**The following stories are the stories of acquired brain injury survivors. They do not reflect the views or opinons of the Brain Injury Association of Waterloo-Wellington. This page is for them to tell their story as they experienced. We recommend that all seek both medical and legal advice. If you need resources along your journey please email us at firstname.lastname@example.org.
A Long Story - Over A Short Period of Time
By Erik Star
2 vehicles on the road: a green station wagon and 1 Kawasaki motorcycle both waiting for the red light to change. On the right side, just ahead is a long cedar hedge with many houses with hidden driveways. This is a road that I have ridden many times and I am going home on a sunny Sunday and on the open road. 3 weeks into my apprenticeship as a studio photographer, finally my life’s dream coming true. Life is good now!
Waiting for the green light I see a van, about 200 feet in front of me in my lane, back out of one of those hidden driveways, and then just sit there without moving. Curious action I note, to back out onto a highway and not move, simply sitting there. That’s against the law. I’m suddenly quite much more alert! The light turns green and I move forward, while the car beside me hardly moves. Shoulder-checking I change lanes into the passing lane and the van still sits there. Mild alarms go off louder and I decide to pass and this scene behind. I am 100 feet away when the van’s left turn signal starts flashing, as I get closer it swerves left into my path. I head off to an opposite driveway on the left hand of the road but the van keeps cutting in front of me. I am trapped. I continue to move further to the left and to the safety of the driveway but the van still cuts in front of me. I’m about 20 feet away and I see the driver, with long black hair look over her left shoulder as I crash into the van’s side right behind the driver’s door.
Darkness has arrived and I can’t understand why I’m sitting on the roadway hearing people running out of their houses. Someone says, “lay on your back,” but knowing some basic first aid, I don’t since I’m now spitting up blood. I can’t feel my bottom teeth and I believe they are knocked out. Then a heavy gob of blood wells into my mouth and now I’m scared about internal injuries. I gutturally exclaim for someone to call an ambulance and my wife. No one moves and as people leave I decide that I’ve had enough of this nonsense and try to get up using my arms to push myself off the ground.
Good GOD the pain in my left forearm sends me into sweating and wondering how badly hurt I am. “This is enough”, I say to myself turning onto my side and into a curl so I don’t swallow any more blood and I wait for help to arrive. Damn losing my teeth is really unbelievable.
Finally a fire truck arrives with one of the firemen asking me questions and then telling me to roll over on my back. I refuse. He explains that he’s checking for neck injuries since I went head first into the van. He tells me further that I’m lucky that I’m in a no smoking zone. He further explains to me that I am soaked in gasoline and the road is doused with it since my cap flew off. One spark and I’m a burning, human candle in this new darkness of my life.
Fast-forward to the hospital.
The right side of my face is smashed in. My jaw is broken in 2 places, and my teeth are now missing since my lower jar has dropped down. I also received a multiple left forearm fracture and a right/wrist fracture, multiple bruises, soft-tissue injuries and a concussion. To top it off no one could tell me if I’d keep my right eye which was also injured. My future dreams are now shattered. I think suicide, start reliving the accident with nightmares of blood flying all over the place and now I am on the journey of living on prescription drugs. Talk about excruciating, hair-pulling, vomiting, head-banging pain and the doctor only prescribes enough morphine for 4 hours. The day later my wife raises hell and finally I get some relief.
Short and long term memory losses came and went and the emotional turmoil tore me up. What was the point in finally achieving my life’s dream only to loose my eye and never be able to shoot again? Where was the justice, fairness and the need for this? I cried constantly and not able to understand anyone elses needs.
Stuttering is all I could do; I could no longer able to speak properly. My bad knee simply gave out whenever it felt like it. A throbbing right hip and multiple soft tissue injury made me feel as if every day I was being hit by the same train, each and every day, and the never-ending pain bringing me eventually 18 years of chronic pain.
Orthopedic surgeons, specialty doctors, a neuropsychologist, and others worked on me. The physical pain dulled down at times but I couldn’t move properly, walk, bend over, or sleep. In 1984 there were no support groups and my wife and I were simply on our own to deal with this.
