A Thorn in the Flesh
BY LOXLEY JENSEN
A personal encounter with the dreaded Guillain Barré Syndrome and the weary but wonderful climb out of total paralysis to a new dimension of meaningful living.
1985 started off like most other years, pleasant summer, relaxing beach holiday then back to work as an Insurance Rep. However, as the year wore on I felt my body wearing out rapidly. Hold on, I thought , I’m only 55, what’s going on here? Can’t mow the lawns without becoming pooped, unable to hammer in a tack and coming home from work tired—half way through the afternoon? Surely I must be aging prematurely, but at 55? Seems a bit soon! Things were not improving and flu-like symptoms had set in, with severe aches and pains in legs culminating in a week long bout of diarrhoea leaving my body a shadow of it’s former self. This has to be the bottom of the pit, surely things will improve. To encourage this thought pattern, on the 9th July 1985 I urged my weary frame out of bed to sit at table for the evening meal. Well, all this effort to be sociable only to have dished up chicken too tough to cut with a knife! That’s funny, the others are not complaining ... Yes it’s only me, barely able to hold the knife let alone cut with it! Feeling decidedly antisocial I was soon back in bed.
Remember those horror dreams where with leaded feet you seem unable to escape the impending doom? In the early hours of the next morning (12.30pm) I awoke thinking I was still in one of those dreams but the dreadful reality was there, I was awake but unable to move. The Doctor was called but until he arrived in the morning, my wife and I pondered this affliction as some temporary thing soon to pass. Our Doctor showed instant concern (he had been treating the diarrhoea to no avail), especially when reflex tests were negative and whilst arranging the ambulance, briefly spoke of the condition being Polyneuritis . "What’s that?" We asked. The reply was to the effect that it was somewhat like Polio, attacking the nervous system and destroying some or all the body’s motor nerves. Two hours later, as my breathing became weaker I was rushed on from our local hospital to the Intensive Care Unit of the base hospital where a lumbar puncture would confirm the diagnosis but to it was attached an unpronounceable French name "Guillain Barré Syndrome."
(The French struck twice within the same hour that night of 10th July 1985 ... I’m not sure which sank first, the Rainbow Warrior or me!!) Needless to say that to this day I have no great affinity for anything French!!
Rather interesting to note that in this day of medical achievement little is known of the source of the disease, diagnosis is totally misread until the damage is done, nothing can be done to arrest it’s attack and it’s ‘wait-n-see’ as to how much body function remains. By the third day the disease had run it’s devastating course, I had gasped my last breath for many months to come for I now had a life support ventilator as my constant companion.
Three days before I had quipped to my wife that I thought the hospital and Doctors’ were over reacting, ... not any more! On entering this strange, painful and silent world, I could think little of the future. My dominant concern was to take each day as it came and work through it hour by hour. This principal was to help keep my sanity over the following months. As bodily repair was to be ‘later than sooner’, time proved to me that these words Jesus uttered were indeed true, "... Do not worry about tomorrow, for tomorrow will worry about itself, each day has enough trouble of its own..."
By now tubes and wires were attached all over to keep me alive and I was indeed fortunate to still have my brain and heart (central nervous system) with my eyes the only other moving part. My wife Jocelyn, with my sister Pamela’s help soon worked out that if I shut my eyes they would recite the alphabet with me opening my eyes at the correct letter. Slow and frustrating as this was, especially for those reciting and for when my spelling went astray, but with much laughter from the sideline at times — this was to be our only means of communication for the next 7 months.
For five full weeks the body was in a state of suspended animation with absolute no change or improvement. The medical, in their ‘so-called wisdom’ considered me too far gone to send to Auckland for the plasmapheresis treatment [blood cleansing] so I stayed at the provincial base hospital to be kept alive as long as possible to see per chance I may, even without treatment, recover on my own. Distinct memories of these early weeks were vague as I drifted through the mists of narcotic pain-deadening injections and hallucinating horror dreams with life generally bordering on the point of no return. With Jocelyn’s encouragement on the sideline I had to do my bit and hang in there. During the third week my air intake pipe fell off (as it would do on future occasions) and for a time the noisy alarm was not heard even though an intern was inserting an arterial line into my foot (he was unaware of the significance of the ‘noise’). I had drifted off into unconsciousness, feeling .... how blissful, no more pain ... then bliss was over ... back into reality, surrounded by the trusty cardiac team bent on my survival! Not fearful to die for I was ready to meet my Heavenly Father, but more concerned that my family could lose me as a result of machine failure or human error ... Extremely vulnerable but trusting that somehow we would win through.
