fact and shows his appreciation on a regular basis. The other day he called his Dad and asked him, “Do you know what an awesome brother you have?” His Uncle John, who is a fishing enthusiast, had given Joel an “Ugly stick” which apparently is some type of awesome fishing pole. His uncle and aunt live nearby and invite him over for dinner every now and then. They are always there for Joel whenever he needs their help, just as all his aunts, uncles and cousins are. Things that may seem minor to others, such as his cousins inviting him to watch wrestling with them on TV or asking him to be the goalie for family hockey games at the local arena, mean more to Joel and his immediate family then they could ever know. When Joel is happy, he reflects that happiness onto everyone he loves, including his own immediate family. They are all instrumental in helping us cope with the situation and the majority of the time they have no idea how much.

About a year ago, Joel also became a member of the Cornerstone Clubhouse in London Ontario. Cornerstone is a community-based day program for people living with the effects of an acquired brain injury. He has taken up wood burning at the Clubhouse and puts a lot of thought into different projects that he has produced for his Grandmother and various aunts and uncles. He has also made a true effort to get his life back on track by applying to a security company. He was tested and hired by the company to work as an occasional employee. Though he has only worked a few shifts up to this point, it has helped Joel in a huge way when it comes to his self esteem.

There is also a financial stress that comes along with being disabled and unfortunately the monthly amount that the disabled receive from ODSP (Ontario Disability Support Program) is not enough to cover rent, utilities, food, transportation, and other financial commitments Joel had previous to becoming an ABI survivor, like his student loan. Joel worries that he will never be able to get ahead in life and that he will never be able to afford a home of his own. Naturally, we do as much as we can, which in turn puts a financial strain on us and of course more stress. Yet, when we stop and think about the doctor’s original prognosis for Joel, we can’t help but be thankful for all the things that have gone right for Joel. Life is a daily challenge for him and his family, but that is the keyword “family”. Joel is grateful for his and we, his family, are grateful every day to still have Joel with us.

Family Life And Brain Injury

Jamie Campbell,
MBA, M.Ed., RRP,CCRC,CCC,CCLCP

Brain injury continues to be one of the leading causes of death and disability in North America (Greenwald, Burnett &iller, 2003). It can happen to anyone, young or old, during a variety of activities. Brain injury can have life altering changes on the person injured, and is now recognized to cause significant distress and change for the family and friends of the person injured.

In Ontario brain injury occurs at a rate of approximately 18,000 per year (Ontario Brain Injury Association, 2004). In Canada, it has been reported that approximately 50,000 people per year are hospitalized with brain injury (Newfoundland Brain Injury Association, 2002). In the United States, the annual incidence of brain injury is estimated at a rate of 250-300 per 100,000 population or 1.5 million per year (Campbell, 2000). At this rate, the city of London, Ontario alone may have more 750 brain injuries per year.

Approximately half of brain injuries are reported to be caused by motor vehicle accidents, and 80% are reported alcohol related (Newfoundland Brain Injury Association, 2002). Twice as many males as females experience brain injury. More than 50% of people that experience brain injury are men between 15 and 30 years of age. More than 50% of the people that experience brain injury are under the age of 20 years.

However, it is not just young males with risky behaviours that experience brain injury. Each year over 5000 children in Canada experience brain injury from bicycle accidents. Brain injury can happen to an elderly person while falling down the stairs. Brain injury can happen to both genders, young or old, in a variety of settings. Brain injury in Canada is a significant issue, for people with injury, families, friends and others trying to provide their care.

Although brain injury is typically classified by level of severity, injury to the brain can affect control and monitoring of physical, cognitive, behavioural, and emotional functioning (Newfoundland Brain Injury Association, 2002). The brain controls heart rate, breathing, blood pressure and swallowing, and injury to the brain can be life threatening.

One of the functions of the brain is to help assess what is going on outside of the body, so that the person can act and interact in their environment. The brain helps to assess what is happening, to process this information, to compare this information to similar experiences encountered, to decide which action to initiate, to carry out the intended action, to monitor and assess the action, and to store the results into memory for future use. Injury to the brain can affect these functions (DePompei, Blosser, Savage & Lash, 1998) and affect how people behave, including how they behave and interact with family, friends and other caregivers.

Practitioners in the hospital and community rehabilitation environment are familiar with the course of events after a motor vehicle accident brain injury. People with brain injury, and their families, typically experience the process for the first time. After injury the person injured is usually transported by ambulance to an acute care hospital. They may undergo surgery but are soon transferred to a rehabilitation hospital for more in patient care and therapy. After multi disciplinary in patient treatment, people with brain injury are discharged home. Once home, community rehabilitation providers start to treat and interact with both the person with injury and their family. Family members may or may not be ready at this stage, but are often required, to provide care to people that have been injured.

When brain injury happens to a loved one, family members can find themselves struggling to cope with the impact the injury has on their own lives. For example, brain injury to a pre accident academically gifted child who now has difficulty doing basic arithmetic, can have significant impact on the emotional or psychological well being of a parent.

Brain injury to the sole breadwinner of a family, can cause family members stress and worry over how the family will financially support itself (Williams, 1991). In a single income family, a pre injury stay at home mother may be required to re-enter the work force and become the breadwinner for the family. Pre injury plans may need to be modified and family members may need to learn new ways to survive. Family members often need both the capacity to provide care to the person injured, and ability to adjust their own lives.

The family member without injury, may not have the skills needed to return to the work force. They can now be faced with the task of preparing for work while trying to deal with their own emotional, providing care to the injured person, all in the midst of family dysfunction. The situation is often not easy for families to deal with.

Researchers have documented that there is long term psychological distress for families after brain injury (Lezak, 1986; Gan & Schuller, 2002; Muray, Maslany, & Jeffery, 2006; Gan, Campbell, Gemeinhardt & McFadden, 2006). Families can experience denial, guilt and anger after brain injury to a family member. The family may question why the accident or injury happened to their family? The feelings and emotional turmoil that families experience, can go on for years after injury. It is clear that the injury affects not only the person that has experienced injury, but often affects many if not all members within the family. Researchers have reported that individuals with brain injury, their mothers, spouses, siblings and the family unit, all have more family distress after brain injury as compared to norms (Gan, Campbell, Gemeinhardt, & McFadden, 2006).

Following brain injury, there may be persistent behavioural changes to the family member with injury. The person may not respond to treatment as fast as or as well as hoped and families can question their own adequacy as caregivers. Family member can blame themselves for lack of progress or outcomes. Care for the person with brain injury is often provided by parents, spouses or other family members, who may not be well prepared to provide care.

