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.

I had planned to ask him my many questions, but there did not seem to be an opportunity, and I was still coming to terms with the discovery of how large the white area was in my brain. I had hoped for only a small pinpoint, but here was the evidence. I did not want to interrupt him when he was examining me, or when he was writing his notes about me and by the time this was all done, he was ready for the next patient.

‘Any questions?’ he asked me. But at that stage I was no longer concentrating on my list of queries. I needed to absorb what I had found out.

His greatest concern was my elevated blood pressure and thought that I might have another stroke immediately as a result of this. He prescribed some medication for this and suggested I see him again in four weeks time. I had survived one stroke and I certainly did not want another and this announcement made me very worried. If my blood pressure was that high I felt sure I needed to be supervised at more frequent intervals than monthly, so I decided to follow up with my local doctor. Weekly visits to my doctor detected no noticeable rise in my blood pressure. On the medication, I was keeping it at a steady 120/70.

Four weeks later I was back at the neurologist. This time I was ready to ask all my questions and started in straight away.

Was there no written material in the form of pamphlets or booklets that explained the effects of a stroke and the stages of recovery?

He told me he was unaware of any such information. Although his waiting room was full of pamphlets on Parkinsons’, Alzheimers and Multiple Sclerosis, there was not a single piece of information on stroke.

I insisted that surely there must be something and he suggested a book he had heard of, although he could neither remember the title nor the author. On speaking to his secretary, she had more information and was able to tell me that the title of the book was My Year Off, and the author was ‘Robert something or other.’ With this information I drove immediately to the bookstore and asked for some assistance. I was directed to the shelf and there was Robert McCrum and ‘his year off’.

An off year

Robert, an Englishman, was once Editor in chief of Faber and Faber Publishing and had written a number of books. He had a stroke at 43 years of age, and this book was the story of his year of rehabilitation and of his coming to terms with this stroke. I read avidly, trying to identify my feelings and experiences with his, and seeing what we had in common.

I was rather disappointed. So much of his book was taken up with his privileged upbringing, his successes in life and his moves in such elite circles in society. I probably would have been impressed with the name dropping of British editors and publishers, if I had known who they were, but instead it all passed over my head.

He had kept a diary of his hospital experiences from the first few days as he was still able to hold a pen and write, and quoted from these, as did his wife, Sara. The difference between his wife’s entries and his was tremendous. Sara’s extracts told of

her feelings, concerns and anxieties as well as each milestone Robert achieved on his way to recovery. In comparison, his seemed only to reflect his anger and frustration, and helplessness, not in what he expressed but rather in what he did not.

I had hoped to recognize in his words, some similar experiences to mine, but I did not feel that he was able to tell us how he felt about his situation. Facts, figures, friends were explored but to my frustration no mention of feelings. I felt I had more questions to ask, than being satisfied with the information given. Now on rereading his book I see that perhaps I have been too critical in judging what he has written. I was looking for answers for my particular situation and my experiences and maybe it was up to me to find the solutions myself, not to rely on others to reconnoitre this new territory for me.

I know as a mother and now as a grandmother that experience can only be learnt by doing, going and growing through it. Watching someone else or listening to their story, although it may provide clues to one’s progress, cannot replace the actual experience.

At the following appointment, four weeks later, I was ready to question the neurologist. One of the first queries I had was as he had recommended Robert McCrum’s book to me, had he in fact read it, and did he think it was relevant for Australians and particularly stroke survivors? He had never read it he informed me, he had only heard about it. I still wanted more information on what was available in Australia in regard to organizations or support groups for stroke survivors, but he knew of none.

My blood pressure had again risen and he suggested I should double the medication to prevent a repeat performance of my stroke. I handed him a list of all the strange and painful sensations I had experienced and had described each one. ‘Yes, this one is called parathesia and that one is dysaesthesia and the next one is allodynia,’ he said as he wrote them down for me. The burning pain I had described he called causalgia. It was reassuring to know that I had not imagined them. They were documented and named, but the only difference the names made to me was that they validated what I was feeling. It certainly did not make the sensations normal or any more acceptable.

Once I arrived home, out came the reference books and dictionaries and I found definitions for each of the given words. From the Greek language the suffix – aesthesia means sensation or ‘perceptive state’ so:

Paraethesia translates to abnormal sensation and refers to prickly and itching feelings.

Dysaethesia with its prefix of dys means difficult or poor condition of sensitivity.

Allodynia is defined as different or altered sensation.

Neuralgia combines nerve and pain to describe nerve pain. Causalgia is the name given to the neuralgia distinguished by a burning pain – kausis, the Greek word for burning heat.