No one understood because my injuries weren’t seen any longer. I started to understand after a while that no one really cared. And why should they? It was me who hurt and not them. I just kept on seeing the doctors until I was finally told to learn to live with the pain. Prayers didn’t help. I didn’t believe in any kind of God’s ‘big plan’. That was a fact of life, just theology to talk someone into believing, into simply easing the daily life on this planet. No one could help. My wife then became over-whelmed, but didn’t give up; however after a long while friction set in, bringing fire and smoke and upheaval with frustrations never before experienced by us.
I didn’t accept my doctors verdict to learn to live with this be who I am now. I simply wouldn’t accept this. I started exploring alternative medicine. I discovered biofeedback which helped me understand the state of my body, its tensions and my relaxed states. I found a chiropractor who helped relieve my extreme neck and head pain. I started looking for other alternative solutions. I found through sources a Chinese doctor who impressed me by analyzing me and telling me my symptoms without me telling him anything. He stuck 28 acupuncture needles into me, twisted me like a pretzel and gave me a ‘stinking’ Chinese medicine to drink. It started to work. I was healing. Over the years I have tried Naturopathy, Osteopathy, Homeopathy, psychics and mediums. Some worked others didn’t. My mainstays were the Chinese method, chiropractic, physiotherapy and massage.I took up swimming every day which started to help. I then started to work out in a gym and also discovered self-hypnosis and meditation, along with other stress-reduction therapies. I slowly calmed down, and then swam, until I could do 126 continuous, non-stop laps, end to end. I was healing in some ways, but now the social and cultural pressures started to appear: Without money nobody went anywhere. Yet here I was still without a job and no rent money, no money to buy food and pay for medicine and no supports. The financial stress started. The insurance company wasn’t going to give me any money, even though the other driver was at fault, when he was found 3 years he was charged and admitted to guilt.
I needed to pay rent, buy food, and pay for medicine. My Studio boss let me go because I stuttered and on drugs my hands shook, I acted drugged, and therefore I couldn’t perform. I was now totally broke and still scared. I didn’t know how we’d get out of this since my wife also wasn’t working while looking after me. I needed a miracle.
That Chinese doctor really turned things around and as time went on I stuttered less, I could walk mostly without stumbling, enough to find a part-time job at Eaton’s selling travelling baggage, which didn’t thrill me but I was used to new jobs and learning quickly. Someone informed me about a job working in the technical sales department where I’d be selling photographic equipment and electronics. My photography background helped me land the job. Even though it was only part time, that’s all I could do for the moment to fulfill my dream and a life-line which I grabbed.
Still on pain medication I couldn’t think straight and made mistakes. Enough mistakes that the manager took me aside and told me that I was about to be let go. I persuaded him to give me one more chance and if that didn’t work I’d leave. My wife and I decided that I had to get off these drugs. Cold-turkey was the trick. My head cleared and my memory started to improve. I could remember the camera specs, and therefore, I could sell better. I kept on swimming and working out, and after 3 months my sales went up. By the end of the year I was the number one salesperson in our department. After the next 2 years I was either first or second in sales and that was truly an improvement. I was then asked to consider becoming the assistant department manager. During this time I started my own photography business shooting weddings and portraits. I no longer stumbled, well, maybe once a week, but I never fell down anymore, and I had learned to cover this up. I no longer stuttered and could talk properly once again. I was moving forward but only working part-time. I needed to move even further now.Then the medical and legal systems hit me again, this time deeply into my gut. The lawyers were circling, as doctors gave their opinions and didn’t agree with my not taking any medications. This however wasn’t a great concern to me since there was no comparison between me on the pills and me without the pills. There would be a trial sometime in the future and this was the start of my education in dealing with the legal system. I became upset when learning that I had to shift between 3 different lawyers, that my case was small to them and eventually I was handed down to a law student and then shuffled out the door to another law firm.
I had to do research. I had to get paperwork done and call between lawyers to get them to get things done. My normal life never trained me for this and I certainly had believed that the legal system looked after all of us. And truly, money did count. Forget the idealism we grew up with, this was now a reality check for what goes on behind the scenes.
