Left of Tomorrow

by Wendy J. Lyons

  Now the story unfolded. I was in bed number twenty, ward so-and-so, floor such-and-such of this particular hospital, situated on that street, in the named suburb. Just as well the investigations did not have to go on for more than eight hours! It would have taken half an hour to deliver the answers alone, before the next review was to start.

  Round one

  I was brought back from my reverie of the past events of yesterday and into the present when we heard a commotion outside the door. The Great White Chief neurologist and the accompanying entourage of junior doctors had arrived at our ward. If I had considered that the room was already crowded, now it was overflowing. The extra nine or ten people filed in and arranged themselves around the first bed.

  I know the importance in a teaching hospital of having such a large group of doctors following the senior neurologist around. However, from the patient’s point of view it is rather unnerving to be questioned and examined in front of such a crowd. Not only does our privacy get sacrificed but it also feels as if we are no longer people with equal rights, but rather a medical condition with multiple deficits. We all had roles to play, and it was my part to be the patient ‘patient’ and allow the experts to practice their expertise, no matter how much I disliked the idea. I would have much preferred to be an interested and detached onlooker, than to be the object of their interest and speculation. I went through the same procedures as previously, and failed and passed the tests as I had done the night before. Certainly, as far as I could see, there seemed to be no more deterioration, but also no improvement in my condition.

  The Great White Chief spoke. I had suffered a left thalamic stroke because I was an uncontrolled diabetic.

  ‘It could have been prevented’, the neurologist pronounced, ‘however, take an aspirin a day and some Tegretol for the pain, and you can go home. Within the next three weeks you should regain almost all your normal functions,’ he finished.

  My daughter, Sandra, who is a qualified nursing sister, had been sitting beside me when the assembled doctors had arrived and had quickly taken in all that was happening.

  ‘She cannot take Tegretol, she has an allergic reaction to it,’ Sandra commented.

  The doctor’s reply was terse. ‘Who are you, telling me all

  this?’

  ‘Staff,’ my daughter replied calmly, as this was the hospital she worked at.

  ‘Oh, well, in that case take Panadol,’ and the group followed their leader out the door, and onto the next interesting case.

  It was very difficult to take in all these facts. I had been aware for a few hours that a stroke had happened. I was brain damaged, and it had taken place in an area that I was unaware of. The classes in Anatomy and Physiology years ago had never included the midbrain. Right and left hemispheres I knew, but the thalamus and its role in processing information, were new to me. However, I was rapidly learning about what I had lost. The news that I was a diabetic came as quite a shock. I had been regularly tested and had never had a problem with high blood sugar levels before. We did have a family history of mature age onset diabetes but I had no symptoms at all.

  As for the comment about the pain it made no sense to me. I had no pain. I had no feeling at all.

  The next part of the information given to us was encouraging. I would recover all functions within the next three weeks. How lucky was I? My father at age ninety-one had had a stroke affecting the movement of his left arm, and he had recovered full use of it after five weeks and had no further trouble with it. Only three weeks and I would be as good as new!

  This, therefore, was just a little hiccup in my life and I would soon be back to normal. I could take this as a wake up call and slow down a little. Take some time out for myself . The last few months had been very busy. There had been so much to do helping various members of my family. My darling little step mother had a stroke a few months earlier resulting in memory loss and was feeling very sad and lonely after my father had died. She did not know who I was, but she did know that I cared for her and loved her. After seventeen years in our family, she certainly belonged to us. Now I look back, I still do not believe I would have changed anything I had done. Her needs were great and it would not be for very long that I could actually help her. She died just a few months later.

  I was very pleased that I could go home that day, and did not need to stay in hospital any longer. The ward was for acute stroke patients and I was no longer acute. My experience as an in-patient, although of a minimal stay, showed me the incredible attitude of the nursing staff. The care and support they give to their charges is truly wonderful. I know that we the community will never be able to pay the nursing staff what they deserve. For like mothers, what they give to their patients that matters so much is from their hearts, rather than from their hands. The empathy that they feel for us as patients certainly helps us in coming to terms with our problems.

