A personal story

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A personal story

Postby suecdmt » Sun Sep 21, 2014 8:44 pm

A personal story

I have lost count of the times that I have sat down to write this or written parts of it in my head. Even as a writer ‘phobic’ I have been puzzled as to why putting my story into a written form has proved so difficult. When Judith first asked me (months ago I might add) I thought yes! Easy peasy! I have spoken about my illness many times – turns out committing it to print not so easy or peasy!

I find myself reflecting on this often – perhaps it is, for me, to do with condensing something of the full horror and trauma into a few pages or maybe having to relive in some way 3 years of experience and ongoing difficulty, which at the time I lived day by day and many times hour by hour. But perhaps it is the fact that I wonder who will get to the end of this missive without ‘blanking off’

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half way through and mirror an experience I felt many times with friends, family and colleagues, when eyes glaze and the subject is changed.
Four years on I realise that very, very few people ever ask me what my life is like – rather people seem to prefer to comment on how I look or ask if I am better.

And so my story begins – Christmas 2009 and my feet are cold. Nothing earth shattering, just cold feet and not unusual for me. But after 2 weeks I thought it odd and as they started to look puffy I went to a GP who told me I had probably been sitting down too long and took some blood tests. Hmm as a Movement therapist, keen gardener and DIY addict I thought not but waited for the test results. Zip all clear but after a further few weeks now my feet were going numb so of I went again to my favourite GP (who had treated me for decades) who said I had probably had a virus and had to wait 6-8 weeks for my body to kick it out and if it didn’t go then she would refer me to a neurologist adding ‘I want to manage your expectations though as they will probably tell you what you haven’t got rather than what you have’. I remember asking her if I should be worried about something serious like MS and her saying “No – if it’s something serious then I will eat my words!!”

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I managed to wait for 4 weeks, at which point the numbness had travelled up to my calves and I noticed I got slower and couldn’t accelerate and wobbled a lot. Instinctively I retrieved a pair of crutched from the attic, asked for a referral to the neurologist and received an appointment 2 weeks later for 2 months on. I cried down the phone to the neurologists secretary sobbing “ I won’t be able to walk by then” and compassionately she brought the appointment forward. A week later I was sitting with a neurologist who ordered a barrage of electrical tests and the upshot was I was diagnosed with CIDP (chronic inflammatory demyelinating polyneuropathy. He calmly told me it would take 3 years to recover and to give up dance and movement (I ran the Masters training in Dance Movement Psychotherapy at the time) and focus on admin work!! BUT there was one anomaly in my blood tests as a paraprotein level was raised and so I was also referred to a haematologist. “it’s a red herring though – nothing to do with the neurology!”

So by Easter 2010 I found myself on crutches, hobbling around my home and work and smiling at the fact that at my one day of clinical work in a school for students with profound learning difficulties and physical needs half of the pupils could walk better than me!

I’m not sure whether I had delayed shock, but somewhere within me I still couldn’t make sense of ‘3 years’. However the deterioration was relentless and shocking and by June the numbness had gone to the top of my left leg, ¾ up my right leg and half my hands and wrists. But I had plans – teaching in Spain in a few weeks’ time, followed by a conference in Germany and then teaching in Latvia in August. This couldn’t be happening? I was given a week of immunoglobulin treatment and somehow, naively thought I miracle would happen and I’d get through. I just about made it to the end of term in July, got to Spain on crutches, made it to Germany and watched in horror that week as slowly one by one my toes stopped working, like a sun setting over the horizon. By August in Latvia I had to find a student to demonstrate for me and could barely walk even on crutches. I was lowered onto the floor to teach from sitting.
By September I was in a wheelchair.

The haematologist I was referred to was very caring and ordered a Petscan saying “it’ll probably just rule out what you haven’t got rather than show anything, so don’t get your hopes up!” A week later the results came back – I had a very rare cancer of the plasma– an isolated plasmacytoma that had unusually stuck all its cells in my pubic bone, fracturing it AND even more rarely leaking a paraprotein into my blood that was systematically destroying the myelin from my peripheral nerves. So my GP ate her words and I embarked upon 2 years of treatment – failed radio therapy, fortnightly plasma exchanges, monthly infusions to promote bone growth, chemotherapy for 6 months and finally a stem cell transplant. There was no known data on my rare ‘duet’ of cancer and disability and apart from specialists repeatedly telling me I was ‘interesting and special’ I had to hear that I had a 66% chance of developing full blown bone marrow cancer.