However I wasn’t giving up yet. I got angry instead and wouldn’t quit. I wasn’t going to be beaten after being on deaths door and the subsequent medical issues. Now the lawyers wanted to carve everything up so that I got very little, which truly I did receive very little. I couldn’t beat the legal system and so any physical pain and issues arising later in life would have to come out of my pocket. Where would I get the money for that?
I read, and I learned. I was humbled beyond measure. I saw pain in other injured people’s eyes, and I heard their hearts revealed through their own anxieties, and hardships. I also saw this in my own eyes when looking into the mirror, but having grown up in a ‘rough upbringing’ I was ‘used’ to hardship, and it made me who I was. I continued to go forward. I wasn’t giving up, and life wasn’t going to be over for me because I gave up on myself. I was told that I’d never work full-time again. Well, that didn’t happen because eventually I ended up working 2 full-time jobs for 12 years.
I’ve had 10 surgeries from the neck up. I’ve had 2 full surgeries on my forearm, finally taking out the metal plate and screws. My jaw was re-broken and reset again. I wore dental braces for 5 years. I’ve had knee surgery and was told at that time that in 5 years I would have to get a knee-replacement. It’s now 7 years later and I’m doing fine. I work a very physical job which makes me move, and keeps me fit as do my gym workouts. I had worked for other Photography Studios until I decided to go out on my own. My wife and I toiled until her own personal issues got to a point where our marriage then dissolved.Again I was sent crashing. How could I recover anything when she took half of our assets meaning that she also got 1/2 of my photographic equipment which meant me not being able to move forward?
Regardless, I managed to start another photography business still shooting weddings and portraits. Along the way I’ve been a photojournalist, a sports photographer, shooting landscapes and special events. The story gets too long to go into more minute detail but I’d say that I didn’t give up, and that is the most important ingredient. Fortunately my mind has healed: it must be this very thick skull.
I still work 2 jobs right now and at the end of this year, 2013 I will retire from the Waterloo Regional Police Department, thus allowing me to fully concentrate on my photography. After shooting more than 300 weddings, and numerous other events I’d say that the recommendations and endorsements so generously granted me by my clients tell me something.
I encourage everyone who needs help to find it. There now are support groups, better medicine, and more medical skills to help everyone. Seek out counselling, talk to friends, and family. Tell the truth about how you feel, and share yourself. Don’t lock yourself up in your own tightly-closed closet. This won’t help. Be open, and improve yourself. Share.I applaud those who have succeeded and I mightily encourage those on the path to a new life. Bravo to you all.
No one knows anyone’s future but if you could sprinkle life with love, kindness, empathy, sympathy, and hope then many miracles can happen.
When Things Go Wrong
Written by: Devashish Paul
Date: Fri May 03 2013
In general, our sport is supposed to enhance our quality of life and improve the overall life experience, but in this case, slowtwitch.com forum member Jan de Visser, opens up to us about how going out for a simple ride has had a major effect on his life and that of his family. Every time we return from a ride, we may take the success of that ride for granted. To some degree we should, but when it does not go right, the pain and suffering might last for months or years.
There is no good news miracle comeback that this story ends with. Jan provides us visibility of his daily struggles. Some of our athletes have had major injuries or PTSD in combat areas, but the enemy we often don’t speak of is the one that awaits us at the next intersection on our next training ride. On a plus side, training for running has provided Jan an outlet to his daily struggles. He will actually race a marathon this weekend in the hopes of a Boston Qualifier time. We wish him our best.
Slowtwitch: Jan, thanks for taking time with us, sharing your experience and opening up to the community with some very personal and private thoughts. You have a big event coming up. A lot of ST athletes do marathons, but your path to this start line is not what we wish on anyone. Tell us more.
Jan de Visser: On September 3rd, 2011 I had a catastrophic accident during my last hard ride before my A race for that season. The Toronto Marathon on May 5th is my first major race after that accident.
ST: In your case it was a fairly traumatic brain injury. How are you doing these days?
Jan: I am doing better. I am able to mostly run my life, to be a father to my children. However, after more than a year and a half, I am still not working.
ST: Your work is in one of the most competitive consumer drive fields of technology?