  It was also rather frightening to be going home. In hospital, I could pass the responsibility of my health onto the professionals, but at home I would be the one to monitor myself and make a judgement on how I was feeling. And right now I was scared. I had felt the flutter of the Angel of Death’s wings as they brushed past my cheek as he moved on and passed me by. However, I still felt as if I was standing on the edge of a precipice, and just the slightest breeze or some inattention on my part could topple me over into its depths. Hanging over my head was the thought that another stroke might follow the first one.

  Looking back, I can see I was probably in deep shock. It was more about what could have happened, how bad the outcome could have been, rather than that I had been so lucky. How was it that the balls had rolled and my numbers had come up and produced this scenario for me, when I could have easily been in the same condition as my roommate in the neighbouring bed? What was ahead of me? What could I expect? Were there no pamphlets explaining what had happened when one has a stroke? Where could I find out about post stroke recovery? I felt I was wandering about in a strange country without any signposts or a map to show me the way. How could I know where to go to extract myself from this dreadful maze without any directions? It left me feeling very vulnerable and very much alone. I had expected some information on rehabilitation and wondered if it was to be considered? Should I conclude that as it was not suggested, I did not require any, or simply that the hospital physiotherapist had not had time to visit me that day? Was there anything I ought to be doing myself to facilitate recovery? Was there some support system or group available for encouragement and suggestions on how I could help myself? The out patients appointment thirty five distant days away could perhaps give me all these answers, but meanwhile I was on my own.

  Part 2

  Culinary skills

  Graham helped me pack up my belongings and we were ready to leave. I shuffled along out of the ward to the lift and then to the outside world. We reached home and I faced the same front steps again. Was it only yesterday that I had been normal? Now I was irrevocably changed. Now I was brain damaged. Mentally I was still the same, it was only a physical change that had occurred. But it had happened and I could no longer believe I was invincible. I sat at the kitchen table, in my usual seat and looked around. Everything looked just the same as it always did, completely normal. Only I had changed, or perhaps, just my perception of me. I sat and sat and nothing happened and then I realised that as far as my family was concerned, I still looked perfectly normal. Only I could feel that half of me was missing, and I did not know where it had gone!

  It was late enough for tea and still we sat. I suddenly became aware that I was expected to perform my usual task of preparing and cooking dinner, whilst the others watched the six o’clock news. I had managed to shirk my responsibility the night before by having a stroke at teatime. Tonight I could not think of anything else that would out climax that stunt. Grilled steaks, steamed potatoes and pumpkin, some green beans or broccoli, would do for the first course and should be fairly easy to prepare, as I had done it often before. I was ab
le to pull out the various ingredients using my left hand only and filled the saucepan with water, noting that I could not hold the saucepan with my right hand as my hand was too weak.

  Cutting the potatoes into serving size pieces was a problem. Peeling them had proved impossible. I could not hold the peeler in my right hand, or in swapping hands, could not hold the potato in my right hand, so it was potatoes in jackets tonight. I held the knife in my left hand and eased it into the right hand, placing the fingers in the correct position, but there was no strength in the fingers and the potato just rolled away. Left-handed cutting was useless, far too dyslexic. So I ended up using both hands to cut, chasing the potato around the chopping board until I could corner it and slice it into pieces. Because I was unable to use my right hand to pick up anything at all, my left hand had plenty to do. It took at least twice as long to carry food, utensils, cutlery and crockery to the table, but at last I was able to announce proudly that dinner was ready.

  The same stubbornness that had kept me from requesting help in preparing the meal stayed with me after we had eaten. I piled up the plates and laboriously washed each one in the sink. Trying to hold the mop and clean the dishes required a tremendous effort. It became clear to me that I had to keep watching my right fingers. If I lost sight of them under the water in the sink, or in a cupboard, the fingers would immediately drop whatever they were holding. It was only my constant watching of them that made them work and perform their duty.

