5 Feb 2012

In Search of a Miracle

When I was first diagnosed with Retinitis Pigmentosa at the age of sixteen, it was almost as if the eye specialists had delivered a death sentence to my family.  Your daughter is going to go blind. We don’t hold much hope for her future. There is nothing more we can do for her. No support was offered – we were on our own. The door of possibility shut firmly in front of us. Surely there was something we could do? A short time later, my father stumbled across an article in the English Sunday Observer Magazine that changed our lives for ever…a remarkable treatment offering renewed hope, a cure!

For a fuller account I urge the reader to read my father’s indepth posts on his blog with the link given after this story. This particular excerpt is plucked from Chapter 3 of my draft autobiography. As bizarre as the situation may seem now, in hindsight, I hope people can find it in their hearts to understand – chasing a cure through bee venom therapy seemed the only tangible course of action available to us under very strained circumstances.

Setting the scene: I am seventeen. My father has flown over to England with me to reside temporarily in a large house, sharing rooms with other hopeful patients from around the world. Monday to Friday, we are given bee sting treatment by the ancient therapist, Mrs Julia Owen. It was often easier to bear the heat of the stings than to go through the fire of her fanatical interrogations. After a couple of months, my mother became seriously ill so my father flew back to Australia to be by her side in her dying weeks. My dear mother insisted I remain to give the treatment more time to work just in case…. She prayed every day to  her Omnipotent God to grant her daughter a miracle.

**

With my father now back in Australia, two new patients came to take up residence in the big white house. I welcomed the presence of the middle-aged Yorkshire sisters as for quite some time there had only been Frau Greta and myself rattling around in the empty house. On their first day of bee stings, Mrs Owen informed them that the treatment would take a few weeks. The cost was not disclosed but the Yorkshire sisters were only too keen to give the painful therapy a go. And, so it was: Mrs Owen’s new guinea pigs stayed.
Four females in the house and we all got on beautifully, sharing household duties and lots of cups of tea. I was so grateful for their considerate ways but poor Frau Greta now spent most of her idle time locked away upstairs in her room pining for home. I did my best  to converse with her as much as my newly acquired German would allow as we shared breakfast and, on a good day, she cooked Austrian treats for afternoon tea.
During a conversation with one of the Yorkshire sisters, I was surprised to hear her express her sadness, the tragedy for humanity when Mrs Owen dies. Really? Yes, her bee sting secrets would die out with her. That was tragic, wasn’t it? But these were the new kids on the block, I thought. Give them time. A few more weeks of  Mrs Owen’s relentless bullying would most probably change her mind. It had for me.
An issue arising for the four of us was house keys. Mrs Owen refused to give us any more keys, since there were already two in circulation. When the Yorkshire sisters pleaded for another key, she simply refused. End of story. Her usual angle of attack. I knew how difficult Mrs Owen could be, the sisters would soon learn. We felt it was an attempt to keep one of us trapped in the house at all times so we just had to outsmart the fox. A key was placed in a flower pot by the front door until I had two new keys made by a locksmith.
The problem with Mrs Owen was coping with her fanatical habit of changing the truth to suit herself. She was the one who decided how improved one’s condition was becoming and if one did not agree, her patient was lying – so dogged was her denial.
Mrs Owen delivered her secret stings of pleasure daily to the four of us as we sat quietly taking our turns like well trained mice on her treadmill. There was nothing sweeter than the sound of the front door closing and the tyres of her chauffeured car backing out of the gravel driveway. The room fell blissfully silent – apart from soft, deep groans. Two hours passed as we coped with the throbs of invading venom pulsing in our temples. No chatting, only breathing, until the magical moment of release. The stings were removed gently with tweezers – my job, happy to set my inmates free. In spite of the swellings under the skin forming on already swollen glands and joints, we remained cheerful, proceeding to put on the kettle and to resume life as normal. Bizarre – but true. 
We could now enjoy listening to the Wimbledon tennis tournament on TV. That year, 1978, top seeds, Bjorn Borg (my Swedish hero) versus Jimmy Connors, the bad-tempered American who often threw his racquet in childish tantrums. Not that any of us could see the court properly, let alone the fast bouncing tennis balls flying across the court. But I sat a few inches to one side of the TV adding my commentary to the crowd's reactions which created great excitement. We clapped and cursed on cue. My hero won the men’s final among our blind squeals of delight.
A few days later, Mrs Owen decided to terminate one of the sister’s treatments because there was no improvement to her eyes. Strange? Naturally, I wondered why on earth I was still here. Then Frau Greta received her marching orders – after all these months without a sign of improvement? The night before Frau Greta flew home to Austria, our kind friend Bill, shouted us all drinks at the local pub in celebration of her happy departure. Frau Greta was overjoyed, blushing with excitement from all the goodwill, and the champagne. The following day, we hugged and cried in broken English and German, knowing we would never see each other again. With teary eyes we expressed our mutual gratitude: for me, her gift of friendship and her gourmet cuisine. Frau Greta expressed her sincere thanks for my attempts at speaking in her native tongue.
With a final warm bear-hug, we spoke one last - Danke schön……Bitte schön.

©  Maribel Steel 2012
***

For further background reading please go to:
http://briansteel.wordpress.com/2012/01/08/julia-owen-retinitis-pigmentosa-and-the-media-part-3/

I also strongly recommend the book: Ordinary Daylight. Portrait of an Artist Going Blind
by Andrew Potok. He writes of his personal experiences as one of Mrs Owen’s patients, shedding more light on the bizarre and true.   

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Happy reading.

1 comment:

gypsyheart said...

dear bel, i find this piece very moving and quite shocking as well. It makes me despair at life's injustices - great work - keep going xxx Bee