Jan: I work in a cognitively demanding field (software development), and straining my brain for more than an hour, be it by creating software or otherwise being creative, or by having a conversation with more than one person, I am so fatigued I need a break for an hour or longer.
ST: I guess you want to share this with others coming back from Traumatic Brain Injuries?
Jan: Yes. Pressing on and not taking that break will trigger epileptic seizures, which basically ruin the rest of my day. In addition to the fatigue, I also suffer from cognitive disabilities, which would hamper my functioning in the workplace: my planning and organization, in particular with respect to time, is compromised. I have a hard time planning my day and prioritizing the things I need to do, to the extent that I need help from my wife, and my rehab team to successfully do that.
ST: What about the physical side?
Jan: Yes, there are some minor after effects like chronic neuropathic pain, impaired balance and vision, and sleep problems.
ST: Could you describe the accident?
Jan: Since the case is still before the court, I'll be brief, but I was riding down the road and was hit by a motorist making a left turn into my path. My head crashed into the car's window, smashing the right side of my face, causing an orbital blowout fracture in my right eye, and breaking my neck. The breaking glass caused bad lacerations in my shoulder. Finally, hitting the road caused a broken collarbone and road rash.
I was transported to my local hospital, which is fortunately about 3 minutes by ambulance away. Apparently I was conscious when the EMS people found me, but slipped in and out of consciousness in the ambulance. This, combined with the state of my face, made the emergency doc decide to sedate me and send me to a specialized trauma hospital, where I spend 2 days in an induced coma and a month recovering. My face was rebuilt using huge amounts of titanium.
Fortunately my broken neck healed with just patience, and since I was immediately immobilized by EMS never threatened my life. Having said that, I may well have died immediately if my neck would have broken in a slightly different way.
ST: What came next?
Jan: Initially it was fixing broken parts. Only later did it become apparent that the head trauma had caused a brain injury as well; while in hospital and for about 3 months after I felt fine and didn't notice any of the problems I have now. I even attempted to go back to work after 4 months, in January 2012. That's when the symptoms, most notably the epilepsy, developed.
ST: Any words of advice?
Jan: I have many warnings for other triathletes. First is to make yourself safe. Wear a good helmet, and make yourself visible. Be careful, especially in town, where motorists may make sudden turns into side streets, driveways, or parking spots. That probably means limiting your speed and not riding in aero.
After an accident has happened, monitor your brain. Be aware of symptoms like headaches, fatigue, mood changes like depression and irritability, sleep problems, cognitive problems like memory, planning and organization problems, and decreased tolerance for external stimuli like noise, light, and stress.
For more of Jan's story please visit Slowtwitch by following http://www.slowtwitch.com/Lifestyle/When_Things_Go_Wrong_3575.html
Peter Lawryniuk Believes in Miracles
On April 28, 1985, 7 year old Peter Lawryniuk was driving his bike with his best bud. They were racing each other to the store with their weekly allowance thinking to themselves, wow look at the money we have and the candy we can buy. It was a lovely day in spring, what better way to spend a Sunday for a young boy. He was like so many children that day racing his bike finally breaking out of the house after a long winter. The last memory that Peter recalls of that day is the feeling he had when he moved to fast across the road without his helmet on was the cool spring air and the wind in his face.
The driver of the car, who had been drinking, did not see Peter and unfortunately his reflexes had been negatively impacted by the alcohol. That evening he was transferred from Cambridge Memorial to Hamilton McMaster hospital where he regained consciousness after 11 days. The long recovery and rehabilitation process started as he was once again an infant. He had to learn to walk, talk, eat on his own and to toilet train again. I asked him if he remembered anything while he was in coma. His reply was no, but he does remember walking through a dark tunnel towards a light. A voice was calling his name at the end of the tunnel, but he also heard his parent’s voices and he turned around and saw them and ran back into their arms.