There may be anger directed at the family member with brain injury. There may be anger at other family members, a spouse, a child or a sibling, who may not be coping well with losses and changes in the family system. Family members may not function well individually, or the family as a whole may not function well. Brain injury can affect the entire family system.

Denial is often present after injury. As an emotion, denial can be helpful and harmful to families. Some families that deny potential for negative outcomes may put forth extra effort to access resources for the injured family member. The extra effort may help the family member reach maximal recovery. However, for families that deny permanent impairments or significant post injury changes, denial can cause families to have unrealistic expectations for the future. The emotional distress can promote prolonged family dysfunction.

Role changes often occur within the family system. Pre injury, parents typically expect children will become more independent as they mature through teenage years. However, after brain injury parents may be required to provide much longer term care to their children than they had planned before the injury. Some parents may need to alter their retirement plans, in order to provide care and support to their children. Expectations and roles for siblings may change after injury.

Care giving needs can restrict families from pursuing their own activities. Family members may need to alter their pre-injury lifestyle. Supports that existed pre-injury may disappear. Families may become socially isolated after a family member experiences brain injury.

In Ontario, families providing care to a family member as a result of an automobile accident, may receive insurance funding to do so (Government of Ontario, 2008). Some families may even be able to recover financial cost of providing care through the tort system. This “benefit” can provide some financial relief to families caring for injured family members. However, even with attendant care benefits and tort recovery, after brain injury many families can face emotional distress, financial hardship and family dysfunction.

After having provided case management and counselling in the Southwestern Ontario rehabilitation community for several years, I can offer that in recent years, access to information and availability of services to help families after brain injury has improved. However, for some families, for example those that fall through the cracks in the system or those in rural communities, there can still experience lack of access to information and support services. Some families continue in distress with little help.

After brain injury, some families learn to cope well. They make adjustments and they learn to function. Other families are not as resilient or lucky. Some families do not remain intact and some struggle with ongoing family discord (Williams, 1991). One partner may decide to leave. Some parents may not be able to cope with the intensive care giving needs. Relationships between partners and children can be forever changed. Relationships between parents and non injured children, and relationships between siblings can change. Families are often faced with altered relationships and ongoing stress.

Counselling for families and individual family members can be helpful after brain injury (Kosciulek, 1995). I have observed in my own case management and counselling practice, that counselling has helped many families after brain injury. Published clinical guidelines (Muir, Rosenthal, & Diehl, 1990) suggest that families may require counselling help with anxiety and guilt, and to recognize their self worth and competence. Families may need to learn to use their individual strengths and to draw on each other for support. When needed after brain injury, counselling has the potential to help some families cope and rebuild their lives.

However, some families may not been ready to deal with the potential emotional pain that can come with counselling. They may prefer to try to continue to meet their own needs and to function independently, in spite of the distress that they may be experiencing.

The issue of whether to involve the family member with brain injury in family counselling needs to be addressed (Kosciulek, 1995) by the family and counsellor. If the family member with injury is able to participate in counselling, can explore, gain insight and understanding from the counselling, then involving the family member can be helpful. Some family members may need individual counselling, to express and explore issues too difficult or uncomfortable to divulge in family groups. Group processes can be helpful, but individual counselling to family members and the person with injury, may also be required.

Families may require help to develop appropriate support networks in the community. The London Brain Injury Association (2008) has received 2 years of funding to offer monthly support groups to survivors and families in a number of locations in Southwestern Ontario. This community support can be tremendously helpful to families with brain injury. Many health providers in the many community rehabilitation agencies, psychologists, psychotherapists, counselors and social workers, are often prepared to help families deal with changes after brain injury.

Counselors can help families develop peer and natural supports. Without taking anything away from the professionals providing rehabilitation care, some families can benefit more from families that have dealt with similar experiences and challenges who are willing to share their knowledge. The families that have struggled, and those that have survived and grown, may have the potential to help families in need.

After brain injury, once survivors and families have had a chance to grieve and adjust to their loss, families learn to create and tell new stories about themselves. In spite of their ongoing distress, they develop new scripts and schemas, learn new ways to cope and function. Families learn to care and interact with the person injured, with other family members, and within their communities. They continue to live and love. Families create new histories as they provide care and go about their lives. The experiences they encounter create new understanding. For people with brain injury that have survived, and for their families, life is dynamic, not static and will continue to change.

References

Campbell, M. (2000). Understanding traumatic brain injury. Rehabilitation for traumatic brain injury: physical therapy in practice and context. Toronto: Churchill Livingstone.

DePompei, R., Blosser, J.L., Savage, R., & Lash, M. (1998). Special Education IEP Checklist. Wake Forest: L & A Publishing.

Gan, C., Campbell, K.A., Gemeinhardt, M., & McFadden, G.T. (2006). Predictors of family system functioning after brain injury. Brain Injury, 20, 587-600.

Gan, C., & Schuller, R. (2002). Family system outcome following acquired brain injury: clinical and research perspectives. Brain Injury, 16, 311-322.

Government of Ontario (2008). Insurance Act – Ontario Regulation 403/96: Statutory Accident Benefits Schedule – Accidents On or After November1, 1996. Retrieved May 6, 2007, from http://www.e-laws.gov.on.ca/html/regs/english/elaws_regs_960403_e.htm.

Greenwald, B.D., Burnett, D.M., & Miller, M.A. (2003). Congenital and acquired brain injury: 1. Brain injury: epidemiology and pathophysiology. Archives of Physical Medicine and Rehabiliation, 84, 3, S3-S7.

Kosciulek, J.F. (1995). Impact of head injury on families: An introduction for family counselors. The Family Journal: Counseling and Therapy for Couples and Families, 3, 116-125.

Lezak, M.D. (1986). Psychological implications of traumatic brain damage for the patient’s family. Rehabilitation Psychology, 31, 241-250.

London Brain Injury Association (2008). Support Groups. Retrieved May 6, 2008, from http://www.braininjurylondon.on.ca/index.php/SupportGroups/Index.

Muir, C.A., Rosenthal, M., & Diehl, L.N. (1990). Methods of family intervention. In M. Rosnethal, E.R. Griffith, M.R. Bond, & J.D. Miller (Eds), Rehabilitation of the adult and child with traumatic brain injury (2’nd ed.; pp. 236-247). Philadelphia, PA: Davis.

Murray, H.M., Maslany, G.W., & Jeffery, B. (2006). Assessment of family needs following acquired brain injury in Saskatchewan. Brain Injury, 20, 75-585.
Newfoundland Brain Injury Association (2002). Brain Injury. Retrieved May 22, 2002, from www.nbia.nf.ca.

