Monthly Archives: January 2015

Going Retro

This week I’ve been immersed in activities that I thought were well and truly relics of my past life. What, you ask, has prompted this backward step?My almost nephew will be turning five in a month, and thinking about this caused me to have a crisis at the passage of time.

Alexander has now overtaken me in many areas, and I witness regular, effortless, neurological development that many times alternately astounds me to tears of joy. For over a year he has been able to do jigsaws with over 100 pieces which I, with my visual issues could not do at his age, or even now. I am having a good day if I cope with something that says age 3 plus, though I never saw the point of putting the thing together in the first place. For me, it was a torturous activity far too resemblant of physio or occupational therapy to make it it to a pleasurable pastime.

I like to get useful, mostly educational type gifts. When at Christmas, Alexander sat next to me reading what I think was the ladybird book of the Christmas story, I looked on in wonder as he read aloud the entire book complete with the back cover that said it was suitable for toddlers. I had to point out that it wasn’t referring to the person doing the reading. Just as I marvelled at how easily he learned to walk, I was floored by the ease and fluidity of his reading and was overcome with utter relief for him that he will be able to experience other worlds, learn facts and express more than I would have been able to do at the same age. I like to share the books of my childhood with him, in turn recapturing my lost youth, or perhaps more accurately my inner child.
It was to this end that on Sunday I found myself purchasing an audio book of ‘A Bear Called Paddington’, by Michael Bond. For the uninitiated Paddington is a small bear from ‘Darkest Peru’. He is sent to England by his aunt Lucy after she moves to a residential home for retired bears. He somehow finds himself on a railway station platform, is found by the Brown family wearing a label saying, ‘Please look after this bear’ and in the logic and kindness that seems only to exist in children’s stories, they do just that. No questions asked.

Paddington has a very literal thought process, gets into scrapes and has adventures. He also seems to have a negligible ability to spell, which endears him further to me. Sometimes I think he is me in bear form, he certainly seems to have as many obscure adventures.

I swore that, after my previous experience with emergency call buttons, hell would freeze over before I had one again. Well, it’s chilly outside and after having found myself stuck on a bedroom floor, discovering why dogs don’t like laminate, as you cannot get a purchase on it, I have had to relent.

I was most impressed that the Social Worker managed to get this sorted out within a week and a half, even taking into account Christmas break. I had a phone call telling me that an installation operative would be calling to fit me with the necessary kit. He came at the appointed time and began demonstrating the equipment. When installing the box he had to move my ornamental Bilbo Baggins, made for me by my dad’s artist friend. In this I discovered a kindred spirit and while he was working we had a lovely conversation about Tolkien.

When he had finished he got me to have a test run, I pressed the pendant button and a reassuring, automated voice told me not to worry, that I would be connected shortly. The test run went well and the responders on the end of the phone seemed to really be aware of the need for their service. A far cry from my last experience, about 10 years ago.

It is heartening to discover that even in a climate of cutbacks and closures of services, positive progress has been made. I now feel much safer, as a result this has made me more independent. Strangely, it has also made me feel more youthful as I know I will be able to sort out a problem without relying on family support. I feel positively retro in all senses.

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Meaning and Metaphor: Dispatches from the Front Line of an Illness and Disability

I have to confess to being somewhat neglectful in my blog posting of late. The truth of the matter is that having a close family member with cancer for a while became all consuming, our family has had its normal rhythm disrupted. Several weeks ago I came across an article in The Times about the different metaphors we use to describe illness. These it seemed were most often to do with war. I think for the individual affected by serious illness the war metaphors can become both descriptive and prescriptive, many people have described my mum as tough and a fighter. Both are true of her and in many ways appropriate as she attacks life in general with a type of military precision I have found nowhere else in civilian life. I believe it was Christopher Hitchens objected to this type of description, he felt that cancer was attacking him, not that he was battling the disease. I suppose having a positive mental attitude can improve your quality of life, but I am not sure how much impact it has on the progression of the disease.

Spending a lifetime living in this order and routine I now feel adrift, when cancer a strongly disruptive force unexpectedly landed in my wider family life. The strangest thing was that many things carried on as normal. Cancer is a word that makes you stop and take an involuntary deep breath, the surprise comes when you breath out and and find that all other aspects of life are the same, life it seems still happens. The paperwork generated by my disability, normally so deftly filed by my mother has piled up meaning that my once ascetically pleasing work top has all but become engulfed. For several weeks I felt like I was camping out in my own life, just as when you are on holiday, you get to the hotel, live out of suitcases and experience and do things you would not normally do, so to with the wider family experience of illness.

My life has been ordered and routinised by virtue of the assistance I require in order to live. Every day of my life has its own structure, different activity and mini plan. Cancer has disrupted things on every level. So used to being the subject of medical intervention myself it felt like an odd kind of out of body experience to watch it from another perspective. People are always telling me how much I sound like my mum, now I catch myself thinking she sounds like me. She uses medical lingo like a pro and would rival some of my friends from my special school days, comfortably using terms like PIC line and spiking a temperature. For all my adult life my mum has served me well as a clothing mannequin, while shopping she would try outfits against her body to see if the trousers would be too short as we are the same height. I never thought this role would reverse in the form of the loan of my spare wheelchair and pressure relief cushion, the latter becoming necessary because of a serious reduction in body mass.

We have a deeper and in some way better understanding of each other, perhaps that can only come via a shared experience. I have learned to be less idealistic and judgmental of those who make choices for loved ones based on the information given at the time, and we both know well that medicine can be both miraculous and cruel, tearing to the depths of ones soul on both counts.

Recently I was struck by media reaction to statistics that indicated that over 50 percent of woman and 43 percent of man took a drug that was prescribed to them, most “popular” were pain killers, cholesterol medication and antidepressants. The inference being that we could do without these if we just shaped up and pulled ourselves together. It saddens me greatly that even in the 21st Century it can be inferred that to experience mental ill-heath is a negative lifestyle choice that should be discouraged. Yes such drugs are costly, but like treatments for cancer and heart disease they save many lives and improve the quality of those lives.