Monday, November 17, 2008

Aadhar - the meaning and the inspiration

Aadhar as the name suggests means support. And that is the main function of this trust which was set up in 1998 by a group of friends. The primary goal was to provide a helping hand to people who desperately needed it.
Life is a big mystery. However much we may feel we are in control, it is sooner or later brought to our notice that things can change in a split second to alter our entire course and plans. Unfortunately it is unhappy incidents which bring about maximum transformation in our thinking.
The same thing happened with me. I would like to share with you my experience so you may understand the motivation which makes this, such an important issue to me and the seriousness and dedication with which I do this work.
In 1995 I noticed a lump in my neck , quite by chance .There was no pain , discomfort, fever or anything at all that might give me a clue as to what was happening in my body. I am a doctor and I can vouch for the fact that I had no complaint which I was ignoring. But after finding the lump, we wasted no time in investigating the reason. It came as an absolute shock to me to find out that the lump was caused by a malignant transformation in glands in the neck, known as lymph nodes. The diagnosis was Non- Hodgkin’s Lymphoma. I really don’t know what I thought when I was told about the diagnosis. I was stunned. It takes a little while for it to actually sink in and to start reacting to the situation.
Luckily since my husband is also a doctor, we dealt with the situation very pro-actively and within a fortnight all further investigations were completed and we were ready to proceed with the treatment .All our friends gathered around to help, and I am truly grateful to them for their support.
The next six months were a whirl of visits to the hospital, chemotherapy schedules, pain, illness and trying to act as normal as possible in front of my children ,who at that time were 6yrs and 10 yrs old.
But this was the first time I sat outside in the waiting area and looked around at all the patients. Not for the five or ten minutes we gave them as overworked doctors in a government hospital, but as a co-sufferer. I think rather than my own illness the problems of all those patients affected me much more. Both of us used to stand in the OPD waiting area, even if it was for an hour, because I used to feel I would get drowned in those anxieties and worries if I sat down. At that time I would always watch a group of people moving around in the OPD, sitting and talking to the patients and comforting them. I found out that they were from an organization called Cancer Sahyog, which gave emotional support to cancer patients. They were all cancer survivors or care –givers of cancer patients. One of the ladies I met had actually lost her son a few years ago due to acute leukaemia. To come back and give unstinting support to others is something I really admired. At that point I decided I would join the group after my treatment.
My treatment lasted for almost two years as I took Interferon injections daily for a year after my chemotherapy finished. It was only about a year after that, that I was ready to go back as a volunteer. I joined cancer sahyog and started visiting the hospitals with the other volunteers.

The problems cancer patients face, are really daunting. We from the educated and economically stable backgrounds are lucky, to at least be able to understand what is going on, afford treatment and remain as comfortable as it is possible to be.
Cancer Sahyog at that time gave only emotional support. I found it very frustrating to go to the bedside and say to patients “ sab kuch theek ho jayega” (everything will be fine)! The person was going through hell trying to figure out how to raise money for the next chemotherapy schedule or whom to ask when blood needed to be donated again. Definitely emotional support is exceedingly important ,but I felt something concrete needed to be done to help.

Then I came across two cases which made me decide that I must try to do something.
Something, however small it may be to give relief to another fellow human being.
I was in the hospital with the social worker, asking her about her work when an elderly gentleman came in to ask for help. He was about 75 yrs old and was being investigated, as he had a lump in his abdomen. He just said the hospital had given him a bill of Rs. 5000/- and he did not have the money to pay it. He had come only for a routine check and had not been informed about the cost of the investigations. He had no money and there was no one to help. The only way for him was to commit suicide.
I was really shaken up. Just for Rs. 5000/- this depressed and suffering old man was
ready to kill himself. I returned home feeling terrible. On my very next visit I came to know that a 23 year old youngster had jumped off the roof of the hospital after coming to know how much problem his elderly parents were facing in helping him undergo treatment.
Visitors and relatives, at least in India, seem to take a lot of time out, to commiserate with the family but actually make things much worse. They do not give any concrete help but come and discuss all kinds of things in front of the patient, sometimes making the situation worse.
The best way to help seemed to be to assist the patients get the medicines they needed.
I had a few patients who had told me they would like to donate for treatment of poor patients . So I spoke to them and also to my circle of friends and raised a modest amount to begin the work. The social worker helped me identify patients who needed help and I started acquiring medicines and giving it to needy patients.
As the donations and work increased we decided to formalise the group and formed Aadhar Charitable Trust and registered it in 1998. After three years of regular activity we got Income Tax exemption under section 80 G of the IT Act of 1961.
It is difficult to help everyone and so, we decided to start with children as our target group.
At first we could not approach the government hospitals as we did not have sufficient funds, but gradually by gods grace the fund has now become sufficiently stable for us to support treatment of 20-25 children per month from hospitals like Lok Nayak Hospital, Guru Teg Bahadur Hospital and Sir Ganga Ram Hospital. There is an alarming increase in the number of child cancer patients, and the cost of treatment is formidable. Treatment in children goes on for a much longer time than in adults. For example in leukaemia’s it goes on for two and a half years. Besides the medicines there is requirement for repeated investigations, blood donations and surgical procedures may be needed to be done. The parents have to spend a lot of time in the hospitals and regular sources of income are often lost. Many patients are from outside Delhi. The stress both financial and emotional is terrible. At such times any help is welcome and there is at least the satisfaction of knowing there is somewhere to turn to

for help. Doctors refer patients to us with prescriptions . We acquire the medicines and confirm with the doctors that the patient has reached back with them. Follow up is done with the treating doctors. As far as possible we try to see that patients complete their treatment and they are counselled whenever needed.

Aadhar is now also actively involved in publishing books and pamphlets regarding cancer awareness and information about various types of cancer and the treatment options available. These books are distributed free of cost in hospitals to patients and their relatives and to social groups doing cancer awareness workshops.
As they say a drop on its own is nothing but it is an accumulation of multitudes of such drops which make the ocean.
Any help which can bring relief to someone in trouble is surely worthwhile and hence I appeal to all to generously donate so that we can help as many people as possible.

The other activity routinely being followed is charitable eye camps. Elderly people are unfortunately a neglected lot. We hold free camps to provide eye check-ups, and surgery for cataract and glaucoma. Lens implants for cataract patients are done free of cost. Annual eye checks are done in schools for poor children to screen out children who need further care and to detect nutritional deficiencies which may cause visual loss. Certain schools have been earmarked where annual check-ups are done.

For all these activities we need funds from generous donors. I would to appeal to all to donate generously for the activities of the fund.
All donations are strictly used for the purpose for which they are given. The work is entirely managed by volunteers.

No comments: