As time went on and I got a bit less confused, they needed to build some structure into my day. They knew I wasn’t retaining any information. I wasn’t able to remember from moment to moment and even second to second. Ian could say, “Wally, you’re at Chedoke Hospital. You’ve had a stroke,” and even if I responded, it wouldn’t register. But by this point, I knew who I was, and I knew who my family was.
IAN: What was so interesting was—we see a lot of people like this, and Wally went the same way—deep-seated memory is often there. Your ability to conduct yourself in a social situation, for instance. I can remember, he could be saying a bunch of things that didn’t make sense, just be very, very confused, and then you would introduce him to somebody new, and he knew enough to shake their hand and say, “Nice to meet you.” We call them “over-learned” things, behaviour that never seems to leave you. Conditioned stuff. I can remember him reaching out his hand and greeting someone, and I’d think, “Wow, you know, he hasn’t lost that.”
Well, it’s nice to know I hung on to a few social graces through all of this, but Ian tells me that the thing that made me so challenging early on was that I was in a constant state of panic. I had this internally driven anxiety and restlessness. The intensity and duration of it was a bit unusual, he says, but you do often see it with stroke victims. The other thing about somebody who’s at that stage, is that they always feel a need to be somewhere else. You’re never content with where you are, because you are so confused and uncomfortable in your own skin.
As I got physically stronger, I just became more of a challenge, because I was literally moving around in a panic, looking for my family, even when the staff told me they weren’t there. I constantly worried about my sister Ellen. I’d think she was in trouble. I continued to think that Brent was a baby. I could be talking to someone when something would suddenly pop into my mind, and I’d say, “The baby’s missing,” and run out of the room, looking for him.
It didn’t matter where Ian put me, I wanted to be somewhere else. They would take me for a walk around the area outside, usually with two staff, because otherwise I would bolt. I would try to run away, and they would have to physically escort me back. They would put hockey on the TV for me, but that didn’t seem to help at all. Obviously, it was difficult for my family to know what to do when they came to visit. It wasn’t exactly peaceful. They could only do their best to restrain me from leaving the premises, and keep reassuring and orienting me. Ian tells me that sometimes I even tried to bribe him to let me out—“C’mon kid,” I’d say, “how much would it take?”
I remember absolutely nothing of this. This was very early on. They had alarms on all the doors, because if they took their eyes off me, I was at the doors trying to go. They’d ask, “Wally, where are you going?” and I’d say, “I’m going home.” But obviously I had no ability to plan any kind of actual escape. I would walk out in my T-shirt in the wintertime—that’s how injured I was. When Charlie Henry was visiting one time, he thought I’d just gone to the bathroom when I’d actually left the building. He felt terrible about it and joined the staff when they went looking for me. It wasn’t too long before they found me. I’d taken off across the field and managed to get quite a distance away, running in the opposite direction from home. I guess in my mind, I was being kept somewhere against my will. My family needed me, and I was determined to get back to them.
What was happening all this time, though, even if it didn’t seem like it, was that my brain was spontaneously healing. Dead brain tissue doesn’t come back, but over time the brain will try to compensate for areas that aren’t functioning properly. With me, it took so long. A little, tiny bit every day. Two steps forward, one step back. The therapists would think they were getting somewhere with me, and the next day would be a disaster. I’d be at a point where I could manage to get myself out of bed and dressed, but then I’d be so disoriented and afraid, I’d run outside into the cold again at the first opportunity. And then the next day, I’d inch along a little bit further, and the next day, fall back again. I didn’t have any physical deficits, but because of my cognitive impairments, I couldn’t think to do things. And because I was in panic mode, I was more interested in finding Ellen or baby Brent than in having a shower or brushing my teeth.
