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Bond of love and support between siblings including organ donation

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hi it's so nice to see you so thank you so much for taking the time to do this to talk to us uh so what i what i wanted to talk to you about today was your unique relationship with your sister now you know all sisters are uh love each other uh but your relationship with your sister was very very unique and it would be wonderful if you could talk about that [Music] so i'm the oldest and in my family and my younger sister was three years younger to me and when she was born i told my parents to name harupali because i had just started going to preschool and my best friend's name was rupali and she was the kindest and gentlest person to me and so i named my sister you know little did i know that the fact that i gave my sister her name um would have would was the beginning of a very special relationship with her so she was a second daughter born in the family and uh you know in the small north indian town that i lived in my parents received a lot of condolences that you know they had again had a girl child and it was so difficult to raise girls and then collect dowry for them and so my mother was offered lots of sympathies and that was very heartbreaking for me to see and as a little child i did not know much but as we kept growing up i kept hearing from people that oh you know my mother was so unlucky that she had a second daughter in the same year that all uh her sisters-in-law had a boy and my sister's biggest heartbreak was that as a little child she got to hear all of this and got to hear that she was an unwanted or undesirable gender child um she was no one was trying to hide that no one was trying to write that and that is what i now at the age of 50 when i look back i am appalled at how ingrained the patriarchical system was that people felt completely comfortable in saying those things and they felt really normal in fact my neighbors one of my neighbors had three daughters and then when they had their third daughter their father had distributed bananas uh you know as like some people would distribute sweets and stuff and the neighbors made fun of him saying that yeah of course because he had a third daughter he was distributing bananas instead of sweets and that has stuck with me um so and my sister also had uh to follow a really tough time in school she my father was a very highly accomplished doctor he had been a stellar student all his life uh had received many presidential medals and i happened to be also an overachieving child in academics at school um and you know and then became my sister and so she was a normal good average student but she was not in india at that time we used to have class ranks in a class so my mother really favored and wanted her children to have uh you know the top ranks in the class i think a lot of indian parents want that and i was one of those people who got first of second rank always in every test and every exam but my sister wasn't and she got into a lot of um trouble at home because of her lack of academic performance also people used to offer pity that if she since you know she was a girl and a second girl child and if she didn't study well then they'll have trouble you know marrying her off and i was the one who was always fighting whenever i heard anything from any aunt or neighbor if i was around my sister i would push back and so i kind of became a shield for her and i would never allow her to be alone in in front of lots of aunties uh so that she would never have to hear and so you know from the right from the beginning of her childhood i took her under my wing and as life progressed um you know she and i i went through some hardships when i came as a graduate student in canada i i suffered from a lot of hardships and that time she was the one person i wrote to and i called and who always supported me and always told me that i was her hero and uh she knew that i would overcome anything and you know hearing that from somebody uh being raised as a girl in india and always being told to be submissive and make sure you know how to cook even if you're becoming an engineer you my relatives would say things like oh well only indira gandhi gets to have not to get away with without knowing how to cook if you're a girl it doesn't matter whether you're a doctor or an engineer you still have to learn how to cook and you need to run know how to run the kitchen and i was i did not want to learn to cook i was a bookworm i would hide it and read books and my sister saved me because she learned wanted to learn how to cook and she was an avid cook and she would go and learn from my mother and make my mother forget that i was not in the kitchen and so we had this special bond you know i saved her in some parts of life and she saved me from a lot of yellings and you know anger from a lot of people that i was only a bookworm and i was not interested in taking care of the house and i was not learning anything to be like the efficient homemaker that my mother was my mother was already working woman and our house ran beautifully and on and i was least interested i just studied and excelled in my studies but i did not do anything around the house but my sister was the foil and so you know and then the relationship changed even further yeah and became even stronger when she was diagnosed with diabetes yes so that was a a very uh life-forming junction both my sister and my my life my sister was diagnosed with juvenile diabetes which is called also type a diabetes at the age of 14 which is pretty much the last age that one can be diagnosed with juvenile diabetes you know children as young as two years of old age can be diagnosed with juvenile diabetes and when she was diagnosed with that it almost felt like all hell broke loose because now she was uh not only a second girl child but she was a sick second girl child and people started saying things like well she will never be able to marry nobody would want a defective girl to be married into their house and so she would be a burden on my parents in their old age and who's going to take care of her when they die and that was an extremely heartbreaking time she had to go through putting insulin injections on herself twice a day either in her stomach or in her thighs and that was a heart-wrenching you know vision to see in fact she would hide herself in a room and she gave herself injections because it was extremely tough to watch her give that she started struggling with academics obviously and at that time now i realized that there was no concept of mental health for a child who's suffering so much autoimmune disease hearing all these things and pressure of the society and she was handling all of this herself and she always smiled and had a self-deprecating humor and that took a lot of toll on her and uh she would hear really uh heartbreaking things like how much money was being spent on her medicine it must have been so hard on my parents to support her and so i once again became this person who was like her shield and anytime anybody said anything to her you know i would pick up a fight and i started getting into some trouble with relatives and neighbors as this outspoken girl who speaks too loudly because i couldn't bear to have my sister be told that she was a burden um and so that made me extremely protective almost now i did not know at that time but now that i have raised my own two kids i realized that probably that was my first mothering instinct i almost started mothering my sister because i just wanted to protect her and and tell the world that they had no idea how precious and how bright and how gentle she was she was the kindest soul i've ever met in my life my maternal grandmother was also very kind person but i don't think i've ever met anybody as kind and gentle as my younger sister who kept helping people even though she herself was suffering all alone in her misery okay so and then there was an event where you wanted to where you had the opportunity to help her