Читать книгу Crashing Into Potential - Scott B Harris - Страница 7

You are now a lot more impatient in that you need things done straight away.

- BRETT HARRIS

On 10 December I was moved like a piece of valuable cargo from The Royal Melbourne Hospital to Epworth Rehabilitation in Camberwell. As it turned out, this became my home for the next six months. It was common knowledge by now that I had severe brain damage. I was taken to the Acquired Brain Injury Unit, which was the most serious part of the hospital. Most people who entered those gates had been in a serious accident, often involving a vehicle on the road.

By this stage it was becoming apparent to my immediate family that I might never gain the independence that is mandatory to being a grown up. But I was determined to give it all I had. If I was ever going to gain the ability to live an independent life again, this was the place to learn how – within the walls of Epworth Rehabilitation.

Around the same time as my admission, an older gentleman settled in too. He was seventy years old and had been hit by a car while riding his pushbike. To be riding a pushbike on the road at seventy he must have been at the top of his game, but age definitely wasn’t on his side. He had suffered head trauma and it was quite sad knowing that he most likely would never snap out of his oblivious state. The older you get, the less chance your brain has of recovery; but for me, being only twenty-three meant there were high hopes. You can never recover fully from an injured brain like mine, but fortunately I was in the best environment with the best people to teach me how to live with my disabilities.

People who have been in a serious accident, or just concussed from a knock to the head, will likely be in a state of Post-Traumatic Amnesia. PTA is a system recovery that your brain goes through after a head injury and the amount of time you spend in that state will reflect on the damage that’s been done. It will also determine your chances of getting back in the game.

I don’t remember much from this time, but while I was back in The Royal Melbourne Hospital I can clearly recall the feeling when I removed a tube from my mouth. It was one of the many keeping me alive, but I was obviously sick of it. Although I wasn’t conscious, there was something tickling my throat. To scratch it, I discovered that all I had to do was pull on the thing that was coming out of my mouth. Well, that ‘thing’ was a tube and it wasn’t just in my mouth, it was all the way down my throat. I say ‘a tube’, but I don’t know which tube it was because I attempted to get them all out at one point or another. I pulled it out a bit and it kept coming, so I kept pulling. Eventually it came out. I can remember that it felt like a rat crawling its way up my insides.

Another memory was to do with my catheter tube, the tube that helped me go to the bathroom. The way a catheter works is that it gets fed into your bladder and, to stay in, it expands at the end so it can’t be removed. Well, I proved that wrong. I found it so annoying that I removed this twice. Along with Jaclyn feeding me, these were the only things my brain held on to.

The recovery mode in PTA required a very low stimulus environment with no TV, no friends and no chance of making any funny gags. My inner tribe, as I call my immediate family, were the only visitors I was allowed and they were told there was to be minimal stimulation to my brain. I do, however, remember laughing uncontrollably at things a twenty-three year-old shouldn’t laugh at. Fits of laughter are a common occurrence with a brain injury. Even today I cannot control my laughter, which can sometimes be very inappropriate and come out at the wrong times. I slip back into my immature laughing fits every now and then, but this is something that I have been mindfully trying to fix for years. One little fart and I lose it. There’s no coming back from that. Is this the injured brain in me or the young ‘boy’ in me?

I’m not sure if my family and I laughed at things that happened because they were genuinely funny or because everyone was just happy I was alive.

Dad had recently retired from work and his big plan had been to set off and enjoy his retirement. That was before his world went back twenty-three years and he found himself caring for a fully grown infant. While relearning how to live I was like a kid maturing all over again. As a father of three adult children, the last thing Dad could imagine doing was wiping his twenty-three year-old son’s arse, but this just had to be done, and, no questions asked, Dad put up his hand and took one for the team on that job.

As I said, I don’t remember much from this time but luckily I’ve always had my parents around so that they could remind me exactly what had happened. The emails Dad wrote and that I would read later definitely were a factor in helping me solve this 1000-piece jigsaw puzzle.

