Caroline D'Souza

  That's a heck of a lot of money, you might think.
   But then, polio is a hell of a disease. It is
  debilitating, crippling. It traumatises you for a very, very long time.

I should know. I am polio-afflicted. Have been since 1956.

I was a normal, healthy and hyperactive nine-year-old then. No one could have imagined that the virus would strike down some 85 children from our area in just five days.

Doctors were totally unprepared for the disease, which struck in varying ways. There was no specific pattern. And they had no strategy to counter it.

Each one experimented with a combination of very expensive injections and antibiotics. Infantile poliomyelitis was the name it went by, but it was shrouded in obscurity, ignorance and misconceptions.

People hesitated to visit us victims because they were scared of carrying the germs home to their children. Terror filled the minds of parents, especially after a number of children died.

My doctor conveyed to my mother the pessimistic diagnosis: "Your daughter will never be able to stand."

"You are not God," I remember my mother telling him fiercely. "I will see that she walks!"

And she did. Had it not been for her faith and untiring efforts, who knows what my state would have been.

Yes, the government is doing a great deal to contain polio. But I sincerely wish that people knew about the late effects of polio or the Post Polio Syndrome, as the condition is commonly known.

I wish there were support groups, like they have in foreign countries, to make PPS sufferers know that they are not alone. I wish the patients knew what to expect instead of feeling confused and scared.

PPS, as I learnt, affects polio victims some 30 years after the initial acute attack. You find you cannot do the things you could easily do before. Like boarding buses or getting down. You find you cannot lift your feet easily, that you lose your balance.

I found it necessary to use a walking stick. A friend I met in Australia told me I could be in the PPS stage. I was given literature about the dos and don'ts. Later, I got more literature from the WHO.

I met a few PPS sufferers and exchanged notes. Some had to leave their jobs because of their progressively weakening muscles and nerves. It is a very frightening feeling. What's happening, you ask yourself. You slow down gradually. You cannot stand for long.

You need reassurance from an authority. You go to an orthopaedic surgeon. He laughs at you and say you are "imagining" things! There is still such lack of knowledge among even medical professionals.

I showed my doctor the books and literature I had. He found those "interesting". That's not very comforting to one who is worried, confused, totally frightened about the days ahead. You don't know whether you will be able to withstand the strain of working. And if you need to work from sheer necessity it becomes more scary.

What a PPS person needs to do is manage his energy. You will tire easily. Accept that. You have to stretch out your energy account. Relax when you are tired. Use energy saving equipment as far as possible. Use a highchair while working in the kitchen or while bathing.

If you are overweight you need to reduce. Your muscles are weak as it is, don't punish them further. Exercise is a must to keep up muscle strength. If you can't stand and exercise try sitting and exercising your limbs. You may suffer from cramps or muscle twitching. You may need to go to an orthopaedic surgeon for medication, especially for nerve pain. You could approach a dietician too.

You could get depressed very easily. Don't go to pieces; tell yourself you are only readjusting your lifestyle. Go to a counsellor if need be.

Travelling is the toughest part for a working post-polio person. It can be very expensive if you can't use public transport. Yes, our government offers conveyance allowance to the handicapped -- a measly Rs 100 a month! I spend Rs 850 every month to go to work. And that's a big chunk of my salary. I wonder how others manage.

I truly hope that the government would do something to make our lives easier. I hope, instead of concentrating only on immunisation, something would be done for the victims: guidance, help centres...

Life is a big challenge for the physically challenged. Can we expect a better deal someday not too far in the future?

Caroline D'Souza teaches in a school in Calangute, Goa.

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