I needed a lot of assistance to even care for myself. The hospital would collect data on how independent I was becoming. Probably the first sign of real progress was when I could shower, dress and undress myself. The fact that I was calm enough to even participate in basic grooming was an improvement. Gradually, over a period of months, I became more independent. I got to the point where they could give me a checklist—as is common with people who’ve had a stroke, I couldn’t sequence even the most ordinary tasks. Generally, we all get up in the morning and know what our routine is. But at that time, I needed the whole shower sequence broken down into steps. I would look at my list and read “Take off your shirt.” I had a pen and I would make a little check mark. I needed those cues. Ian would be right beside me, walking me through the steps and prompting me if necessary. The list instructed me on what to do, in sequence: “Put on your robe. Put on your slippers. Go to the bathroom. Use the toilet.” I carried that list and a pencil with me, and I would check off each step.
In the beginning, for about a month, I didn’t even know my way to my room in the unit. So, when I started to know where the kitchen was in relation to my room, that was another sign of progress. They got me to the point where I would wake up to an alarm. Ian or another therapist would enter the room and say, “Good morning, Wally. Here’s your checklist for the day.” They had a camera in my room, and they would watch me from the workstation. I would pick out my own clothing with the use of my checklist. I would independently walk to the shower room and take a shower and dress, and the last thing on my list was “Go to the kitchen for breakfast.” Ian remembers the first day I did the whole thing by myself and they all stood in the workstation saying, “Yes, Wally, way to go!” Then it got to the point where I’d get a little smirk on my face when I’d finished my checklist, and I’d go to the kitchen and say, “Good morning.” The therapists would all be so excited.
People are often angry and aggressive after a brain injury, but I was more confused and disoriented. I didn’t have the ability to plan any aggression, but because I was in my own world, if you were blocking my exit, I might try to push you out of the way. I did that a couple of times. Ian would patiently say, “Wally, you’re in the hospital. You had an aneurysm. You’re in Hamilton,” and I could get quite argumentative. I would say, “What the hell are you talking about?” I thought I was on the farm in Canning, and then the next minute I thought I was in Brantford. And then I’d say, “Ellen’s drowning in the river,” and Ian would say, “Ellen is not drowning in the river. She’s at home with Phyllis.” I’d be upset and say, “Don’t tell me she’s at home with Phyllis; I saw her, she’s in the river!”
I was difficult to redirect at those times, because I was so passionate about whatever I was believing. Ian would try to maintain a calm demeanour and tell me, straight up, “This is the situation: you’re in the hospital. Ellen’s fine. Brent is playing hockey in Atlanta.” But I couldn’t absorb that. Saying that my baby Brent was playing hockey in Atlanta was like talking Chinese to me.
My days at the hospital were very structured, and I was not always happy about that. Ironically, after years of coaching my kids on how to succeed and persevere, I wasn’t too interested, at that point, in having other people tell me what was best for me to do. But it was important in the recovery process to maintain the same routine, so that was one of the therapists’ goals. They had me get up at the exact same time every morning, shower and have breakfast on schedule. The more I improved, the more they got me to do. Eventually, they got me to prepare my own breakfast. Even making a cup of tea was challenging at first because of my poor attention span, and because the sequencing of a task like that was overwhelming.
IAN: My job
was to work myself out of a job, because in this situation, as his therapist, I was his surrogate brain, his mental walking stick, which he needed until his brain healed and he got his mental strength back. I have to admit that working with Wally day after day at that stage was physically exhausting and emotionally draining. I used to go home and have nightmares, he had me so wound up! You can place someone in what you think is a calm, pleasant atmosphere, but even that doesn’t help. To this day, I would say that he was probably the most challenging client I’ve ever worked with.
It was my high energy and constant panic that made me such a handful. Ian had to expend so much of his own energy when working with me. There was never any downtime. Getting me to rest … I would not rest! And rest is important after an aneurysm. I would almost be crying because I couldn’t settle. Ian would be sitting on my bed with his hands on my legs, saying, “Wally, you need to rest.” And I’d be in tears, saying, “I gotta go, I gotta go.”