Rehabilitation at McMaster and then the fitness courses at Courtside Fitness in Cambridge helped Peter to work out and rebuild. A plate had been put into his left leg so learning to walk again was difficult but after a year it was removed and the process was easier. After discharge from McMaster, Peter attended the Rotary Centre (now KidsAbility) to continue rehabilitation and to relearn the skills that he had lost. Peter then could return to the public school board at Centennial Public School while still doing rehabilitation exercises. Peter continued throughout school at St. Jude’s and graduated from Jacob Hespeler Secondary School a task that this medical team didn’t think that he could achieve. After school, life didn't stop for Peter he was involved in therapeutic riding at the Sunrise Therapeutic Riding & Learning Centre and private swimming lessons on top of this homework assignments. Life was very busy for Peter but he acknowledges that it helped him with recovery and helped him become fit. I asked Peter if he had ever been bullied at school by his classmates. He brightened up and said, “No way, all of his friends and classmates where always very supportive of him.”
Peter acknowledges that his parents were very involved in his recovery process. His father took him to his music and horse back riding lessons. His father provided the physical support while his mother provided him with his spiritual support. His parents cheered him on and made sure that he never gave up on his self. Teenage life was difficult for Peter mostly because of anger issues. He had to learn to deal with the death of his father while struggling with an acquired brain injury. While Peter was struggling his mother was thinking, “How can I help him, how can I connect him with other brain injury survivors?” Helena connected with other caregivers and Patti Lehman and they started the Gym & Swim program in Cambridge. This was a program of 1 hour of gym and 1 hour of swimming which was offered once a week to survivors. This was the start of the Brain Injury Association of Waterloo-Wellington.
Peter lost touch with the BIAWW program until he was about 19. His mother told him about the music program at the BIAWW and Peter came out to try it out. The program let him play his music in a open and non-judgmental atmosphere and now he claims the Opportunity Centre feels like home.
Peter is very active in his life now, he not only participates in the music program, but he also volunteers at a day care centre in Cambridge. I asked him why he volunteers, and his reply was, “It makes me happy and makes me feel worthwhile sharing music with the children.”
When asked, “What would you recommend to a survivor of a brain injury?” His reply was, “Don’t give up and be encouraged to do new things, even if they are old to you. Times can be tough but never give up, anything is possible and you can do anything that you put your mind to. Don’t listen to discouraging words like you will only go so far in life. It is up to you to strive.
Doctors told Peter’s parents that he wouldn't walk, talk and he would be in a vegetative state when he woke from coma. Peter proved them wrong; they then said that he wouldn't make it pass Grade 9. His mother continued to encourage him to stay in school and she never gave up on him. Peter is now walking, talking, playing music, singing, volunteering, driving and has graduated high school. With a great sense of humour he talks about his dreams and he does believe in miracles.
James's New Addiction
By Daniel Nugent-Bowman
How running helped cure James Easton’s booze and drug habit and saved his life.
As a group of novice runners passed the 5 K mark of the GoodLife Toronto half-marathon last May, they let out a moan of disapproval. It was cold and wet, and they were approaching a hill on Yonge Street that threatened to derail their half-marathon goals. While most in the group were discouraged, 46-year old James Easton looked at me and smiled. “I’m just lucky to be alive,” Easton said. “I’m just hoping to finish.”
Easton says he used to be a “lazy couch potato.” During the day, that is. At night, the Kitchener, Ont., resident worked as a disc jockey where his recreational activities consisted of finding booze and cocaine after he was off the clock.
That lifestyle caught up to him about seven years ago. Easton remembers getting an awful headache that lasted for a week, and finally decided to drink it off. A day later, his then-partner found him on the floor of his house and rushed him to hospital. Easton suffered a brain aneurysm and was given a one percent chance of living.
"My brain just blew up," he says. I lost all functions. I had to learn everything all over - walk, go to the bathroom. I was 39 years old and wearing diapers because I couldn't control myself."
Through the help of his doctors and the Brain Injury Association of Waterloo-Wellington, Easton began to get his life back on track. He joined a weekly treadmill- walking group and eventually decided to start pounding the pavement outdoors. Easton completed his first 5K run in 2010 and the Toronto race last year was his first attempt at a half-marathon. He finished 2:18:07, slower than he originally expected, but not bad considering he had food poisoning that caused him to loose seven kilograms leading up to race day. “It’s sad to say, and it might sound weird,” he says, “but in an overall aspect, I think the [aneurysm] that happened to me was the best thing because if it didn’t happen, I probably would be dead…just from booze and drugs.