Thursday, 11 December 2008

Hi all,

Progress continues. Language yesterday was a couple of whispered words. Today, short sentences with humour attached. E.g. Deb andI were visiting and Scott’s sister and husband arrived for the tag team. Talking to Nicole, I asked how she was to which she politely responded with, ‘Yeah, I’m ok.’ To this Scott reaches out to his sister and uttered, ‘You’re ok, but I’m FUCKED.’ This was followed by a grin that had Nicole in hysterics. Another comment, which amused me, was that just before his dinner arrived I commented that I hoped he would get soup tonight knowing that he is a soup lover from way back. His response, he tapped his chest and said, ‘me too’. Late this afternoon he took his first steps (I mean shuffle). Scott was supported by his physiotherapist and shuffled from outside his room back to his bed. He is now eating well (lasagne puree tonight).

Another amusing comment made nearing the end of dinner from him was, ‘It’s cold.’ Forget Scott, we were glad that it was cold simply because it prompted such a comment. (Small things amuse small minds I guess, but when you haven’t heard him mutter a word for three and a half weeks, it’s amazing what will tickle ya fancy). I think that we have reached a point now where my reports are telling you about small events that are big in our minds, but small in the overall journey. I have now decided that I will pull back on daily updates and provide you with more significant weeklies unless I hear from enough of you that still want to be kept informed on a more regular basis. I don’t mind either way but don’t wish to bore you with small events that are significant to us but small in the overall. I’ll let you guys make that call.

Regards,

Harris family

Settling into Epworth Rehabilitation wasn’t a challenge for me because as far as I was concerned, I was only going to be in there for a short time, a few weeks tops. This was the state of mind an injured brain could be in. At this point, I was completely oblivious to the impact my brain injury had on my family and friends, and the impact it was going to have on the rest of my life. All I knew was that I wasn’t at work and that I would be in hospital for the next few weeks; I was in a room sleeping a lot and I was getting A LOT of attention. The next few weeks came and went and I was still there, so maybe this was a little worse than I first thought, and maybe it would be a bit longer until I would be back at work and into the on-site banter.

Because I had endured broken bones and a beaten-up body in the past from sporting injuries, this really felt no different. This was just another time I have hurt myself. This feeling was probably due to the highly effective medication I was zoned out on each day. I was given the medication to relieve the pain and it did exactly that. The only thought running through my head was that I would be off work for the rest of the year. Being December, I expected to be back at work in the New Year. When the weeks turned into months and then each month came and went, I couldn’t comprehend why my body wasn’t

healing. Was this accident a bit more serious than I first realised? I eventually came to understand that it wasn’t a matter of ‘when’ I would return to work, but ‘if’.

This wasn’t exactly an exciting time for the family when they came to visit as I was asleep most of the time. For the few hours I was awake, I had some lightweight rehab sessions and some family time. Being summer, the weather was beautiful, but I only had one visit to the outside world before I was inside again. Being confined to my room for so long, I built up an image of the hospital in my head, and I was simply blown away by its sheer size (so I’m told). The hospital isn’t really that big, but when you have been spending day and night in one room the size of a luxurious dog kennel, the rest of the complex really did feel like a small city.

Saturday, 20 December 2008

Hi all,

Scott had a visit today from his dog Zoe, which he really enjoyed. The Rehab centre gave the ok for Zoe to now visit on a regular basis. Scott was given a tour of the facilities for the first time being taken around the centre in a wheelchair. Having been confined to his room to date he was surprised as to the size and the facilities contained within.

He was shown the gym and told to expect to be introduced to it next week. He was shown the workshop and introduced to the instructor who told Scott that he was welcome down the track to come and get involved. He was shown a small kitchen where patients could go and do a bit of cooking (all part of the rehab program) and he was taken to the rooftop outdoor courtyard where he could go and enjoy the sun and also make use of the BBQ.

Scott finally snapped out of his bored state of mind and marvelled at the extent of the facilities and the hospital’s size. He met a couple of patients who were close to his age and had conversations with them. He now has a better understanding of where he is and the road ahead. He is progressing towards the end of PTA but still a little way to go. His doctors and physios are all pleased with his progress to date. He now has a small amount of movement in his right hand and fingers plus elbow and shoulder. He is experiencing numbness in this arm, which, we are told, is a good sign. So we cross our fingers and hope that the next week brings similar progress to that of his WEEK ONE at Epworth.