I cried a lot. I got only very broken sleep. I would sleep an hour, just from exhaustion, and then I’d wake up. They tried to use the least amount of medication possible, because they didn’t want to cloud my cognition any more than it was already. I would have been more heavily medicated if I hadn’t been in a rehab facility. Initially, I would have only a couple of hours sleep at a time. I’d wake up and wander. Ian would be working the night shift, sitting and drinking decaffeinated tea and eating biscuits with me at three in the morning.
Ian, or whoever was working, would sit in the workstation and watch me on the monitor. If I stood and looked disturbed, they’d come in and do their best to get me back to bed. But half the time, I’d go to the kitchen and have some tea. I was always a little calmer in the middle of the night. I was still confused, but not in panic mode so much—probably because I was tired, plus the fact that it was quieter at night. But usually my sleep wasn’t great, and one of the goals was to get me to have a good night’s sleep.
We also did orientation exercises under the direction of a psychometrist, John Sullivan. Ian and I would sit together at a desk, and I would answer questions: What’s the month? What’s the day? How old are you? They would ask a lot of questions that they knew I had the answers to, to keep me interested—I liked to get them right!—and then they would ask me questions that I’d find more difficult: What is the date today? Where are you? What happened to you? And we went through probably thousands of trials, thousands. Because, like I said, as my brain recovered, I could retain more. It was just a matter of doing as much mental drill work as I could to get my brain literally back in shape.
I was also on a physical exercise program. They used to take me to the basement where they had exercise bikes and treadmills. The biggest barrier to doing anything wasn’t my medication, it was my attitude! Getting me on the exercise bike was a challenge for Ian, because I simply wasn’t interested. I didn’t have any insight into what was going on, so how could they make me understand that it would be good for me to get on an exercise bike? That was always the biggest barrier: my inability to retain the slightest interest in doing something physical.
There’s not a lot of research indicating that paper and pencil exercises are helpful with somebody like me, but Ian did them anyway, and I think they helped. I had such a poor attention span. I wasn’t retaining anything, because I wasn’t really making an effort to hear what anyone was saying. So they did some attention-training exercises with me, exercises as simple as listening to numbers on a tape, which would normally be a boring thing for someone to do. But I’d sit there, listening to the tape and writing out the numbers for maybe five minutes at a time. That’s what I would do for five minutes out of the eight hours Ian spent with me every day.
IAN: As rehab specialists, we’re told to separate ourselves emotionally but be compassionate. With Wally, because I worked with him every shift that I worked, he came to know me. I’d walk into the cottage, and he would say, “Stef, you’re here!” as if he was just really glad to see me. Because I spent so much time with him, I think he started to trust me. He and I really formed a bond. I get attached to all the people that I work with, but my heart really went out to Wally. He tried so hard. He had such a will. And even when he was at his worst, he was always looking out for someone else. He noticed the other patients who were in even worse shape than he was, and he’d sort of take them under his wing. There was one lady in particular, who was always looking for extra food, and we were trying to monitor her diet. Walter would sneak food to her, because she was always saying she was hungry. You know, he just had that gracious, caring quality. It always came through. A true gentleman. All the nurses fell in love with him! When he got mad at me, I never took it personally. I felt I couldn’t do enough for him. I stayed later. I would call when I was off just to see how he was doing.
It’s easy to lose hope, because the process of recovery after that kind of brain injury can be so long, but I never lost hope with Wally. He had moments when I thought, “Well, if he can do that, if he can be lucid for one minute out of twenty-four hours, that means there’s room to grow.” There were moments when he would just sit down for a second and cry, and say, “I just want to get better.” For that second, he would clue in.