Ontario Brain Injury Association (2004). Ontario Brain Injury Association. Retrieved 2004 from www.obia.on.ca.

Willliams, J.M. (1991). Family reaction to head injury. In J.M. Williams & T. Kay (Eds.), Head injury: A family matter (pp. 283-297). Baltimore, MD: Paul H. Brookes.

About the author:
Jamie Campbell is Director, Rehabilitation Services, at Rehab First Inc. He has been providing case management, counselling, vocational rehabilitation and future care cost services to the legal and insurance industries since 1981. He has significant experience helping people and families that have experienced acquired brain injury, spinal cord injury and psychological distress. His full curriculum vita is attached with this report. For 16 years, Mr. Campbell was the President of Associative Rehabilitation Inc., a disability management firm that provided various rehabilitation and medical services across Canada and the United States. He was employed as Vice President, Insurance and Institutions, at Aetna Health Management, a subsidiary of the insurance company Aetna Canada. He has graduated with the M.Ed. (Counselling Psychology), M. Ed. (Educational Psychology/Special Education) and M.B.A. degrees from the University of Western Ontario. He has completed training seminars and graduate level courses in case management, rehabilitation, research, assessment and counselling. Mr. Campbell is a Canadian Certified Rehabilitation Counsellor (CCRC) through the Commission on Rehabilitation Counsellor Certification (CRCC), a Registered Rehabilitation Professional (RRP) designated by the Canadian Association of Rehabilitation Professionals (CARP), a Canadian Certified Counsellor (CCC) through the Canadian Counselling Association, and holds the Canadian Certified Life Care Planner (CCLCP) designation through the Commission on Health Care Certification (CHCC).

Awareness Videos

Awareness Videos

Survivor Voices

Please Don’t Take It Wrong!

“In my eye appointment today, I learned something interesting. Apparently, I blink extremely infrequently, The doctor suggested that lots of people must think I’m staring at them. That may be the answer to why so many people are very annoyed with me for no reason that’s understandable to me. I suppose that could unfortunately mean that in addition to telling people that I’m a crackpot with unreliable information retrieval ability, I’ll have to also say that I’m inadvertently blinkless. Good grief!!”

When I stare at you, please don’t take it wrong!!

– Marilyn Macmillan

Janko Stukic’s story

On Saturday, January 17, 2004 Janko was out with some of his friends in London after coming home for the Christmas holidays from Fordham University in New York, where he was attending on a full soccer scholarship.

It was the night before he was to fly back to New York to resume his studies when the car he was in hit a patch of black ice and spun out, crashing into a telephone pole. Unfortunately, the point of impact was precisely where Janko was seated in the back seat.

Although his memory of that night is gone, Janko thinks he saw the pole coming because he turned his head and hit the headrest of the seat in front of him, smashing the bones in his face and skull. He also sustained a stable fracture of the C2 vertebra and his pelvis as well as a broken right ankle.

He was rushed to the hospital with a Glasgow coma scale rating of 3. The doctors were not optimistic about Janko’s survival. They told his family that if he survived the first 48 hours, then they’d talk about what steps to take next. He did survive and after much discussion, it was decided that Janko would require surgery for the compound fracture of his femur, which was worrisome because it had broken through the skin and there was chance of infection.

Janko survived that surgery only to have another to alleviate his inner cranial pressure by removing his forehead bone. This entire trauma resulted in a traumatic brain injury and it has changed Janko’s life significantly. Before the accident, Janko was extremely active playing basketball, football and his favourite, soccer. His relationships have also changed.

His relationship with his mother has strengthened because the love and support shown to him by his mother and family in general motivated him to keep going. However, he says that 95% of his friends prior to the injury have moved on, but he says he has made new friends that are more understanding at Cornerstone Clubhouse and in the brain injury community in general.

Janko says that he is most proud of returning to Fanshawe College and obtaining a certificate in General Business and his new responsibilities as the Member who oversees The Scene publication at Cornerstone Clubhouse. Janko is motivated by his desire to keep improving and proving wrong the people who doubted his capabilities .

Instead of playing sports, which he can no longer do, Janko spends his time volunteering at the Brain Injury Association of London & Region once a week and he spends time at the Clubhouse twice a week, attending the Wellness group and the outings with other Members to shoot pool every other week. Janko also spends an evening and an afternoon with a rehabilitation counselor, or as Janko likes to call him, a leisure buddy.

Despite everything Janko has gone through, he enjoys all the things that he is currently involved in and he is no rush to change, however he does understand that he needs to make a couple of very important decisions to determine where his life will be in the future, but one thing he is certain about, he enjoys being alive!!

Remember To Buy Bread

We need to buy bread and are kerfuffled by the meaningless of the advice we are given by caregivers as a guide to doing this simple task.

Rote is a way of learning by endless repetition. It is also a homonym for ‘wrote’. Rote is enacted by repetitive verbalizing, thinking and writing.

For those of us who are struggling with a degree of difficulty to retrieve information from our brain, we are advised that ‘rote’ helps us do that. That may be a fine thing to tell us, but it can be tediously boring. We can say ‘bread’ many times, we can write it out many times, and visualize paying for it at the store many times. This process can be so tedious that we wonder whether it really matters if we do get bread.

Since pencil makes the best memory, we are also advised to write it on paper, but that presents a problem. We can easily lose the piece of paper or forget that we have it to look at when we’re at the store. We are, thus, caught between a rock and a hard place by trying to carry out the advice of rote and list.

However, there are ways we can look at such types of advice to help our memory.

They are:

ROTE: Everybody, no matter how severe their brain injury, remembers the alphabet. That is because it has been etched in our mind by endless repetition, by repetitive singing of the alphabet song and by writing it out in sequence many times. Knowing the alphabet proves to anybody that rote does work!

LIST: We can carry in our pocket or purse a small blank notebook. This notebook can be used to record anything we want to remember to do. When we get to the store for our bread, we can look at our notebook and easily find what we wanted to buy at the store. When we buy it, we can cross it off our notebook so that we don’t foolishly end up buying bread later on in the day.

CUE: There is a type of memory that’s not particularly discussed. That involves visual memory. When we know we need to buy bread, we can visualize ourself at the store, picking out the bread, paying for it and putting it away where it goes at home. That visualization works. We are essentially cuing ourselves to what we need by what we see.

Thus we have solved our problem of remembering to buy bread. We can repeat it by the rote method, we can list it by using our notebook that is always with us, and we can give ourselves a cue by visualizing getting it.

