This is Tony’s Life…

The Early Years

On May 18, 1971 in Oshawa, Ontario, Anthony Frank Jansen was born. He was the first-born child of Frank and Estelle. It was a relatively normal entrance into the world and quite possibly the only time that something ordinary would happen in Tony’s life.

The first event to foreshadow Tony’s life happened when he was 5 years old. Tony and his family lived in rural Ontario, north of Oshawa in a little farm house, in what I still consider to be “the middle of nowhere”. The closest neighbour was miles away and the roads to get there were narrow, hilly dirt roads that to this day are intimidating to the city driver. Tony had gone off to school for the day and his parents went into town. A blizzard hit. It was the worst storm to hit in years (and we haven’t witnessed anything similar since). The schools were closed and the kids shipped home. Now, these days I can’t even imagine HOW it could happen, but the bus driver – not wanting to get stuck in the storm dropped little 5 year old Tony off near his home and drove off without ensuring that someone was home to care for him. Indeed, Tony’s parents had gotten in a car accident and were stuck in Bowmanville. The house was locked and the storm was getting worse. The details from that point are sketchy, but Tony had the sense to crawl into a doghouse on the property and pull the dog in with him. This is where the neighbours found him hours later when they came on snowmobile after being contacted by Tony’s parents who were still stuck out of town. He was cold, but unaffected by his little stay in the doghouse. Now you might say – well that’s not a big deal – he wasn’t hurt and everything turned out fine. Very true, but it set the tone for things to come for Tony. Tony has an odd ability to be always in the wrong place at the wrong time and Murphy’s Law follows him around like a puppy. If the odds are 1 in 100 that something goes wrong in a situation – Tony is that 1 person – every time. Read on….

I’m sure there were lots of little incidents to indicate his ability to attract danger, but Tony seems to have blocked out the majority of his early childhood, so the next example I have is from Grade 7. Tony and his family are still living in the Wilderness and he and his sisters decide to go tobogganing, a perfectly natural thing for a 12, 9 and 7 year old to do. Except for Tony it means a broken leg at the end of the day. On one of their runs down the hill, Tony jammed his leg into the front of the sleigh and it snapped. Now if that isn’t bad enough, when the girls ran to the house to tell their mom he was hurt, she told them to just pull him home, assuming he was faking and would get eventually get up and bring himself inside. So the girls dragged him back to the house. He then sat in the kitchen for a half a day waiting for his father to come home and take him to the hospital. Since Murphy’s Law was following him around, turns out that when they got to the hospital, although they determined that his leg was indeed broken, there was no orthopaedic surgeon available and he had to be transported to Oshawa General. They put him in an inflatable cast and threw him in an ambulance. Murphy still hanging around, the cast had a hole in it and was completely deflated by the time they reached Oshawa. He spent 8 weeks in a full leg cast and another 7 weeks in a short cast.

The High School Years

Tony’s first few years of high school could probably be passed off as normal. He got into the usual trouble that 15-year-old boys get into. He grew from a geeky, smelly little boy into a well developed, quite striking young man. (Caution: author may be biased) With a bicycle as his main source of transportation and now living in the growing town of Ajax, he managed to escape all but small incidents. He dislocated a toe at one point, sending the bone clear through the bottom of his foot and it eventually became so infected that he needed to have the joint fused. In 1988, Tony got a driver’s licence, which would bring a completely new set of opportunities for danger. Nineteen-Eight-Eight also marks the year that I entered the story. Tony’s family had moved to Ajax in 1983, but had retained the land attached to the farmhouse in the middle of nowhere. In 1988, Frank built a brand new house on that property and in the fall of ’88 they moved back out to the farm. Tony switched high schools from Ajax high to I.E. Weldon Secondary School in Lindsay. By the end of 1988, Tony and I had met and were dating. (I’d be romantic and say we had met and were falling in love, but since Tony was also dating a girl from a town close to his home, I’d say he wasn’t thinking about love so much.) In those first 2 years, this is what I recall…he broke a finger wrestling, he set his own hand on fire essentially melting the skin off three of his fingers and he had three car accidents. One accident was minor; he skidded off the road and took out a fence post with his father’s Blazer, knocking off the side mirror. The second accident was more intense. While making a left turn into a gas station on an 80 km/h highway, another driver decided to pass the cars stopped behind Tony and went barrelling into the side of the Cadillac Tony was driving. Thank goodness it was a big old Cadillac. Tony walked away with a bit of whiplash from the impact, but would recover completely. The third accident happened on one of those horrible country roads I talked about earlier. Tony was working for a neighbour who owned a siding company and he was driving the company truck, undoubtedly too fast for the road…but that would be presumptuous of me. He came over the crest of a hill and met another car coming from the opposite direction. He swerved to avoid a collision, lost control and rolled the truck off into the ditch. I have a vague recollection of Tony coming to visit me in the hospital (I was having my tonsils removed) and noticing that his arms had small cuts all over them. Glass in the truck had shattered and every bare part of his body had been cut. Again, he was fortunate to walk away with such small injuries.

