Planting the seed of imagination

I recently saw a patient and faced some challenges in treating her. This taught me a very important lesson. A basic capacity of imagination is crucial for effectively navigating our lives. Every thinking human being is endowed with this capacity to imagine, some more vividly and some scantily. When the capacity to imagine is weak, we end up with diminished hope, low self esteem and lack of initiative in doing things. I have been dreaming of being a writer for as long as I can remember. Starting from my childhood when I used to read Enid Blyton's children's books I have always marvelled at the capacity of writers to weave a magical universe in our minds with their words. I have dreamt of having books published with my name on the cover, the books displayed in the popular book stores and people buying them, reading them and discussing the content. But life took a drastically different course and I ended up being a clinician and researcher, and I mainly write academic papers now. But even now in my own imagination, one of the ways I want to be identified is as a writer. This ability to imagine a future as a writer has driven me to many of my life choices. This is true for many people. This is not just true for career decisions. Even planning a lunch menu requires a certain kind of imagination. I need to imagine the taste, the texture, the presentation of the food and it must create an appetite for me to successfully execute the cooking. These are just a few examples and we can see how a basic capacity to imagine is crucial for doing anything in life. 

One of our community health workers told us recently about a 17 year old girl in a nearby village who has diabetes, but is not at all bothered about taking treatment. Such a young girl with diabetes alerted us to a possibility of Type 1 diabetes, which can be quite a complicated problem for an adolescent to navigate. Unless the adolescent is supported, educated and empowered adequately, they may not be able to handle the everyday pressures of handling their own diabetes control. The parents and immediate family may have to be involved to support the child. So, we decided to pay a visit to her home and understand the situation better. My colleague and I went to her village and her home was in a narrow lane that would just permit us to walk. It was a hut with a thatched roof and brick walls, with not more than 300 square feet of floor space. Children were playing outside on the mud road and a lady was washing clothes in the public tap near her house. We approached her and inquired about where the girl was. The lady called out her name. From the hut, a tall lanky girl walked out dressed in a yellow coloured chudidar, a dress originally from the northern part of India, but predominantly worn by girls all over the country because of the convenience and comfort they provide compared to the heavy and cumbersome saree. The lady who was washing the clothes was her neighbour. The girl recognised us as soon as she came out because the community health worker had already told her that we would be coming to visit her. She called out to her mother, who came from a nearby empty land where she was drying some red chillis in the sun. 

"We came to check on you and find out about your diabetes and your treatment" we said. 

The girl's mother started explaining the issue. Devika (name changed to protect privacy) had suddenly fainted and fallen in school and was rushed to the Government Hospital in the nearby town. She was found to be in a coma and was admitted in the critical care unit. She had struggled with life and death for almost a fortnight and had been found to have Type 1 diabetes. She was started on insulin injections, slowly recovered and had been discharged home. This had happened almost a year ago. The instruction given to her was to continue taking the insulin shots every day, before every meal. Devika had followed this for a couple of months and then stopped. 

"Why did you stop the insulin? what happened?" we inquired. 

"My husband and I cannot go all the way to the town to get her the insulin every 15 days. We both have to work as labourers in the nearby villages every day to make ends meet. We cannot afford to buy insulin in the medical shop. It is too expensive. Moreover, Devika was feeling better and there was no difference between taking insulin and not taking it." her mother said. 

"Then what happened? what did you do?" we probed further. 

"So we went to the local doctor in the primary health centre. The doctor said that we can start on tablets. So the doctor put us on tablets and she is taking it now." the mother responded. 

The recommended treatment for Type 1 diabetes is insulin injections. Diabetes tablets do not work for patients with Type 1 diabetes and may worsen the clinical condition. We were furious with the medical officer who had given them the wrong treatment. When the mother showed us the notes of the medical officer which clearly showed that he/she had started the patient on Metformin, it infuriated us. This was negligence. We had also organised to do some basic blood tests for this girl prior to our visit and she had the results of these tests with her when we went. Her blood sugar levels were extremely high. The last time she had taken insulin was several months ago. The task ahead of us was critical and required immediate attention. 