While these words are focusing on buying bread, the same methods work for anything. Once you try it, you will be successful.

There’s no such thing as a problem that can’t be solved. Whatever you particular problem as a result of your brain injury, write in and you will receive advice of how to compensate effectively. Once you get into the swing of doing things you want when you want, your expectation of doing so will escalate tremendously.

With a positive expectation, most humans can do things. This is shown by the rhyme that goes: “I think I can, I think I can, I think I really can. I can do most anything if I only think I can. I knew I could, I knew I could.” It’s not whether you win or lose, but how you play the game. Play your game by trying things until something works! If you don’t try, you don’t succeed! Even though we’re not a judge, we can TRY!

Of interest, we should realize that the methods that are called rote, list and cue are used by anybody to remember anything. They are also the way students are taught by teachers to remember and babies are taught by parents to remember. With understanding that it actually works, we can be our own teachers!

– Marilyn Macmillan

I was asked to write about what it is like to be Lincon’s caregiver. First, I must tell you a bit about my son. Lincon was born October 13, 2016 and was the most beautiful baby. As he grew, he met all his milestones right on time. He loved to play outside, colour and play ball. He was the perfect baby in every way.

Things changed for us on December 22, 2017, when he was 14 months old. Lincon was not acting his usual self while he was at daycare. He had a seizure and was rushed to the hospital where it was discovered he had a brain bleed. Lincon had to have an emergency craniotomy. We were awfully close to losing lincon, thankfully that surgery saved his life.

This was the start of a long and never-ending journey of learning how to care for lincon and his new needs. Lincon has many disabilities as a direct result of his brain bleed. Most days I feel like a mom, a nurse, and a therapist. I am his main care giver, and I am responsible to do physio with him and ensure he gets all his meds. I do this day in and day out some days it is exhausting. This has been our new life for three and a half years now. Your whole world changes when someone you love has a brain injury.

Lincon is in a wheelchair full time because he has right side hemiplegia. I Do not have a lift for him, so I do all the transfers. Lifting him in and out of the tub is by far the hardest. Lincon is about 40lbs now and he is still growing. We use his walker daily and he has made some gains with it but mostly uses it for standing. Over the years Lincon has made some gains with his motor skills. Two and a half years after his brain injury he started to sit with some assistance. Now he can sit in a w position with no assistance. He can go from laying to sitting on his own but does not have the ability to stand on his own due to the right-side hemiplegia.

For a long time, it was a goal of mine to help lincon learn how to eat again. It would take me over an hour to feed him half a jar of pureed food. It just was not enough to sustain him. Then with his increasing seizures he seemed to have less and less interest in eating. I know he is getting the food he needs through his g tube so now we just have food for fun. On a good day lincon can only manage a few bits. However, he has recently learned how to drink from a straw, he may only drink half an ounce but is a skill we will continue to work on. Practice makes better but not perfect! We always stride for better.

Lincon has a g tube for all his nutritional needs. When I first learned how to set it up, run a feed and give meds I was always so fearful I would do something wrong. Now it is second nature to me. To us Lincon’s g-tube has become normal. I push his medication through a syringe 3 times a day and I have had this routine for over 3 years now. Everything Lincon eats and drinks goes through his g-tube. I set the pump up and clean it four times a day everyday. In the past I would panic when Lincon has pulled out his button. It was a trip to the emergency room every time. Now I change it at home every three to six months with out a worry. I have begun to accept that I realize that he may have a g-tube his whole life.

Some of Lincon’s disabilities I seem to forget at times. The other day we were at the doctors and they asked about Lincon’s vision because he is legally blind. He can see about 3 ft, but doctors are not sure how well he can or cannot see. Its just a habit to hold things close to Lincon for him to see them. I know that Lincon legally blind, but it was like for a moment I had forgot. When I buy toys for lincon I always buy things that have lights or make sound because of his poor vision. It become so normal for me that at times I completely forget.

I have come to accept the reality that my son might not ever have words to say I love you. All though his smile is enough for me. His laughter when I tickle him, his cry when he is upset and his yells/screams when he is excited is how he communicates. I have hoped for years he would start to learn some words. Even if his only word was mom. Its okay though because I have learned his language and I understand him. 

 The one thing that always reminded me that Lincon had a brain injury is his seizures. They are hard to manage with medications as he is on the max dose for each. Every morning and every night I give him his anti epileptic medications twice a day and his CBD oil three times a day. Despite the medications he still has seizures everyday. They started as absent seizures that were extremely hard to notice. Most people would not know Lincon’s was having a seizure if they did not know him. Then the atonic seizures started they were more noticeable. Lincon would just go limp for 10 to 20 seconds. Thankfully, these stopped with an increase of his medication. Then the clusters of myoclonic started. At first, he would have one every few days. They increased more and more until on a good day he would have 10 and a bad day 30 or more. So, his neurologist added a third medication to decrease the myoclonic seizures. We had a period of decreased seizures, but it came with many side effects. He was Tired, drowsy, had a loss of coordination and he drooled constantly. At one point I told his doctor I would not increase it any further as the side affects were too great. We had some good seizure control for a few months, but they came back like they always do. As seizures begin to increase again, we had to increase this medication to the recommended dose very. We gradually increased it over about three months. Every time we think we are starting to get some seizure control they come back. When they come back its like they are worse than before.

 It is a difficult reality I live raising a son with a brain injury and special needs. I always wished he would just be “normal” again. I wished for years that lincon would relearn some of his lost skills. I wished for so long that he would be able to eat, walk, talk, watch TV, play with regular toys, use his right hand or even tell me when he needs to use the toilet. I love my son very much. I am at a point that I am coming to terms with our new reality, but I am scared. I fear how I will continue to care for him. Some days I worry about how I will continue to care for him as he grows. No matter what I will manage, and I will adapt. I will continue to learn the best possible way to care for lincon and help him reach his full potential. Ill care for him for the rest of his life because I love him unconditionally. Even if that means my life and dreams are on hold. As long as I am physically able to care for him.

 Brain injury is very misunderstood. They range from mild to severe and are devastating to the individuals and their families. Lincons brain injury left lincon with severe disabilities. It has affected not just lincon but our whole family. I would love to see more awareness and more education about brain injuries. I will wear green for someone I love everyday this June. Let us shine a spotlight on brain injury this month! 

In June 2018 and for no specific reason, I suffered an acute stroke while I was out of town.  Simply put, I fell asleep before taking the wheel to drive home to Paris from Hamilton.  Thankfully, I managed to make it home safely after filling up my gas tank and paying for it, while stroked, with no memory of doing any of this whatsoever.

