“Scleroderma is an uncommon condition that results in hard, thickened areas of skin and sometimes problems with internal organs and blood vessels.”( Wikipedia)
My father’s letters to Gita Sarabhai are an aide memoir to my chronology and more. In a letter dated: 3rd August 1948, six months after my arrival in Paris, his suggests they collaborate on a book on Meera, the great mystic poet of the 16th century and reading it I reflect on my lost name and his life long project which he would complete two years before his death: “ Songs of Meera, Lyrics in Ecstasy” . The letter ends with:
‘ The children are back from school. We are anxious about Leena who has some skin trouble underneath the eye. The specialist in Zurich who does not know the cause, says it is a bad thing and recommends penicillin for a month every three hours, and X rays too. This is hard because it is no certain cure. …
Leena is, of course, happy as a lark and bright as sunshine
The news has darkened our mood but we feel simpler cures than the allopath recommends can be had.’
I had contracted an ‘incurable’ disease called Scleroderma. One theory suggested it could result from severe shock, which was then attributed to the ‘mad dog bite’ and the story became:- ‘Poor Leena, she was bitten by a mad dog when she was three and then later she got this terrible skin disease for which no one knew the cause or the cure’
I remembered that dog, a mangy stray who drifted into our garden whilst I was sitting on the steps of our house in Model Town and we played with my little red shoe. I have no memory of a bite or shock from playmate dog -but the story stuck through constant repetition and I couldn’t shift it.
Why was the dog a shock? Why not the fourteen painful injections in my stomach? Or the English boarding school in Mussoorie where I was punished relentlessly. Or could something have happened at the school in Switzerland where the condition first erupted?
And what happened to the poor dog?
A hotel room in bleak post war Paris was not deemed the best place children. My father read in The Times Educational Supplement of an English school in the Swiss mountains run by a Mr Gissing, a descendent of the Writer, George Gissing, and so we were despatched to Salvan in the Swiss Alps to avail of the healthy mountain air. Why did the scleroderma manifest there?
My mother told me of that worrying time. The mysterious illness, its fatal/terminal prognosis, that UNESCO insurance didn’t cover me. ‘You had these hard white patches on the right side of your face, they said this would slowly spread, the skin would become like leather, unable to breathe and leading to slow paralysis. I took you to Switzerland but all the hospitals were full.’
It was my good fortune that the hospitals being full rescued me from the possibility of 240 doses of Penicillin over a month and also, that my parents, being unconventional and open minded, searched for ‘simpler cures’ which led to the Bircher Benner Clinic in Zurich.
Muesli is grated apple folded into soaked oats, with a little lemon and condensed milk and topped with ground hazelnuts …
Dr Bircher Benner was the inventor of Muesli. He believed in natural cures, closeness to nature and a diet of raw fruit, vegetables and nuts. The clinic opened its doors to help the afflicted little six year old, so my mother deposited me there entrusting me into their care.
The clinic was set in large grounds with woods and mountains all around. I was accommodated in the Privaat Haus where the director lived and a special secret buzzer opened the front door. I liked that. Inside it was very clean and very quiet and I soon settled in with the Swiss expectations, would close the door softly and tiptoed through the hall and up the stairs to my room on the first floor.
It was a nice airy room with windows on two walls, lots of light and views of the grounds below and the trees and mountains beyond. In between treatments I would have lessons there, was taught the violin and spoke Swiss-German. It was a happy time. People were kind to me. I was the only child in the clinic and basked in the attention. I enjoyed showing off and was a bit of a star. Would visit the people, pick flowers for them, sing songs.
And I had some special friends. Three, I particularily remember and much later would learn the identity of some. There was Hans, to whom I spoke in German, we would go for walks, he would tell me of his grandchildren Klaus and Brigitta, who became my imaginary playmates.
There were an Indian family, always happy to see me and who spoke my name – Lee-naah with a special loving lilt. Much later, I would learn they were the elder Sarabhais, parents of my namesake Leena, and the Gita of my father’s letters. Their youngest daughter, Gira, who was there with them told me years later: ‘Papa loved you. It made him very sad to see you there all on your own.’
My other friend was Sir Stafford Cripps, also staying at the Clinic. I used to have a photograph with him smiling at a little girl with thick black plaits and a scar under her eye.
My meals were taken in the main dining hall. And each meal would start with a bowl of Muesli – sweet and tangy with a creamy texture. I loved it. I would always start by eating the crunchy hazelnut topping. If I think of it I can almost taste it!.
A high point was my father’s visit. I remember it so clearly/vividly.
We are walking down the road together. He is holding my hand. We are going to the pictures to see ‘Song of the South’.
‘I can whistle now daddy.’ I say, ‘ l’ll show you.’
But I cant. My smile is so big I can’t close my mouth into a whistling shape. I keep trying but it keeps springing back into a wide smile.
I look up at my father and he looks at me. He smiles. And the thought and feeling come as words in my head: “ Gosh! This man loves me”.
And I smile to myself as that nugget of secret certainty settles in my heart where it remains to this day.
I have a memento of that day. My father had arranged to have my photograph taken. A little girl with a secret smile, two thick plaits in crisp ribbons, wearing a grey cardigan with an embroidered badge of the Swiss flag, gentians and edelweiss. The scar under my eye has been airbrushed away.
The story goes that when my father left, I asked my friend Sir Stafford Cripps, ‘Have you got a daddy?’
When he said he didn’t, I supposedly comforted him, saying ‘ Never mind, you’ve got your lady.’
And it was the ‘lady’ who told my mother that story, when, at the end of my stay in the clinic she came to fetch me.
For me, the ‘simpler cure’ of the Clinic worked, and after some nine months of raw food, pine needle essence hip baths and plenty of clean mountain air, the scleroderma was reversed, the hardened skin softened but the scars remained, particularly a large patch under my right eye looking rather like a black eye.
They wanted to give me the violin as a present. I didn’t want it. My mother tried to persuade me: a present, a nice violin, worth money. But I was adamant, although I had to resort to a tantrum to make myself heard. And the good people in the Privaat Haus might have wondered what had happened to their quiet polite little Swiss girl.
For years, I felt marred by the scars which prevented me from getting contact lenses and were best hidden behind spectacles, but when they would elicit a question I would recount the story of the scleroderma and muesli.
The Clinic closed. Muesli thrived. Dr Bircher Benner was forgotten. Then, some years ago, picking up a take away breakfast with a friend to picnic on Hampstead Heath, ‘What are you having?’ I asked him, looking at the croissants.
‘I’m having a busher pot.’ He replied
‘What’s that?’ I said, looking at the cinnamon rolls
‘Its soaked oats with apple and ….’
I grabbed at the container in his hand and exclaimed ‘It says Bircher. After Dr Bircher Benner who invented Muesli!’
I was personally thrilled that Dr Bircher Benner should be remembered and as we walked along I told him of my time there.
I took off my glasses to reveal the black eye.
‘Its not that bad.’ He said.
‘ It is what it is,’ I replied. ‘ I see it now as a scar of life – of a victory from a battle won.’
’ What was your objection to the violin?’ he asked as we resumed our walk after the picnic.
‘Well, the story I spun was something about an aversion to violin lessons. But now, I don’t know. ‘ I shake my head. ‘I wonder if it wasn’t something to do with my mother? Of not being listened to? Being left behind? I’m not sure.’