Car Accident #4

Tony graduated from high school in January of 1990. He had been living on his own since the summer of 1989 and after high school took a full time job pumping gas, while trying to decide on a future. Within a few months he was fortunate enough to land a job with Ontario Hydro at the Pickering Nuclear Generating Station. That job would be one of the most stable things in his life. He worked there for almost 7 years. He began an apprenticeship as an Ironworker. In 1991, the weekend after his 20th birthday, Tony and I married. We managed to drive all the way to New Brunswick that first summer without injury. But Murphy’s Law is never far from Tony. I drove from Pickering to Cornwall – 3 hours - at 140 km/h. We switched drivers. Tony drove 125 km/h for about 5 minutes when he was pulled over for speeding.

Later that year, we drove to Stratford one evening to visit some old friends. We had intended to drive back to Cambridge that evening to stay at my brother’s home. We went to a bar, but Tony didn’t drink because he had to drive back to Cambridge. It was a rainy night and we headed out about 2 am. The roads were dark and wet and the highway we were travelling was unlit. I fell asleep in the backseat of the car. Tony drove along and saw a car up ahead of him swerve on the road. As he came further down the road, he realised why. A man was walking in the middle of the road. He braked but it was too late. The corner of the car caught the man, slamming him into the windshield and throwing him onto the pavement. So you ask, what is somebody doing walking down the middle of a highway at 2 o’clock in the morning? Apparently, the gentleman had had a fight with his wife (we would meet her later and find she was quite intoxicated) She kicked him out of the car and left him on the side of the road. Her 15-year-old son and his friend were also in the car and got out when the man got out. The son and his friend were walking on the shoulder of the highway screaming at the man to get off the road. They told us later that he had been smoking up and drinking and wouldn’t listen to them. The man sustained major injuries, including a head injury, but he lived. The police officers on the scene were quite helpful. They gave Tony a breathalyser to make sure he had not been drinking and they told Tony that there wasn’t anything he could have done. It’s like hitting a deer. Only this one was human. The gentleman, his wife (by this time ex-wife) and her son sued Tony, who was now 22, for 3.4 million dollars. He was insured for $250,000. The insurance company lawyers took absolutely no interest in hearing Tony’s side of the story and came up with their own version of what happened. Five years later, we would find out that the insurance company settled out of court for over $250,000. Nobody bothered to call Tony and let him know it was over.

There was a fifth car accident, but it was a small fender bender and my car was the only victim. The driver’s side window was smashed and despite the fact that Kelsey’s car seat (she was just a baby) was full of glass, neither she nor Tony had even a tiny scratch.

The Kids

In 1992, we were living in Ajax and our next-door neighbours were a couple not much older than we were. They had a little girl, Hayley, who was about 18 months old. The mother was a hairdresser and she ran a salon out of the upstairs of her home. Tony went to have his hair cut and we became friends. Tony immediately fell in love with Hayley. He thought she was just the most adorable thing. I was 20 years old, in my third of four years of university. We had been married almost 2 years. Having a child was definitely not a logical thing to do at the time. But then there is nothing logical about Tony’s life. In March of 1993, Tony found out that he was going to be a daddy. He was ecstatic and oddly calm about the whole thing. (I definitely was NOT calm for the first few weeks) Kelsey Louise was born on December 7th, 1993 – a beautiful baby girl. Tony was the first to hold her, the first to change her little diaper. He would watch TV with her lying on his chest and he sat up with her in the wee hours of the night when she wouldn’t sleep and I couldn’t stay awake. One year later, he would get news that Kelsey would have a sibling and on August 31st, 1995, Tyler Joseph was born. The proud papa called the local radio station to announce the arrival of his son to the world! If there is any ordinary part in Tony’s life, it’s with his children. But then even that is extraordinary. Right from the start, he was the perfect proud Daddy. There’s nothing more endearing than seeing a father play with his children.

