Everyday heroines

Anne Abayasekara is awed and inspired by the courage of Multiple Sclerosis patients

It was my admiration for two MS (Multiple Sclerosis) patients I knew personally that motivated me to attend a general meeting of the MS Association of Sri Lanka a few weeks ago. The daughter of my neighbour, a young wife and mother of two, Shirani Obeyesekera was diagnosed with MS in 1982 at age 29, when her children were 7 and 3 years old. The calm courage with which she faced it, her husband’s acceptance and loving support and her invariably cheerful manner, was something at which we marvelled.

After all these years, Shirani had been wonderfully encouraged to read in The Sunday Times of February 11 about a fellow sufferer from MS, Dr. Hitaishi Weerakoon, who had formed a “Multiple Sclerosis Association of Lanka”. She had called Dr. Weerakoon and spoken with her and when she informed me that she intended attending the forthcoming meeting of the association, I felt moved to ask whether I could go with her. Hitaishi Weerakoon (nee Perera), also happens to be someone I have known since she was a schoolgirl. Her caring nature seemed to make her an ideal doctor. She married a doctor and they had two children when Hitashi too was struck down with MS. It seemed a cruel blow that eventually she had to give up practising as a doctor.

However, Hitaishi too is one who, although she may have been ‘down’ at times, isn’t by any means ‘out’! As with Shirani, all who know her marvel at her courage and determination. I shouldn’t have felt any surprise in learning that she had taken the initiative to start an association to give much-needed support to MS patients.

Stepping into the hall, I struck lucky a third time, for I found myself seated next to a vivacious classmate of my eldest daughter, Loulou Saleem (nee Thassim) who didn’t look as if there was anything wrong with her. But it’s 27 years now since she learned that she had MS. Loulou lives with her husband and family in New York, but comes home to visit her mother and other relatives every year.

Talking with her before the meeting got underway, I found Loulou to be as ‘bubbly’ as ever. “You don’t die of MS,” she told me, “You have to learn to live with it. And one essential for that is a sense of humour. Every day you get up thinking of MS. You find out you suddenly can’t do the things that other people take for granted, like putting on your earrings! And I had to give up wearing the 3-inch heels I had always worn. The other big bugbear is the lack of bladder control – you quickly learn to find out what and where toilet facilities are available when you’re going anywhere!”

During the course of the meeting, Loulou was among those who were invited by Hitaishi to share their experiences with the group. “Life came to a halt for me when I first learned I had Multiple Sclerosis,” she said. “I ran back home to Sri Lanka. I went through all the stages that others must also go through – mourning for what I had lost, disbelief, anger, major depression. Then I took hold of myself. And because I am a firm believer in the power of prayer, I held on to that. I knew I had to make a go of my life for the sake of my two children. I forced myself to go back to New York and complete my law studies. Fatigue is the No.1 enemy. Then an American friend introduced me to a drink called ‘Noni juice’ – made from a Tahitian fruit. It made such a big difference to me.

“My husband who is a doctor, also gives me B-12 injections. I am glad to tell you that Noni juice is now available here.”

Rosemary Dharmaratne, a teacher and the only younger person present with MS, spoke very positively of coming to terms with the disease and finding a good quality of life despite it. In her case too, there was no visible evidence of illness and it was only her stating that she too was a patient that identified her as one. She recommended what had proved of great value to her – Buddhist meditation – and she had thoughtfully brought along a number of CDs on meditation, which she freely distributed to all who wished to have them.

These women quietly face up to the challenges their illness poses, making every effort to avoid being a burden to their families. I’ve no doubt that there are scores of others like them around the country, coping bravely and cheerfully with similar illnesses and handicaps, and seeking no applause. They are everyday heroines who fully deserve our recognition.

Perhaps Loulou’s daughter, who asked Hitaishi for permission to speak, should be allowed the last word. She said: “I am 34 now, the age at which my mother was diagnosed as having MS. For years, she protected my brother and me from the reality of what this meant.

“She amazes me. She travels from the USA to Sri Lanka and back again by herself. She leads a full life. She focuses on making others happy. That’s my mother and I’m proud to be her daughter.”