|How I learned to love my stroke|
"Simply by sailing in a new direction
You could enlarge the world."
Life is a journey, not a conclusion. A wise person makes the most of the journey. Only a fool spends all their time preparing for the conclusion.
Reaching the end of your life without ever having been alive is rather like moving into a house after someone else has built it. You will never understand the house because you were not there, immersed in the process, growing yourself just as the house was growing. It is too late to participate after it is over by choosing the taps or adding the furniture. When a house is seen as a product rather than a process people who might have been alive reduce themselves to mere consumers. Our cities are full of people who have already died living in dead houses playing someone else’s game. There has to be more to life than this.
If you are lucky enough to survive your stroke it could be seen as a wake up call.
There is an old Japanese haiku which says “Since my house burnt down I have a better view of the rising moon”.
Any person who has a stroke can choose whether to make it a tragedy or an opportunity.
To waste the opportunity trying to “recover” so that you can be less than you might otherwise have been is a tragedy indeed. Going backwards is even worse than standing still. The past has passed. It will never come again. When you look forward the questions you ask are different, and they can be driven by the excruciating clarity of the fact that the chips are down. Who was it who said “When the going gets tough the tough get going.”
Living in the past is just as foolish as living in the future. The present is all you have, and a wise person makes the most of it. Any person who lives every moment to the full not only looks back with no regrets but also has made the best possible preparation for the future. We should all feel sorry for those people who waste their childhood wishing they were grown up only to then spend their old age wishing they were young again.
When I lay in bed in the hospital immediately after my stroke I was thankful for all the things I had done. The mountains I had climbed, cycling across the Alps, hitching through Afganistan and Iraq, or rafting down the Motu. None of these things seemed to be on the agenda for the next few days, but I did not need to do them because I had grabbed the opportunity when it was there. The past gave me memories to enrich my present. Looking to the future was rather daunting, and very hard to predict, so it seemed best to deal with that when it arrived. The present was all I had.
The present is seldom entirely without options. My mind was not too good, it was hard to focus, and writing was almost impossible but I could draw circles. It was not much, but it was something to build on.
I could not believe my luck when the nurse brought around a menu. MRI and CAT scans were something of a mystery, but the taste and smell of good food offered a chance for healing. Although my eyes were not to good either I could clearly see “roast lamb” and “sticky date pudding with caramel sauce”. I circled my wildest desires and slipped back into a euphoric slumber waiting for tomorrow. Something had been achieved.
I need to say tomorrow because the hospital was not like a restaurant where your meal would arrive on the same day. I took about twenty four hours for news to get down to the basement kitchen and then for the food to get back up. Waiting however is a really useful way of filling in time. I thought of the time I had been left waiting in a cubicle in a hospital. After many hours a cleaner turned up rather than a doctor. The cleaner told me that all the doctors had gone home hours ago and suggested that perhaps I ought to do the same. One time I had spent four hours waiting in a queue only to find it was the wrong queue. Along the way I made friends with someone who would change my life.
Waiting can be elevated into an art form. It is something you can do when other options are limited. I thought of the joy of having been to “Waiting for Godot”, remembered RADA, London, and coming home to find a carcase of New Zealand lamb lying on the doorstep. You can lie happily in bed and think it all those wonderful experiences through again. The best time to avoid being bored is before you have a stroke.
Meanwhile time had passed in the kitchen too. The evening came and the morning came, and on the next day, remembering Genesis, there was a rattle in the corridor and the food trolley arrived with a Tongan smile. I lifted the lid full of expectation. When the steam cleared what I beheld looked like nothing in particular.
I would discover that it was called puree. It is hard to describe puree because it has no identifiable characteristics. It is rather like those non-people who sink into mediocrity in the suburbs to become completely indistinguishable from any of the other people in the same street. They all have the same haircut and they go to the same resort in Fiji for their holidays. They are the true non-people who will never make a difference to anything except global warming. Life has been wasted on them. Puree is rather like that.
Puree is what stroke victims get to eat if their throats are paralysed. The only good thing about puree is that in a hospital it comes with a menu for tomorrow. You put a circle around ‘roast lamb’ and ‘sticky date pudding with caramel sauce’ and keep hope alive for another day. Slowly you get better at drawing circles.
The menu changed once a week so diversity came into the equation as you had to think of something else to put a circle around. The puree however never changed.
Another wonderful bonus of being in hospital is that people wake you up at 2am to ask how you are feeling. It must be a trick. Surely everyone who gets woken up at 2am with a light shining in their eyes feels exactly the same. That moment of terror when you think you have been arrested and ended up in some fetid hell-hole where part of the torture was sleep-deprivation. It is such a relief to discover that you are only in hospital with nothing worse than a stroke. Nurses know how to make you feel really grateful.
Another trick the nurses used was to constantly ask what day it was and where you were. At first this seems to have some interest but over time time becomes increasingly irrelevant and you start wishing you were somewhere else. Eventually I explained that I was riding my steed across the steppes of Afganistan with the dust rising up behind and a caravanserai coming into view in the distant mountains. That was a mistake. They decided I must be coming up to discharge. Recovering has enormous disadvantages. They throw you out.
