Capturing the moment
Jennifer Willis (www.jenniferwillis.co.uk)
Open Door - May 2012 pages 8-9
I never did like to give up, was always competitive, a perfectionist, a bit of a control freak, independent, hockey player, golfer, skier, mother of three young boys and a husband who worked away from home. None of these characteristics sits comfortably with a diagnosis of MS. Then again, what does?
I guess I cried on the sofa for about two weeks after diagnosis, grappling with how my future had suddenly become so uncertain. I know that there is no certainty in anyone's future - you can be knocked down by the proverbial bus at any time, but I found myself standing directly in the path of that bus.
When I was a child, my grandmother used to bring me to visit her neighbour who had MS. Jimmy's MS was very advanced and he was totally dependent on others for all his basic needs. As an adult, I knew two people with secondary progressive MS and I had watched how they became slower and more dependent on others. So my experience was a fairly negative one.
How was MS going to affect me? Would I end up in a wheel chair? I was told I had relapsing remitting MS and that it is not possible to give a prognosis because symptoms and progression are different for each person. This was one of the most frustrating things. You also realise how many people have little or no understanding of MS. Frustratingly, over time it became clear that my system was not prepared to accept any of the disease modifying therapies, which made coming to terms with my lot even more difficult.
Acceptance
Eventually my attitude became one of acceptance. It was not possible to know what MS had in store for me so there was no point in trying to second guess or worry about what may or may not happen in the future. I felt fortunate that my MS only began at the age of forty when I had had my family and had been able to indulge in the activities I enjoyed without restriction up to that point. Also, nasty though it is, MS was not a condition that would kill me but rather was something that would potentially make life very difficult for me and my family from time to time.
For a couple of years I did my best to continue my favourite activities, after all there was no point in putting off today what I may not be able to do tomorrow. I coached junior hockey instead of playing, I played golf with the help of a buggy and I joined the rest of the family on ski holidays. However, very soon, mainly due to dreadful periods of fatigue and days on end lying on the sofa like a zombie feeling like I had nothing useful to offer, I realised that change was required. I could no longer reliably commit to the coaching, I could not finish a round of golf even with the help of the buggy and skiing became instead a struggle to make it up the mountain for a hot chocolate. These may seem very trivial inconveniences to some, however, they were significant to me - I apparently had everything I could ever ask for in life yet I could not do the things I wanted to do. Which brings me back to where I started.
I do not like to give up and I do not like to do things by halves. So my solution was to set things aside. I made the decision to set golf aside, to stop trying to ski and to change my commitment to the hockey coaching. At the same time I decided to find another activity - something productive and satisfying that would adapt to the varying problems of my MS. Psychologically this was very different from giving up. I was in control.
Photography
So, at my husband's suggestion, in stepped photography. It was an organic process, starting with photographing the boys skiing and playing hockey, my teammates playing golf matches and my two little miniature schnauzers. With time on my hands I was able to indulge and experiment, persuading friends to let me photograph their pets. Technically, I knew little of photography, however it seemed that I had a great eye and that was more important. Soon people were asking me to photograph their pets and, after being in the right place at the right time, I found myself in demand as official photographer for all the cat shows in Northern Ireland.
I registered as self-employed and set up a website, however, money was never the issue (I have never been brave enough to charge enough to make money!). This was an outlet for my creativity, an opportunity to retain some purpose and sanity. The commissions increased and at the start of this year I was invited to become the official photographer for War on Want Northern Ireland which I carry out on a voluntary basis.
As fast as this hobby had developed into a business, I never for one moment expected what happened last year. For a full week in November, over fifty of my images were displayed in a solo exhibition in one of Belfast's leading galleries. My story and details of the exhibition were carried in the main local newspapers and a surreal weekend was made complete by being guest on a BBC Radio Ulster Sunday morning show.
Photography has met my needs on many levels - intellectually, creatively, socially. I love looking through the lens and visualising the image I know I can produce from that brief moment in time. I love the challenge of capturing that perfect shot in moments of chaos and commotion, of shooting the familiar in unfamiliar ways and of showing the beauty and potential in 'the ordinary'. Short walks are made longer by looking for an interesting shot. Even when I'm not feeling too energetic and am stuck to the sofa I will photograph the moon at night or a bird or a squirrel on a tree in the garden. When I am feeling well it gives me greater motivation to get up and go and seek out some great photo opportunities. It has given me interest in things that I would never have been interested in before and brought me into contact with people I would otherwise not have met. Apart from my husband, family and friends, photography has probably been the biggest help in coping with what MS can throw at us.
MS has changed me and it has turned our family life upside down. I don't like the fact that I have MS, the uncertainty it brings and the very difficult times it inflicts. Yet I cannot ignore the opportunities that have arisen because of it. It has driven me down a different path in life and rather than fighting it, I have run with it. There really is no point in wishing for what might have been or to change something that cannot be changed. There is, however, immense value in making the best of what actually is.
- Visit Jennifer's website at www.jenniferwillis.co.uk
- Find out more about photography in Staying Active
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Open Door articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.