Looking at things upside down.

The Scottish Island of Iona in the Inner Hebrides is a magical place. Clear light, pure air, and its colours both intense and soft. In the distance lie other tiny islands – the hexagonal granite mass of Fingal’s Cave and the distinctive outline of Dutchman’s Cap. It’s like being on the edge of the world and feeling deepest calm. It’s a place to return to for as many hours as you can snatch. Even remembering Iona is uplifting. I once spent a full week there, centred at the Abbey. My MS was in relapse and limited me but somehow just being there was everything. Any activity I could engage in was a blessed bonus, including a particular workshop where we were given paper and coloured pencils and encouraged to draw our life’s journey. I recall having to insert lines across and down the page to indicate highs and lows. I did it without enthusiasm. Remembering my ‘journey’ felt threatening and roused a welter of emotions. The result was blatantly mundane and disappointing. Suddenly someone came past and looked with interest. “Turn that round and look again!” Upside down, so to speak, those random lines had unwittingly become the outline of a rudimentary boat, complete with mast. I guess that sums up MS for me. It forces me to look afresh, even the wrong way round. It moves me on.

In the MS stakes I am very fortunate. I can look back over decades of living with MS, desperate, painful, and lonely times as well as good and successful times. MS has changed the course of my life by not only imposing restrictions but also opening doors of opportunity. I hope I am the better for having to learn repeatedly how to cope with the disease. Each MS symptom and relapse brings new challenges. It is rather like being at sea. You rely on the craft you sail in and struggle with what the elements throw at you. Your own determination to get through goes only so far: there’s no guaranteeing the outcome. You give it your best as long as body, soul and spirit hold together. For me, the rest lies safely in the hands of the Almighty.

My voyage with MS began with rough experiences: inexplicable fatigue to the point of becoming semi-comatose, tripping and falling, weak and spastic limbs, lack of coordination, ataxic gait, vertigo that threatened to topple me and throw me out of bed. Then there were those peculiar sensations of tingling, trickling, pricking, feelings, pins and needles, aching muscles, nerve pains, numbness and deadness. Getting around became difficult so I had to use a stick, wheelchair or scooter. I was literally knocked off my feet. One neurologist advised me to keep fighting and working on and not let MS beat me. As a college teacher, I was forced to reduce my working load until I could barely manage a couple of hours’ work a day. It was a nightmare. I just didn’t have the strength to go on. So I chose to ignore that medical advice. I sensed that my body needed rest in order to recover its equilibrium, requested an indefinite leave of absence and opted for living at my own pace: bed-rest when overtired, moving around and getting out whenever possible on my own or with my husband’s help. He was a real brick and stood by me though he worked long hours and was often away on business. That gave me long lonely hours to reflect – when I had the energy to do so.

I battled with negative feelings, despaired, argued with God, and somehow came through. Progress was slow and unsteady. I linked up with the local branch of the MS Society, where I met another newly diagnosed person - we spent hours together or on the phone chewing over MS and life in general. Meeting others with the disease in all its types and stages was such an eye-opener that I chose to get involved as a volunteer. As a counterbalance I positively introduced fun things like going to the ballet, concerts, an art exhibition or beautiful garden to recapture links with the outside world. It began to pay off: some two years later I resumed teaching part-time, with a stick, and fatigue. The students were really supportive and caring and I just loved interacting with them. Around that time I was also introduced to counselling, got to know myself better, and discovered new ways of coping and relating. As if by magic caring friends came my way and their support made all the difference.

Since then I have ridden a roller-coaster of relapses and remissions. Some doors have slammed shut, like full-time employment, and others swung open. That early time of adjusting to MS was an apprenticeship, from which the rest of my life has taken its cue. I keep having to adjust again and again. Physical limitations have firmly nudged me towards certain activities, not only teaching and being there for others, but also research, and academe. I seem to have chosen pathways that lead me to explore the margins. I can’t help being intrigued by this and wonder what part MS plays, or is it just me?

My career was in teaching, originally as a geographer, but much of the time I taught English to hundreds of adult students from all over the world. After diagnosis, which was not straightforward, I also trained in counselling. Later I went on to do an MA in Pastoral Studies, during which I gained practical experience and skills as a chaplaincy visitor, which I have since put to good use. In 2004 I graduated with a PhD in Practical Theology from the University of Birmingham. My thesis, using qualitative research methodology, explored the place of care in a specific church setting and examined the complexities we face when giving or receiving care. So often we expect care to exist but do nothing to foster it.