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My life changed. Initially I tried to do small things – I scooched around my garden on my bum weeding the edges of flower beds. I came down the stairs on my bum, carrying each leg over the stair and had to use a walking frame. But eventually the garden became ‘out of bounds’ as my legs gave way beneath me. Some days I didn’t make it up the stairs and slept on the couch. My house had a ’60 minute makeover’ and not with gorgeous prints and paints! Plastic handles were everywhere, handrails, shower seat, bed frame, pressure pads and an, oh so glorious commode at the side of the bed. But this was nothing compared to the changes in my body. My skin became unbearably hypersensitive and no muscles in my legs worked below my hip flexors. Pressure sores appeared and I was periodically literally demented with pain. I described the sensation to friends like this – imagine getting a pair of the sheerest tights and filling them with old junk, wood, metal, anything and stretch them to their limit. Now periodically set light to them.

Nothing in my limbs felt human or anatomical and they didn’t respond as no nerve signals got through. I rarely slept more than a few hours as my nervous system was exhausted and cried every night. For 16 months the deterioration raged and every few weeks I would break down, sobbing uncontrollably. I relied on people for everything and was shocked at the people who simply ‘disappeared’ from my life. But for every one that wasn’t there were more who came to care for me. Ex-students who bought wine and food, cleaned my house and generally made me laugh out loud.

During that time I was bombarded by friends and colleagues continually telling me I had to be ‘positive’, that I had to ‘fight’ and I had to have ‘hope’! I came to loathe the word ‘positive’ asking them to stop using it, as for me it wasn’t a case of positive or negative but being realistic in understanding what was happening to me in the moment. It wasn’t a fight but a deep surrendering to what my body was revealing. But ‘hope’ that eluded me and a journey of curiosity as to its meaning in my life began. I found that the word popped out of my mouth daily “I hope so…. hopefully….. let’s hope…. hope to see you” etc. But I could not in all honesty feel a living, embodied sense of hope in my life. I ended up writing a paper on my reflections on hope with some small paragraphs copied in this telling, but here I want to say more about the experience of living through the bodily experience.

Living through and with cancer

For the past 40 years my life has revolved around dance and movement. I studied it, trained in it, performed, choreographed, taught it and 23 years ago retrained a Dance movement psychotherapist specialising in working with children. I thought I knew my body, intimately, until half of it didn’t work!! So despite the horror and pain I have had an opportunity to experience my being in a different way and I can honestly say I have learnt more in my disability than over all the years of being ‘able bodied’.
I was extremely lucky to have 18 months with a neuro physio that thought outside the box! He followed my body when we worked together – listening both physically and more importantly to the images, memories and sensations I described. All kinds of memories emerged as I lay each week on the floor in my home working with him – times from dance classes long forgotten decades past or strange images of being on an old clipper ship in the fog waiting for the sound of the bell of another ship in the distance or camping (which I loathe) in the middle of a forest. They were almost dreamlike but always unconsciously connected to some tiny lost connection or sensation. I learnt to trust the deep murmurings and work with the seemingly unconnected.

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At the same time an ex-supervisee who had developed work in ‘Body mapping’ – (see http://www.annetteschwalbe.co.uk/body-mapping/) offered me the opportunity to work on my own body map – a full size representation of my story through art (am smiling as I say I will write about this journey more under the creativity section!! But I hope to as it is a story in itself). My physio expressed interest and a joint exploration and journey ensued. Each month Annette would travel to London to work together and slowly images and sensations took shape within my body map. It holds so much of the past four years and all I have learnt from it. Initially I couldn’t even hold a paintbrush as my hands were so badly affected so I painted with cut up washing up scourers. I couldn’t even get onto the floor to work on it without help, but each week an ex-supervisee came to help.
As images took shape and memories formed I found a new and different relationship to my body. I mourned the loss of many activities but also discovered new possibilities. I took it with me on silent retreats, lay alongside it and when I was eventually 2 years later able to stand up, danced (albeit limited) on top of it. I have had to adapt so many things throughout the worst of my illness and often laughed at my own attempts and ways of coping. I learnt that in order to stand up I had to have at least three points of balance – 2 feet widely spread, hips leaning against something and an elbow. I also learnt that in order to hand something over a radiator duly carried on my trusty walker, that you can’t lean on your hips (blocks the radiator) so instead I had to use my head!
So for 18 months I painted my story. At the same time I stroked, patted, rubbed, imaged and loved my limbs holding onto to a belief that I would improve. I have had weekly hydrotherapy – the only place where my body feels totally connected and I can freely share and be supported by others who are ill (I can even turn and jump in water!) Feldenkrais sessions with a committed friend (http://www.feldenkrais.co.uk/) and massage sessions. Plus anything I could manage at home or in the garden.