Regards,

Harris family

Although I didn’t understand why then, I wasn’t allowed visits from friends and extended family members. This was because I was in PTA and my brain was still trying to boot up. If I had any chance of a system recovery, then any extra stimulation could cause a system crash and would need to be minimised. Post Traumatic Amnesia is a state that everyone goes through after receiving a head injury and the length of time you are in this state is a good indication of the severity of the damage you’ve done to your brain.

When it was time to move onto the next step in my life, the occupational therapist came to do an evaluation on me. To show that I was beyond PTA all I had to do was pass this evaluation and it was then, and only then, that I could walk up to race with the rest of my team. In other words, I would be free to socialise. The evaluation consisted of easy questions such as what is my name, what is my age, where do I live, the date, and those sorts of things.

They appeared to be trick questions, but when I look back on them now, I realise how important it was to my health that I got them right. I needed to answer the same set of questions correctly three days in a row, proving that my injured brain could form new memories – that was how I could continue to move on with my broken life.

On the second day the OT (occupational therapist) asked me one of those trick questions: ‘Scott, what is the date of Christmas?’ I had got wind that I may be out of PTA soon, so I knew that I had to get this one right. I put my thinking cap on tight, held my breath and said, ‘25th...of December...umm.’ Come on, Scott, you know this one, I thought, but I was tossing up between 1984 and 1985. Think, Scott, think! ‘25th of December...1985.’ Yes, I remembered! Nailed it. BOOM.

Mum was holding back the laughter for what her son had said, but at the same time she let out a sigh. Not of relief, but of disappointment when she snapped back into reality and was reminded of what this accident had done to me. She tapped me on the shoulder and said, ‘That was good, Scott, Christmas is on the 25th and indeed, it is in December. But Christmas is every year, not just 1985.’

I realised she was right and I thought, how did you get that wrong? The answer was there in that thick skull of yours and you said that? This was embarrassing mostly because I let Mum down. I was so angry with myself. The positives we took out of this was that, in fact, it was a good sign because at least I could register that I got it wrong and didn’t think, I don’t get it, I swear Christmas was in 1985. ‘Apparently’ an injured brain finds it hard to make new memories when experiencing PTA, so it wasn’t too long before I forgot the stupid answer I’d given and we’d start over.

Christmas 2008 came around and I wasn't yet out of PTA, which meant that I could not enjoy the day with the rest of the tribe. Instead, I spent it with my dad in a dark room. The family in Melbourne were all hoping that I would make it, but because I couldn’t, they gave me a phone call instead. So did my mother’s side of the family in Queensland.

Thursday 25 December 2008

Hi all,

Thanks for the call at the hospital today. It made Scott feel a little special given he would have loved to be at both Bruce’s house and in Qld. But in his words, SHIT HAPPENS. He commented, ‘that was nice’, followed by ‘I’ve got a lot of people to thank’.

Given the circumstances, I’m pretty sure he was pleased to have my company. Pretty cool, eh? Having your dad feed you and hold the pee bottle for Christmas Day but hey, shit really does happen. I have got one thing to say in agreement with Scott, the hospital food is simply CRAP.

Regards,

Harris family

As it turned out, on Christmas Day I passed the evaluation and was released from the PTA. I was released from what felt to me like a well- meaning form of solitary confinement. Finally, I answered the same set of questions right, three days in a row. I could now have visitors.

Thursday, 1 January 2009

Hi all,

On behalf of Scott, I would like to take this opportunity to wish you all a very happy new year. Scott is progressing well and has now been given the go ahead to have visitors. Given this is the first step, we would like to take things gradually, i.e. two visitors at a time would be what we would like at this stage. To coordinate this to some extent, maybe you could give us a call so we can give you some idea of atime that would suit. As he progresses over coming weeks the visiting regime will loosen up a little to allow small groups of friends to visit together. At the moment he has become a little bored and would really appreciate visits from friends and family.

