Blind sight
I had read Dr Oliver Sacks’, book The Man Who Mistook His Wife For A Hat some years earlier. Dr Sacks is a British born American neurologist who has spent his life working with brain damaged people. I had always been amazed at the various and bizarre malfunctions that had occurred in the brains of his patients and his ability to describe and enlighten the lay person on these conditions. His empathy towards these unfortunate people was great and his enthusiasm in endeavouring to find a solution to their problems inexhaustible.
I found great comfort in his story of Christina, the disembodied lady. Dr. Sacks introduces us to the concept that we have a hidden sense, beyond the normal ones of sight, hearing, touch, smell and taste. This sense is called proprioception and is the ability to recognize our bodies as our own and not someone else’s and to know where they are spatially. The word proprioception is derived from the Latin words meaning one’s own. However, because we rarely ever lose our bodies’ eyesight we tend to dismiss this sense of self as being unimportant. How could we ever imagine that our bodies were not our own or that we did not know where they were?
I can remember looking at each of our grandchildren from their birth on, being amazed as they gradually grew aware of their own bodies. Images of babies lying on the floor, waving their hands in front of their eyes, as if they were unaware if those tiny hands were part of the mobile swinging above them or an extension of themselves. It did not take long before the child not only recognized that this was still her, but that she had control over it and could make it work for her. Cate, at six months knows that her hand can reach out and grab anything to put in her mouth. Discrimination between what is edible and what is not is still a grey area.
‘If I can reach it with my fingers and can put it in my mouth, it must be food!’ so her logic goes.
Looking back, I remember the problems my daughter Fiona had in ballet class. She had grown so rapidly that her arms and legs seemed out of place. It was as if her body image of herself had not grown as quickly. She was still the little girl body inside the tall woman. The little girl shape inside had to grow to fit the new outside – literally growing into one’s own skin.
This hidden sense that Dr Sacks describes, consists of three components. One is our sight, another the organs of balance – the semi-lunar canals found in our middle ear – and thirdly, the sensory perception of the body itself – the body’s own eye. In his story of Christina, she lost all of this sensory perception following a viral infection that affected her spinal cord and brain, leaving her without a body. By carefully watching herself and posturing she managed to carry on with her life, although not a normal life. Every action had to be thought through and then performed. Nothing was natural or automatic. My situation was much less serious than Christina’s. Only my dead fish hand and my ice block foot seemed to have lost their sight and were blind, and I still knew that my right side did indeed belong to me. Although I could not feel any of this delinquent right side, it was part of my body and belonged to nobody else.
Sensational
After a few days I started feeling some sensations over various parts of my body, but they were anything but normal. There seemed to be no order in the way that they occurred or where I was experiencing these new feelings. I found out that they seemed to be random events, rather than a progression of ordered recovery. I would make a report each day to the family as to what was happening, but soon realised that the three weeks recovery time I had been given was very unrealistic. Maybe more damage had been done than we first thought, or perhaps I was just slow.
The first sensations to break through the numbness and deadness I was saddled with were small areas of pins and needles. Then I experienced waves or ripples of pain moving along a limb or torso. Tingling sensations, like tiny electrical discharges appeared and it felt similar to the response on one’s tongue when eating fruit tingles or taking a mouthful of sherbet. I referred to the ants crawling up and down my skin as the creepy crawlies, and fizzing described larger electrical discharges than the tingles, coming from the surface of my skin. More irritating to me were the prickles, as if my skin was in contact with blackberry thorns or was being rubbed with coarse sandpaper. There were strange feelings around the base of a finger or toe, which I called ringbarking, and it felt as if a tight elastic band was constricting the flow of blood to that digit. These developed into large bands, like bandages, tightly squeezing my arm and leg or body. This sensation could last for days at a time, compressing or crushing the limb or torso, and making it hard to breathe as I could not expand my chest.
My right hand felt as if it was enclosed in a very large, very thick leather work glove, and the only feeling I experienced was deep inside the tissues. Harder to bear was the sharp burning response to a light touch on the skin. The knife cut described the sensation when anything touched the palm of my right hand and I felt as if I was being sliced by a sharp blade.
I was determined to work on my right hand and endeavoured to get it to function again. I had almost completed a child’s jumper before the stroke and decided that I would do some rehabilitation on my hand and encourage it to work by doing some knitting to finish the garment. It was hard work to even catch the fingers of my right hand, thread the yarn over my hand and hold the knitting needle in my limp fish appendage. I needed to use my left hand to place the needle in my right hand, folding the fingers one by one into their correct positions. I could not believe that my fingers had no memory of an activity that I had been doing for well over fifty years. Then still using my left hand I draped the wool around my fingers. To knit I had to get my left hand to do all the work, wrapping the thread around the needle, pushing the right hand needle off the left one and transferring the single stitch to the right side. For every stitch I did correctly, I would drop a stitch, or drop the needle, no matter how hard I willed my fingers to work by staring at them intently. It took twenty times longer to knit the last ten centimetres than it had to knit all the rest of the garment. But I did it. I had achieved another goal. In the past I had always used knitting as a relaxing activity. I could watch TV or carry on a conversation and my fingers would still carry out their task. Now it requires my full attention to produce each stitch.