The Big One

Of all the things to happen to Tony in his life, none would be quite as significant as this one. It’s a long story and for the most part I will tell it from my own perspective. If Tony were to tell it, it would go something like this: “I went out and when I woke up it was 14 days later and I was very confused.” This is how I tell it:

It was Friday, December 13th, 1996. The next morning I was leaving for the weekend for a skating competition. Kelsey had just turned 3 and Tyler was 16 months old. We had recently moved to Port Hope and didn’t really know anyone in town. Tony was feeling a little trapped and decided that he would stop by the brother of a friend of ours who happened to live down the street and attempt to start a friendship. They met and decided that they would go out that night. Tony came home and told me his plans. I was glad that he had found something to do and had no desire to accompany him since I had to compete the next day. I wished him a good time and he was on his way. He and his new friend met up with another guy and the three of them went to Casey’s for a few drinks. They decided at some point in the evening that they wanted to play pool and so went to the only place in town they knew had tables. The details for the next 5 or 6 hours are speculative – pieced together from bits of information from witnesses and the police. Apparently, Tony’s new friend had a bit too much to drink and became mouthy. They were leaving the bar and the guy tried to take his beer with him. A bouncer stopped him and told him he could not and a verbal shouting match ensued. The other guy and Tony managed to drag ‘new friend’ outside, but the bouncers of the bar, who continued to shout at them, followed them. At some point, Tony turned around and began walking towards the bouncers. He was wearing jeans and had his hands stuffed into the tight front pockets of his pants. Presumably he was going back to tell them, enough, we’re leaving. Had he other intentions, he would have had enough sense to have his hands free. As he walked over, one of the bouncers hauled off and hit him square on the chin – hard enough to leave a mark and hard enough to send Tony straight backwards onto the pavement. It’s unclear if he lost consciousness and fell or if he lost his balance, fell, hit his head and then lost consciousness. Whatever the case, the end result was the same. Tony was sprawled out on the sidewalk, unconscious with his hands still firmly planted in the front pockets of his jeans. The bouncers fled and left him lying unconscious on the sidewalk. The ‘new friend’ would later that evening tell me that he had never heard such a terrible sound as when Tony’s head hit the ground. He said it sounded like someone had climbed a ladder with a 10lb watermelon and dropped it to the ground.

An ambulance was called and they carted Tony off to the local Hospital. He was admitted. Still unconscious, the hospital staff took x-rays of his skull, but the hospital was small town and they did not have a CT scan. The doctors could not find a fracture on Tony’s skull, so although he was still unconscious, they said it was just a bad concussion and that he had too much to drink. I got a phone call from ‘new friend’ from the hospital. He gave me a vague indication of what had happened and told me Tony would be fine. I felt uneasy about it and although it was now 3 in the morning, I called a friend to come and stay with the kids so I could go up to the hospital. When I arrived, I found Tony unconscious in a hospital bed. If foresight were hindsight, I would have been ale to tell them something was seriously wrong. I had seen Tony intoxicated before, but never ever like this. His eyes were rolling in his head and he was not even the tiniest bit responsive. While I was there, he appeared to be trying to get out of bed but was not even making it into a sitting position much less being able to stand up. Honestly, I was furious! The nurses assured me he was fine but that the next day he would have a terrible headache and would not be capable of looking after the kids. Seeing as I had to go away, I was angrily trying to figure out what I would do with the children. It never occurred to me for even a second that he was seriously injured. The hospital told me to pick him up in the morning.