On the MS front I have done a lot of voluntary work, ranging from involvement at the local branch level, raising awareness of the specific needs of younger people after diagnosis nationwide (through ‘Crack’, a young users’ group set up by Nicole Davoud), running workshops for the newly diagnosed, to trusteeship (twice) of the national MS Society. Along with Sandy Burnfield, I contributed to setting up Persons with MS International - insisting on the little ‘w’ in PwMS because it seemed important to mark a subtle separation between the person and the disease. PwMSI broke into the corporate structure of MSIF by providing a resource of capable people with the disease who could contribute to committees and also provide information and support on living well with MS. We were determined that people with MS and their carers should know more about MS and challenged the national societies to further this aim under the umbrella of MSIF. I have written a book on MS and also contributed a chapter in a book on palliative care.

People often ask me how my book came about. The simple answer is that I was asked to do it. A letter arrived unexpectedly from a publisher inviting me to submit a draft for a book on multiple sclerosis on recommendation by John Walford, a former Chief Executive of the UK MS Society. Suspecting it was a joke I insisted on going up to London to meet the commissioning editor and found myself agreeing a contract. The brief for the book was to give information and support, drawing on real-life experiences of a wide range of people with MS, a sort of ‘companion’ between covers, which seems to work well, for some people at least. I don’t write easily and struggle to remain relevant and authentic. For the latest edition (4th) I have enlisted the expertise of Professor Richard Reynolds of Imperial College, London, who is also the Scientific Director of the UK Multiple Sclerosis Tissue Bank. Richard has carried out MS-related research for over 20 years and enjoys explaining the complexities of MS. The book has been challenging to revise and update so that it is relevant for people newly-diagnosed in the 21st century.(1)

Currently I serve on the management board of the UK MS Tissue Bank and also as a member of the steering group of a research project into palliative care for people with MS. From the very start I have witnessed what MS can do to people: it grieves me deeply. I pay tribute to those whose lives have been devastated and lost by its negative impact. Multiple sclerosis is a bit of a medical tsunami – its impact may vary from person to person but experience it in any form and you never forget it. I mourn the rare and untimely deaths of young people with the disease. As a result I am invested in finding out what sort of care is appropriate for each symptom and at each stage of MS. In 1997 Peter Cardy, another previous Chief Executive Officer, and I started to explore how palliative care might inform such care for people with MS. Palliative care is generally only associated with terminal cancer but rightly defined it is appropriate care for anyone whose medical condition cannot be cured. It was exciting to start networking within ‘the world of palliative care’ and discover many people who were concerned at the paucity of care for people suffering from many different diseases and illnesses whose complex care needs might demand specialist input at various stages throughout their lifetime. As a consequence the UK MS Society is funding three research projects into palliative care and MS. My own preliminary investigative research resulted in a chapter on palliative care for non-cancer conditions. Trying to get close to how we feel when we need care and what such care should comprise became the deepest and most heart-searching piece of writing I have done.(2)


Speaking personally I find myself at a crossroads. Academic success, a history of volunteering, and a bit of writing must make me a generalist but at present with no clear way forward. The realities of my MS leave me with possibilities but limits. When I’m out and about, undertaking a project or contributing to a meeting, people don’t realise the price I pay to do what I’m doing. It’s a gamble I choose to take. I’ve learnt to cut corners: honestly, I rarely ever prioritise housework but save my energy for activities that satisfy me because they contribute to the well-being of others. I try and pace myself, though there’s no guarantee it’ll work. I sometimes know when to bow out if I absolutely have to – but I still struggle with those feelings of missing out, being on the periphery. I guess it’s about balancing – sometimes learning to lose control in order to gain it. So now seems a good time to attend to the nurturing I’ve neglected in recent years to get that doctorate done. I’m especially looking forward to catching up with old friends and meeting new ones. My husband and I have recently taken on an old Victorian Gothic mews by the River Thames. It needs renovating and its ground floor turning into residential accommodation. Now that we’ve got the location, and the kettle’s on for a cuppa, is anyone interested in a picnic or a relaxing boat trip on the river in gentle sunshine?

If you would like to contact Cynthia please send your message to info@msif.org and we will pass on your e-mail.

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1. Cynthia Benz & Richard Reynolds. Coping with Multiple Sclerosis: A Practical Guide to Understanding and Living with MS. (London: Vermilion, 2005)
2. JM Addington-Hall & IJ Higginson, Editors. Palliative Care for Non-Cancer Patients. (Oxford: OUP, 2001) Cynthia Benz. “The Patients’ Perspectives”, pages 198-209.