Looking Glass Wards - Part eleven

Carolie continues...

Apart from bringing books, friends also brought in food. Some of the teachers from my school brought in big “Get Well” cards. These were large posters each with small decorations made by the children and pasted on by their class teachers. On one of them, a student had drawn a Burmese cat, knowing about my cat called Hendrix. Underneath the drawing was written “The power of cat”. I loved the posters as they were so vibrant and reminded me of where my bed was when I was out of the ward. I loved reading the names of the children and talking with my sister about each one.

Over time, one of the physiotherapists would come to the ward and spend time encouraging me, while I was sitting up in bed, to build a tower using brightly coloured plastic cones. I had to reach for them, on the bed- side tray which required effort and caused some slight pain in my left arm.  Another activity, which I loved, was building, using shiny coloured wooden blocks.  Then I would have to sort beads and to practice picking them up. There were other strengthening exercises using plasticine. I was reminded of the kindergarten room and all of the pre writing exercises and activities that teachers provide. 

One day a cousin and her young daughter arrived with a pot of yellow “theraputty”. I had fun with this trying to press it into shapes and stretch it out with one hand and then another. My goal at this time was to be strong enough and coordinated enough to move to the Rehabilitation Ward. On some days I was taken up in the lift to a gym where the young trainee physios worked on my balance and on encouraging my walking. There was a treadmill which I found daunting at first, and difficult to keep up with. It was so hard to get my legs to find the right rhythm;  to keep in time with the moving tread.  I remember feeling tired, but refused to give up. It was lovely afterwards to transfer to the wheel chair to be back in bed and able to drift off for a snooze. I resented the interruptions for fluids and meals. Because all I wanted to do was sleep.

A very special and important aspect of my awakening brain was music. I have always had a great love of music, beginning with early childhood, listening to the songs from musicals on the radio and record player. There were pianos in the homes of both sets of grandparents. My parents both played the piano as did their siblings. There was always singing around the piano at family gatherings. One of my aunts played the church organ, I loved, the rich sound. My paternal grand father played the piano accordion. It was a beautiful instrument.  My maternal grand father played the piano for us five children and he delighted us with little songs in French, which had been sung to him by his mother. He would wear a beret and sing and we would all sing and dance around the living room. There was a lot of laughter and fun. 

Eventually, when I was about five or six years old, I started to have piano lessons as my parents had obtained a piano. We all had lessons with a very kind woman. I was not very skilled but I loved to play and played with feeling. Gradually over the years, I was able to play more challenging material, and to play duets with my younger brother. This was always a source of fun for us both. My father and his siblings were involved in amateur theatre including musicals. In early childhood, we attended their performances, and I became familiar with the music of Gilbert and Sullivan at an early age. 

My parents loved music too and we would watch concerts including opera and ballet on television. Once when I was older and we were on holiday in Sydney we were taken by our parents to the Ballet. We saw “The Display” performed by the Australian Ballet. I was fascinated with the orchestra, the first time I had seen one live. I was fortunate to have ballet lessons when I was about six as there was a teacher in the country town where we grew up. I loved the opportunity to move to the music and interpret the music through dance.

At school, I learned to play the recorder and joined the recorder group. Eventually there was a band in High School and I learned to play the flute. At the end of High School, I went to Music Camp and had a go at learning to play the violin.  I was in the choir and we made a recording of  Bach’s St. Matthew Passion. It was beautiful music. I still enjoy it immensely. 

 

Looking Glass Wards - Part ten

Mark returns....

One morning I arrived to discover the isolation room occupied by another patient.  After a brief panic, I learned Carolie had transferred to a share room overnight.  Her disorientation kicked in during this exercise – she thought aliens were abducting her until she realized her destination remained earthbound.   

The small wardroom was a significant ‘comedown’ from the spacious isolation room.  The room accommodated four women ‘cozily’.  It had its own bathroom and toilet.  Spatial restrictions were much greater.  There was room for a couple of posters and a few flower vases but it felt cramped. 

A new area of risk to Carolie opened up immediately.  Nurses would move her to the bathroom for ablutions and toileting, and occasionally leave her unattended.  I arrived one morning to discover she had fallen off the toilet.  Her poor balance and lack of muscle control meant she required constant supervision when taken away from her bed (which had security rails) or safe chair, but the demands on nurses in high dependency situations are relentless.  It only took a moment unsupervised to lose her bearings and fall.  She was trying to reach for toilet paper, as you do.  Her body was jarred and bruised but nothing more serious detected.  It alarmed me nonetheless and it happened at least twice.  Again, I felt uneasy away from her side. 