During my illness and disability I had to experience the devastating despair and feeling that my body had betrayed me. I would stare at my legs and feet, unable to move a muscle, unable to make sense of sensations, unable to walk and wonder if I would ever feel connected again. One day, I was sitting on the floor with a friend, barefoot, when the very tip of one toe flickered. In disbelief I asked her if she could see it – she could! That tiny centimetre of movement brought an overwhelming sense of hope – hope in my body and its ability. Painfully slowly, over many months, more toes twitched and a tiny movement in my ankles came back. It was enough to balance and stand unaided and my friend witnessed and timed how many seconds before I fell over. A year ago I stood and balanced long enough to hang out some washing – the first time in three years! Since then I have been fitted with oh so attractive splints that help me walk unaided indoors. My thighs and knees and hands have recovered (btw shoot the person who designed bottle tops that you have to push, grip and twist at the same bloody time!) but the damage in my feet and ankles is permanent. Last September I went back to work part-time. Teaching with a disability makes for interesting discussion and movement activities!

There are other things I am grateful for throughout my worst times – the help and care of unexpected people. One hospital transport worker still pops in from time to time to see how I am doing. My faith has been strengthened and I have come to value my vulnerabilities deeply. The grief of the losses in my life are still there – every time I see beautiful feet that point and flex or lovely sandals that I will never be able to wear or when someone says ‘lets go for a walk’ and I know I can only do a 100 yards or so before I fade. But I have gained so much through my cancer experience that I treasure.

So if you have made it this far without falling asleep or skipping paragraphs well done!! Serious illness like this writing is not quick or easy. I will end with my own personal metaphor that encapsulated something of my wondering about the illusive nature of ‘hope’ that I alluded to at the beginning – an excerpt from the paper I wrote entitle ‘Hope is a clean fishtank’.

Thank you for reading – Sue x

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During the worst months of my illness I spent most of my days lying on the couch with a fish tank before me and one behind me. One evening, after returning from hospital after another painful plasma exchange, and 4 months into chemotherapy, the doorbell rang. I hauled myself onto my walking frame, hobbled to the door to find 2 young missionaries standing there. “We were wondering if we could talk to you about Jesus Christ” said one. Hanging onto the handles by my door, arms bandaged and exhausted I said “now is not a good time”. The young man quickly responded, “Is there another time?” Beyond exhausted and in pain I blurted out “look, I’ve just got back from hospital, I’m in pain, I have cancer – so no! And anyway I have a faith”. Quietly he looked at me and said “I’m so sorry to hear that is there anything else we can do for you?” – “you can cut my grass” I said half-jokingly. “We’ll do that for you” he replied and the following week showed up with his companion and duly cut my grass. These two Mormon missionaries came for the next two months and helped garden and fix things for me.

Several weeks later I was lying on my couch feeling completely helpless and saddened at the state of my fish tanks, as unable to tend to them they were in a sorrowful state and a few fish had died. They felt like a metaphor for my life – decaying and struggling for life. Then the phone rang “hello, it’s the missionaries here – we just wondered if we could help you in any way?” Two days later three of them appeared and within 3 hours had cleaned both fish tanks! Later that evening I lay looking at the sparkling tanks and happy fish darting around inside, grateful for my Mormon angels as I called them for giving life back. Talking to a friend on the phone I announced – today ‘hope’ is a clean fish tank. My needs were met! In that very moment, in the image of thriving fish, I could sense my own desire to thrive – a deeply embedded experience of life – of hope. That moment endured and sustained through many a difficult time.
suecdmt
 
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