So now we knew. I had abnormal and altered sensations, with a strange and difficult sensitivity and nerve pain that felt burning hot. All we had to do now was turn the knob to ‘normal’ and everything would be all right. However, trying to find the correct treatment for cessation of all these sensations has been fruitless. They might not be my friends, but they are my constant companions who are ever by my side or in my side.

Sensuous woman

All my life I have enjoyed and delighted in my five senses, sight, sound, taste, touch and hearing. And of these five, sight and touch have given me the most pleasure. I have always delighted in what I can see with my eyes – colour, form and the play of light and shade. However, my fingertips have always tingled at the expectation of a new texture or a new sensation. I can never resist the temptation of entering a fabric shop and just wandering around and exploring the fabrics. My hand snakes out and sneakily touches the slinky surface of satin. I love to compare the furry smoothness of velvet stroked one way to the prickly resistance of the velvet brushed against the pile. I treasure the smoothness of silk and the fluffiness of fleece or wool. Dogs, cats, children, particularly babies are touched and caressed by me as I cannot get enough of each different surface. How can one refrain from feeling the soft skin of a baby or rubbing one’s fingers over his down like hair?

I can remember as a schoolgirl, first reading the poetry of Rupert Brooke, an Englishman who died during the First World War when he was still a young man. His poem called The Great Lover explores his passion for the familiar things that give him great pleasure. He describes to us his favorite loves, but the ones with which I identify most with were his ones referring to touch:

‘These I have loved: White plates and cups, clean gleaming,

Fringed with blue lines; and feathery, fairy dust; Wet roofs, beneath the lamplight; the strong crust Of friendly bread...

Then, the cool kindliness of sheets, that soon Smooth away trouble; and the rough male kiss Of blankets; grainy wood; live hair that is Shining and free...

The benison of hot water; furs to touch;

The good smell of old clothes; and other such –

Firm sands; the little dulling edge of foam

That browns and dwindles as the wave goes home;’

I can feel through my fingertips exactly what he means. That wiry prickle of a woollen blanket feels just like the whiskery stubble that grows back after a shave. I love to experience the whole range of sensations that sand can provide. From the wet sand at the water’s edge squeezing up between my toes, to the drier, less stickier sand further up the beach and then the fine, fine sand pouring through my fingers as if it were flowing water.

I remember when in primary school the first time I was introduced to finger painting. The delight when I put both hands into the bowl and felt the cold clammy mixture and allowed it to ooze up between my fingers as I tried to grab handfuls of it. The smooth slickness of the jelly paint as I spread it around on my sheet of paper. The greatest joy was not of creating patterns in the gelatinous blob, but surrendering to the sensuousness of the medium and its interaction with my hands.

I love the feel of water flowing over and around my hands and the smoothness of the polished river pebbles. My hand reaches out to caress a highly polished piece of wooden furniture or the rough textured bark on living trees. Soft leather and velvet suede and my hand has a mind of its own as it reaches out to stroke, to touch, to connect to feel and savour the experience. All these have given me so much pleasure. I hope that in time these textures will once again give pleasurable sensations to my right hand and side.

Fingertips

Two months after the stroke, and at last some normal sensations return to the tips of the three middle fingers. The first millimetre is normal, but the rest of my hand is still supersensitive with the volume turned up fully. I was using my right hand as often as possible, although I could not feel an object if it was placed in my right hand. I knew if I did not use my hand, the muscles would weaken and it would become harder to stimulate and make it function. I would accept the change at the supermarket with it, although I would immediately transfer it to my left hand to place it in my purse.

Searching for anything in my bag with my right hand was hazardous. I could not feel the difference between any texture, sharp or blunt, and the fingers did not work if I could not see them. Even if I found the keys I was seeking I was unable to pick them up unless I was watching my fingers. It was useless trying to pull a handkerchief out of my pocket when I could not differentiate between the pocket lining and the hankie.

Three months later, the normal feeling had moved to include the first centimetre on these three fingers. However, my thumb and little finger and palm of my hand were still lost in a bizarre world of unnerving sensations.

I know and believe that touching each other is so important in our lives. It is a known fact that human touch is an essential factor in our development. Young children, particularly in some overseas orphanages and premature babies are less likely to survive if they are neither stroked nor handled with a loving touch. Also, they can experience difficulties in bonding with people for the rest of their lives.

To reach out, connect and make contact with another person is to feel alive and a part of the human race. I offer my hand to someone to shake hands with as this is the customary thing to do. My right hand looks alright and feels normal to the other person linking with me. With practice, I have managed to erase the grimace from my face when my skin is touched. It is far better to bond with someone, than it is to withdraw my hand from their grasp and cause offense to them because of the pain.