I spent 11 and 371 days in the hospital and at home recovering respectively.  My stroke was a result of a carotid dissection, a tear in one of my carotid arteries.  As a result, I lost two-thirds of my right brain permanently with no hope of getting any of it back.  At the time of my acquired brain injury, I was a semi-pro mountain bike racer and runner.  Once admitted and fully assessed at the hospital I was given a very slim chance of walking again.  But through perseverance, I am walking, riding my bike and working again.  The only after-effect I have is quadrantanopia, a lesion of an optic radiation nerve.

The main thing that inspired me the most to not let the prognosis of possibly being in a wheelchair for the rest of my life at 48 years old get me down, was how encouraging and supportive my physiotherapist Joe was.  I believe I would be in worse shape today had it not been for his words of support.  He taught me to push the limits of the human soul in order to get myself out of the wheelchair.  “Be myself, only better”, he repeated to me again and again while trying to get my legs to move and not let the stroke get the best of me.  Family support was also paramount in my recovery.  I also cherished having the opportunity to experience zootherapy while hospitalized.  Once I was home, I dedicated my time researching anything and everything about strokes.  I Googled the keywords strokes…men…vision trouble… 48 years old…etc and read as much as I could on the topic.

I knew I wanted my life back, but I realized that we don’t get what we want in life.  We get what we have to have.  So I started attending seminars, conventions and symposiums on brain injuries so I could learn and help myself get better and healthier.  Through my research and speaking with dieticians, nutritionists and neurologists, I discovered that nutrition plays a vital role in post-recovery care.  I then chose to change my eating habits and cut out most processed foods and follow an anti-inflammatory lifestyle as inflammation plays a key role in well-being.  It is my belief that through self-discipline, dedication, eating well, self-care and moral support, anyone can make the impossible possible.  I feel attending a support group was instrumental in getting me on the right path, so I highly recommend it to anyone even if you think you probably won’t benefit from sharing your story.  In closing, please remember that life is like seasons.  It won’t always be raining or cloudy, better days are always ahead.

I was 43 and had recently relocated to Saskatchewan when I acquired a severe brain injury from a motor vehicle accident. It was late afternoon and approaching dusk just before Christmas in 2003. My daughter who had just months earlier graduated from high school decided to accompany me on this work-related trip in my little hatchback. As we slowed down to the posted 80 kmph on the highway, a commercial truck proceeded across it from a side road causing me to t-bone it. Leah and I were knocked unconscious but she came to immediately while I did not. She was alert to the aftermath with both of us grievously injured and my head resting on her lap. Being trapped inside the wreckage while EMS worked for 40 minutes freeing us from the twisted metal is a memory that comes back to her in nightmares.

We were taken by helicopter to Royal University Hospital in Saskatoon where they repaired my ruptured aorta with a left ventricle bypass. During that surgery I suffered a stroke. Leah had an MRI which revealed an old acquired brain injury (ABI) during infancy when she had febrile seizures from high fever. The tell-tale sign of that old injury was seen in the prefrontal cortex. Much of it had become granular, causing learning disabilities in elementary and high school. 

Leah spent the next weeks over Christmas on a separate ward while I was in an induced coma for almost 2 months allowing injuries to heal as well as a heart bypass, surgery to my broken neck and 3 limbs which had been reinforced with metal rods and screws. Finally in early July, I was released from a nursing home and able to join Leah in a newly rented apartment near the hospital. With her own pain from a broken femur, she lugged my wheelchair up and down the steps to take me for walks in the area. I finally convinced her to return to her surgeon to look at the break over a year later. The rod that had been inserted so long ago kept the broken bone aligned but the unhealed break just swivelled around that rod. It was finally wrapped and fixed permanently.

Although I had more physical injury, Leah had the emotional trauma of being fully awake and conscious of the impact and excruciating pain, the chaos on the highway, the ensuing emergency transfer to Royal University Hospital and of her mom being kept in coma in ICU. As a divorced mother, I still consider the very worst part of this accident to be Leah’s second brain injury and emotional trauma to both of my children. Their beloved grandfather passed away suddenly while we were in hospital. Her younger sister Lynn visited weekends from our home 3 hours away but thankfully a kind family supported and encouraged her to stay in the village to finish high school. That community is tight and everyone had parts in helping us through. 

In the 2 decades since that accident, brain injury has been prevalent for Leah and I and we three have moved back to Ontario. Lynn was traumatized by anxiety and helplessness while having to fend for herself. Leah still has flare ups of PTSD from all that she has experienced since that day but we are thankful for our magnificent health care and support services available to all Canadians. She received therapy for debilitating fear of being in a moving vehicle and of hospital waiting rooms. The waiting room was representative of her grief and survivor guilt.

We have both changed considerably. Personality change is to be expected but that doesn’t necessarily have to be for the worse, just different. Although Leah was a bright student she had difficulties focusing and suffered depression all through her grade school years due to her first brain injury. ABI in childhood causes learning issues but the brain has a remarkable way of creating new learning pathways which Leah was able to utilize well. When the traumatic brain injury came along 17 years later in our car accident there were far more challenges for her but with persistence and support was able to complete a Social Science degree with Distinction at the Universities of Saskatchewan and Waterloo. She has a beautifully raised son and a career. She still struggles with poor memory, time management and organization.

I had previously worked full time at McMaster University and for Saskatchewan Social Services. I was an oil portrait artist in my spare time. I hiked daily along both the Niagara Gorge and in the Saskatchewan countryside for 15 years in my old life and now am unemployable and have to rely on a hiking walker. I can no longer climb hills or hike uneven trails but I can still walk along level, maintained hiking paths in the lovely community of Stratford. I live independently in my own home with the support of my daughters and two support workers. 

18 months before this accident, a coworker approached me about illustrating a narrative he had written. I was thrilled to work on his vividly written story starting in the spring of 2002 and I completed 3 or 4 of the illustrations before things came to a sudden halt with the ABI. I had to relearn to paint as well as activities of daily living as basic as walking and talking. A few years later I had regained enough of my oil painting skills to show solo at the Gallery on the Bridges in Saskatoon. It has been a labour of love but 19 years later I am almost finished those 12 book illustrations and we hope to produce a picture book in the coming months. Never give up – even if takes 19 years!

