My journey into unknown territory had started on a Tuesday in February 2006 before I even knew it. I felt a tingling under my thumb and forefinger nails on my left (dominant) hand but thought no more about it – I was seeing a hand surgeon about a minor problem on my right hand later in the week and made a mental note to mention this to her as I boarded a plane for a work appointment in Brisbane.
I felt a bit strange all day, as I ran from one meeting to the next, and was relieved to be getting on the plane home that evening. When I finally arrived at the restaurant where I was meeting my husband for dinner, I could barely write my name on the CabCharge docket. At dinner I was having trouble raising my fork to my mouth. A bit panicked, I hoped it was just exhaustion (I had been up since 4:30 am to catch the plane) and that I would feel better in the morning.
Sleep was restless and in the morning I could no longer raise my left arm and my right arm was starting to go weak. I did manage to shower and dress myself (unbeknownst to me at the time, for the last time in a year and a half). I did not want to go to hospital. We called our GP and meet at his office an hour later.
The GP looked me over, found I had no reflexes and sent me to have a CAT scan of my brain (I could still walk at this stage) and wait to collect the results. The results were good, he said, no tumour and no stroke. But I still could not move my hands and arms. He said (although he had never actually seen a case before; only read about it) that he thought I might have Guillain-Barré Syndrome or GBS - a rare illness that affects the peripheral nerves of the body. My nerves were being attacked by my body's defense system against disease - antibodies and white blood cells which were not distinguishing between the virus and the nerve insulation (myelin).
I was told to go to hospital immediately, not even stopping for clothes or toiletries, as the disease can affect the lungs and require being put on a ventilator.
I will forever be grateful to this quick diagnosis which potentially could have saved my life. After diagnosis was confirmed we were told that I was ‘lucky’ to have GBS, which normally gradually recedes, rather than one of the many other possible neurological diseases being considered.
After waiting several hours to be admitted, I found myself in a hospital room where I was given a ‘call’ button I was already unable to press. After several nights sleeping in the hall next to the nurse’s station because I was unable to call for help, I was moved to the ICU. The ICU became my ‘home’ for the next month. Fortunately, though I became paralysed from the shoulders down within several days, I was able to maintain my breathing myself and my voice. This was a mixed blessing in the ICU where nurses were not used to dealing with the demands of a conscious verbal patient.
A particular issue was creases in bedclothes and sheets. Though unable to move, I was none the less hypersensitive to texture – bedclothes and towels felt like sandpaper and lying on any creased fabric was a new form of torture. I’d plead to be moved or adjusted but had to wait until it was time for my next ‘turn’ when sufficient staff were available to move me. Unable to sleep in the first few weeks, I hallucinated about being moved each night to various strange locations – a ferry, a train, backstage at the Sydney Theatre Company.
I was also unable to control my body temperature and went between freezing and boiling, more often the latter. My husband had to bring in a fan.
Throughout this ordeal my husband, Max, was and continues to be with me every step of the way. As a result I can say that, incredibly and perhaps stupidly, I was never scared. I naively never contemplated not recovering. I shudder to think what this experience would have been like without Max. He has had his own journey – one that I do not minimise and leave for him to tell.
When I was finally stabilised it was time to move to the Royal Ryde Rehabilitation Hospital. This was bliss compared to my former surroundings and my home for the next 4 months. I still had to be ‘hoisted’ from bed to chair or shower or wheelchair but there I was dressed and given access to an electric wheelchair almost immediately. I had just enough strength in my right wrist to push the control throttle. I was away!
Then the real work started. I had to relearn how to sit up independently (first for a few seconds, then a few minutes). The same applied to standing, walking, and feeding myself. It was months before I had the strength in my right hand to lift a light plastic cup to my lips and drink. I am yet to do this with my left hand.
The road to recovery has been slow and thankfully steady - with my hands being the last to recover. I had just assumed that I would be fully recovered before I left rehab. It was a shock that I was not. Returning home again was initially very scary. What bliss it was when I could toilet myself independently again. I now take pride in doing many mundane things I used to take for granted like washing up, using the washing machine, hanging out clothes, and doing some limited cooking (happily more each day). I passed my driving test several months ago and now drive a slightly modified vehicle.
I am no longer afraid to walk alone in the street, for fear of falling or being knocked over. It is only recently that I can dress myself and wear ‘normal’ clothes. The other day I did up the zipper of a jacket I had on for the first time; that’s harder than zipping up a garment you’re not wearing. My immediate future goals are simple:
- Having more confidence in holding my grandchildren
- Being able to cut up the food on my plate with a knife and fork
- Being able to do even more food preparation
- Typing faster on the computer with more fingers or, even better, two hands
- Lifting and putting away books above waist height/shoulder height
- Maybe some day resuming my career as a qualitative market researcher on a limited basis.
Our society’s calendar is recorded BC and AD. My personal calendar is before and after GBS. Before GBS I worked as qualitative researcher in market research where I loved listening to people tell their stories – which is in part why I decided to tell part of mine.
I haven’t given up on having close to full recovery. Who knows how my journey and this story will end.