Caged
It was just after my first week at home that I started to suffer from cabin fever. I know I had only been in hospital one day and then back home, but already I felt the walls closing in on me. Just knowing that I could not drive my car or walk outside the house without assistance because I was likely to fall was enough to make me feel trapped. Years earlier on an overseas trip I had talked to many Canadians, and had been utterly amazed by their fortitude. I could identify with the majority of the Canadian psyche, except for this one trait, their ability to cope with the long months of winter and being snowbound.
Up in the Yukon Territory, north of British Columbia, the Top of the World highway runs through the old gold mining town of Dawson City. The locals were a bright and cheerful lot in the summer when I was there. They enjoyed the sunny days and nights as the sun never set. However, how they managed to keep their morale at a high level when for seven months of the year the town is snowed in I will never know.
There is no bridge across the mighty Yukon River joining the two parts of the highway into Alaska. Instead the government ferry freely transports vehicles and pedestrians
from one bank to the other of the fast flowing river. In winter the highway continues uninterrupted across the frozen river of ice to complete its journey to Chicken, Eagle and onto Anchorage. And cabin fever is what those who winter over experience. Days and days of being unable to leave their houses, no sunlight, only darkness and perpetual twilight as the sun never rises. I needed to see faces, places and spaces and Graham’s feeling that it was better for me not to leave the house until I was better only made me feel worse. The local doctor, when I visited him, immediately prescribed for me lots of visitors and all the outings that I could possibly imagine and after follo
wing his treatment to the letter the depression began to lift.
Chop Suey
At the beginning of September, my husband and I went out for dinner for my birthday at a local Chinese restaurant. We were asked if we wanted chopsticks with our meal or Western cutlery and decided on the chopsticks. This was another challenge for me.
Could I actually hold the chopsticks in my damaged hand and control their movements? I started to practice with the prawn crackers on our table and at first it was a complete disaster. I needed my left hand to hold the right hand fingers over the chopsticks and then trying to make them open and close and not drop the food was rather difficult.
However, by the time we had completed the meal the hand was functioning very well and I was not too clumsy. In fact, because the food was all bite size, it was of no account that my right hand was too weak to use a knife to cut food. Perhaps all my knitting exercises had helped towards this newly returned skill.
To rehab or not to rehab?
After a visit to my local doctor, he agreed that I could benefit from physiotherapy and occupational therapy so he wrote me a referral to attend the local Rehabilitation Hospital. I had already been on the telephone without success to find a physiotherapist who would work with me. I had never realised there were so many specialized areas in physiotherapy and what I required was a neurological physiotherapist.
Years earlier I had experience with the Feldenkrais technique and knew this would be suitable for me. However, I was unable to find a practitioner of this technique in walking distance. After the surgery on my neck in 1991, for the removal of a disc that had ruptured and was pressing onto my spinal cord and a repair on my left knee for a torn cartilage I required some physiotherapy. I was fortunate to have found a physiotherapist who was a qualified Feldenkrais practioner. She described to me that in this technique, named for its inventor, gentle exercises are given to the unaffected side of stroke survivors.
Instead of just reaching for an object, which is a normal automatic action, one had to consider each individual movement. Which muscles were required to carry out the set task, breaking down complex movements into single components. Once the breakdown of individual events was learnt, the exercise was repeated on the damaged side with very good results. There was evidence of the brain’s ability to re-assign the role of the damaged section, to other parts of the brain, albeit not as efficiently as the original area. Although I had not had a stroke then, I was experiencing a lot of post-operative pain, not only from my neck and my knee, but also from complications after a hysterectomy six months earlier. In an effort to control the pain, I had successfully tuned out my left side so it no longer existed in my mind and I had no sense of it.
I knew that the local Rehabilitation Hospital certainly worked with stroke survivors and I was anxious to start. It was not easy joining there as an outpatient. My father, on the other hand, at ninety-one years of age, had been transferred there, five days after he had a stroke, from the acute hospital, and four weeks later was as good as new.
First I had to be assessed by the rehabilitation doctor and declared that I would benefit from the processes, then my private hospital insurance company had to approve the rehabilitation. Next came the assessment of my deficits by the physiotherapist and occupational therapist and at last I was given an appointment to attend my first session – four weeks after the stroke. I was allowed two hours of physiotherapy and two hours of occupational therapy each week, and it was impressed upon me the importance of practicing my exercises at home each day to obtain the best results from the therapy.