The next morning I got up early and got the kids ready to go. I figured I would have to drop them somewhere and I had to be in Toronto by 12 p.m. I was on my way out the door when the phone rang. It was the hospital – a doctor this time. He told me that Tony was still unconscious and that he was concerned that there was a larger issue. He said they were sending him immediately via ambulance to Sunnybrook for a CT scan. He said they could send him to Peterborough, but if they found anything they’d have to send him to Sunnybrook, so better to be safe than sorry. At that point, I really didn’t understand what was happening and they made it all sound quite casual. The doctor asked if I wanted to go up to Sunnybrook with him. I said I did and would be there ASAP. I took the kids to the babysitter and booted it up to the hospital. By the time I got there – 20 minutes later – the ambulance had gone. “We couldn’t wait” I was told. That was the first moment that panic started to set in. “What do you mean you couldn’t wait??? You said he is fine!” The nurses in emergency told me that he was probably fine and that they’d probably do the CT scan and send him right back, but that if I wanted to go up to Sunnybrook I should. I decided to go. The second stage of panic settled in when I arrived at Sunnybrook emergency. I walked through the doors and immediately a nurse came up to me and asked if I was Tony’s wife. It occurred to me that it was odd that they were waiting for me. She told me he had had the scan and they were just waiting for results. They would talk to me in a minute. Another nurse came out shortly afterwards and told me he had “a bit of a bleed” and that they would have to operate – third stage of panic. I had absolutely no concept or understanding about what was happening, but I knew instinctively that any surgery happening in or around someone’s head could not be good. She asked me if there was anyone I could call to be with me – “you really shouldn’t be by yourself right now” – fourth stage of panic. I started to get that choking feeling and she left me to call my family to try to find someone to come sit with me. It was not an easy task getting someone on the phone on a Saturday 2 weeks before Christmas. I was unsuccessful but I left a few messages. The surgeon called me in to see Tony and to have me sign the release forms for the surgery. Tony looked fine – just asleep. He looked more at peace than he had the night before and I was encouraged. Very naïve because the reason he looked so peaceful was because he dropped further into unconsciousness. The final stage of panic set in during this meeting. The surgeon explained that they would cut a question mark shaped flap out of the skin around his ear to the top of his head and pull it open to expose his skull. Then they would cut a circle 3” in diameter out of his skull to expose the lining of his brain. They would then evacuate any blood clots, put a drain in for fluid to go to, and then replace the piece of skull with some sort of glue and sew him back up. I nodded as if I was actually absorbing what he was saying, but it wasn’t truly going in. He told me that he needed to explain the possible consequences of the surgery. He said that there would likely be full or partial paralysis that could be temporary or permanent. He said that Tony would likely not be able to talk or walk and would need extensive rehabilitation. He said he may require life support after the surgery and of course, he may die. Those were his words….he may die. They are words that will ring in my ears for all of eternity. I felt the blood rush out of me and the world collapse before me. How can he die, I asked, he’s 25 years old!? The surgeon assured me that Tony was young and strong and that they would do the best they could. Somehow not very comforting.

A volunteer worker and the hospital Chaplain took me to a room and helped to track down my parents. With my parents and in-laws on the way, the Chaplain took me upstairs to the Critical Care waiting room. What a dismal place and one I hope I never have to visit again. The Critical Care waiting room is where they take you if your loved one’s life is in danger. It’s a very sad place. While I waited for news about Tony a 19 year old boy died from a severe asthma attack and a grandmother was taken off life support. The Chaplain explained to me that once the surgery was finished, they would take Tony to either the seventh floor or the fifth floor. Seventh floor was bad – seventh floor would mean that he required life support. Fifth floor was good – this would mean he was breathing on his own. It seemed like an eternity in that little room and never in my life have I experienced such a feeling of helplessness. The surgery took about 3 hours. I didn’t know what to do with myself. Before my parents and Tony’s parents arrived, I desperately asked the Chaplain what I was supposed to do, to which he sympathetically replied, “Nothing. You sit and do nothing. It’s out of your hands.”

Eventually the surgery was over. A doctor came in briefly, still in scrubs, to tell us that the surgery had gone well and that he would be back in a moment to talk to me about it. Never have I felt such relief! He was going to be ok! The surgery went well! This would be the first time but certainly not the last time that I would come to realise that a doctor’s idea of “well” is quite different from my own idea of “well”. In this case, the doctor was quite pleased because Tony was alive. In his estimation, a living patient means that the surgery went well.

The surgeon came back out to talk to us. He told us that the surgery had gone better than expected and although Tony was currently on a respirator, they were going to take him off and expected him to breathe fine on his own. Well that’s something. He told us there was fairly extensive brain damage, the effects of which would not be known for a little while. He said that Tony was paralysed on his right side and only time would tell if he would eventually regain enough mobility to walk. He told us that likely Tony would need extensive rehabilitation to learn to speak and that there would be definite long-term effects. We just had to wait and see. They would move him to the fifth floor as soon as he came out of recovery – which was not to say they would move him when he woke up, because Tony was in a coma. The doctor said he may not regain consciousness for another 1 to 3 weeks, but again, only time would tell.