A very lonely world that only I could tread. No one could explain what to expect, what, if anything would repair, or how soon? To keep my brain active I would count the tiny squares in the ceiling panels (my main view) then try calculating the number of tiny squares in the ICU ward!! Later I was told how difficult it was for most people to relax and live on a ventilator for any period of time! Here are some of the things that have to be worked through when in this situation: - A feeling of isolation, even from loved ones - total physical dependence - constant physio with lung suctioning every two hours - 2 hourly turns day and night - unable to swallow - unable to open mouth, speak, hear well or taste food - manual bowel function and catheter drainage - constant ‘eye’ contact with the attending nurse! However, this grim tide was now to slowly turn as the climb out of the pit commenced .... "Look." Said Jocelyn to the nurse, "Loxley’s nostrils are moving!" Life was making a comeback into my wasted, skeletal-like body. From this small beginning was to come some restoration that basically ceased after approximately two years.
As my body slowly and indiscriminately repaired it became less tolerant of ‘attachments’; first the bladder function returned, then full hearing, and painfully my swallow and throat functions restored. It was three months before my first breath but it would be a further 4 months before I was finally quit of the ventilator ... then that’s another story, with all it’s psychological hang-ups. Seven months on and now breathing on my own the full 24 hours my scene changed from one-to-one nursing of ICU to the ‘do-it-your-self’ care of the open ward; another battle ground where victory was essential. We very nearly lost the war at this stage with a nasty set back but a providential shift to another ward via the Coronary Unit turned things around and with specialist care, saved the day. Ten months on and it was off to the Otara Spinal Unit for some much needed rehabilitation. Amongst other good things my wife and I learnt the use of a slide-board for transferring and the most wonderful of all, my own head probe. A whole new world began opening up before me, as with this probe I was able to type, paint and turn pages for reading. At last I could express myself, just being able to do something ... A giant mental and emotional step forward to recovery.
Regular physiotherapy encouraged along reactivated but badly atrophied muscles and common with this disease, the nerve regrowth is haphazard and uncertain. Whilst Jocelyn was busy at home organising the shower alterations I was hard at work learning to feed myself with an attached hand splint and managed to do so prior to my hospital discharge in December 1986, 18 months on from the onset.
Home at last, what excitement....... but ... something is strangely different... I seem so remote from all my familiar things and was unprepared for this situation .... just to look and not able to touch ... and I was our ‘Mr. Fixit’ round the home.
Frustrations began to melt as I came to accept the fact that these activities were beyond me and that Jocelyn was ably taking on the Mrs. Fixit role, along with all the other roles we had shared. From the hospital there had come with me various aides such as elbow supported walking frame and leg splints but soon these were redundant as I graduated to a hand-held walker for short walks. Then the commode for ablutions was replaced with a shower chair and so on. Soon other aides began dropping off, I now held my eating utensil in my fingers, the head probe went as I was soon able to type with two fingers and turn pages with my hand. Natural curiosity has helped me achieve such tasks as to operate the stereo/tape deck, play the mouth-organ, clean my teeth, shave and the other ablutions as well as numerous small tasks which Jocelyn previously did for me.
Even though most of the day was taken up with ablutions, physio, eating and resting, there was still an hour or two that I thought could be used more constructively . It was whilst in this frame of mind that a field rep from a Disabled Persons Welfare Society turned up, suggesting that I may be a suitable candidate to be a recipient of a computer (from a trust) to assist rehabilitation. "Computers!" I said. "I hardly know my way round a pocket calculator let alone something as awesome as a computer!" ... Well, if the Society was offering, it was up to me to give it my best shot. So began a new and wonderful activity which presented a challenge and a means of keeping the brain sharp and at least two fingers working! I now serve a reasonable use in the community with computer desktop publishing of newsletters, brochures etc for various organisations and businesses.
12 years on and several computers later, life goes on. Most of the time I am wheelchair bound but use the walking frame frequently through the day despite the fact I have no physical strength or movement in feet or lower limbs. My hands do not function well, with none of the finer finger movements possible. We still have our on-going problems. Jocelyn has become an insulin dependent diabetic in recent years and finally I made the decision to enter a rest home as Jocelyn’s health was deteriorating and we were not getting younger!
Now 21 years on, aged 76 and residing in the hospital section of the Rest Home I am starting to feel my age and have slowed down a lot. However I still enjoy reduced hours on my computer, precious time with my loving wife and family and of course the more time I have to enjoy the companionship and comforting counsel of my Heavenly Father.