even more almost give her life yes so in 2007 was an extremely difficult year for my sister in february of 2007 she had a heart attack luckily she was in my father's house as a doctor and they my father caught it and and that's when we realized that her diabetes had really started playing havoc on her body um but in about ma april of 2007 is when she went for a checkup for her heart condition and they found out that her kidneys had failed and now that meant that she needed to go again onto dialysis right away and also she needed a kidney donor if she were to survive right and so when i heard this i instinctively decided that i'm gonna um donate my kidney and uh it is so easy to think that you want to do something but actually something as complex as organ donation is not just a matter of somebody wanting to do something it's not like money that if we have some in the bank we can give it to somebody else in order to become an organ donor you have to have to qualify first of all your blood type has to be the kind that the receiver's body can handle number two you cannot have any medical issues of your own in order to become an organ donor and then you know at that time i had a young family as well i had a seven year old and an 11 year old and they were practical worries about the success of such a organ donation surgery and my immediate family very understandably was deeply stressed out about this decision of mine to become an organ donor it is so um it also happened that in 2007 august of 2007 i believe but sometime in 2007 indian government passed a rule that said that the organ donation can only be done by people who are from the same blood family blood relatives because you know the organ organ transplant uh had become an exploitary uh business in india where some poor people were coaxed or forced to give their organs in order to get money or to you know to pay off their loans and stuff it had become pretty pretty predatory and so it just so happened in 2007 the indian government passed that rule and while a lot of people suggested to my parents that they could you know go undercover and pay somebody under the table my family was a very rule following family and my parents did not want to do anything illegal and so they were very concerned how are they going to find a donor and they'd started looking into whether they should fly my sister to singapore or pakistan or bangladesh but i said that i really want wanted to donate my kidney so i flew to india in july of 2007 and i stayed there for a month and in apollo in chennai um they did a battery of tests on me and it was a grueling experience and also a very um eye opening and heart opening experience for me because i had to go and sit in a polo hospital multiple times a week and give a lot of blood tests and you know heart condition tests and all a battery of tests to prove that i was a healthy donor and i sat in the middle of a lot of people who were either donors or patients and i saw that suffering in real real time and while i was going through these battery of tests my sister's dialysis had to continue because she had to undergo dialysis twice a week and at that time in india there was a traditional way of doing dialysis and that the catheter that was put for my sister to get it it kept getting infected so my sisters uh was kept they had to keep redoing it and it was an agonizingly painful experience for her and i watched her go through it and i realized that uh suffering is such an isolating experience that uh we can our most beloved people our children our spouses our our family we we can love them as much as we want we can do whatever but we cannot take their suffering away from their suffering themselves and that was a very heartbreaking realization for me that i can give an organ to my sister hopefully i can save her but i cannot take away her suffering she had so much physical suffering but i was lucky and you gave you ended up giving the kidney i did end up giving my kidney i i qualified as a donor and so both of us had our kidney you know transplant surgery on august 18 2007 and my parents my husband and my sister's husband and our three children were there and it was a very tough moment for them especially i think for my parents to see both of their daughters wheeled into the operation theater and at that time in india organ transplant surgeries did lead to sometimes postoperative infections and sometimes they were even fatal and so obviously it was a very stressful time for my family and my parents were really worried that they might lose both their daughters and my parents were very worried that if something were to happen to me um what would happen to my young girls at that time so it was an extremely stressful time in my family it was very difficult for almost uh four days before the surgery the the atmosphere and the house was so tense i couldn't even feel it and palpably in my three-year-old niece my sister's daughter we were all on high alert and very very difficult but i was extremely lucky and my surgery went flawlessly and i actually came home after a week it took me four three weeks to recover my sister had to stay in the hospital for almost a month her recovery was slower and then we came back home we were one of the lucky ones where we had the financial means to not have to worry about money part of it we also had the good fortune that my mom was around and physically able to take care of both of us our little daughters were amazing to us and they took really good care of us and after that you know my sister every august 18th she would send me a card or she'd send me a note and she officially started calling me herself my third daughter and she started saying happy birthday to me from archana mommy and that became a quite a joke and it was really heartwarming and i just felt on top of the world that i had something that i could give to my sister that allowed her to come back to health and enjoy her family life and it saved her life yeah it saved her life and i just felt that the miracle of medical science and uh i know it's been now 14 no actually it's been uh yeah it's been about 14 years yeah it's been about 14 years since that surgery and the surgery organ transplant surgery has become only better only easier i had a family friend who reached out to me four years three years ago wondering if he it's okay and safe to give his kidney to his relative and he talked to me in detail and then he was convinced that yeah it was not a scary thing and actually we found out that his surgery the advancement in medical science has happened so much that he actually came home within two days and he was able to go back to work within two weeks and so you know such a major surgery yes but the medical science is amazing and it is uh they have made it so easy for an organ donor to give their their organ and the hardest part of transplant surgery is for a receiver's body to accept them and not reject it there's a term called rejection in the receptor's body can attack the new organ right and the medical science has really worked hard on it and um you know more and more uh recipients of organs are able to keep their organ and then go on to live a full life and that the thing was that we hadn't realized this was like a kind of a boiling frog syndrome where you know when the water boils the frog doesn't know that the water is boiling with my sister when her health was declining we hadn't seen how far she had declined but when she got this new kidney she sprung back to life so much that's when we realized how much the lack of kidneys and the you know her disease had minus the quality of her life right right that was another revelation and that was another huge gift for her right running back to an almost normal life that is great and so i was lucky that i qualified to be a donor well thank you so much for sharing your story at this is absolutely amazing and i think what you did for your sister is unique in every way you know supporting her from the beginning till the very end thank you so much thank you so much

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