Grit, Courage and Faith
(First Hand account of a Thalassemia Patient)
I am an artist. Fine Artist with BFA (Bachelor in Fine Arts) from Drawing and Painting Department and still Learning…Learning never stops. I work in a Special School as an artist and a trainer. A trainer for special kids, the sole aim being to make them (kids) as independent as I am today, to be able to do each and everything and to express themselves as I have. During this process, I learnt about a beautiful word ‘PRE-REQUISITES’ which means getting thorough with the basics. It took a lot of time initially, but it works wonders. The results are wonderful. It is a job half done just as knowing fundamentals in Art. No, I don’t want to be qualified as an Artist but absolutely ‘justified’ for being so. Now ……why am I writing this?
In a retrospect –
I sensed, when I was small that a different lifestyle had been designed for me. A living that involved some sort of pricks and more pricks. I couldn’t process this stage at all. I did what I was supposed to do. There was never a choice. As far as I remember school going days…when I was in Sr.KG I was sent to school with an injection (Desferal) on my tummy…so that I should not get used to skipping school just because of injection. The concept of ‘no excuses’ was engraved in me ever since, by imbibing a normal quality life that’s worth living and what is the right thing to do at each and every step. Life was mechanical.
I learnt to spell ‘blood’ when I was in second standard. There was hardly any time for my parents to explain my condition to me-it happened on its own. A kind of self- realization…… Towards the later part of my primary education I knew that my body had Thalassemia and not me. After which all I had to do was follow the line of treatment I was prescribed. My parents ensured that there were no interruptions in my learning process and education.
I could not only participate in annual functions, but also attended outdoor activities just like any other kid because of immense support from my school. I can’t thank enough to my school ‘Vidya Niketan’. I made friends – close friends till date. My schedule and my day was perfect like any other school going kid.
I had no time to think about or process the pain, taking Desferal injections, going for transfusions and following diet was part of normal life. I had already mastered my ‘Pre-Requisites‘ for beginning to experience new phase of college life . Art college in my case.
My case study :
When I was six months old my parents noticed that I was hardly doing any movements. My parents took me to a child specialist who called it a case of Hepatosplenomegaly. I was asked to do further blood test to arrive at the correct diagnosis …and it was confirmed that it is a case of Thalassemia major. My parents thereafter took me to Wadia Hospital for a second opinion and to ascertain the correct line of treatment who advised frequent Blood transfusions as the only treatment that could be done. I got my first blood transfusion at the seventh month. After I received blood transfusion certain activities in me were visible followed by progress in multifolds. My parents had to arrange for blood donors along with my blood sample for continuing the transfusion. I was prescribed Desferal … an iron chelation therapy that’s mandatory to keep iron overloading that occurs due to transfusions under control. Accepting and understanding a condition like this and taking absolutely necessary steps was an extraordinary thing to do then. It was right there..the solution! Since iron chelation was necessary Desferal was only an option. A subcutaneous injection to be administered everyday and to be kept for 8-10 hours. My parents had to be tough, since they had a Vision to make me live like a normal person.It was not easy. My iron chelation therapy began when I was 2.
I started taking blood transfusion at St. George hospital, years passed by .A development in iron chelation therapy was introduced …in the form of capsules known as ‘Kelfer’. Thinking of it as better option than injecting desferal every day I started taking those under expert supervision. Kelfer also started showing positive results. I was taking both.
Though people consider that Thalassaemia major have limited access to normal living… a lot can be done to lead a good quality life. Tests were advised to monitor myself. It included timely blood tests, MRI for iron overload of the liver and heart, DXA scans for bone density changes. I was given an exact dosage of Desferal and Kelfer . I visited a Gastroenterologist & Specialist in Liver Diseases for evaluating liver conditions eg. HCV, who recommended a liver biopsy to know the exact status of viral load for further treatment. I also went to an Endocrinologist for monitoring growth, hormonal issues, bone density etc. The necessary blood tests have revealed that I have a pre-diabetic condition and an appropriate treatment is also underway which includes monitoring of blood sugar levels then daily to thrice a month now.
‘I’ll have to Treat you like a normal patient from now on unlike before ...as a Thalassaemia major.’ Were the words of motivation from my doctor who also insisted on a proper follow up.
The continued support of a team of good doctors and being compliant in following the course of treatment has been of major help in shaping my life style. An almost independent life..allowing me to be incharge of my own treatment . And now …I’m really feeling the power of it. Being in contact with the right doctors and seeking answers from time to time, regular follow ups is extremely important to reach the positive outcome. Earlier there was no internet access but now parent …along with the child with chronic illnesses can get to know the latest research to discuss with doctor.
Working parents :
My parents had full time jobs. They accompanied me during blood transfusion taking turns. But eventually taking a full day leave was difficult for them to manage. This made me realize that I should step up for myself and I learned to travel alone at the age of 13. This made things little flexible, enabling them to get half day leave. My parents were there only during and post transfusions. At the same time this also built my self esteem to the core. There was no looking back. The frequency of transfusions was never compromised. Meanwhile I am blessed with the most beautiful sister that I didn’t know I needed. And now she accompanies me during this procedure J. My sister is one such an amazing person, who brought enthusiasm in my life and continues to bring smile on my face every time.
Professionally :
I work in a Special School, being an artist I could implement the elements of art in teaching kids. I work as a special educator for kids diagnosed with various challenging conditions. I don’t even know what is in store for me each day! It’s pretty challenging ..but it only gave me strength. Completely absorbed with these kids even at the back of my mind chelations or transfusions have no place. Or I may be doing justice to transfusions I receive in the best possible way I can. When I see these kids I find them more helpless and frustrated, not even able to express what they are going through! When I am with them my own issues look minuscule. They absolutely need help in achieving independence.
The work at the Special School invariably leaves me with burn outs and total drain of energy. It is a daunting job for even a regular person, some people discouraged me ..for they thought I’ll compromising on my health. But I’m happy that I was able to sustain in this field for 8 years and still continuing to do so which added coping skills .
True Friends … A most valuable circuit!
Life was not always all work and no play. I have never missed any study tours .Once met with an accident with wounds that needed stitches on my face. I had an option of continuing a journey ahead or returning to the source .But I was able to decide for myself to continue with the journey along with my supporting friends. Since the treatment part was done exactly as prescribed I was confident enough to move on with my first tour abroad with my friends ! I could experience the beauty and serenity in European countries. I could breath Art J. I saw artist working on the streets of Florence freely … hoping that someday I would be one of them. As of now I am preparing myself to sustain for longer time ……to make myself able to study art for a longer time in different places.
Regret : The only regret is that I cannot indulge in outdoor sports activities .
Conclusion
So far I have been talking about process of keeping medically fit and becoming as independent I can. However I couldn’t have done several of these without timely support of people around me.
I thank my parents for accepting me and fully focusing on how they could help me to get the best medication and related processes, whenever they were required..otherwise treating me as good as a normal kid . That allowed me to my condition in my stride.
My sister …a beautiful person in particular who continues to be able support to me in every possible way.
I thank all the doctors who helped in diagnosing my condition and supported me to sustain through chelation and other co-existing condition.
ALSO I WANT TO CONTINUE TO THANK INNUMERAL DONORS WITHOUT WHOM I COULDN’T HAVE MADE IT THIS FAR.
I would like to conclude with a quote by famous Surreal artist Salvador Dali …..
“Every morning when I wake up, I experience an exquisite joy —the joy of being Salvador Dalí— and I ask myself in rapture: What wonderful things is this Salvador Dalí going to accomplish today?”
Drawing an inspiration from this quote, I continue my journey in life with renewed energy.
-Akshata Bhat