In 1985 there was no real high tech. ICU as we have today, it was 6 beds in the end of a surgical ward partitioned off and decidedly scruffy.
I entered this situation with the idea I’d be out of here before I had a chance to get used to it! However, this was not to be as by the third day I was being ventilated and these machines could only be monitored and attended to in the ICU section.
The regular ICU nurses were in general a caring bunch and usually it was easy to put your trust in them. The part timers and meal hour relievers were a different story. These I dreaded as they knew nothing of ventilators, suctioning etc. and gave little confidence as they hovered round looking nervous. One regular part timer treated me like a machine. Because I was unable to talk she refused to take the time to allow me to spell out (by opening and closing my eyes) how certain jobs were to be done ... Why ask me? I’m only the patient! She would leave the ventilator connection off my trachea whilst she turned her back and proceeded to flush and clean the suction tube oblivious of the fact that I was unable to take even one breath on my own ... she assumed I could breath enough without going to the fag of putting the connection back quickly each time... She never thought to ask the situation. On several occasions I nearly went into cardiac arrest through this procedure. These relievers were obviously NOT trained in ICU care and practice, I hope it is different these days!
Some house surgeons were just as incompetent as the relieving nurses as this illustration will show.
A particular house surgeon was busy fitting an IV line to my foot when the ventilator connection popped off, which in turn set off the alarm bell. The only ICU nurse in the ward at the time was busy at the other end of the area and looked up to see what was happening. On seeing the young intern bending over me thought everything was under control and carried on. I gazed at the young chap and wondered why the lack of attention ... then I passed out into oblivion! I came round with the cardiac team working on me looking very concerned over my welfare. The intern was nowhere in sight ... apparently he did not know what the alarm was for, not having heard it before!! So you see how the patient can become very apprehensive over certain people coming near the bed or too near that life saving machine the ventilator!
Don’t get me wrong, the regular ICU staff were most dedicated and despite the precarious situation I was in, there were times when we had great hilarity, especially between my wife, our daughter and son in law and the nurses. The nurses called my wife "mother" as she was allowed to be beside my bed most of each day. I was allowed to have a large poster of the "Remarkables" stuck to the ceiling above my head which I greatly enjoyed looking at along with a few others but then came an officious new charge nurse who tried to clean up the joint and make it more clinical so all my posters had to go .... after much complaining from the other nurses and my family she reluctantly allowed me to keep the "Remarkables" ... but I had to take it with me when I left the ward. That poster helped my sanity for the 7 months I lay in that one spot.
The great loss of all those things we take for granted was so hard to bear and those who understood were eagerly looked for I tell you. The lass who would manually pick the marbles out of my bowel, changed my urine soaked bed, suck the junk out of my mouth, stop in passing and give me a wee kiss on the cheek and a cheery grin, shave me with gentle hands, rub cream on the parts they knew were sore. Those who understood how much I had lost showed it in their approach to my care. As the patient I could easily discern the genuine nurse.
I was reduced from a normal active Mr. Fixit to a do nothing-say nothing person. How I longed for my continually parched throat to have cool water down it. I watched as nurses brought bottles of cool clear distilled water into the ICU (for what I never did find out). Nothing was to pass down my throat for months. Sustegen and various other fluids were my food and all that stuffed down the nasal gastric tube straight into the stomach ... would I ever enjoy the taste of real food again? The pain in my body especially hips and buttocks, would this go on forever? Turning every 2 hours didn’t ever seem frequent enough. Those who could see the discomfiture would frequently break the rules and give a wee shuffle of the body to ease the pain. Hearing was difficult as the ear mechanism seemed to have frozen in a shut position at the onset of paralysis and this did not help the communication. Visitors and consulting Drs. and Physicians would stand at the end of the bed and I was unable to hear what they were saying so I didn’t get to spell out (with my eye alphabet language) how I felt about things I was only told what they (medical) planned to do which in general was to keep me alive long enough to see if I recovered.
I guess nurses and doctors don’t have the time but that is what is needed when nursing GBS people. The condition is devastating to the human system relying on a machine for ones very life .... scary to say the least and most of us would have no idea what to expect so would feel absolutely totally insecure and isolated, locked in this inert body but mentally completely active. We are not thinking about who’s caring for our home, who’s feeding the animals, what will I do next year? No, it’s can I get through the next hour without too much pain, will the ventilator tube fall off and no nurse be handy, will the nurse remember my insulin shot, will the physio be my regular and tilt the bed enough to get the needed result and so on, hour by hour through the day.