Once Carolie could transfer out of bed to a wheel or ‘safe’ chair without use of an overhead harness, she was destined for the rehabilitation ward.  Although assessed ready for transfer, places were few.  This eventuality seemed a bridge to ‘normality’; hope of a return to life outside.   The anticipation of attaining ‘Rehab ward’ status grew day by day.  We waited patiently for advice a place had been found.   

The singing and physiotherapy continued apace.  A small sitting area for visitors was close to the wardroom.  We used this for singing sessions, as a swung cat would fear for its life in the new accommodation.  An old bloke would wander along to join in the singing.  He looked a tad lost, but brightened up when the lovely songsters took flight.

Another malaise manifested itself.  Carolie began to have bouts of nausea and vomiting.  The meal mush alone would have been enough to send me gushing, but the ongoing cocktail of drugs and echoes of trauma to the system were the likely causes.  Profound brain trauma can resonate through the metabolism for considerable time after surgery.   

The rate of recovery differs for all patients as metabolic responses to treatment vary in each case.  The ‘broad brush’ prognoses laid out along the way had mostly been inaccurate.  

This did not reflect poorly on the competence of medical staff, but merely reinforced the truism that we are all different.  For the next few months and without much of a cue, her regurgitated meals left those in attendance scurrying to limit the mess and clean up.  Taken with all the other travails, it did not seem fair, but if life was fair…well, you know!

To be continued....

Looking Glass Wards - Part nine

Carolie continues...

Much of the time during those early weeks in TCH was spent trying to learn to stand up - counting one, two, three and then standing up with the support of two nurses. Once I could stand I was able to walk with support to sit in a wheel chair.    

One day, two male nurses came with a trolley to take me for a CT Scan. I was so proud that I could stand up and then lie on the trolley. I remember thinking I don’t know these two, they could be aliens come to abduct me. So, I lay on my back, relaxed and watched the overhead signs pass, trying to read them, to familiarize myself with my location. The nurses took me into the lift and once it opened, they wheeled me out along a corridor with blue lines on the floor.  "What a good thing", I thought, "I should be able to follow the blue lines back if I get lost". Eventually we arrived at the X-ray Department; I was able to stand up and then lie down and push myself under the machine. I was a little frightened, as this was a new experience for the conscious me.

Mark had earlier told me that I’d had a cardiac arrest while having a CT scan in Sydney. The radiographer was very cheerful and quickly put me at ease. Soon it was all over and I was transferred with support from the nurses, lying back down on the trolley and safely returned to my familiar ward bed. Later that evening I told Mark and Louise, “aliens” had abducted me. They both laughed and I enjoyed the joke. 

At that time, I thought of another joke. Michael, the previous Principal of the school, would regularly say to me when I was working late: “Go home or you will turn into a pumpkin”.  I thought the joke is on me because now I have turned into a pumpkin. I will have to tell Michael if he comes to visit. The next time he came I did tell him and he roared with laughter. 

There was a television monitor opposite my bed in the ward and once I was able to sit up and watch, Mark organized TV service.  There were many visitors.  A friend provided a diary for them to record their visits and comments. Mark brought in some books, including Caleb’s Crossing, which my book club friends were reading.  Each time someone visited they read a section and then passed it on to the next visitor.

 One friend recorded that I seemed to recognize her when she visited.  Once she brought a gift of some zucchini muffins for Mark. I felt that life was very rich;  I was blessed with such wonderful family, friends and colleagues. One dear friend brought some poetry to read. Later when I thanked her for that kindness, she recalled how my pupils had grown bigger, while she was reading. 

Literature and reading has been a great source of pleasure for me throughout life. I had always loved sharing books with children when I was teaching.  A favourite childhood memory I have is of a time when I was very young, standing behind my grandmother’s chair at the family farm, with my older brother and looking over her shoulder while she read to us. I remember the lilting cadences of her slight Irish accent as she rolled the “r”s. We laughed at the image of the emu, which had forgotten its toothbrush. I found the idea of an emu needing a toothbrush, very funny, as I had never seen any teeth in their beaks.

To be continued...

Looking Glass Wards - Part eight

Carolie continues...

During the day there were regular visits from the doctors to check my responses. I felt like some sort of insect or object of science, as they asked me to raise my arms, especially the left, and tapped my legs.  I was pleased to see that I could read the names of the doctors on the sheet above my bed.

