BY WENDY HUGHES

First photo taken after my mother went blind December 1958

Anyone suffering from a long term medical condition will know just how precarious life can be. With the best plans in the world, your week can be disrupted at the toss of a coin. This week was one of those weeks for me. Towards the end of last week I was feeling better, so made plans to meet up with friends I haven’t seen for ages, visit an exhibition in Worthing and maybe a spot of shopping as well as keeping one my many hospital appointments, that become part of the fabric of coping with a condition.

My first plan went well.  It was a rare glorious sunny day and my husband drove me to Bognor to have a long natter and a fish and chip lunch with a friend, followed by a walk along the promenade, then sitting to chat, and putting the world to rights. I had a super day and felt well enough to take the bus back to my village for my husband to pick me up at the bus stop.

Glorious Bognor

The following day I had an appointment at the hospital, which ended up with me having another appointment and a procedure, resulting in turning the rest of my week on its head and having to cancel appointments and I was so looking forward to. Such is the nature of any chronic condition.

However there were two positives that came out of the week.  The first I was able to attend my hydrotherapy session and the second, having many hours to wait around and always with a notebook at hand I was able to make some notes on my new novel, which I began a couple of weeks ago. It is a book that I have thought long about writing. It is a fictionalised story of my mother, who lost my father when I was five and went totally blind when I was seven.  We now know it was due to the genetic condition that I inherited, but in those days 1956, the condition had not even been defined and very little was known about the science of genetics.

When my mother returned home from hospital totally blind, the authorities of the day, decided I would be fostered and later adopted by a family.  As for my mother she would go into a institution for the blind.  We can all imagine how she must have felt, first losing her husband, then her sight and now facing the prospect of losing her only child and her home, everything she held dear to her.

fish and chips

Devastated, she pleaded for us to stay together, but at first they were adamant, no blind person could look after themselves, and a child, but eventually after much discussion and arguing they granted her wish. We could stay together for a month, then she would have a deputation from the board of health and a decision would be made about out future. I was only seven, but I can recall now she struggled to do things around the house.  I was kept home from school that day and was quizzed about how we were managing, but my mother finally won them over when she made tea, unaided, and brought out a tray of homemade scones, and a delicious fruit cake, both made on an old fashioned kitchen range that morning.

Thankfully visually impaired people are treated far better today and I would like to think that my mother tenacity went a long way to pave the way for better treatment with problems.  Next week I shall tell you a little more about her remarkable story.

 

About Wendy Hughes

Wendy turned to writing, in 1989, when ill-health and poor vision forced her into early medical retirement. Since then she has published 26 nonfiction books, and over 2000 articles. Her work has appeared in magazines as diverse as The Lady, Funeral Service Journal, On the Road, 3rd Stone, Celtic Connections, Best of British, and Guiding magazine. She has a column in an America/Welsh newspaper for ex-pats on old traditions and customs in Wales. Her books include many on her native Wales, Anglesey Past and Present, The Story of Brecknock, Brecon, a pictorial History of the Town, Carmarthen, a History and Celebration and Tales of Old Glamorgan, and a book on Walton on Thames in the Images of England series, a company history and two books on the charity Hope Romania. She has also co-authored two story/activity books for children. Her latest books are: Haunted Worthing published in October 2010, a new colour edition of The Story of Pembrokeshire published in March 2011, and Shipwrecks of Sussex in June 2011 and Not a Guide to Worthing in 2014. She is working on a book entitled A-Z of Curious Sussex which will be published in 2016 Wendy also works with clients to bring their work up to publishable standard and is currently working on an autobiography with a lady that was married to a very famous 1940’s travel writer. Wendy has spent many years campaigning and writing on behalf of people affected by Stickler Syndrome, a progressive genetic connective tissue disorder from which she herself suffers. She founded the Stickler Syndrome Support Group and raises awareness of the condition amongst the medical profession, and produces the group’s literature, and has written the only book on the condition, Stickler The Elusive Syndrome, and has also contributed to a DVD on the condition, Stickler syndrome: Learning the Facts. She has also writing three novels, Sanctimonious Sin, a three generation saga set in Wales at the turn of the century, Power That Heal set in the Neolithic period entitled Powers that Heal, and a semi biographical book entitled New Beginnings which deals with two generations coping with blindness and a genetic condition. She has also had a handful of short stories published, and in her spare time is working on several at the moment. She also gives talks on a variety of subjects including Writing and Placing Articles, Writing Local History, Writing as Therapy, Writing your first novel, etc, and runs workshops on the craft of writing – both fiction and non-fiction. She is a member of the Society of Women Writers and Journalists, and a member of the Society of Authors.