I wanted to stay with him that night, but by that point I was exhausted to the point of being ill, so I went to see him in the NICU before going home. He didn’t actually look that bad. He had a head dressing that was straight out of a war movie and he had tubes in his nose and mouth as well as the standard IV, but he looked relatively unweathered –all things considered.

The next day, I went to visit the kids who were still at the baby sitter and thankfully too young to question or understand. They were content where they were. I went back to the hospital feeling optimistic and slightly revived. Nothing could have prepared me for what I would find. Over night, the trauma of the surgery had set in and Tony’s whole right side was swelled up beyond belief and his face and neck were purple. His eye was a colour I’d never seen before – or since – and it was swollen shut. He looked like he had been beaten to a pulp. He was still only semi-conscious, but apparently had given the nurses quite a fight in the middle of the night trying to get out of bed. He was now tied down. It was indeed a pathetic sight. There he was looking bruised and beaten, wearing nothing but a hospital gown, tied to the bed, his massive chest and shoulders barely fitting across the width of the little hospital bed. His right eye was open, but blank. It was an expression that I would become more and more familiar with over the next few months.

Tony regained consciousness slowly - at least semi-consciousness. The first sign of consciousness came later that second evening. He had been making a nuisance of himself all day pulling at the various tubes and wires coming out of his body. One of these was a tube that was stapled into his skull and inserted into the sub-dural lining of his brain to allow any fluid build up to drain. The surgeon decided that it would be safe to remove the drain. He warned Frank and I that it would be painful. Doctors have a gift for understatement. Never in my life have a heard someone scream like that. Tony BELLOWED. “Let go of my head! It hurts! It hurts! Let go of my head!” It was a bone-chilling shout and yet both Frank and I were thrilled that he had responded at all. Sad that he was in pain, but overjoyed that he knew he was in pain.

The first verbal response I heard from him was in response to a question from the nurse. Her question was “Tony! What is your name, Tony?” His response: “ROCK.” The nurse then said, “No, your name is Tony. What’s your last name Tony?” His response: “STUD.” Rock Stud – a.k.a Tony Jansen.

Eventually Tony improved enough to be moved out of Critical Care and moved to the NICU floor. He slept most of the time and the doctors encouraged us to try to keep him awake. They insisted that we needed to force him back into full consciousness so that he could get on with the recovery period. Each time I saw him, I was encouraged that he was improving every day. Each time I saw a doctor they discouraged me beyond comprehension. He began to talk, although for very short intervals. He had no idea who anyone was. He knew he was in the hospital, but not much more than that. He told his father he was a baker. Every day I would ask him what my name was and every day he would give me a new name. One day I went to visit before work and I asked the standard first question of the day…”Do you know my name?” To my surprise, he looked at me as if I were asking the most absurd question and answered “Renee”. I was overjoyed. He was visibly puzzled by my elation. I asked him what my last name was and he responded “Flanagan” (my maiden name). I told him it was Jansen and he looked at me dubiously. I told him we were married to which he responded “We are?”. I added that we had 2 children and he said “I know”. Not incredibly coherent, but he was making progress.

It was almost Christmas time and his doctors said that he could come home for a few days if he wanted to. At first Tony said that he wasn’t ready and that he didn’t feel safe to come. I was disappointed that he didn’t want to come. On Christmas eve morning, the phone rang and who is opn the other end? Tony. I was astounded – the guy that can’t remember his own children’s names, but he remembered his phone number! He said that he wanted to come home, so I went to pick him up. It turned out to be a very dismal visit. Tony was still experiencing a great deal of pain and the drugs they sent home with us weren’t helping. He hadabsolutely no ability to interact socially and he parked himself in front of the television and pretended to watch a football game. He seemed to be sulking like a 12 year old child, but Tony would later communicate that he couldn’t follow the conversation and that it was so overwhelming that he had to pretend to be completely engrossed in football to avoid having to make the effort of conversation. A little while later, he decided that he needed to shovel the driveway. I begged him not to and tried to explain why it wasn’t a good idea. He became very angry, but eventually gave up the idea and spent the rest of his visit home hiding in the basement. I took him back to the hospital the next day drained of all energy. Never before and hopefully never again will Christmas be so dismal.

