On my ninth and last visit, I could walk two kilometres in twenty minutes on the treadmill, and had increased both resistance and time on the other pieces of equipment in the physio department. I could manage the flight of stairs down to the OT without holding onto the rail and using only one foot per step all the way down. I had managed to perform intricate tasks with the fingers on my right hand, but on that final day still failed every test on discrimination of sensations.
Hot was cold, cold was burning, sharp was blunt, blunt was also blunt, soft was hard and felt the same as hard, smooth was rough, light touch was painful, firm touch normal. So long as I could see my fingers I could manage to do most things. However, I failed all tests when my hand was hidden from me. One exercise was to identify objects and textures when they were placed one at a time in my hand. As I had no feeling in the palm of my hand I was unaware when an article was actually given to me, let alone identify what it was.
Water torture
As part of my rehabilitation, it was suggested that I would benefit from one hour of hydrotherapy, along with the physiotherapy and occupational therapy. I arrived at the pool on the first day, unsure of what was ahead of me and how it would go. The thought of working at exercises in a warm pool produced pleasant images and I was certain that I could manage all the activities with ease.
The physiotherapists in charge of the group were highly organized. We all lined up at the edge of the pool and one by one were assisted down the steps and into the chest high water. My first exercise was to walk slowly down the length of the pool and back again. As I proceeded to carry this out I found it was far more difficult than I had first realised. I was supposed to keep my eyes straight ahead, but without looking at my right foot, it would not perform. Also as the floor of the pool sloped down, I became unbalanced and kept falling over.
The pressure of the water on my super-sensitized right side was agonizing. I felt I was being crushed and squeezed. I could not believe how heavy the water was and how hard it could push. My expectations of gentle lapping water holding me and supporting me quickly evaporated. Here I found the water did not assist in helping me move, but rather restricted me and held me back. As a force of resistance it amazed me. Images of floating, relaxing and letting go disappeared as I found in the water an enemy and not a friend. This foe restricted and prevented my movements, forcing me to conform to its shape. The warm friendly embrace had turned into a crushing bear hug, pinning me down and constraining me.
We had to walk around in circles, trying to stand on one leg at the same time as catching a ball and all the time my right side was screaming and screaming with pain. What I thought would be a relaxing and refreshing interlude became a nightmare, with the physiotherapist berating me for my poor performance. It did not seem to help by trying to explain exactly what was happening to my injured right side. I looked alright and only I could feel the pain.
The hour stretched on and on and it was a relief when at last the session was over and we could climb out of the pool. Fortunately for me I developed a cold by the next appointment and by the time I had recovered from it, I had convinced the physiotherapists that hydrotherapy was not for me. It has taken me many months to be brave enough to try entering a swimming pool again or even to lie down in six inches of bath water.
Wet and wild
Early on in my recovery, a friend suggested that a warm bath would be beneficial as it would relax all my muscles and release the tension in my body. I decided to give it a go. I had been managing to shower myself each day, although it was still an exhausting and slow business and I needed to have a rest after such strenuous exercising. The concentration required to follow out each planned movement quickly drained me of energy.
I ran the bath and tested the warm water with my left hand. I was well trained by now and rarely ever burnt my right hand. I disrobed and stepped into the bath, first one foot and then the other, and then... what came next? I stood and stood and thought and thought, but I could not discover a way to lie down in the bath from a standing position. All the intervening steps were missing! Unless I could see my right side it did not exist and therefore I could not fathom how to bend and lower myself into the warm inviting water. I stood and stood. The water lapping around my ankles changed from pleasant warm to irritating cool and I still could not work out the processes. As the water became colder, I gave up and had a shower instead.
After I was dressed, I decided this would not beat me. I stood in the centre of our lounge room and endeavoured to lie down on the floor. I managed to get down on my hands and knees and then roll over onto my back. To rise up I needed to repeat the process backwards. Roll over onto my hands and knees and then pull myself up again. It took much more room to execute these actions than was available in our bath so I did not repeat the process.
Months later I have realised that there is another way and another word – crouch. That was it. That was what I could not remember. Neither the word, nor the action. All my life I have climbed into the bath, stepped, then crouched, then lay down, but for nearly twelve months this process did not exist in my mind or my memory.
Now I can celebrate that another missing piece has returned. It is very easy to know what I know and not so easy to know what I don’t know, but when it comes to not knowing what I know, how can I access this missing knowledge?
Part 3
Missing
The term used by doctors and other health workers to describe what we as stroke survivors have lost is deficit. There is no word to tell us what we have retained. It is quite a pessimistic outlook on life. I have always lived by the philosophy of the glass half full. It is far better to celebrate what we have in life than to dwell on what we may be missing.
This concept was brought to my mind instantly, one day when I visited a new doctor. The very first words that were said to me in the consulting room were, ‘I read that you have had a stroke, what are your deficits?’
The first response that formed in my mind, but remained unsaid was, ‘You may not be aware of my deficits but I am well and truly aware of yours!’