The most important thing I want to impart to my fellow ABI survivors and their caretakers is to really reach for those stars, even with the extra challenges. It is always worth it. Don’t expect life as usual as it will be much different. Find and be involved in a good support group for fellow survivors and caregivers. Personality changes can cause the loss of old friends or even family but know that there are so many more of us out there in their place. We certainly DO understand the complexities of a broken brain that many from our previous lives cannot. And that is okay. Sometimes it just takes the experience of surviving an ABI or being a loved one of a survivor to invest in the learning in order to come to that understanding. 

Unfortunately, the high rate of ABI will continue day after day through disease, auto or bicycle accidents and a gazillion other causes but listening and learning will increase prevention and allow all of us to live our best lives in spite of it all. Never be afraid to ask for help. It’s out there and in Canada it’s financially doable. Blessings to all of you beautiful people!

My dad; my dad has always been strong both physically and mentally. Dad served many years in the US military and completed a tour in Vietnam. Dad loved riding motorcycles and did many trips across the country with his friends. Dad was married to my mom for 20+ years and was the guy you called upon to help install your new toilet and fix your plumbing, or install your pool, or build a garage, he could fix or build anything….a real “Mr. fix it” they would say. Dad was an avid fisherman and enjoyed camping which we did a lot as a family when we were small. One of dad’s greatest joys was being a grandpa….this all changed on the night of January 24th, 1996.

I had just put the kids to bed and was settling down to watch TV and enjoy the quiet…when the phone rang and it was mom. “Dad’s had a fall and bumped his head while roller skating. The roller rink sent him by ambulance to the hospital for examination as a precaution and I will call you back when I know more.” This was odd and my spider senses were tingling because my dad would never just go to the hospital as a precaution….either you were ok or you weren’t; he said this so many times. I picked up the phone and called my friend to come sit with the kids and headed up to the hospital. 

Upon arrival to St. Joseph’s Hospital Emergency Area, I must have looked panicked stricken as my husband and I were escorted to a private room and two police officers a nurse and doctor all came in to the room. I knew immediately something bad had happened as this was not normal. But absolutely nothing could have prepared for what they told us. Dad had had a massive heart attack and was without oxygen to his brain for over eleven minutes and they were still working on him. They also advised us that we needed to prepare for the worst.  What did that even mean?? At this point I felt light headed and weak, and could only see their mouths moving but couldn’t hear or even process anything they were trying to explain. This was not real or happening, dad was so healthy this can’t be true. I am going to wake up from this nightmare…..but it was not a dream.

 For the next 72 hours my family and I spent every hour by his bedside watching him fight for his life. I remember there being so many wires and tubes, the beep, beep sounds of the life support system working to breathe for him. The doctors came to tell us after 48 hours that dad had suffered a massive heart attack and had severe heart damage that would require surgery to repair, but worse than that dad had an ABI (Acquired Brain Injury) caused by a lack of oxygen to his brain. (I didn’t even know what ABI meant at that time) They continued to say that dad would likely be a vegetable and not likely to be able to do anything for himself and require 24 hour support that’s if he survived and we should prepare and discuss as a family next steps.  When I asked what that meant, they simply stated “remove him from life support, and plan a funeral.”   I felt like I had been punched in the gut and immediately began crying….but I knew my dad was a fighter and was going to survive. He had to…

The next 3 months dad spent in St. Joseph Hospital in the cardiac care unit. He had heart surgery to repair his aorta and then when stable enough he was transferred to Parkwood Hospital where he entered the Brain Rehabilitation Unit where he/we would spend the next 15 months. At the time of dad’s admission to Parkwood dad thought I was 12; my sister 10 and my brother 7. He had lost 15 years of his short term memory.  Dad couldn’t remember he had 4 grandchildren or even recognize their faces when shown a photo. Dad slowly learned how to speak, read, days of the week, months of the year; then the tough part….walking, dressing and shaving and all the activities of daily living that that we all take for granted.   At this point we didn’t know if dad would ever be able to care for himself again let alone live alone. We took shifts working with dad every day at his rehab, going for walks, doing exercise, working on reading, hand eye coordination, eating with fork and knife and then we would spend some time talking and looking through photo albums trying to spark some memories.

At about 9 months into dads rehabilitation I would get excited when dad would remember names and dates and he was up and walking now. But the doctors and nurses always reminded us not to get our hopes up and this might be as good as it gets…..they suggested we start touring LTC Homes. When I got up the courage to do it we arrived at the first LTC I didn’t get three steps in the front door and I started crying and said to my uncle, “My dad is not living here”. I turned and left. I was not able to accept this was his fate; not now, not yet, maybe not ever. I remember the smell….It made me sick. I remember thinking; if this is as good as it gets then he will stay with me. Within a few weeks of this Dad starting remembering things like names and faces being able to read and walk alone unassisted, showering alone and becoming really stable on his feet. This was so encouraging. It seemed every day was a small milestone… life was  going to be different but dad was a fighter and was learning new skills, and coping strategies every day…as were we! We needed to remember NOT to say “remember dad” or “come on dad” Remembering that everything took extra time but it was important to give dad the time to do things for himself in his own time…..I kept thinking could he really be ok?

Fast forward 5 years; Dad was living independently in his own apartment. He may not have known how to use certain tools anymore, and couldn’t install a pool or fix plumbing, or riding his motorcycle across the country but my dad was/is enjoying life. Together we had to learn how to enjoy new hobbies and spend time together without getting frustrated if things took extra time.  Those adjustments have included doing small tasks in their entirety or doing things in a quiet space with little distractions. Some of dad’s new hobbies are walking, gardening, baking, (he makes a mean zucchini cake) reading, and golfing with his grandson…oh! And he still loves fishing…that hasn’t changed at all.

Today it has been 25 years since his ABI and things are great, dad has even traveled extensively in Europe on his own. Dad worked hard on improving his social skills, being able to be in crowds and learn how to exercise patience practicing the skills taught to him on how to remember important details.

Lastly; my dad taught me the value of enjoying today because you might not have tomorrow; to exercise and practice patience.

Dad’s famous saying….”don’t sweat the small stuff”. This has a much deeper meaning now. I try to exercise this each and every day.  

  My dad is my hero and my children are lucky to have him as their grandpa!

Sincerely: A very proud daughter…Michelle Bloodworth!

My first introduction to Brain injury happened when I was in my senior year of high school playing in a rugby match After a bone rattling tackle, all of a sudden, my vision was devoid of colour. I figured it was a combination of taking my asthma inhaler too much combined with the repeated blows to my unprotected head. I told my coach and he gave me the typical coach- like answer of “Just walk it off. I once had purple vision when I was playing rugby when I was your age”. You’ll be fine”

As it turned, out that incident was not from my inhaler, nor the many hits to my head. It was my first instance of seizure activity. I didn’t know that at the time, so I returned to the field and finished the game. After I continued to experience intermittent and unexplained dizzy spells, for the remainder of that year, my mother took me to see my doctor and after a barrage of CT scans and finally an MRI, I was diagnosed with a rare type of brain tumour, which thankfully was benign.

