2. Try for a cure, by all means, but don’t postpone rehab.
Should I try for a cure?
This question is probably the upper-most in the minds of many facing
gradual vision loss. All the family members, friends, the most distant
relatives and even casual acquaintances over a train journey would wax
poetry over magical cures from masters of alternative medicines.
Now, don’t get me wrong on the alternative medicines. I believe the
host of them –such as the Indian systems of Ayur Veda and Siddha—are
an excellent ones for a host of ailments like asthma. But the extent
to which they work on genetically impacted conditions like Retinitis
Pigmentoza largely remain in the unknown zone.
Hope of cure is not entirely lost as several medical research groups
across the world are working on cures, which, given the complexities
of the region of the eye we’re talking about, are complex and
consuming more money and time than any single organisation can afford.
The point that I’d like to emphasise here is about rehabilitation. No,
you don’t have to give up your hope of a cure and the ability to see
clearly one day, but that can co-exist with adjusting yourself to the
sight loss and improving your quality of life.
What could come in the way of people accepting their blinding
condition is shame.
Learning to use a white cane to move around, organising things for
your daily use at home and even learning to perform tasks like cooking
are part of the rehabilitation programmes offered around the world.
Most who’re going blind have a problem in using the white cane for
mobility largely because they are ashamed of holding one. It comes as
a severe blow to their self-image. Believe me, that’s how it felt to
me when I was offered the cane at a training centre in my hometown of
‘Why should I advertise my blindness?’ was the question I asked my
mobility instructor when she handed me the cane on a hot afternoon at
the YMCA campus where the training centre functioned.
The same thought echoes in the minds of many experiencing gradual
vision loss. And, of course, the families don’t help their cause. They
often say why they should learn to be on their own when people at home
are ready to escort them outside, cook and clean for them. Though I’m
not very sure, such a mind-set seems very common in Indian families.
What people fail to understand is that rehabilitation, comprising of
all the things that I mentioned (and probably a couple of other things
like personality development and grooming taught in some
institutions), greatly boosts the self-confidence of the individual
going blind and helps reverse the feeling of inadequacy about
themselves that often accompanies sight loss.
It’s also sad to see that many –even the most educated and savvy –
fail to be aware of the range of technology available to someone who’s
blind that allows them to perform miracles.
Say for instance, the Oober app (which is very accessible on iPhones)
allows them to book their own ride and move around without help. I’ve
done it plenty of times myself.
My question to those who think rehabilitation would somehow shift the
focus from the cure is this: why should you think rehab and cure are
diametrically opposite? Why can’t you pursue rehab to improve your
quality of life, financial independence (that comes as a result of
your ability to perform with distinction at work place) and a
well-rounded life (with pursuit of your hobbies) has to be somehow an
inferior ambition than cure?
Consider these questions, and think again.
(this series would continue)