Deficit is such a negative word and emphasizes what is lacking. However, if I needed to wear spectacles because I was short sighted, I would not be considered deficit in visual acuity. I would be prescribed correcting lenses and treated as normal.
To be considered by the medicos as being incomplete, deficit, because of a small bleed in the brain seemed to be rather rude and tactless on their part. If I had deficits, did it in fact mean that I was deficient.
To balance this out another new doctor’s response at my first appointment with her was to congratulate me on how well I was going and then to inquire if I had any lasting effects. These words gave me back my sense of being and restored my self esteem. I was much more than just a medical condition or a curiosity. I would far rather have my assets commented on and acknowledged than such an emphasis placed on what I had lost. Having a well developed sense of humour and the ability to laugh at myself and my new found clumsiness is essential. A positive outlook on life helps to keep depression at bay. Being determined to work hard at my rehabilitation and never ever considering giving up or weakening in my resolve keep me going. These personal characteristics seemed to me to far outweigh the deficits that I have accumulated.
Four weeks after the stroke I made an assessment of how far I had advanced in regaining all functions. I could walk, so long as I concentrated on my right foot, and wore good fitting runners. It was impossible to walk barefooted as the sole of my right foot felt like a thin edged blade. I had also developed a white hot pain in the back of my right thigh. It felt like an acid burn eating away at the tissues. I would always surprise myself when I would feel the area with my left hand and discover that the skin was normal and there was no gaping hole in my leg.
I could use my right hand to write in short bursts, although I had to place the pen in this hand with my left hand, and fold the fingers into their correct places. If I did not keep an eye on
my fingers they would drop the pen immediately. I had to support my wrist with a soft rolled up towel. If the side of my right hand or wrist touched the tabletop, the pain was excruciating for my skin was super-sensitive to even the slightest touch. I also discovered that I could no longer look at the words I was trying to produce on the paper. My full attention had to be directed towards watching my fingers holding the pen rather than keeping an eye out for writing on the lines. I realised that writing as I had previously done was no longer possible. If I attempted to join each letter to the next it ended up as indecipherable scribble. Unless I could lift the pen off the page between each letter my hand would go into an uncontrollable spasm. I would watch in horror as my hand with a mind of its own scribbled across the paper and continued onto the tabletop. It was only when my left hand grabbed the pen that the process stopped. I hoped that I had miraculously produced some brilliant words of wisdom, but unfortunately it was rubbish. I easily solved this problem by printing not scripting and my signature, which is barely legible is my only written word.
The whole of the right side of my face burned with the pain of trigemial neuralgia. I could manage to do the cooking and cleaning, although every action was so exhausting and I only lasted half a day before I needed a rest. I still needed to watch my hand and foot to carry out any chore. Nothing was automatic yet and it took great concentration to complete each task.
Five weeks had passed and I was anxious to see the neurologist at the outpatients clinic and obtain some professional information on how I was proceeding. Some of the numbness had disappeared from my right side, but it was being replaced with strange and bizarre sensations rather than normal feelings. We arrived at the department at the appointed time, following the written instructions and waited. And waited. The little kiosk run by volunteers, turned off its lights and was locked up. The cafeteria staff finished the cleaning up and went home. The rows of other clinic patients had dispersed and the clinic staff disappeared. Even the front reception desk had its security grille engaged and the chatter of voices and telephone bells ceased and still we waited.
The other occupants in our isolated area and I compared notes. One man had been waiting to see the doctor for over three hours. Another paced restlessly around the room, complaining that it was not good enough.
‘What did you expect,’ a lady responded, ‘it’s the public system. If you could afford to pay to see a doctor you would not have to wait so long. There would be fewer delays for those of us who are unable to spare the money for a consultation.’
I listened to these comments and looked around at the remaining people who were ahead of me. At the rate we were going, I would still be waiting another two hours over and above the three hours I had already waited. I was utterly exhausted, the chair was hard and unyielding, so I walked out and went home. At least there was one less patient to be seen that day.
Now I had no neurologist to give me the answers so a referral was required and a private neurologist chosen. The first appointment I could be given was in late September, seven weeks since the stroke. I was anxious to see someone who could explain some of the details to me and let me know how my recovery was going. The pronouncement that everything would be better in three weeks had not been accurate. Could I expect a full recovery or not?
A spoonful of sugar
At four weeks post stroke, I had my first visit to the endocrinologist to find out about diabetes. My associate professor, reminded me of Sir Eric Pearce, the same shock of white hair, the same bright alert eyes. He was such a gentleman and treated me graciously and as an equal, rather than an assembled collection of deficits. When he showed me into his office, with its comfortable armchairs and a shelf full of his own personal memorabilia, it was more like being invited into his own home, than a clinical doctor’s office.