Tony’s visit at home made him restless with the hospital. He began talking about leaving the hospital and going back to work. He still slept the majority of the time. His thoughts were incoherent and his ability to communicate was practically nil. He searched for every word and often abandoned a thought mid-sentence. There were obvious holes in his long term memory and his short term was non-existant. I came to his room one day to find a sticky note with the words “work?” and “hobbies?” written on it. I asked what it was and he said he didn’t know where it came from. I would find out the next day that the Occupational Therapist had left it with him to remind him to ask me where he had worked and what were his hobbies – things he couldn’t remember while she was there. He was making progress, but there was still a long way to go. However, In his opinion, he was fine and despite his fatigue, if he could just go back to work everything would go back to normal. It was an extremely stressful time. I tried reasoning but it was in vain. I would ask how he could work for 8 hours when he couldn’t stay awake for 8 minutes and he would say “it’s only because I’m stuck in this hospital” I tried to “prove” that he was not fully-recovered by asking questions like “What are your childrens middle names?” They were questions he couldn’t answer but always he felt that didn’t mean anything. He told me “so what if I can’t remember their middle names – that doesn’t mean anything, I’m fine, I could go to work right NOW.” We were constantly at odds and I tried to be patient and understanding, but often became patronizing I’m sure.

In a few weeks, the doctors felt that Tony was ready to leave the hospital and go into a rehabilitation center. None of the centers had room immediately available and he would have to wait for two weeks. Tony was still relatively unpredictable and because we had young children at home, the doctors felt it would be best if he were admitted to our local hospital for the interim. They gave me the option to send him in an ambulance or to drive him back myself. Of course I said I would drive him, but when I arrived to pick him up, I quickly realized that I may have erred. Through some sort of communication break down, Tony was under the impression that he was coming home. He was absolutely adamant even after I had a nurse explain that he was going to another hospital at home. He eventually settled when they told him that perhaps his doctor at home would allow him to come home for the weekend. I dreaded our arrival at the hospital. We went up to his room and he sat on a chair and refused to unpack or get into bed. He insisted there wasn’t any point since he was coming home. And he was MAD! The doctor came in and asked to speak to me privately which only infuriated Tony more. He told me that if I felt I could handle him, he would sign him out for the weekend, but his instructions from the surgeon at Sunnybrook were to keep him in the hospital. Tony was so unpredictable that I was afraid to bring him home. I told the doctor as much and so he told Tony that he must stay. Tony was not a happy camper. He blamed me – said he couldn’t come home because I wouldn’t let him. Partially true, but I feared for his safety. The whole event seemed to be the catalyst that would send him into a deep depression for the next few weeks. He was so sad and so despondent that I was afraid he would hurt himself. He came home for the weekend the following week and we spent most of the time arguing. He was like a 12 year old boy screaming for my attention. I spent most of the weekend trying to keep my eye on him. I really thought I would wake up and he’d be lying dead on the kitchen floor. I followed him around like a puppy.

In those four or five weeks, there were signs to indicate permanent damage, but Tony couldn’t communicate them and it would be another 6 weeks or so before we would know at least some of the long term effects. I brought him McDonalds one day. He said it was bland. An avid coffee drinker, he suddenly preferred tea or plain hot water. He complained that he couldn’t see me well, so I gave him his glasses. I asked if that helped, he said “Not really”. I thought he was being difficult.

After two weeks in the local hospital, a spot opened up at the Queen Elizabeth Rehabilitation Center. Great news except that it is located at Spadina and Queen’s Park – not exactly a convenient location for visiting. They said he would spend the first two weeks just having tests done. I was back to work full time in Pickering, living in Port Hope and skating in Toronto and at the same time trying to manage two small children on my own while dealing with the emotional stress of Tony’s recovery and the resulting financial strain. I was running 24-7 on adrenaline. With Tony right down town TO, it was very difficult for me to visit and impossible to take the children. He came home on weekends and there just wasn’t time during the week. At that point in his recovery, Tony couldn’t understand. He was very, very angry with me. When I did visit, he gave me the cold shoulder. He befriended a nurse who validated his hatred towards me. She encouraged his beliefs that I was choosing not to visit and that I was a terrible unsupportive spouse. It made our lives that much more complicated and stressful. While it was happening, I held on to the belief that someday he would be able to see the reality of the situation and he would feel badly that he had treated me that way. I secretly feared that he would forever remember this time the way he was experiencing it in the moment, but I told myself that wouldn’t be the case.

