56th recipient of help: His brains do not work, but he can feel pain.

56 Mrs Kapse2

56th recipients of help: “His brains do not work, he cannot even express what he feels, but he can feel pain ….”

Vikas Ramdas Kapse (13), and Manisha Ramdas Kapse (16)

Vikas, and his elder sister Manisha, live with their widowed, single, working mother, Shakuntala, in Chembur. Their father died around 7 years ago. Shakuntala, single handedly brings them up ever since!

Vkas and Manisha have CP (Cerebral Palsy) with profound mental retardation! 😦
Vikas cannot walk at all, Manisha can walk, but very slowly.

Both children travel to a NGO medical centre near their house, nearly one to two Kms away, where they receive physiotherapy, and are made to do physical activities that will hopefully improve their motor skills. They have an old wheelchair on which now Vikas rides to the centre, because Manisha is now capable of walking.

(Dr Indu, daughter of my rider pal Murali Krishnan, visits this NGO medical centre to give them and other children like them physiotherapy. It is she who informed us about this family’s need for a wheelchair. Thank you Murali and Indu.)

Their mother, Shakuntala, told me her children may have suffered Cerebral Palsy because her late husband and she were close relatives.

She continued, ‘…. But, back then in our village in Goa we were not aware that close relatives should not get married and have children.

-Their father was a mason, he died due to an accidental fall in the rain. Ever since he died, I work in two homes as a domestic help. I have somehow managed to bring them up so far on my own, without any help from anyone, but yes, my dead husband’s relatives who live next door do supervise my children when I am absent.

-God has been very kind to me, even though both my children are handicapped mentally and physically, I have work and I can feed them and myself at least daily. Your presence in my house is a sign to me he listens to our prayers.

-I have been wanting to buy a new wheelchair very badly, but I just cannot afford a new one. The wheelchair will not be the end of my problems, even though I need one. Both my children cannot even eat their own meals!, I have to feed them. My son can’t speak at all. My daughter barely manages a few words.

-I have to be around them all the time when I am not at work, because otherwise they drop nearly everything around them in the house. They are not aware of the value of even a bucket of water or a plate of food, or even aware of the necessity of wearing clothes, or having a bath, etc, because of their profound mental retardation.

-I get a few hours early in the morning with them, I take them to the toilet outside in the chawl, and bathe them out too, feed them and only then I go to work. I return in the afternoon and spend time with them or take them for medical therapy. Then I again go to work in another house and return to them only later in the evening.

-I have no other life, other than working for a living and looking after them at home. Where can I possibly go with two children with CP? And how can I even go socializing anywhere without them?
(Then she went silent for a bit and said…) I often fear what will happen to them if or when I die.

-I take Vikas, on the old wheelchair we have, to his NGO medical centre almost daily, Manisha walks along with us. The centre is about 15 minutes away, about two Kms away. But because the wheelchair is quite battered with time, I fear that the loose arm rest or back rest may suddenly give way someday while Vikas is riding on it. I fear that if that happens and a vehicle is passing by, what if he gets run over in that accident?

-Furthermore, his old wheelchair does not have a foot rest, so I fear my son’s foot can get hurt if it hits a stone on the road while he is travelling in it. Our roads are so bad, there are so many pot holes and big stones too. Please give us a wheel chair with a foot rest, the footrest will keep his legs safe. See, he does not have a brain that works like ours, and he cannot even speak a word, but he can feel pain. And even though he cannot express pain verbally, he can cry in pain.’

Shakuntala was so deeply concerned her son may hurt his leg if the wheelchair does not have a foot rest, she reminded me very often to ensure the wheelchair we wish to donate has a footrest.

She continued -The government only provides Rs 300 a month to my daughter for her CP condition. My son, though he has CP too, does not receive this monthly stipend of Rs 300; because they tell me the government cannot give a stipend to two patients belonging to the same family.’