  Rest assured

  After this tremendous performance I was ready for bed. No more encores. I had discovered that I still could get a meal and clean up. I was not completely useless after all. Now if I could just manage the washing, ironing and house cleaning I still had a job as a housewife. Add to that the shopping, the gardening and the babysitting and I would not be a burden to anyone.

  My bed looked very inviting so I snuggled into the soft covers. I lay as usual on my right side, but now I could not feel the smoothness of the sheets on my leg, or the soft pressure of the doona touching my right hand. I now had to rely on my left side to tell me where I was in bed. Or how far away or how close to the edge of the bed I lay. I survived the first night without incident, but on subsequent nights I would fall out of the bed and land in a flurry of arms and legs on the floor. Sometimes, it would only take the slightest movement to dislodge my centre of gravity from the edge of the bed to the floor, bringing me with it. Unknowingly in my sleep I had rolled too close to the side of the bed. Other times it was caused by my sitting up too quickly and swinging my legs over the edge of the bed, forgetting in my haste that my right leg could not support me by itself.

  One morning, I jumped out of bed, unaware that my right foot was leading, and this limb would make contact with the floor first, but could not hold me up. I started to tilt towards the bedside table, and reached out with my closest hand to break the fall. My delinquent right hand missed the corner of the furniture and I toppled against it, unable to save myself. I had not realized that our new bedroom furniture consisted of so many edges and obtrusions until I landed on each one of them and slid ungracefully onto the floor. It must have been such a comical sight to any eyewitness and just thinking how ridiculous I must have looked, tickled my sense of humour and I burst out laughing. I must keep remembering – slowly, slowly, left foot first. Meanwhile I had a whole new set of technicolour bruises to admire in the mirror, all down my right side. But, looking on the bright side, even if they appeared painful, I could not feel them.

  There was another problem in positioning myself comfortably. My right hand kept slipping off the side of the bed, and the weight of this arm, pulling on the shoulder joint and across my back, caused severe pain. I found by keeping the arm wrapped around my body, catching my dead fish hand and tethering it under my left armpit, reduced the disturbed sleep and the dreadful dead weight of my right limb. Was it really twice as heavy as my left arm, or was it my disturbed perception that made it seem so?

  One alone

  Three days after I came home from the hospital, Graham went up to our house at Warburton for the weekend, leaving Saturday morning and returning home for tea on Sunday night. Alli had also organized to go away at the same time, so I was home alone with just the pets for company. Now I had the opportunity to consider just what had happened and what effects the stroke had on me.

  Starting from the top of my head on my right side, numbness replaced all normal feeling on my skin. My upper and lower eyelids were dead, but my right eye was unaffected. My ear was also involved, not only on the outside, but also in the canal, making it very difficult to hear on that side. My cheek and right side of my nose were also ‘missing’ and blowing my nose was a difficult and irritating task. My upper and lower lip, as well as inside my mouth were numb, but not my teeth nor my tongue. I could speak although my speech was sometimes slurred, however, eating or drinking were still precarious actions. I often split my drink as I was not aware if the edge of the cup or glass was actually in contact with my lip or if my fork made it into my mouth or just bumped into my lips. The skin on my face and skull were so sensitive that it was exceedingly painful to comb my hair or wash my face. It felt as if the Novacaine injection had not yet worn off. The remainder of my right side, arm, torso and leg were still numb, but only the dead fish hand and ice block foot felt isolated and separate from the rest of me.

  If you can imagine sitting on your foot until it has gone numb, your first reaction is to jump up, start stomping on it to get the circulation going again. The next sensation is of the prickles of pins and needles, followed by the severe pain of muscle cramps, then normal feeling. I was at the numb stage and I hoped I would quickly pass through these other sensations until all was normal.