Eventually after a lot of practice, I was able with help to sit up in bed and to be moved with the support of at least two nurses, to sit in a big green armchair in the ward. It was lovely to be out of bed, and sitting up. In the evenings, my sister, Louise, came to visit with Mark. 

One day, when my balance, coordination and capacity to stand had improved sufficiently, Mark was permitted to take me out into one of the courtyard gardens in a wheel chair. What an adventure to be outside and to feel the warm sun on my skin at last! There were trees and some lovely diosma plants in flower at the time in the garden. It was such a delight to hear the “chortle, chortle” of magpies and to see the pretty flowering plants and the bees moving among them. It was such a delight to breathe the fresh, healing, Canberra air - so delicious!

After some time the tracheostomy was removed. This was a somewhat painful procedure, but what a relief not to have that rattle, every time I breathed. This was a major milestone as now I was able to speak at last!  My voice seemed strange to me at first, subterranean, like a whale’s song.  Now I was able to start drinking fluids through a straw. 

The number of therapists increased. There were speech therapists and occupational therapists and physiotherapists, who carried out a range of assessments. As my left side was most affected by the stroke I had to have my left arm supported in a sling, while I was sitting up. I looked across the ward to the big windows where there was a lovely lush view of trees and houses. I tried to make sense of what I was looking at because it seemed familiar. 

Probably, because of the number of nurses from Indian backgrounds on the ward at various times, I had a sudden memory of the Brindaban Gardens near Mysore, in Karnataka. I told Mark, when he came to visit in the evening and he chortled and said, “No love you are confused”, and he gently explained where I was. I thought I had been so clever dredging up a memory from long ago, when we had visited, South India during our time as research scholars in Bombay, now Mumbai. I tried to remember some of the basic Hindi I had learned and decided to practice it with the nurses. 

Fortunately, they were very tolerant and helped me with my attempts. I told Mark and celebrated that my brain was working. He thought that the sight of the Indian nurses had reminded me the last time I was in a hospital was in India when we were on a posting in New Delhi. I had been pregnant and had to go to hospital. The foetus was removed as it had died. This was a very sad time for us. I will not forget the look of profound sorrow on the little face of our son who was then 6 years of age when we explained what had happened to his mother.

To be continued....

Looking Glass Wards - Part Seven - Carolie joins the blog

Continues...

Carolie's voice enters the fray:

Awakening

“The cradle rocks above an abyss, and common sense tells us that our existence is but a brief crack of light between two eternities of darkness.”

(Vladimir Nabakov, Speak, Memory, An autobiography revisited, Penguin Books, 1969 p.17)

The familiar sound of curtains pulled quickly across metal rail, awakened me from sleep and I opened my eyes to a bare white clinical world, bright, fluorescent light, antiseptic chloroform smell.  Toes wiggled, legs stretched out, touching cool cotton sheets, feet pushed against metal.  Sentient, awareness of being in a single hospital bed and for some reason I turned my head and there he was smiling at me, with his sparkling hazel eyes, my friend, companion, and comrade since first meeting at Sydney University, my loving husband Mark.   It was as though I knew he would be there. 

At that moment I had no idea of why I was in hospital. The reasons were explained, eventually, over time by Mark and others. I had no memory of what happened;  there was no initial shock when the events were revealed, by Mark as they would be over time. The sheer enormity of it all did not dawn on me during those first awakening days.  I was lucky to be alive and I celebrated, as I did each day when I woke up. 

I do remember Mark’s telephone call on the night of the event, asking me to pick up some items on the way home from school. I had some more work to complete so I sent some documents from my computer to the printer in the staffroom. I walked from my office to the staffroom, made myself a cup of coffee, placed it down gently on the bench next to the printer, and that is my last memory.  I am so grateful that I did not get into the car and drive that night as I may have had an accident or injured someone. Who knows what might have happened?

What follows are memories from the time I spent in hospital in Canberra and beyond. I will endeavour to be as honest and accurate with these as I can. The major initial discomfort I recall, after that initial awakening, was due to the tracheostomy in my throat and the tubes attached to it. When I breathed, there was a rattling sound. This rattle was caused by the build up of fluid in the circular tube.   

There were other fine tubes containing fluid which provided sustenance. I longed for the removal of the tracheostomy thing so that I could eat real food, and talk to people.  There was a wound on the scalp above my right eye. I learned that it was residual from the operation. The wound was cleaned and dressed each day by a nurse. This wound was not painful and did not cause any discomfort. 