To keep a very long story short( trust me I could go on and on. I’ve had both kinds of brain injuries; (traumatic and non-traumatic); both kinds of meningitis (bacterial and viral); both kinds of strokes (hemorrhagic and ischemic). I’ve had 2 brain tumours (the original mentioned above and its reoccurrence); a total of 8 brain surgeries consisting of 3 craniotomies, 2 ventriculostomies, and 3 shunt revisions. I’ve had 6 weeks of radiation to prevent a third craniotomy, but although the tumour was shrinking, the cyst associated with it grew, necessitating the third and last craniotomy. In 2005, I was assaulted causing a subarachnoid hemorrhage. (The hemorrhagic stroke as mentioned above) and due to all of the scar tissue on my brain and the fact that I keloid scar, I had an ischemic stroke in 2019. Even though half of my vision in each eye is blind (a result of my first craniotomy – where the neurosurgeons “assaulted” my optic nerve, and my balance and dexterity were largely affected after I was assaulted, this most recent injury has forced me to rely on a walker because it exacerbated the symptoms from my previous injuries. These symptoms include fatigue, trouble problem solving, processing information, and feeling extremely overwhelmed in crowds and noisy environments.

After the assault, I became involved with Brain Injury Association of London &
Region (BIALR) where I chaired the editorial committee for the quarterly publication, The Monarch, using the English degree that I acquired in 2004 from UWO. I was one of the first mentors trained in Ontario for the Peer Support Program where “veterans of brain injury” mentor those who are new to the brain injury community by reflecting on their similar, shared experience. I was the survivor co-chair of the London support group with my mother (who was also trained as a mentor the same time I was). After my one and only partnership with a young man who was in a car accident, the Executive Director of the Association at the time, “promoted” me to the role of the Peer Support Coordinator (PSC) who oversees the Program in the London area and liaises with the 16 other Peer Support Coordinators from across the province to find the best match possible for partners (the ones receiving the support and mentors (the ones trained in offering support with their own lived experience with brain injury).

After the former PSC vacated the role. I soon followed in his footsteps by being BIALR’s OAC (OBIA Advisory Council) survivor representative where I eventually was elected to sit on OBIA’s board. And although my involvement with BIALR has lessened over the years, with me becoming a husband to a fellow brain tumour survivor and a father to a beautiful 9-year-old daughter, I am still BIALR’s Peer Support Coordinator (14 years and counting). It gives me purpose in my life to know that sharing my experiences with brain injury can give hope and inspiration to others affected by this cruel affliction.

Dancing in the rain

“Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain” by Vivian Greene has to be one of the best inspirational quotes I have ever come across; at least for me personally. It was 2007, I was 26 years old and little did I know a storm was brewing.

My boyfriend and I had just recently split. We shared a child who had just turned 3. I had just finished my second year in College and was one credit shy of being a graduate. I had been looking for work in the field of study with no success.  I was in a lot of debt, using some self-destructing behavior and my priorities were not right to say the least. It was Remembrance Day of ’07 and my personal chaos got the best of me. My Step Dad, (Dave) was a soldier. We were together doing the days celebrations with Mom and friends included.

Alcohol, especially then was part of the family. When there was a celebration, we drank. When things got chaotic, we drank. It was a learned behavior I picked up over the years and like I said, my life at that time was pretty chaotic. It was suggested I sleep at my parents that night. My child was with her Dad.  Eventually I agreed. I was safe and sound or so my parents thought. It was after they shut down for the night, a loud noise was heard. Mom knew something was wrong. She and Dave came down from their room to discover I had fallen down the basement stairs. I had hit my head on the concrete floor and I was bleeding out. My breath was shallow with gurgle.

Because of the fall, I was in a coma for nearly 4 days. The hospital staff wasn’t sure if I would wake up or if I did, what state I would be in. When I first awoke, I spoke as if I were 5 years old. I had lost hearing in my left side. I’d developed some facial paralysis and hadn’t a clue of the reality that lied ahead. None of us did.  I literally had to relearn how to walk, talk, and went through an abundance of therapies including, Occupational, Speech, and Behaviour therapies. It was during these therapies and doctor visits my future would be reviewed. Would I ever be able to hold any type of employment because of my deficits?  The fatigue and memory impairments were not going away. I was always told no. That answer took a toll on me, but it was what it was. This all sounds pretty grim right? Well…… therapies weren’t the easiest dance, in fact they were the hardest dances ever, but because I stuck through them and because I had a great support system, so many other dancing opportunities came my way and they have been amazing!

The boyfriend and I rekindled our romance after he vowed to (literally) take care of me for the rest of my life. We married in 2008 and are still going strong. I was determined to have enough balance to walk down the aisle. With physical therapy, it happened. My husband is my rock. We have learned to lean on each other so much through this; me on him, he on me. Words cannot even describe our bond.

It was shortly after our daughter started school that I began to volunteer. I remember it was pretty scary at first but I have always loved kids and the school was looking for help. I shared about my long-term deficits and the school accepted me for me. From there it gave me the boost of confidence that I needed to eventually explore other volunteer opportunities including the Brain Injury Association of London and Region and the Canadian Country Music Awards. The CCMAs was my favourite. With communication and determination I rocked that week. It was such an experience.  It was also that year I got to witness the birth of my niece. Who knew I would ever have the stamina to pull an all-nighter post brain injury. I then did it again 2 years later when my nephew entered the world.

Let’s fast forward to the now. It’s been nearly 13 years and I can certainly say I am still dancing. The dances are a lot easier now. I still have deficits but I also have tools that I use every single day. I know that if I meet someone new that making a visual connection or associating helps me tremendously. For example, if Amanda has pink hair I’ve learned to train my brain, Amanda with the pink hair. Pairing people also works great for me too.  Another strategy I use is arriving early at functions or events. Crowds get to me. If I arrive first, I find it doesn’t bother me as much when the “party” fills up compared to entering a party with lots of people. It also allows me to use the excuse “I’ve been here since the beginning, I think I will head home now” as an early out. For my memory issues, taking a picture is my go to and last but not least, being aware and or accepting. Being aware of my deficits and then using a tool is the best tip ever! I have learned that I do better with written instructions. If I don’t ask for written instructions I am only going to get more frustrated. I know this so I am always sure to ask for them. Using a budget sheet to pay my bills which lists which bills I have, how much they are for and when they are due. It makes sure they all get paid

Strategies, tools and volunteering are just a bit of how I got to where I am today. Because of those dances and the dance of hope and determination I’ve reached the goals I never thought possible. We bought our first home, and I found employment! Employment that I enjoy! I am a lunch lady at the local school. Never in a million years did I think that I would be able do that and here I am living my dream. I love that it is a place that is accepting of me, but also a place where I love being. Sometimes it kicks my butt but with the right planning and pacing, I get along just fine.