Further testing at rehabilitation would indicate that Tony had complete anosmia (no sense of taste or smell) and he was diagnosed with Right Homonomous Hemianopsia – a really big term meaning he has no right visual fields. The neurologist told us that the anosmia could improve for up to 10 years but never in known medical history has anyone ever seen even a small improvement from the RHH. It would still be a few months before we understood what impact that would have. Because Tony had had seizures prior to his surgery, his Driver’s Licence was suspended for a year. The Neurologist at rehab told us that the suspension would become permanent unless something in his vision changed. As the doctor went through the findings of their testing just prior to Tony’s release from rehab, I sat silently with tears rolling down my face. He won’t drive again; it is highly unadvisable that he ever do Ironworking again; he should continue with out-patient occupational and physio therapy for at least another 6 months (Which is everyday in Oshawa by the way – isn’t that practical); he is self-sufficient, but should not yet be allowed to care for the children by himself for more than a very short period of time. The doctor went on and I sat and cried. Finally the doctor asked me in a very admonishing tone, “Why are you crying? Why are you upset?” It was as if he were telling me that I did not have the right to be sad for what my spouse, and in turn, I, had lost. My husband was alive and would eventually return as a contributing member of society. I should be overjoyed! Again, doctors perspective. They dealt daily with so many others who were so much worse off, but that was little consolation to me. I wiped my eyes like a dutiful child and we were off to a new stage in our lives and in Tony’s recovery.

The next six months would be up and down. Tony went through a period where he had a very difficult time controlling his emotions, especially anger. He would fly off the handle and throw things or punch walls. At one point we argued in the car and he hauled off and punched the windshield and it shattered. Every car ride was a nightmare for me. All of a sudden I was THE worst driver ever to take the wheel and he was the EXPERT. Change lanes, slow down, speed up, watch for that car, turn your signal off, put your signal on. It got to the point where I couldn’t be in the car without tensing. Life was very, very structured. Lunch is at 12 and dinner is 5:30. Everything had a place and an order. Any slight change in plans sent Tony into a panic. I learned early on not to ask his opinions or preferences because he was, for a time, completely incapable of making even the simplest of decisions. Apple juice or Orange juice was far too stressful a decision to make. Tony began to develop ways to cope with his new disabilities. He wrote EVERYTHING down so that he wouldn’t forget things. He started to get accustomed to his visual impairments and his door jamb body checks became fewer and further between. He began to keep the children home from daycare for a few days each week until eventually he kept them all week long. Rehab care was sparce in our region and without transportation to a larger center, Tony got lost in the shuffle. Against doctor’s recommendation, Tony eventually decided to try his hand at Ironworking again. He worked for a couple days only to realize that he wasn’t quite ready for a full work day yet.

Tony worked on and off for a long time after that, never quite able to handle it after 3 or 4 weeks. He would become tired and with fatigue would come disorientation. His verbal skills would lessen and he suffered terrible headaches. In May of 1997, Tony had a Grand Mal seizure. It was very scary to me and we worried after that it would be a common occurrence. This seizure made it all the more apparent that Tony needed to find a new direction for his life. Ironworking was not safe, nor practical. But making the break to this date has been difficult if not impossible. His capacity for learning has diminished and his attention span in the first three years was practically non-existent. At a point in Tony’s life, he was absolutely miserable, depressed and inconsolable. Our relationship was rocky at best. Tony finally went to see a doctor and was diagnosed with Severe Depression and promptly put on anti-depressants. The pills made him even more disoriented and aloof, but he was at least coping. Eventually he would abandon the drugs and learn to cope with life as it is. Accepting the loss of his licence was a huge process – one that I can’t say it entirely complete. As with every part of the recovery process it’s been a long, bumpy often arduous road, but Tony has come a long way over the past 6 years.