Gradually I adjusted to the routines of the ward, the regular taking of my temperature, and pulse by a variety of nurses.  One morning I heard the soft putter of a helicopter outside - one of the nurses asked would I like to have a look as she said that was how I had traveled to Sydney. Thinking that it would be such a fuss to try to get me over to the window, as I could not walk, I said no. I now regret that decision, all I could do at that stage was imagine.

To be continued...

Looking Glass Wards - Part six

Continues...

I was determined to continue with alternative therapies that had delivered so much in Sydney.  I arranged for an acupuncturist to attend Carolie and sought clearance from senior nursing staff.  I struck a snag immediately.  One of the nurse managers declared this was not hospital policy and that she would have to seek approval from the neurosurgical staff.  I explained the attitudes I had encountered in RPA and reiterated my request.   

It turned out her declaration was not exactly true – the hospital did not have a policy on management of outside therapists.  I offered to waive any claim under public liability provisions to facilitate their access.  After a short hiatus, one of the neurosurgeons popped in to introduce himself and to confirm they did not have a problem with acupuncture.  They were sceptical as to the benefits, but did not stand in the way. 

The acupuncturist commenced a series of sessions during ‘quiet’ times on the ward.  Under acupuncture theory, energy (or qi) has to flow steadily from the inside of the body to the "superficial" body tissues of the skin, muscles, tendons, bones and joints. Channels or ‘meridians” assist this flow.*   In Carolie’s case, the benefits were obvious as the needles stimulated reflex responses in areas that had lain dormant.   

The therapy also sought to enliven her immune system.  After some 8 sessions, she asked for the acupuncture to cease as she found certain applications painful. Needles to the lower limb points, especially those in the feet, made her body jump at times.  She complained that the therapist was hurting her and smiling as she did it.  In fact, she was caring and sympathetic, but Carolie was a tad confused about what was happening and misread the signals.  It was difficult for the therapist to gauge her more nuanced responses, as her body and higher faculties had lain dormant for over two months.   

Carolie's ultimate rejection of acupuncture was disappointing in many respects but completely understandable. I remain convinced that I did the right thing proceeding with the therapy – the acupuncturist advised many people wait too long to reactivate and balance the body’s energy flows after trauma, and that her responses were positive signs for physical recovery.

Rehabilitation kicked off in a big way once the ‘trachy’ came out.  Small teams made up of physiotherapists and university students on work attachments ran these sessions in a small gym on the same floor.  Carolie would be strapped into an overhead support harness and encouraged to exercise her wasted muscles.  She could barely move at the beginning of the process.  With the aid of the apparatus, she could stand and attempt small steps.  Stricken with palsy on the left side, all movement was fraught with difficulty.

Balance was nigh impossible without the harness, but as the days ticked over small improvements were discernible with the help of the physiotherapists and the student cohort.  She was grittily determined to improve and had willing partners in her ‘comeback’ venture.   

Her disorientation was still apparent – she kept referring to her student helpers as kids she had taught previously – but her efforts to recover were courageous.  For me, seeing her stand with aids was ‘up there’ with hearing her first words - in terms of the ‘rehab’ curve.  The tunnel light was getting brighter.

To be continued...

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*              http://en.wikipedia.org/wiki/Acupuncture

Looking Glass Wards - Part five

Continues...

The ward was in better shape than its Sydney equivalent.  The building stock was not as old, but the day-to-day equipment was hardly state-of-the-art.  Some of the BP monitors were old and other equipment look tired.  However, the place felt light and airy compared to Sydney. 

The overhead hoist worked fine and Carolie spent increasing periods out of bed.  She would dwell on the posters and the impressive view from the large windows.  Big smiles would now greet nurses and new arrivals. Whenever I turned up, the reward was one of these smiles and occasional acknowledgement via hand pressing.  I chatted away and continued with the IPod music sessions. ABC FM was available through a small hand line speaker.  After a week or so, I leased TV coverage.

The area around the nurses’ station was the ward hub.  Corridors led off in four directions to various wardrooms, most of which accommodated four patients.  Other facilities on the floor included a small visitor’s lounge and a rehabilitation gym.  There were two isolation rooms adjacent to the station, one of which Carolie occupied.   