Sue, the physiotherapist, a cheery and bright-faced young woman, introduced me to the various pieces of equipment. Her brief was to increase my stamina so that I could better manage the affected weak right side. We went through the sequence of the step machine, pushing my feet against a resistance, and the treadmill where I was attached to the machine with a safety belt, in case I fell. Other pieces of equipment included the exercise bike, and the coffee grinder – a pedaling machine for increasing strength in the upper arms – a small flight of steps to climb up and down and a set of rocker boards. These are just a simple board with a block attached to the underside at its centre. One stands on it, one foot on each side and pushes down, alternating sides. Even though I could not feel my right foot and ankle doing any work at all, Sue was pleased that all my muscles and tendons were functioning normally. Then I was left on my own to do this circuit of exercises while she worked on her other clients.
The gym area at the hospital was decorated in green and gold balloons and banners as we had but a few days to go until the Olympic Games opening ceremony. I decided that I would award myself with a gold medal for my efforts and made a point that each session I attended I would exceed my personal best performance by at least twenty-five percent.
House of horrors
The occupational therapist was in charge of all other rehabilitation. Her brief was to allow me to achieve a normal as possible life style with the emphasis on functioning and the process of living. It was fascinating to see such a large and varied amount of equipment in this department. One room was set up as an operative kitchen, complete with microwave, sink, stove and refrigerator. I easily passed the test on making coffee for Barbara, the OT, and myself. I remembered to use my left hand for lifting hot or heavy utensils, but both hands to do the washing and the drying up.
We practiced pegging clothes on a clothes line, folding and unfolding towels, and discussed ways to make life safer and tasks easier in the home. Barb mentioned being efficient in the home and thinking ahead. But with five children to bring up, I already knew how to conserve energy and still finish the chores. I already had organized my kitchen to make the most use of the furniture and layout and to minimize extra walking.
The next room was lined with shelves full of instruments of torture. There were bolts to be unscrewed on pieces of timber, and then to screw back up, buttons to pick up and beads to sort and thread. The one exercise I dreaded most was the one that inflicted the worst pain. I had to put my right hand into a bowl of raw rice, and wriggle it around until I could find and draw out small objects hidden in its depths. The pain generated by every small grain of rice touching my hand and wrist was excruciating and I always hurried to finish this one and get it out of the way.
I was left on my own to carry out these tasks as Barb had another client to attend to at my appointed time. She would show me what I had to do and then she would disappear into the next room. Once I had finished the set task I was to knock on the door and she would return to me and give me another exercise to challenge my abilities. I felt very uneasy at interrupting another person’s important rehabilitation time and would continue to repeat each exercise over and over until Barb had time to return to me.
Another exercise involved a bowl filled with hot water and another with cold water. I had to plunge my right hand first into one and then the other to assault the senses. After this came the soothing part, my hand and arm were massaged before being rubbed down with a coarse towel. Everything was done to stimulate the nerves and bring their responses back to normal.
It quickly became apparent to me that I needed not only to be my own coach and steer a path of recovery for myself, but also to be my own cheerleader. I had to continue to be enthusiastic and positive and celebrate each milestone on the way. As I looked normal and could walk no one was aware of any of my deficits. Sensory perception cannot be seen, only felt. The loss of proprioception was mine alone. Lack of the ability to discern textures and temperatures of any objects was clearly only my problem. It was certainly not discernible to those around me. Pain is also invisible to those not experiencing it.
I had discovered at home the need to massage my arm and leg, and went through many jars of moisturiser. The whole of my right side was peeling and the skin was very dry. Barbara explained that this was a normal condition. The brain in endeavouring to recover and heal itself from the effects of the stroke, takes all availa
ble nutrients to do its job. So every day I would spend time revitalizing this side.
At the rehabilitation centre there was a large wooden solitaire game on the wall and I always took time to see if I could solve it in as short a time as possible. At home I made my own game using small lids as counters and practiced using thumb and first finger for the first game, thumb and second finger for the second and so on, trying to get the fingers to function. Concentrating on my moves rather than my fingers distracted me from the pain. I worked as hard as I was able to at each session to learn and experience all that I could.
After six visits of Physiotherapy and Occupational Therapy I was told I only needed to come once a week from now on. The rehabilitation team had reassessed my need for Physio and OT. I was unsure whether this meant that I was doing very well, or that I was not working hard enough.
The Physiotherapy and OT departments were safe and secure places to be in. There was no danger of being knocked over, or tripped up due to uneven floor surfaces and the staff were aware of our disabilities. All the clients supported each other when we achieved our goals. The mere fact that we were there meant that we had a need to recover either lost movement, sensation or abilities. Many of my fellow workers had knee reconstructions, or were recovering from car accidents. In the OT department, I met other stroke survivors and we were all interested in each other’s progress. We were all working so hard and concentrating on the task set in front of us, that it was difficult to find time to speak to each other. However, much could be conveyed by a smile or an encouraging look.
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