I was lucky to have an old tramping colleague who came to visit me as soon as I could get out of bed. We would go tramping together up and down the hospital corridors towing drips and other medical paraphernalia. Much later I was able to walk part of the Routeburn Track to stay with her in the Routeburn Flats hut where she was a warden. The Harris Saddle was of course too much, but the beauty of the moss made me so grateful that I had to go slowly. When a stroke slows you down you have a chance to notice what you might otherwise have missed. Most Kiwis just walk past our profusion of native orchids without realising what lies at their feet.
The hardest part of being discharged from a hospital is the terror of not knowing if you will be able to cope. Rather like life. I was lucky in that a sensitive nurse came to talk to me about my move up to the Rehab Unit. She explained to me how they would help me to lead a normal life. Why, I wondered, would anyone want to be normal. You only have one life. We agreed that I would head for home and leave the Rehab to those who wanted to be normal.
I was reminded of the time when I wanted to build myself a house. I went to the bank that never forgets and walked down a grey corridor to a grey office where a grey man asked me to tell him about my dreams. I had plenty and he had none. Finally he asked how much money I wanted. “Not one cent” I replied. “If your grey money is going to turn me into a grey person like you I want none of it.” I walked out into the sunshine and realised I had committed myself to building a house without using money. It was difficult, but not impossible. I made it, and it is a very comfortable house.
I had much to thank the grey man for. He had forced me into seeing clearly what I otherwise would never have seen. A stroke can clear our vision too, while there is still time to do something about it.
If you really want to do something do not ask “Can I do it?” but rather “How can I do it?” After a stroke you just need to be more ingenious. That may not be a bad thing.
I remember long ago when a paraplegic decided he wanted to climb Ruapehu. A crowd of mountaineers decided they could make that happen and with a banana boat and belays he was eventually deposited on the top of the mountain. I cannot speak for him but everyone else had an enormous amount of fun and there was a real sense of achievement. Some climbs you forget, but you could never forget the euphoria of conquering the impossible.
I thought of that when the happy firemen strapped me into a banana boat to get me up the hill immediately after my stroke. There was a job to be done and they were going to have fun doing it. I was lapsing in and out of consciousness, but I could remember the paraplegic’s banana boat going up Ruapehu.
On another occasion a Japanese friend of one of my mates wanted to climb Ruapehu. It did not look good when he began suffering from altitude sickness about the time we got to the Chateau. Fortunately he was light. We carried him all the way up and also deposited him on the top. He could not do it, but he did do it. Some people enjoy these little challenges. Once you have got past trying to prove things to yourself you can settle down and start helping other people.
Recently I had my 70th birthday and found that the sick, frail, and wheelchair bound found the hill too daunting a prospect. I could relate to their feelings.
One time I had taken my Maori students across to the Waiheke marae for a field trip. I was only able to get around on crutches and my leg was weighed down with plaster, after a car accident. The students decided to have a rough and tumble game of football and they wanted me to join in. It all seemed bizarre. Not so. I hobbled onto the field. When the ball got passed to me the whole world slowed down. As soon as I passed it down the line the game was back up to speed again. Those students taught me more than I ever taught them.
One of my mates suggested bringing the disabled around to Karaka Bay by boat for the party. Fortunately I had had some experience with taking wheelchair-bound people sailing on the Queen Charlotte, and also taking the intellectually disabled out on my own yacht. Getting on and off a yacht can be terrifying for someone who has had a stroke and lost their sense of balance. I was fortunately able to find the perfect answer. A barge with a landing craft ramp.
Rosemary took control of loading the barge at the Kohimarama boat ramp. She understood perfectly. I only had to tell her to forget the explanations and yell “jump”. If you think too much about anything you convince yourself it is impossible. On the other hand if you just take life one minute at a time and deal with the immediate problems confronting you then almost anything is possible. The wheelchair trundled aboard, and everyone else hobbled on too because they were not going to admit defeat when they were surrounded by positive energy and all the support they needed.
Richard, the skipper, had attitude. He gave everyone the ride of their lives. With life jackets rather than hospital pyjamas, and the salt spray blowing through their hair, everyone roared off down the harbour at 30 knots. No one wanted to get off at Karaka Bay so they all went on to Motukorea. The fit and able bodied followed in their wake.
Later in the day as the last boat pulled away from Karaka Bay to take the disabled home Helen sang out “Where is Dorita?” The stroke victim was having such a good time that she had forgotten to get the boat home. We went back to pick her up. I knew how Dorita felt.
Not long after I was out of hospital Elaine invited me to her birthday party. I could hardly walk, could not drive, and my larynx was paralysed. It was impossible so naturally I said “yes”. A couple of my friends carried me to the venue and propped me up in a chair on the verandah. I could not stand and I could not have a conversation but I could enjoy a plate of the most marvellous paella. The taste of Barcelona, the smell of salt air. Since that time I always seek out paella at events like the Mission Bay jazz festival. The taste reminds me of that birthday party.