  With Graham and Alli both away on that first Saturday night, I had to cope with being alone and the ‘what ifs?’. It had not been an issue before, being alone in the house at night, but now three days after my Cerebral Vascular Accident, CVA, the medical term for a stroke, it was a different story. What if I had another stroke when I was in bed? How long before I was found and what state would I be in? If I did have another bleed, it would probably be on the left side again, possibly involving loss of speech or ability to communicate to others.

  I certainly needed a plan of action. My Girl Guiding days of my youth had taught me to Be Prepared. I decided to take our cordless phone to bed with me, and it could sleep on the pillow beside me, on my left. I also spent some time working out my strategy. If I needed to call 000, I could manage that with my left hand, but if I could not speak, I would need something to alert the operator to the problem I was presented with. I decided to take a chopstick to bed with me as well as the phone. If I tapped dot, dot, dot, dash, dash, dash, dot, dot, dot. Morse code for SOS on the bed head or telephone, it could perhaps be recognized by the operator. So having set all this up I was confident I could help myself in an emergency and prepared myself for sleep. It was a relief to wake up in the morning and realise I had not needed any of the equipment I had so painstakingly gathered.

  An incredible exhaustion plagued me. It took all my energy just to get out of bed in the morning and have a shower and get dressed. No matter what I had planned to do that day it had to wait until I had lain down on the bed for a rest. If I did not attend to my body immediately, I would begin to feel lightheaded and anxious. I found it best to respond quickly to my body’s needs and stay horizontal until these feelings passed. The spirit might have been willing and controlling but my body was determined to be heard and not to be pushed beyond its endurance.

  One step at a time

  Over the next few days I struggled to find a better way of walking, rather than staggering from one piece of furniture to another or leaning on the walls to get my balance. I soon learnt that if I kept my eyes on my right foot and really concentrated my right foot would respond. Heel down first, transfer the body weight on to it, slowly roll onto the ball of the foot and then let the toes touch the floor, gradually moving the w
eight onto the toes, lift foot and take another step. My leg worked even though I could not feel through this solid block of ice.

  It was quite amazing to discover that what had been an automatic movement for almost all of my life, was no longer. Now I really had to concentrate to make the movement happen. Heel then toe, heel then toe. At last I was walking and no longer stumbling. Heel then toe, concentrate, concentrate.

  Runners or netball shoes that supported my ankle and foot securely gave me a stable base to walk on. I could not walk barefooted, and needed a thick sole to cushion my foot. Steps and stairs were still a problem. I could not tell how close my right foot was to the edge of the tread, and with no sensation coming from my foot could easily lose my balance. I had to resort to the toddler’s method. Step down with my left foot, bring right foot to the same step then lead again with the left. I was beginning to understand that I needed to relearn all that I had taken for granted. All the automatic movements we no longer need to think about and which become second nature to us had gone. Like a learner driver, her concentration is totally fixed on the road and the mechanics of driving. Once the driver has gained both experience and confidence she can listen to the radio, or carry on a conversation and still be as attentive to the road and the traffic conditions.

  It reminded me of when babies were ready to try their hand at walking. They had become experts at the art of crawling, then suddenly something clicked in their brains and they discovered that the soles of their feet were the right shape and form to support their weight and infinitely superior to dragging their chubby little toes along the floor. Being upright gave them a whole new outlook on life. Instead of a vista of floor coverings and other people’s feet, now a larger world opened up before them.

  Walking as a skill did not just happen. First there was the frantic totter from the armchair to the coffee table to the outstretched arms of a cheering mum or dad. It was only the momentum that kept them upright and staggering from one foot to the other. Finding their balance and the rhythm of the motion still needed to be learnt. Practice and more practice was required to walk slowly and steadily rather than the frantic rush from one safe refuge to another stable one. This is what I needed to do also. To perform the art of walking and balancing until it either became a natural action or at least it looked as though it was.