An elderly man of South Pacific islander origin took the other.  In addition to his current neurological situation, he had a dementia condition.  This was manifest in regular bouts of loud shouting. I nicknamed him the ‘king of Samoa’ - waging battles with savage enemies assaulting him from all sides.  At all hours, a blood-curdling cry would suddenly reverberate around the hub, and a nurse would be dispatched to assess the damage.  Booming declarations in his mother tongue were redolent with past warrior skirmishes, imagined or real.  

 He may have been replaying vigorous rugby matches with fierce opponents.  It was alarming to begin with and I was glad of Carolie’s seeming detachment from his aural assaults.  I understand he would occasionally launch himself out of his room, sometimes without clothes.  Over time, I grew a soft spot for the troubled warrior, and wished him well in his ‘battle royale’.

The main change was Carolie’s new alertness.  Friends and colleagues now visited in abundance.  She was aware of them and clearly recognized most.  Some read to her, others sang, while others updated her on current events in the school and the Canberra education scene.  Whole classes made wonderful posters, with bright colours, imaginative designs and personal messages from individual children.  Some included the photos of the school kids.  All of these thrilled her.   

The room had a large painted wall at the foot of the bed, which we decorated with the posters.  A friend set up a visitor’s schedule to avoid crowding.  On occasion food left by visitors supplemented my diet.  Flowers and cards filled the room.  A half cupboard ran the length of the corridor window and this provided a perfect display point for well-wisher’s paraphernalia.  A shelf and board near the bed for personal items harboured the overflow.  

 

The banks of machinery that had dominated the ICU landscape had dwindled to a few calibrated dispensers of food, water and drugs.  I anticipated nervously the removal of the tracheostomy.  Would she be able to speak?  How much brain damage had events and interventions wrought?  It took ages to obtain the clearances from the various specialists involved.  Strict protocols surrounding tracheostomy removal require boxes ticked by these specialists.   

Eventually all the ducks lined up and a nurse popped the miniature engineering marvel out.  After all the fuss, I was amazed how easy it was.  If I blinked, I would have missed it.  

 The trachea puncture hole was dressed simply and that was that.  I had been rubbing body cream on Carolie’s lower limbs prior to the removal.  Her first words were, “My skin gets dry from the air-conditioning”.  My heart leapt as I agreed with her and I laughed aloud.  She had talked immediately and coherently.  Her simple observation signalled a key area of recovery – normal speech – was fully attainable.

Disoriented by drugs and cognitive befuddlement, Carolie described repeatedly the view out of her window as ‘Brindhavan Gardens’, which is a popular tourist destination in South India.  I have often remarked on the similarity of the Canberra surrounds to areas familiar to us in India, so it was no surprise that she made this connection.  The high proportion of nurses and doctors originating from the Indian sub-continent and other Asian regions reinforced the confusion.  Our many years of living in India probably played a part, particularly her experience of being hospitalized briefly in New Delhi. 

The ‘Indian’ connection was doubtless comforting, as that part of the world has played a profoundly positive role in shaping our life together.  For instance, Carolie began to flex and stretch her legs in yoga postures we had practised since our time as students together in Mumbai.   

Carolie at mealtime

 

Carolie could now eat for herself.  She was restricted to ‘soft’ foods that were mush of various colours.  She needed help with eating and, considering the cocktail of drugs in her system, had a reasonable appetite.  Her visitors assisted with meals, marrying food with chatter.   

Sister Lou visited most evenings to help with eating, personal grooming and to update familial gossip and other happenings.  Skirmishes broke out about clothes choices, along with other sisterly disputes surrounding toiletry matters, but the loving attention was therapeutic.  It is impossible to quantify the benefits of close personal care and attention in the early days of recovery but it was tangible.   

My role took on precise parameters. I was responsible for all laundry; was a self-appointed assistant meal manager and general logistics factotum.  As Carolie’s responses became more animated, my perfunctory daily routine went by in a blur.

Carolie’s smiles of recognition widened from day to day.   Her awareness was on the rise.  Her first targeted rehabilitation therapy was music.  Friends from the ANU School of Music sang with Carolie.  They took it upon themselves to come every day to sing and make healing music.  They brought beautiful handcrafted percussion instruments to supplement the singing and encourage hand-eye-ear coordination.  She would grapple with these but barely detectable improvements were discernible over time. 

The music therapy continued throughout her stay as a rehabilitation in-patient and for some months on departure from the hospital.  The ward nurses welcomed the singing sessions, and patients from other rooms wandered along to listen.  The singing was sublime; the music played a pivotal role in speech and cognitive recovery.  We will return to the singing therapy.

To be continued...