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How Thalassemic Patients Helped Me Appreciate the Power of Art?

This summer, I got the opportunity of a lifetime. My internship at the Thalassemia Center at Indian Red Cross, Pune, taught me too much to sum up in this small disquisition. What was surprising is that I learnt everything from a big group of children between the ages of 6-16.

I used to visit Indian Red Cross Center in Rastapeth, Pune, to celebrate World Thalassemia day for few years. So, I requested Prof R V Kulkarni, its General Secretary, if I could do the internship there. He graciously provided the opportunity.

Just as a small overview, Thalassemia is a genetic blood disorder which causes severe anemia. These children therefore have no choice but to get a blood transfusion every few weeks. Indian Red Cross Center at Rasta Peth, Pune has a thalassemic ward, which provides free blood transfusion to thalassemic kids.

I love visual art and human psychology. So, my aim during the internship at thalassemic ward, was to understand what these children go through mentally during the blood transfusion. I particularly was looking to use art to understand, what their mind screams on the inside.

My internship consisted of multiple opportunities of observing and interactions for me to really understand the children.

First, I had to observe the whole process of the blood transfusion. I sat with a kid from the start of the transfusion process, known as pricking (collecting blood intravenously for sampling) to the end (blood transfusion).

This was genuinely difficult for me because I am petrified of needles. I had to leave the room at times as I felt sick when I saw blood dripping from an open-ended syringe into a tube. That is the harsh reality and it’s unimaginable that these kids must go through it monthly.

Another part of my internship, consisted of talking to these children and their parents. When I was talking to the children, I acted as their friend and talked to them about their interest in art, movies, friends. Most of the children luckily did have a huge interest in art. Talking to the parents was obviously more formal and respectful. It mainly consisted of general questions to get an overview of their lives. Turned out that these kids are no different than us, by any margin.

A huge part of my time went in planning for the Thalassemia Day celebration that was being held by the Red Cross Center for these kids, towards the end of my time there. On this day, I oversaw getting together an art activity which would be enjoyable for all the kids. With my Monash STEM scholarship money, I bought drawing papers and a pack of sketch pens each, for all the 50+ children who had gathered to celebrate Thalassemia Day.

I also bought the Thalassemia Center a gift of 2 digital doodle boards and print makers. This was based on my experiment of giving kids my iPad during transfusion to doodle. I found that most kids were so absorbed doing art work on a paint program, that it seemed that pain was not their mind. So, I could see that Digital Art is going to be a big part of Art Therapy in near future.

On the Thalassemia Celebration day, when the children asked me what to draw, I told them to draw whatever their hearts desired. About an hour later, they had finished drawing. Going through those, I got to see their artworks together. I saw a clear pattern. The younger children ranging from age 6 to 10 drew homes from their villages or just homes in general.

When I asked them why they drew homes, their answer was almost same. For them, it was always the one place where they always have fun. Because its one place where they can forget about their problem of Thalassemia and be a normal child. Their artworks were so lively and colorful. It had every possible landscape in one drawing that added a bit of humor.

The male kids aged above 10 years, were more likely to draw God. Apparently, their parent’s strong beliefs and wishes passed down to them. They drew God because they felt close to him and believed that they seek all their answers from him. These artworks were also very lively and colorful.

What was striking were the older girls artworks. Their work was mild, calm, sometimes consisting of dark colors. Most of them did not give me their artwork and I did not want to force them, as they allowed me to observe it from distance. I rather took the time to understand and talk to them. Some of these girls go through major depression and sickness because they feel left out. I learnt that they go through a really hard time because their amount of blood lost is huge. They have anemia, and upon that menstruation. Their visit to the Center is a lot more frequent and therefore depressing. However, this didn’t stop me from giving up. I realized that visual therapy did make them feel better. Although paintings, coloring and drawing may not be for them, the therapy of chick flick movies or comedies happened to be the perfect medicine to turn that frown upside down. So, performance art is much of the solution for these kids as they graduate from visual art. I can see why the variety is the spice of life.

Later, I introduced the presents I had got the children. The digital drawing tabs or doodle boards. What I found really interesting was that the younger kids were obsessed with it. I had 5 children playing on one board at once! It was surely a sight of pure joy. The older guys were kind of shy to paint along with the younger kids, but they were not hesitant with their curiosity towards the board. The social worker and the nurse saw the same magic and told me that they are going to encourage these kids to enjoy their time on the doodle boards. I am sure that will distract themselves from the painful pricking process. Meanwhile, I let the older girls play some games on my iPad, which they thoroughly enjoyed. Digital Art is here, whether performance or visual!

A major learning was that art therapy does not always mean painting and drawing or only visual art. Visuals, funny illustrations, movies, games all come under art therapy. An art of self-expressing, forgetting and distracting yourself from the negatives and focusing on the positives. A kind of self-discovery through self-expression. Something as simple as that has taken humankind so long to understand. Although the younger kids did that, the older ones just had to be reminded to focus on the positives because there is so much more to life. These kids know that they are not any different from us. A little difference in their blood doesn’t change or mess up their future. My conversation with them revealed their dream and dedications towards their passions and future careers. I have full faith in their lust for life!

Acknowledgements: My big thanks to Prof RV Kulkarni, Secretary of Indian Red Cross Center at Rasta Peth, Pune for the wonderful opportunity to intern as a junior social worker, observe and interact with kids. Jatin Sajpal, a thalassemic patient and now a social worker for Red Cross helped me learn a lot about the patient psychology at various stages in their life. It was both of their openness to try visual art therapy with patients during transfusion, encouraged me to bring in digital tools.

Internship Period: June 25-July 06, 2018

Organization: Indian Red Cross Center, Rasta Peth, Pune, Maharashtra, India.

Pune, July 08, 2018

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