Huntington's Disease Association, Hampshire Branch

Article by Roger Matthews, a foreign correspondent for the Financial Times, at the time of the book launch

 

Few authors have awaited the publication of a book with greater anxiety than Hugh Marriott. For a yachtsman, who with his wife Cathie battled around the world in a 40 foot-yacht, such concerns should, by comparison, appear trivial. But the title of his book explains much. The launch this month of “The Selfish Pig’s Guide to Caring” may prove to be the publishing equivalent of attempting to sail the wrong way round Cape Horn. The author, like the sailor, could end up badly battered, or be greatly praised for his courage, skill and achievement.

 

For nearly a decade Hugh and Cathie Marriott lived out what for most people remains a fantasy. They sold their Hampshire home, bought a yacht, banked what cash there was left, kissed their three daughters fondly farewell, and set off indefinitely to explore the world. “We wanted to live out a dream”, says Hugh, 61, in the living room of his terraced home in Lymington. “Usually, dreams fall short of expectations, but this one didn’t. We had stumbled on a way of life which we both loved and wanted to continue for ever”. Hugh says their daughters, the youngest of whom was at university, “were initially nonplussed, but secretly rather proud of us. None of their friends had parents who were running away to sea”.

 

But lodged in Hugh’s mind was a nagging fear that had nothing to do with sailing. Cathie’s father, Dr Bobby Marshall, for 35 years a much respected Brockenhurst general practitioner, had in the latter part of his life suffered from Huntington’s Disease, a degenerative neurological condition for which there is no cure. It is hereditary and eventually incapacitates the sufferer. Hugh suspected that Cathie had begun to exhibit some of the symptoms.

 

Confirmation came well into the voyage. No test had been available before the Marriotts reached Antigua in the Caribbean when Cathie gave a blood sample which was flown back to Southampton. “We received the results by post. It was our hardest moment” says Hugh. Some of their friends urged them to give up the voyage and return home. Cathie vigorously disagreed and the three girls supported her. For another seven years Hugh and Cathie sailed on via Venezuela, the Virgin Islands, Cuba, through the Panama Canal, to the Pearl Islands, Tahiti, the Cook Islands, Tonga, Fiji, around New Zealand, Australia, Bali, Singapore, Malaysia and Thailand.

 

During this time Hugh was learning what was to become the subject of his book: how to be a carer. From belonging to the tiny minority who sail single-handed across oceans, he was joining the six million people in Britain who care for others, also largely single-handed. When in 2001 Cathie’s incapacity brought the voyage to an end, much to her disgust, Hugh became a dedicated carer. Today there is little time for much else. The process was hard, invariably lonely, often ill-supported and always played out against the insistent refrain of “Why Me?”.

 

“It made me angry, determined, focused and impatient”, says Hugh. Then, adding with a smile, “some people would say I was all of that before”. He read much of the literature to be found on caring. “A lot of it is very worthy. Some of it is so sentimental that it’s embarrassing. Hardly any of it hits the spot”.

 

No-one seems likely to accuse the “The Selfish Pig’s Guide to Caring” of failing to hit the spot. It is more a question of how sensitive those spots turn out to be. A brief glance at chapter headings reveals compelling topics such as “Pushing them Down The Stairs”, and  “The Messy Stuff”, or simply “Sex” and the provocative “Why Care At All”. Each addresses with candour, and sometimes uncommon frankness, issues that Hugh in particular and carers in general have to face. “There may be six million carers, but that is no comfort to each individual carer who feels as if they are the only person in the world ever to go through this and think these thoughts”, says Hugh. “Carers have to give so much of themselves that it is very easy for them to feel their lives are being stolen from them. They feel as if they have nothing left of their own. One of the points of the book is to help them identify and nurture what in life is theirs.”

 

Hugh’s and Cathie’s lives were emotionally capsized from that moment they opened the letter in Antigua. “That is what makes it all so hard”, says Hugh. “It catches you unawares, probably just when you are in the middle of doing a load of other things that seem important, and which you can no longer do. So it’s easy to feel resentful. And then you feel bad about being resentful and make the assumption that you are a selfish pig”.

 

For the Marriotts the agony was compounded by knowing they would eventually have to abandon their dream.  But the shocking news about Cathie served also to heighten the intensity of the experiences that followed. The fear: when Tacit, their 40 foot Valiant built in the United States, was nearly lost in a lock on the Panama Canal when hit by the wash of a huge vessel ahead of them. The delight: when the Marriotts arrived in Raroia, an atoll in the Tuamotus, and having invited local women to come on board for tea, watched in wonder as the entire female population of the island descended on them, from tiny girls to great grannies. And the courage: when Hugh had no option but to dive to free Tacit’s propeller in the accurately named and well-populated Crocodile Creek in Northern Australia.

 

Families and friends flew half way round the world to spent a week or two cruising with Hugh and Cathie in exotic locations, often wondering, privately, how much longer their journey together could be sustained. When Cathie injured herself in Singapore they were forced to spend months ashore in a village on the Malaysian island of Langkawi while she recuperated. Then, miserably, it was concluded Cathie could not continue. She was flown back to Britain, and Hugh set out to bring Tacit home. The now ageing boat took a heavy battering struggling into head winds in the Red Sea, and, after coming close to foundering, limped into an Egyptian marina. Hugh had neither the time nor money to care for Tacit. She was sold and he flew back to Lymington, Cathie and their new life.

 

“ Well-meaning people constantly asked me whether I missed sailing and our old life. I always told them I didn’t. The truth is that it almost killed me --- to begin with. But then” says Hugh, “I learned not to want the old life back. I came almost to believe it. I certainly believed it enough to be able to live with myself, Cathie, and our new roles in equanimity and even enjoyment. Not wanting what you can’t have is a trick of the trade. It doesn’t come naturally, but it’s worth learning.”

 

Learning to live with reaction to his book may be the next challenge. Hugh says he thinks about stopping publication for fear the book may do more harm than good. “But if just one other carer should let me know after reading the book that they discovered they were part of a valuable community, and doing something every bit as worthwhile as what they were doing before, then I’ll feel it was worth doing”.

 

 And with that, Hugh loads the wheelchair and Cathie into the car and we head for the yacht club overlooking the Lymington River, where, over a pint or two of bitter, we watch, without bitterness, their old life sail by.