I have the vaguest memories of cluing in for those few seconds that Ian talks about. Every now and then, I get a flash, just a small image, from that time, of me, sitting there thinking, “I don’t want to be here. Please let me leave.” I remember faces. Ian has taken me back down there to visit, and I recognized the supervisor, Shirley Holtrop, and some other therapists who worked with me a lot. I believe I even remember the lady who was always hungry. But mostly it’s a blur. All I know is that the one thing I wanted most was to go home and be with my family. That was my entire focus, and resenting and hating the separation was the underlying feeling in all my anxiety and panic. I felt I needed to protect my family and was being prevented from doing so, for reasons I simply could not grasp. But when I went home for visits, I wasn’t happy there either, and wanted to be somewhere else.
They say that the role of the family of someone who has had a stroke is as important as the therapists’, if not more important, and that makes complete sense. The day I arrived at the East Cottage, the staff had a meeting with Phyllis and Kim to learn as much about me as possible. No brain injury is the same, because all of us have different personalities —the key to successful rehabilitation is not only knowing the type of head injury but also the type of head! So, they needed a lot of information. They learned about my personality and routines. They wanted to know who I was before the injury so they’d have some sense of who I could be after I left formal rehabilitation. And they want to gear your recovery program to what your life is going to be like when you go home.
IAN: The family is always a huge part of a person’s recovery, because it’s what the person has to hang on to. I haven’t met a family more dedicated than the Gretzkys. Phyllis and Kim were there literally every day. All of them, when they could be. I remember the first time Wayne came to visit, quite early on, and I knew immediately he was a good guy. He was very friendly and down-to-earth, just talking with everyone. Of course, there was a lot of excitement beforehand amongst the staff when he’d visit, but he put people at ease. He was just there to see his dad, like any other visitor, and you could see he really cared about him and wanted to make sure he got the best treatment possible.
Obviously, Wayne was living far away, and actually all the boys were far away, so it wasn’t possible for them to be there physically a lot of the time. But they called the unit constantly and asked Ian or whoever was there for an update. Wayne would call almost daily as he was driving to the practice rink in L.A. or driving home, and ask, “How’s my dad?” Glen, Keith, Brent, they all called. Kim, because she lives here, visited just about every day. She would bring Tim Hortons coffee in for the staff every evening. Phyllis was there, as well. They came together quite often.
I always had a ton of visitors. Initially, when th
ey came to the door, the staff would say, “Sorry, we have to clear it with the family before we can let anybody in.” My dear friend Butch came to the door one night just shortly after I was admitted. He had a bag of Oreos, and he wanted to see me. Ian had to say, “Sorry, I can’t let anybody in. The family needs to screen who can and can’t come.” In his heart he knew that this was my buddy, but he had to make sure, just in case. So he called Phyllis in Brantford, but couldn’t get her, and then tried to get hold of Kim, but couldn’t get her. He didn’t know what to do. He went into my bedroom and there was a picture of Butch on the wall with me, holding a big fish! So he went back to the door and said, “Come on in.” Butch was another one who was there every single night. Didn’t matter if there was a snowstorm, he would drive down from Brantford to see me. Ian says he was visibly upset just at the sight of me. We were such good buddies. Other friends visited too: Eddie, Charlie Henry whenever he could get down from Ottawa, Ron Finucan. And everyone was pretty excited the day Bobby Orr came to see me!
I was in the rehab unit for about ten months. To prepare me for going home, they would take me to Brantford for four hours or to the farm. If Ian was working evenings, he would take me home to watch a hockey game on the dish, one of Wayne’s games, with Butch and Eddie. Taking me home on passes was all for therapy purposes, to reintroduce me to my own life.
It makes sense, really, that the best place for a person to recover is home, if that’s manageable, because everything’s familiar. But I wasn’t ready to go home until August, 1992, when I was finally discharged. Even then, I was still in bad shape. I needed to be reminded of things and continued to have periods of panic. I think, looking back, that I made most of my gains when I went home. I made gains at the hospital with basic things like grooming and making myself a cup of tea, but I still needed a lot of care, twenty-four-hour supervision.
On Family, Hockey and Healing Page 12