Saturday, 30 January 2010


She was 22 when I met her but she was “in shape no bigger than an agate-stone on the forefinger of an alderman.” If she had been able to straighten her pain-wracked body she would not have been a yard tall. She weighed 40 pounds - and she is the only giant I ever knew.

Her name was Rebecca Osborne. She suffered from a rare form of Werdnig Hoffmann syndrome, a genetic disorder that causes wasting of the muscles. She was almost totally paralysed, her head had to be balanced for her and she had to be turned every hour at night by her loving mother Jenny - angels ran in the family - or she would have choked to death.

She knew the value of life and treasured it. She persuaded her parents to join the Sealed Knot (her father loved dressing up) “so they won't be lonely after I die.”

She was one of the wisest people I have met, and amongst the most thoughtful..My wife wondered whether it mattered when she gave so much love that she could never marry or have children. You could ask her questions like that and get a thoughtful answer.

She said:”Celia, I cannot let it. I have friends, very special friends. Some people have no friends and there is more to life than sex. I have got three dogs and a cat. Who wants men when you can have a dog?”

She had been too ill to go to school. What little education she had as a child came from supply teachers who visited her home. One advised her to find something to pass the time. She was incensed. She told me: “I thought, is this it? Pass the time? Until what? Till I die? Is this all I am here for? It's so futile, So many people have no dream, no vision, nothing to work for. I don't envy others because I know where I am going and I am going to get there and that is enough for me.”

Her father Brian made her a study to her own design in an upstairs room of their home in Port Dinorwic, near Bangor, North Wales. He put in a long window so she could look out at the prize-winning garden her mother created for her. He said: “We have tried to give her a stable home life and keep her occupied but her brain is always ahead of us. She has never allowed her body to rule her life but her ideas always outstrip her physical abilities.”

Her mother said: “She is a marvellous person. So kind and thoughtful. It is a tragedy she is as she is. She would be a high flier.”

Would be? Like the lark she perpetually ascended.

She enrolled for' A' level English tuition at Bangor Technical College. She couldn't go to the college so the college and five students came to her. She began to write, including a short story about a holiday romance, and before long a publisher agreed to publish it in a collection. She made jewellery and greeting cards; she did intricate lace making;sewed miniature tapestries on tiny canvases and tended a miniature garden in a wheelbarrow. It contained rare alpines and miniature specimens of jasmine,clematis, bamboo and oxalis. She kept a large proprietorial cat who lived on her wheelchair while her three dogs, a long haired chihuahua, a white papillon and a Pomeranian, rode on the step.

She was chiefly occupied making exquisite miniature rooms in boxes. She got the idea after seeing one in a catalogue. Her boxes contain farmhouse kitchens, bedrooms, sitting rooms. I have one before my as I write. It is the kitchen of my home on Anglesey. It reflects my interests. There are books and miniature newspapers, a tape recorder, a fishing rod and riding boots, a dog, and a bottle and glass. Knowing my views on Christmas, she put in a Christmas tree as a sly joke.
She did Trollope's Barchester books for 'A' level and made a miniature of Warden Mr Harding's study. On the top of the tiny wardrobe is a cleric's round hat.

She made all the furniture for her rooms but never included people. Yet you could always sense the sort of person who would use them. She held frequent exhibitions. Her first won the North Wales Arts Association artist's development award.

Anthony Andrews gave her 'Aloysius', the teddy bear he carried on Brideshead Revisited, and she had the world's largest collection of hearts, given to her by everyone she ever met. She said she kept ours on her mantelpiece. It made us very proud.

She was the only sufferer from the disease who lived beyond childhood. She told me:“I am slightly beyond my sell by date but for me I am not disabled in any way. I am not disabled for my work or for my writing.”

Death caught up with her too soon. She gave him a run for his money but I for one will never forgive him. I think of her as the slave girl, of whom Martial wrote: “Lie lightly on her turf and dew, She put so little weight on you.”

Dean Swift was much concerned about death in his elegaic poem “The Time Is Come”. I prefer his more acerbic attitude in his verses “ On the Death of Dean Swift” and a poem which is less well known.

Well from commerce and the weary world retired,
Unmoved by fame, nor by ambition fired,
Calmly I wait the call of Charon's boat,
Still drinking like a fish,
Still f,,,,,g like a goat.

His advice to old men is not without merit

Not to keep young Company unless they really desire it.
Not to be peevish or morose, or suspicious.
Not to scorn present Ways, or Wits, or Fashions, or Men, or War, &c.
Not to be fond of Children, or let them come near me hardly.
Not to tell the same story over and over to the same People.
Not to be covetous.
Not to neglect decency, or cleenlyness, for fear of falling into Nastyness.
Not to be over severe with young People, but give Allowances for their youthfull follyes and weaknesses.
Not to be influenced by, or give ear to knavish tatling servants, or others.
Not to be too free of advise, nor trouble any but those that desire it.
To desire some good Friends to inform me wch of these Resolutions I break, or neglect, and wherein; and reform accordingly.
Not to talk much, nor of my self.
Not to boast of my former beauty, or strength, or favor with Ladyes, &c.
Not to hearken to Flatteryes, nor conceive I can be beloved by a young woman,
Not to marry a young Woman
Not to be positive or opiniative.
Not to sett up for observing all these Rules; for fear I should observe none.