His manner was quiet and reassuring and he explained that my blood sugar was not dangerously high, in fact it was in the very lowest level of the diabetes categories. I asked if he could explain how the stroke had happened. He said that a chest infection, like the flu and bronchitis I had experienced, raises the blood sugar. The cortisone in the form of prednisolone tablets, that I was taking to combat the infection, was also known to raise the blood sugar. This was a noted side effect of the medication.
Once I had stopped the cortisone, my blood sugar had gone down to normal levels, the bronchitis and flu disappeared but of course the brain damage from the stroke remained. He suggested that I check my blood sugar levels on a regular basis. Then I could learn where I was heading and explained that as there is no cure for diabetes, the longer I could keep it controlled in the lowest category, the less chance the diabetes had of becoming serious. I would know if my diet was adequate or if I needed to change it.
Treatment for diabetes had changed over the years. Rather than exclude sugar from the diet as I had expected, the answer is in a low-fat diet. By removing unnecessary fats from the diet the pancreas copes better at controlling the blood sugars.
Ambidextrous
It is amazing to see how dexterous my left hand has become after a lifetime of being the lesser favoured limb. The English dictionary defines dexterous as being ‘skilful and adroit, clever, and right handed’. The word is derived from the Latin dextra, meaning favourable or right side. This is, of course, as opposed to the Latin word for left handed – sinistra which comes with meanings of unfortunate, threatening, ominous, bad, evil, base and disastrous. The Romans coined the word in the first place because of their superstitions that omens observed on the left hand side were unlucky. What a dreadful history to saddle a left hand with.
But now, post stroke, my left hand has found new status, promoted from the dark side and untrustworthy underworld to be my right hand man. Not only do I need my left hand to do all the intricate tasks my right hand fails dismally at, but I now trust it to check out all the sensations that I once knew, but now are jumbled. Officer in Charge of Testing the Waters is just one title I have bestowed on my left hand, as I need to rely on this side to protect me from burns and scalds.
My poor right hand, now a member of the unfortunate and unlucky side, gives me false information, although not of its own making. No longer my trusted friend, it is not my enemy. Rather a sad and confused appendage, endeavouring to do its best under such unfavourable circumstances. The messages that my right side receives are scrambled and like a cipher without a key, cannot be translated into normal feeling or action. It is not my hand as such that is faulty, just the wiring in my brain that causes all these aberrations. The resulting sensations make the need for close monitoring of utmost importance. I need to be aware that what feels correct is not, and not put myself into a dangerous situation by believing these sensations.
I wear a beautiful sapphire ring on my ring finger on my right hand and a gold bracelet around my wrist. This reminds me every day that my hand is doing its best to overcome the difficulties it has to face. The jewellery is irritating to my hand, but it is important to me that I acknowledge my hand and not hide it away or show anger towards it. The lovely adornments keep my hand in view and my attitude positive.
It is not that I feel foolish when I fail all tests on temperature differentiation, or on a wide range of textures or what is sharp or blunt. Rather it makes me aware of how great the loss of sensory perception is. A light touch on my arm or leg feels like a bad burn yet a firmer touch is bearable. The soft baby wool I use for knitting for the next new grandchild registers as being scratched by barbed wire. Every day the family cat comes to me for its daily grooming. I stroke her soft fur with my right hand and still the response is as if I was stroking rough concrete. Eventually I hope that one more nerve cell will recover and one day I will be able to feel again her soft silky fur, and eliminate the confused and contrary messages.
Hot wheels
When I was an inpatient at the hospital I had a visit from a student Occupational therapist. She had gone through the same tests as the neurologist had put me through, with the same
results. Her only advice to me was not to drive my car for three weeks. I found it very difficult to be dependent on others to take me to my appointments and hated asking Graham to interrupt his work to drive me around. When the three weeks were over, I was very pleased to be back in the drivers’ seat. However, I considered that I needed some new strategies to drive the car safely.
I remembered comments made about racing car drivers years ago when we had attended racing car meets. The drivers were always described as driving by the seat of their pants. This gave me a clue. Even if I could not feel my right foot, I could certainly feel my right leg as far as my ankle. By pushing my weight down through my hip to my ankle and the undefined mass beyond it I would be able to control the accelerator and the brake. I could use the same method I had put into place when I was learning to walk. I would gauge the pressure on the controls by concentrating on the movement at the top of my leg. I found this technique most successful and discovered I could once again drive safely.
I do not take my driving as a right but rather as a privilege. I am very aware that I should only drive when I feel alert and not stressed. Hence I do not drive long distances, or late at night or to unfamiliar places.
Head doctor
It was at the end of September that I had my first visit with the chosen neurologist. His examination of me confirmed what I already knew, that my deficits were still in existence, but no worse. I was able to view my MRI results as the proof of the stroke and could see the extent of the damage. The clear white area on the film stood out from the surrounding grey mottled texture of normal brain matter. He told me he was using my MRI films to lecture to a group of doctors as I presented all the effects of a classic thalamic stroke.
Left of Tomorrow Page 5