Scott’s speech is improving daily but is still a little slow. This is dueto numbness still around his face and mouth that limits his abilityto roll his tongue and he is still having some problems with his right arm. He can move his fingers and shoulder but between the two is problematic at the moment. We are told that his triceps are working, which control the opening up of the arm, but at this stage the bicepis not working. The bicep is the muscle that allows you to close your arm and is needed to carry weight etc. The doctors do not know at this stage what the outcome will be but continue to say that it is very early days and that movement is still a distinct possible outcome. Scott still has double vision but the positive of this is that he can have twice as many visitors at any one time (two of his old man at the one time is stretching this though). All up, the feedback we are getting from nursing staff is that he is doing real well and that we should see good progress now that he has moved beyond PTA and is able to do more rehab. These reports on Scott’s progress to date have detailed his condition from November 15th until now with something new happening almost daily. Further progress will continue but at times it will be hard for me to detail significant change as improvement will be in most instances slow. I will endeavour to highlight to you when Deb and I see significant changes. For us, we see the giant steps forward when we reflect on past week/s.

PS In Scott’s room there is a Visitors Book. We would appreciate itif you could record your visit with a comment of some sort in relation to your time spent with him. We would like to have this as a record for Scott to look back on and reflect on those who have joined in on his journey and to realise how far he has come from November 15th, 2008. For all visitors please be aware that his short-term memoryhas been severely affected BUT is improving. To help him, askhim questions like, ‘who have you had visiting’, ‘what did you have for lunch’, ‘nurses names?’, ‘what did you do in rehab today’, etc. Questions of a similar kind will help in this area. If you concentrate ONLY on pre-accident you will think that there was nothing much wrong because his long-term memory here is ok. He will want to know about the accident and this is only natural; try to refocus him on something else, but don’t simply fob him off in the process. Perhaps you could say, ‘if you knew the details, what would it change moving forward?’, ‘it won’t change anything’, ‘if you know the details, what then?’ or ‘you are getting better and that’s all that matters’.

Regards,

Harris family

From the moment my parents were told I had a brain injury, they began to research it. They didn’t realise how little they knew about the brain, in fact, how little anyone actually knows about the brain. For a long time, scientists have had the notion that the brain is fixed and unchanging. As time goes on and we put the puzzle together, new science tells us that the brain does indeed change. This is called neuroplasticity.

Vic picked up the book The Brain That Changes Itself by Norman Doidge and couldn’t put it down. It is about the phenomenon of neuroplasticity and how the brain can change its structural formation and function, when it was once thought to be static. It was thought that when a part of the brain dies, it’s dead, but we now know through science that the brain will form new connections between neurons (brain cells) when other parts are damaged or dead. The brain is like a super computer with no manual. It is very powerful, but we know very little about it. We humans are slowly but surely writing our own instruction manual on how we think it works.

My family now had hope for my recovery. Not a full recovery, but at least partial. To help me along this path, the medical staff explained to my immediate family that when they visited I should have as little stimulation as possible at first, to give my injured brain a chance to recover, and later I needed positive stimulation. Knowing that people wanted to visit me the staff told them that the right way to stimulate my injured brain was to ask me positive questions in a positive way that would make me think.

Positive stimulation is good for anyone’s brain, especially an injured brain. Knowing this, it became a ritual to do a Sudoku puzzle with my dad. A Sudoku is a number puzzle that generally comes in three levels: easy, medium and difficult. Doing these puzzles together was fun. It kind of felt like Dad was sitting down with his son to read him a bedtime story and in some ways, it was. It really felt like I was a child again and I had to start from scratch. We started off on the easy ones, with my dad looking over my shoulder and pointing to the boxes and basically giving me the answers in a very discreet way – ‘No it’s not four, that was close. I’ll give you a hint: it’s above five and below seven.’ Having this help meant that I did not get these wrong, which gave me encouragement. Doing these puzzles became such a habit to me that in later years I would be able to sit down and do these on my own, without Dad’s help.