When approached to write this article, I didn’t hesitate for a second. I’ve written about my brain injury in the past but never the full truth was shared. I felt it was time. Being intoxicated was also something that had taken a toll on me. It left me with the feeling of guilt for a very long time. I’ve been able to let go of that guilt now. I am proud of that.

I came across the quote “life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain” after my I obtained my brain injury. It was a quote that just spoke to me and continues to do so each and every day. Some go by “If life gives you lemons, make lemonade”, etc., etc. There is just something about the storm and dancing in the rain that is just so liberating to me.  Have you ever danced in the rain? It can be quite magical. Don’t you think?

Hello, my name is Mandy Jeffery and I am going to start off this article by admitting out loud that…. “I totally suck… I will never get ‘there’; I am not trying hard enough; I should be back to ‘normal’ by now; I am scattered; I am a burden; I have lost my purpose and identity; I am broken; I am scared; I am an angry beast with a short fuse who is frustrated daily…” and the list of thought distortions goes on and on. I share these very unflattering statements so that you know that you are not alone. We all struggle with negative self talk from time to time. Following, I am going to share some insights that I have learned (and re-learned, and re-learned, and re-learned) along the way but I felt it was important for you to “see” all of me so that you can identify with the struggles and hopefully share in some of the victories for yourself. I honestly don’t have it all figured out. I teeter totter from motivation to frustration, but I continue to practise some of the following techniques with the end goal being that I eventually come to a place of balance and acceptance.

The backstory: I was in an MVA in May of 2018 that resulted in soft tissue injuries, whiplash and a concussion. It has now been over three years and I still struggle with pain and post-concussion syndrome. For those of you that have not heard of it, post-concussion syndrome is simply persistent concussion symptoms that last beyond the expected recovery period. For me, that is headaches, pain, fatigue, dizziness, noise/light sensitivity, visual and vestibular changes, cognitive issues (multitasking and memory) and mood issues (irritability, anxiety and anger etc.) As far as I understand it, these symptoms can be different and to varying degrees for everyone. Immediately after the MVA I could no longer do many of the things that I used to do. It felt like I needed help for almost everything for a while. My heart would break when my 9 year old son would say things like – “I miss it when you used to actually play with us” or “you are not the person you used to be mom” (in reference to my short fuse and irritability). Light and noise sensitivity made me feel captive in my own home at times because I could not tolerate it well for very long. My driver’s license was medically revoked and it set me on a path of complete dependence on others.

It was during this early phase that I needed to learn that asking for help was a sign of courage and wisdom and not weakness. It forced me to practice communication so I could collaborate on ideas and solutions with those around me. Communication also allowed me to have someone to share the burdens with me when I became overwhelmed and even drew a couple of my relationships closer. So lesson one for me was COMMUNICATION.

Lesson two was definitely to SLOW DOWN! I have to admit that I am STILL working on this! Many of you that have experienced a concussion have heard of pacing. Often the occupational therapist on your team will give you tools to plan your day out as a way to conserve your energy so that you can make it through your day without a crash. For me I have learned that pacing runs far deeper than simply conserving energy. I have discovered through my writing that slowing down and planning my resources also helps to manage my emotions and the ensuing guilt and shame connected when I lose control of them. When I respect my boundaries and resist the urge to push too hard (which leaves me depleted) I not only avoid crashes, but I am also far less likely to become frustrated, lose my temper, and become depressed. Also, slowing down provides more opportunities to breathe deep. We all have heard that deep breathing can reduce cortisol (which is related to stress) but did you know that it can also reduce pain, improve immunity, calm anxiety, increase energy, help you sleep AND reduce inflammation?!?! So everyone, let’s slow down and BREATHE DEEP.

Lesson three…RELEASE EXPECTATIONS! Again, I am STILL working on this one…I regularly need to re-read some of my earlier writings or have a loved one or team member remind me of this one too. We need to release all expectations of where we think we should be, or what we think we ought to be able to do, or how far along we think that we should be in the recovery process, or even our expectations of exactly how far we can make it towards being “normal” again! Instead, take the time to enjoy the small victories. Expectations set you up for feelings of frustration and depression and completely cloud over your victories. Forward momentum IS still momentum no matter how small or slow it may be. Releasing expectations opens up the opportunity to appreciate each accomplishment along the way.

Lesson four…Practise SELF LOVE. How do I do that you ask? I love myself by preemptively respecting my boundaries and by resisting the urge to push too hard, leaving myself depleted. I have come to realize this mistake leaves me defenceless to the monster that is anger. I can learn to accept my limitations without equating them to personality flaws. I can seize the opportunity to open myself up by sharing these struggles with those around me so we can collaborate on ideas and also share in the burden when I become overwhelmed. This struggle can then be transmuted into an opportunity to draw these relationships closer instead of pushing them further away! Also make sure to take time for yourself: Go for a walk in nature; work in your garden; write in your journal; take a bath…all these forms of self love can help to “top up your tank” giving you more reserves to share with those that you love. This is how self love IS LOVE!

For now I will end on this…recovery is a process with both ups and downs. You will have forward momentum, you will have plateaus and you will even hit some harder down times … that is all normal. By accepting this process it can help give us the courage to put our best foot forward.

The Recovery Process

Life

is built upon

Polarities

And cycles…

A roller coaster

Has highs and lows.

A mountain

has peaks and valleys.

A wave

has crests and troughs.

The moon

waxes and wanes.

And the uterus

menstruates and proliferates.

Recovery is

Absolutely no different.

It cycles between:

motivation and frustration

pride and pity

hope and despair

achievement and defeat

confidence and doubt.

Embrace the cycles

Both highs AND lows

Accept them

as part of the journey

Do not judge them

nor attach any shame.

Do not fall victim

To the single dimension

Of just surviving

To avoid the lows.

It is a flat plane

That will bring you

limited accomplishment

limited opportunity

for growth and joy

And little appreciation

For how far you have come

Or how high

You can truly reach!

With Deepest Love and Gratitude,

© Mandy Jeffery

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