It was at the Tamaki Yacht Club and from my seat I could look down the harbour and watch the navigation lights in the channel. I thought of sailing home at night down that channel, so tired that I almost ran down a Sea-Tow barge. That dark patch was not a headland as my groggy mind had thought. I have forgotten many parties but not that one nor the kindness of people to me. I just wanted to be ignored but I was probably more present than anyone else there.
Always say “yes”. In my life I have never regretted saying “yes”, but have often had cause to regret saying “no”. When you say “no” you never discover what you actually said no to. The potential of opportunity is closed off before the bud can open. When you say “yes” a world opens up which you could never have assumed might exist.
Having a stroke is a unique experience. If you end up with a stroke then make the most of it. It provides a chance, for example, to catch up on jobs which have been waiting around, perhaps for decades, because you were always too busy.
I was lucky. For a long time I had been intending to set up a web page. I had set up web pages before at the University but they had been so complicated that trying to administer them was a nightmare. My stroke came at just the right time. A young friend asked if he could stay for a couple of weeks while learning paragliding. The weather turned out to be against him but it was in my favour. He ended up bored with waiting for the sky to clear, and so happily showed me how to set up a very simple web page. Once the foundation was laid I could then do as much or as little as I liked. It was a big project but I was in control of my destiny.
Fatigue was a big problem for me, but now every time I needed to rest I could sit down and add something to my web page. It was exciting, it was fun, and I knew it had only become possible because of my stroke. With something achieved and a rest as a bonus I could go back to work outside.
For thirty years I had been meaning to knock down the ninety foot pine tree up the back of my property. I had never got around to doing it because it was a problem, and dealing with problems was never my idea of being alive. Now, with a stroke, the pine tree became an opportunity. I needed to get my sense of balance working again. Instead of doing useless boring exercises I could work out how to safely bring the tree down, piece by piece, knowing that it was far beyond my capability. It used to un-nerve visitors and they would go away thankful that they had not had a stroke. They could be normal.
With everything in my life taking longer some things had to drop off my agenda. My stroke became the perfect excuse. I needed to sort out what was important and I knew that if I was going to avoid common problems like depression I needed to reach the end of each day with a feeling of satisfaction.
I started taking time out to sit on the beach with a good book. Not just any book to fill in time but rather all those books which I should have read long ago. The phone kept ringing, as it always had, with everyone wanting help with all their problems, but now my stroke reminded me that I had priorities too. The stroke eliminated the guilt.
A stroke also teaches you new tricks. With reduced energy levels it was hard keeping in touch with friends. I began writing a “Letter to the Editor” every few months. The Editor never guessed that it was a great way of letting a wide circle of friends know that I was still alive. When concentration was a problem a letter was short and not too demanding. Like everything a letter can be an art form, and perfecting that was a very useful discipline.
Apart from the house I built at Karaka Bay I have built myself another house in the North Hokianga where I am involved with kiwi recovery and kauri restoration. It is an hours walk from the nearest road, so the physical challenges are considerable. Carrying anything more in has not been an option since my stroke so I needed to work around the resources already available. Laying the bricks already on site was both fun and very rewarding. Getting more bricks in was not an option. Identifying and recording species however is a light and not too demanding task. The stories need to be recorded and a history written. After a stroke you focus on what you can do, and just ignore the tasks you cannot do.
A stroke also opens up new challenges, and they can be very rewarding. When I was first allowed to drive I was very cautious. Trips to buy food were all I dared to do. However the time came when I was ready to make a 6000km trip around New Zealand to catch up with neglected friends and places. I was not ambitious, and mostly stayed in cabins or with friends so that I did not take the risk of becoming exhausted. My stroke provided the justification for a little edge of luxury and it was fantastic.
With a full programme “recovery” just becomes something which happens incidentally along the way. It is not a process of trying to go back to some mythical past but rather the constant process of healing which is part of all our lives.
Healing then becomes part of a much bigger picture. The planet is sick. It is being consumed by our greed and selfishness. Species are being lost, the land is being degraded, and all we seem to be able to produce is mediocrity. Most people lead wretched lives in a built environment quite devoid of quality. In this context our individual strokes seem quite inconsequential.
However learning to love our strokes is not inconsequential.
If we learn to live in the present of our stroke, rather than the past or the future, we will front up to what we can do right now to heal the planet. If we take a positive rather than a negative view of our stroke we will act creatively instead of passing ever more laws to stop people doing whatever it is we think they should not be doing. If we are forced by our stroke to see clearly what is important and what is not important then we might have the courage to move beyond materialistic consumerism to bathe in the spiritual beauty of life.
If we use our strokes to grasp more fully the meaning of life others may well look at us and say our stroke was the best thing which ever happened to us. Through pain and tragedy love can triumph.
No one would wish for a stroke, but if one is thrust upon us we may as well make the most of it.