So where does that leave Tony today? To the casual observer he is a normal kind of guy with a big scar displayed proudly on his shaven head. And for the most part, that’s who he is – a normal kind of guy. But not without emotional and physical scars. Tony never did, and never will, regain his Driver’s Licence. It limits him in ways that are unimaginable to those who take driving for granted. He’s constantly justifying his lack of driving privileges to those around him. The automatic assumption is that it is suspended on a DUI which carries a stigma of its own. He still has no sense of smell – NONE – but one could argue that he does have some semblance of taste. He still struggles with chronic fatigue and short term memory. He has difficulties in large social settings and has trouble multi-tasking. All of these things are amplified by fatigue. He has recently started a full time job, which hopefully will prove to be his first long-term employment since the accident. Above all, I think Tony suffers from societal ignorance of brain injury and its effects, even among the medical profession. (when he was diagnosed with Depression, they put him on a medication that should never be taken by someone who has had a brain injury or seizures – so we found out later) If he’s tired – he’s lazy. If he’s in pain - he’s whining. If he can’t remember things – he’s getting older. If he says something inappropriate or non-sensical – he’s just an asshole. It’s hard to place blame because his disabilities are hidden. No wheel chair, no white cane. And for the most part, Tony’s pretty damn good at hiding them. Maybe someday they won’t be hidden, they’ll just be gone. I like to look at things on the positive side and I believe that one day Tony will sit and remember what it was like when just getting up in the morning was a triumph and will ponder how good life has become since those days.

But back to Tony’s story…

The Summer 2001

In the summer of 2000, Tony and I realized that we could not reasonably stay in Port Hope with Tony’s circumstance and I began looking for another job. The result was that in December of 2000, we moved to Mississauga. Tony worked for almost 4 months when we first arrived. To date the longest stretch since he was injured. Although the house was small, the kids were settling in and things seemed finally to be going in a normal, calm fashion.

In July of 2001, we went camping with my family, as we usually do in the summer. We still had a few days of vacation left when we got back for day trips. Earlier that year, I had taken up Trampoline lessons and after a short while, Tony joined me. Even the kids got into it. It’s a very invigorating sport and we became quite obsessed with the trampoline centre. We were there often and Tony, being Tony was quite adventurous. We decided to go for an hour of jumping one afternoon during our holidays. The four of us had been jumping for about 50 minutes and Tony was attempting to do a front 360 tuck. It’s a tough move because the landing is blind. Frankly watching him scared me because I know his luck but over the time of our lessons I had learned to ignore what he was doing and concentrate on my own jumping. So Tony had successfully completed a few tucks but fallen off the landing and was trying to get a solid landing. All of a sudden, there was a huge crack and Tony was rolling to the side of the trampoline. “BROKE MY LEG!” is what I heard and when I turned around it seemed an over obvious statement. His leg was at a 90-degree angle below the knee and his foot was rolled over and on backwards. We shuffled the children quickly off the platforms and called an ambulance. When the ambulance came, they had to call the fireman to come help get Tony off the trampoline and onto a stretcher. The nature of the break was such that they were afraid it would compress if they jostled him too much, and it was highly unlikely the two little ambulance attendees that they sent would be able to navigate the trampoline with a 200 lb man. So in come 3 fireman and between the 5 of them, they managed to get Tony into the ambulance and off to the hospital. At first, he was relatively calm, wincing but not over-ridden by pain, but by the time we got to the hospital, he was starting to sweat and lose his ability to keep the pain at bay. They gave him morphine, but it did nothing. You could see the control slipping away and he started cursing and moaning. Finally, the doctors came and told him they would have to relocate the leg and the ankle before they could do x-rays. The fear that washed over his face was instant. “Can’t you wait until they put me under?” No. So they cranked him up with more morphine until he was calm and almost asleep. Then up walks the doctor, grabs his leg and SNAP! Just like that, his leg is back on the right way. Not quietly though. He screamed and cursed like a trucker until the doctor laughingly told him to be quiet because he scaring the rest of the patients. Tony drifted off again and they put a temporary cast on and he was wheeled off to wait for surgery. He doesn’t remember the relocation – I think that’s a blessing. The surgery was quick and they put in a plate and a bunch of screws. He was in a cast for 6 weeks, on crutches for another 2 and then after a few weeks of walking solo, he returned for x-rays only to find out that he would require more surgery. SO back to the hospital, back in a cast and 6 months after the break, Tony finally walks on his own two feet. It’s been almost a year now and his ankle is still a pretty ugly sight. It will never be as it was. He limps something fierce and still suffers a fair amount of pain. They suggested orthotics, which he forked out for but they have yet to prove their worth. In late 2002 Tony will go back to the hospital for yet another surgery to remove some of the hardware which hopefully will help.

More to come….