"Devika, your sugars are very high now. Don't get scared about it. We can manage it. But tablets will not work. We need to get you on insulin. Insulin is the only solution for you." I said. 

Devika smiled and nodded. It was not a smile and nod of understanding. It was a dismissive smile. She seemed to be saying "Do you think I don't know all this? Do you think nobody has told me all this?" Her mother immediately said, "We know doctor. The GH doctors told us and the nurses have also told us. But what to do? We are not able to get the insulin injections. This PHC doctor told us to continue tablets and this is what we have been doing." 

Then we reiterated the fact that tablets will not work and insisted that she should get insulin. We started planning how to get her the insulin. We decided that we will purchase a few doses and make it available to her at her home through our community health worker and meanwhile work with the public health system such that the insulin is made available at the Primary Health Centre level. We may have to talk to the PHC medical officer and other health system officials for that. One great advantage in the Tamil Nadu public health system is that such arrangements are not only feasible, but the health system officials are very forthcoming and eager to make such arrangements. 

"We don't want the insluin." Devika and her mother dismissed all our discussion in just one statement. Their body language showed us that they had strong reservations against using insulin injections and were hesitant. From prior experience in the community we were well aware that there are serious wrong notions about insulin in the community. Whenever we have attempted to talk any patient in the community into starting insulin, the common responses we have had are, "We cannot stop insulin once we start it. It becomes permanent", "Insulin is the end game. Nobody survives long after starting insulin", "Insulin damages the kidney and all internal organs.", "Alternative systems of medicine can help us avoid insulin", "Why should we keep puncturing our body three times a day for the rest of our lives?" and so on. But these notions were probably not the only reason for why Devika and her mother were hesitant to start insulin. We understood that they lacked the information that is required to imagine a future and a life for Devika. After the discharge from the hospital Devika and her parents had resigned to 'her fate' and had given up on most things that a family dreams for a young girl. They had dropped her out of school. She did not go to work. They were not giving her any household responsibilities. Devika was just sitting waiting for the disease to take control over her life and consume it. In fact, it had already indirectly started controlling her life. Devika and her family needed to imagine a life and future for her on insulin. A full life as a normal young girl. 

"Amma, we need to start the insulin immediately. If we start insulin Devika can live a normal life. She can re-enrol in school. She can complete her education if that is what she wants. She can look for a job and gain financial independence and be empowered. If she wants, she can fall in love and be married. If and when she wishes she can have children and become a responsible mother. She can live a full and normal life like everyone else." we said this to both of them. 

As soon as we started saying all this we could see a distant look on both their eyes. We had planted an imagination in their minds. They had already started visualising this future for Devika. Suddenly the mood of the interaction changed. Devika's mother seemed to gain a better understanding about her daughter. Which mother wouldn't feel the warm glory of the beautiful dream of a future for her daughter? We noticed that we had just sowed the seed of an imagination and now, it will grow into a huge forest and there wouldn't be any turning back. Things started happening very fast after this. We organised the local primary health centre to supply the insulin for Devika in her own village. Devika has started insulin now. She has started going to work. The last we met her, she was no longer lost in sad thoughts, but was cheerful, up and about like a normal teenager. 

One of the strategies that many doctors adopt to ensure adherence to medications or insulin in their patients is to warn them of the dangers of not taking treatment. We warn them about what can go wrong, the complications of the disease and how it is important to be regular on medications to avoid them. This is a useful strategy. All the doctors who have met and spoken to Devika's parents had probably adopted this strategy. However, for people who are struggling for an everyday livelihood, one of the major deficiencies that they suffer from is weakness of imagination about a future normal life. Social circumstances beat the life out of them that they are too scared to imagine a good life. Sometimes, a doctor / health care provider's main role is to plant the seeds of imagination and a dream in their minds. It worked like magic in Devika's case. It will probably in many others too.