In 1986, early
morning stiffness and pain prompted me to take a blood test which confirmed
that I had aggressive Rheumatoid arthritis, a disease I knew to be lifelong,
extremely painful, degenerative and debilitating, but not terminal. The chances
were that I could be bedridden or crippled, and to date no cure has been found.
Aged 36 and at the peak of my career at the time, on a prestigious overseas
posting with Bank of Baroda at their New York branch, my life was moving along
in top gear, when its course suddenly changed. I went through a period of
hopelessness. I was inclined to clutch at any straw that promised some relief,
but that left me more confused and more depressed too. Towards the end of my
term, I requested that I be sent back to India where the climate was warmer
and I had family to give me support.
I returned to
Bangalore at Christmastime 1987, and tried indigenous treatments in a warmer
climate, but over a period of time, it began to sink in that I had to live with
this disease that was slowly nibbling at my mobility and ability to be self
dependent. I was therefore faced with two choices. I could either cry over what
I had lost or take stock of what I could still do. An excellent attitude to
have for starters, but how much easier said than done! How could I smile when
my body was throbbing with pain, or be nice to people who did not even try to
understand what I was going through? Advice poured in on how to handle my
condition and it irritated me. Patience had never been one of my virtues and
now it was thrust on me because I had to be dependent on others. To put it
mildly, the situation seemed bleak...
After a while I
decided to try a more positive approach and acceptance of my fate which certainly
did make life easier to bear. With the support system I had in my family and
colleagues, especially my bosses, I carried on working and slowly came to grips
with limitations that had progressively started to set in. I drove a specially
modified car till 1999, but in 1995 I quit the bank after twenty five years,
knowing I could not do justice to the expectations in my position, and neither
wanting to sit unnoticed in a corner office somewhere just to earn a living. So
I quit fifteen years ahead of retirement, not quite knowing what the future
would bring. I only knew that I wanted to start a support organization to reach
out to other arthritis sufferers and a month later Arthritis Foundation (India)
was born. Although arthritis has forced me to give up many of my favourite
pursuits like going for walks, swimming and sports, and travelling afar, I look
back on the many experiences I’ve had in these areas, and remain ever grateful
for them. I have seen a fair amount of the world, and I will not say ‘die’ to travelling
again. Even if be on short trips within
India. I made it to the Mumbai Marathon in 2011. What a thrill! Also to Goa on
holiday. With regular physiotherapy and a balanced lifestyle I keep fairly well
and active enough to be involved with people on a social basis. My recent focus
has broadened to the field of disability awareness and the glaring need of the
disabled in our country to have an improved quality of life. I’ve ‘run’ in the
wheelchair category of the annual Bangalore marathon to make a statement that
‘where there is a will there is a way’ and to collect funds for the
organization I represent – The Association of People with Disability. In 2012 I
came out the highest fund raiser with Rs.10 lakhs collected in the women’s Care
Champion category. In 2011 and 2012 I’ve organized and led the Global Walk for
India’s Missing Girls in Bangalore in my wheelchair, against female
foeticide/infanticide as part of www.petalsinthedust.com
campaign. One has to only get beyond oneself and one’s miseries to find a world
full of opportunities for outreach. Maybe not the exciting glittering kind you imagined
as being a mark of success, but from personal experience I
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declare that this is
far beyond what the world at large deems success and one need not fade into
oblivion but rather be an example and icon. Initially I used to think, “What’s
the use of living like this? You cannot even manage to pick up a glass of water
sometimes, or bathe, dress and groom yourself”. Fortunately, there is the other
side of me which replies, “Nothing doing, you’re a fighter, you’re a brave
person. You still have a lot of talent you can use, not only for yourself, but
for others too!” My mother was a shining example of this. She kept herself going
the best she could upto age eighty six with thirty five years of RA behind her,
and twenty five of them mostly housebound. ‘Armchair ministry’ is what I classified
as her special talent. She attracted visitors all the time, making them feel
welcome, whatever be the inconvenience or the pain she was suffering. She was a
lover of the garden, interested in music and all that went on in our lives. She
touched the lives of so, so many, with her special letters, written with stiff,
gnarled fingers till the very end. If she could do so much sitting in one
place, how much more can I with still a fair degree of mobility and a computer
at hand.
When at times my
pain is worse, I reach out to God. This is something that has come out very
strong in me – a kind of total surrender to the power of God in my life as I
know that there is nothing we can do without His help. And help He does! It is
not that the pain suddenly vanishes or the problem goes away, but I’d find
later that someone had touched my life in some way that day, which would have
made my burden easier to bear. It might have been just a visitor or phone call,
a card, letter or email to say hello, or maybe one conveying an appreciation of
something small I had done for someone, or a compliment on an article I had
written. At times of course, these do not happen and everything seems to go
wrong. I do fret and fume initially, then realize it’s not solving my problem
and all will pass if I remain quiet. Perhaps a much needed forced ‘cooling off’
from overdoing things and this was actually a sign of another miracle, albeit in
its own way…
All said and
done, I count myself as very fortunate in the support I receive from family and
friends who do not look on my disability as a hindrance to including me in
their activities and outings. I still go for parties, picnics, concerts and to
restaurants, because of the physical help, kindness and companionship that
people extend to me. It is tough sometimes, watching them so easily do tasks
that are no more possible for me to do, but it sure beats sitting around at
home and moping. Of course often, they have to do the dirty work like clearing
up and washing and cleaning, while I have the luxury of sitting just watching
because I ‘cannot’ do! My doctors and physiotherapists, now all close friends
of mine, are further sources of strength and support, encouraging me to think
positively and to do as much as I can. My erstwhile employer bank continues to
reach out to me as well. All in all, it’s only a positive attitude to take
illness in your stride and a look around you to find so many worse off, who you
can minister to, that can continue to make life meaningful and change you from
‘Whiner to Winner’!
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