"Even now, when I go for my checkups yearly, the doctor just shakes his head. He goes, "You couldn't even walk when you came here." The GoodLife Toronto marathon was only the beginning of Easton's running goals. Since then, he has completed seven 10K runs and another half-marathon, using the events to raise money for the brain injury association that helped him recover. He runs five days a week - plus strength training in the gym on the other two day - and generally finishes 10K in about 45 minutes.
“If you try it and you like it, stay with it,” he says, when asked of the advice he’d give to new runners. “It didn’t happen overnight.” With his life in the right direction and his training regimen now set, Easton is no longer in search of participant medals or satisfied with simply finishing races at the distances he’s conquered. “My goal is to run a marathon before I’m 50,” he says. “And maybe win one race in my life.”
Daniel Nugent-Brown is a sports reporter in Saskatoon. So far he has completed several 10K races and two half-marathons-the latter of which resulted in meeting James Easton. This article ran in Canadian Running Trail Special - April 1, 2011 edition. This article has been reprinted with the permission of Canadian Running Trail.
~James ran the Good Life Marathon again this year on May 6, 2012 and completed the full marathon in 4:20 minutes almost qualifying for the Boston Marathon. Way to go!!
In a Moment; My Life Changed Forever
By: Marie Fletcher
It was a typical Saturday in April, 14 years ago. A Saturday with the smell of spring in the air, new beginnings and I was 23 years old just doing what every young adult would be doing. I had just finished my studies in Nursing at Western University in London and when I woke that morning I was thinking about doing my laundry and finishing my final exams. I was so excited about finding a job in nursing and my graduation ceremony. While I was waiting at the lights on the way to do my laundry a car ran a red light hitting a hydro pole along with me and at that moment my life changed forever.
Three months later at Victoria Hospital I woke from my coma. I couldn’t speak, my left leg had to be amputated and my right leg had to have extensive surgery to save it. I have learned to laugh about being in coma as I didn’t have to deal with the pain of amputation. This accident also caused a brain injury to my left parietal lobe. This type of brain injury causes right-left confusion, difficulty writing and difficulty with mathematics. It also causes disorders in language and to the ability to perceive objects normally.
When I woke from coma my rehabilitation process started immediately. I had to learn to talk again, walk again with my new prosthetic limb, feed myself, change myself and virtually everything else. After a year of rehab in London I moved to Kitchener to continue my rehabilitation. I remember how frustrated and angry I was that I couldn’t even sleep alone or live alone any longer. I felt that I had lost my independence and the accomplishments prior to the accident. During the first 7 years of rehabilitation I also had to deal with the insurance and legal systems; I thank my mother with helping me through this process as you can imagine rehabilitation is not an easy process.
During my first year in Kitchener I was told about the Brain Injury Association of Waterloo-Wellington and the Opportunity Centre. This program has given me something to do, to keep busy, learn new things, share feelings and have an outlet for socializing. I participate in the dance/exercise program, movie Monday, games/activities programs and some of the community outings. I have made good friends at the Opportunity Centre and I believe that I have become a positive role model to other survivors. We can talk easily here and I can answer some of their questions as I am able to relate to them and understand them. It has helped me deal with my anger and acceptance issues but most of all to be able to accept the circumstances and to make my life more fulfilling now.
After my injury I felt that I would be able to be employed within my field and it sometimes saddens me when I look at my framed degree in Nursing that I am unemployable and I will never be able to use it. Although have found a volunteer job that fulfills me. I have been volunteering at the Freeport Health Centre, I decided that this would be the best position for me because of my nursing education and I could be involved in the health field somewhat. I am the smiling face in the General Store serving coffee and goodies on Tuesday and Thursdays. I enjoy my time there and I have made many special friends and volunteering there makes me feel that I am contributing.
I sometimes think to myself…what my life would have been like if I wasn’t standing at that red light. It has taken me 14 years to recover and my recovery isn’t finished yet. People ask me sometimes what I would advise other brain injury survivors….I would tell them to maintain the relationships with your family, friends and associates; believe in yourself and realize that you will improve. You have to understand that you won’t achieve complete recovery to your pre-injury self but you will improve with determination and hard work.