When she said that, a whirlwind of anger erupted in my mind! OMG! What an insensitive and ridiculous rule the government has made for these special children! I wondered, who is that biggest idiot who framed such a rule!? And who are those bigger than that original idiot who have not revoked such a rule as yet!? I am certain they must be the same bureaucrats and politicians who have been loudly claiming India has arrived!)

One thing I noticed was, while we were there, she often held her daughter back from disturbing things in their house, and sometimes even stopped her from coming up to us, (Sahil and me). Manisha’s condition is medically termed as profound retardation, but I felt she was so eager to talk to us, even though she lacked the tools of speech.
Naturally, we both not being trained social workers we had to keep our distance from her CP children. Hmmmmm it is at such moments I wish we had a trained social worker along with us during such visits in future, just so that we come across as a bit more humane, and not someone who ignores an innocent child’s curiosity and friendly advances.

Anyways, while we were there, I was speechless most of the time, because it was the first time I had encountered a CP patient so closely, that too two in the same room that was in volume not bigger than the vehicle we had arrived in, and both CP patients within the same family!

There were things she told me about their condition and how she manages to look after them which I decided not to publish, because they deserved their privacy. (PS – I usually audio record my conversations with the recipients of our help, and send them to the donors who provided that particular help, so that they can share my experience firsthand; but this time I had pre decided not to record our conversation, because these were very special children.)

In hindsight, on an instinct earlier that day when I decided to go see the family in Chembur, I asked my donor pal Sahil Sheth to come along with me. He promptly agreed to accompany me as he had always been wanting to assist me in any social initiative as and when any opportunity arises.

I was glad Sahil could make it, because had he not been around with me when I met this family, I think I would have probably broken down at this resilient stranger’s home on seeing her two CP children and hearing her story. And I would have felt terribly embarrassed of shedding tears out of pity for them, because what a family in their circumstances really needs is our help/support, not our tears! Tears dry forever, but help remains forever.

As we were leaving her house, I realized that their entire world, home, was probably one third the size of a modern residential complex Car Garage; yet it was neat, clean, minimalist. Even her children were dressed in clean and colorful clothes. Sahil and I had felt at ease in their most humble home.
Commendable indeed, is what I thought then, a single mother with two CP children, and two jobs, keeps her kids and her house in such good order!

I asked her later, after the wheelchair was delivered to her, when is the happiest moments of her life?, She replied, ‘When I see them laugh, whatever be their reason of erupting into laughter, I feel the happiest! See, its very simple and practical, I have to find happiness in them alone, not outside of them.’

As we drove away from their house in an air conditioned vehicle, I think Sahil and I must have had one common thought bouncing around in our heads:- ‘Every day we must say ‘Thank You’ to God, to the Universe, to Nature, whoever is responsible for us, even our parents, for all that we have; because many of us really have Everything, Everything, and Everything!!!
And our story will be even more sad than the story of any family in such circumstances, if we complain and crib in spite of all that we have been blessed with!

Another thought that appeared to me was, strange are the ways of Mother Nature. We, who are considered medically and socially ‘normal’, sometimes do not smile in an entire day. And here were two kids who were medically termed as ‘suffering from profound mental retardation and CP’ , yet both smiled at least 21 times during the nearly 20 mins we must have spent in their home!
I wondered for long after I left their home, have we ‘normal’ peeps forgotten to smile? Hmmmmm.

Our gift of this precious wheelchair to Vikas would be horribly incomplete without our sincere thanks to:
1) Himanshu Shah’s medical equipments company, HCE, based at Vile Parle, for the discount on the wheelchair; and for delivering it to Shakuntala’s house in Chembur, at no extra cost to her or to us. His voluntary deed saved me, and even Shakuntala, a lot of time and expense.
2) Thank you to Sahil Sheth and his family, Jay Sheth and his family, Sonika Munjal and Rajeev Munjal and their family, (and even to Rohan Juneja and family) for donating a wheelchair (‘… with a foot rest!’ J ) to this family headed by a resilient lioness, Shakuntala; for me she is nothing less than a lioness looking after her two cubs while her lion is impossibly-far-away to ever help her.

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