(title for chaya and rajul ) when i was younger, i used to have this kind of morbid/kind of twisted dream about my funeral. i never thought about the actual dying part, but about who would come to my funeral. i was kind of cursed and blessed to actually witness my "funeral". but this time,i really wanted to know what people really thought, i wondered what they were thinking when they saw me. i think that everyone who visited me got the same memo; to just walk in my room, smile, and tell me i looked beautiful. but that was perfect because at that time i needed everyone around me to be strong. but after a while, i started to get confused. i was still so shocked, exasperated, horrified, frustrated and in utter disbelief as to what happened to me. but everyone else seemed fine with what happened it was as if they had already accepted what had happened, and since i was getting better, they were all fine with it. but i thought there was nothing fine about it! then one day friend from high school came to visit me. i dont think he had gotten the memo so he was just real with me. he said, "man this really sucks. i can't believe this happened to you". wow i was so thrilled to hear those few words. it was so validating to know someone else was still shocked and upset like me. so over the next few months, through emails, chats, and essays people wrote about this, i had glimpses into how people really felt about this. sometimes it nice and refreshing for someone to be real . while it is also sometimes nice to ignore the enormous elephant in the room and keep conversations light so i can feel happy and normal for a minute, it is also really validating to hear how people really feel. this awful thing has caused me to feel every kind of emotion, so it
feels good to know it makes other people feel something. it makes me feel less alone. the other day, i got an email from my med school friend who did just that, he said...
"Each time i see you, each time i think about you, i have the same overwhelming feeling that everyone around you, all your friends and family, probably have too - this intense wish that i could do something to make it all better right now, instantly. I wish i could gather up a hundred or thousand people and each of us could divide up the muscles that still haven't awoken, and carry them with us until they do. I'd take that left hand and give you mine. I'm sure my Mom would take some erector spinae muscles. And we could just leave you perfect, back to baseline, and all hundred or thousand of us could carry those sleepy muscles so you wouldn't have to."
it was amazing, powerful, and best of all, real. he was frustrated with this too and really wished he could help. i know i have to fight this battle ultimately by myself, but with you all staying with me, im sure as hell, not alone.
Monday, December 13, 2010
Saturday, November 6, 2010
Here I go again on my own
april 30, 2009. i had been dreading this day for months. i couldnt believe this inevitable day was approaching rapidly. i was hoping time would just slow down just a little. but april 30 regretably came, and i had to leave the hospital and go home...most people would be so thrilled to go home especially after 5 whole months in the freaking hospital, but i wasnt most people...the hospital was like a buffer, a refuge from the real world. you were supposed to be sick in a hospital. i knew and feared the fact that i would be going from a sick girl at the hospital to a disabled girl at home. (the former implies a more temporary state, the latter sounds worse). the reality of how different my life was going to be came crashing down like a wave that engulfed me and left me drowning in fears. the renovations to our house, the hired helpers, all the new equipment we needed... going home was making me feel the full, horrible longterm effects of a stroke. and the nightmare i had in the ICU began teasing me with its inevitability: becoming a burden at home...but i went home, and i didnt become a burden. i did hate being a stroke victim in the real world, but i also discovered the perks of being home. but i also discovered the worst part of moving home. i became alone. in the hospital, there were at least 60 other patients who could somewhat understand what i was going through, and nurses and doctors had to be there around the clock. in this new world everyone got to leave my reality, except me. in the hospital, i seemed to be in more serious danger, so i got cards, flowers and visitors everyday. but my 'honeymoon' period was over. my family went back to work, my friends went back to school, and i was left behind...i know people want to be there, but everyone has to move on and get back to their own lives. everyone gets to leave this. people get to literally and figuratively leave this. you can even stop reading this if it gets too heavy. but I can't stop living this . my every second , my every minute , my every hour , my every day, this is my reality. the only constant in my life, is me. only now, stronger and braver than before. and as biggie said, "I'm living life without fear" this is my battle, and i'm fighting it fearlessly.
Friday, September 17, 2010
everything i do, i do it for you
back to the ever pressing, ever infamous, ever mysterious question of WHY?! why why why did this happen to me? maybe if i ask enough, i'll get an answer... i had enough good karma in me to start a car, no, a truck, but the arguably worst thing in the world happened to me anyway. everything i believed to be true in the world, was absolutely false. now im just left with enough bitterness to fly a plane. maybe it was because i needed a second chance at life? ive thought about this question over and over, and given the chance to lead my life differently, i wouldnt change a single freaking thing about my life (except maybe i would wear more purple... i recently decided purple is the new pink.) i was living the dream. i was pursuing my goal of becoming a doctor, i was close to my family, i had a full social life, and i was happy. i have considered every possible outcome of all this, from going down in science history to becoming a world renowned author, and nothing, i mean NOTHING, could happen that would even slightly make this worth it. even if i become a billionaire, on the cover of forbes magazine, smiling next to oprah and the queen, (what up oprah!), still, this wouldnt be worth enduring at all. sigh. i have no doubt good will come of this, but no lesson or outcome will satisfy the question of why... so ive given up on asking that question. maybe, if im not going to gain anything from this, you all can gain something from this? sounds weird but it is kind of fitting. my whole entire life was always dedicated to other people, my family, friends, people i served. and now this suffering might all be for other people. my story might help advance the health field, my story can provide hope to patients in similar situations, and hopefully my story can motivate you all. it gives all this suffering some meaning, right? now, immediately after a tragedy hits close to home, people realize 'wow, life is short,' 'carpe diem,' 'live life to the fullest,' etc, but people soon forget their new found epiphanies, so i wont really motivate you by telling you that. instead i'll share with you all something diana told me succinctly and powerfully at a tailgate in '06, "MAN UP!!" seriously, if i can somehow handle or deal with my awful situation, you all have no excuse not to deal with the problems or obstacles in your way. basically, if i can do it, you can do it. MAN UP. as coach taylor says on the best show ever, friday night lights, 'clear eyes, full hearts, cant lose.' if i wont lose, you wont lose.
Wednesday, August 18, 2010
i believe i can fly
it was hard to have hope... really hard...pretty much impossible. i had just almost died. my entire life had been ripped away from me in an instant. i was terrified and alone. i could barely even believe in tomorrow, how was i supposed to believe in a future, a BETTER future? people kept telling me if i believed and had faith, i would get better. that line killed me. i deeply wanted to be hopeful and positive but i really couldnt. so then, i felt that if i didnt get better, it would be my fault, because i didnt believe enough. this guilt consumed me. 'well, this one person who was really sick, just decided to believe they would get better, and they did! right away!' people loved to tell me these stories to maybe encourage me? but instead, they just made me want to scream. life wasnt that simple. i wanted to say, have those people call me when theyve had a stroke and locked in syndrome. all i was capable of doing and all i wanted to do was to wake up every morning, get out of bed and work like I had never worked before. though I felt guilty every day, that would have to be enough. i was watching joel osteen the other day (mainly because my mom made me, i swear!). he says a lot of god is great stuff or jesus is the man type stuff, but if you listen closely, he says some profound and interesting things. he was saying how every person around you needs to encourage and believe in your dreams. he was also saying that the people you look up to have the ability to speak words that are so powerful to you. i realized that is how i got through it. the people around me were positive for me! though i couldnt believe myself, every person around me believed it for me. They had enough faith and optimism to make up for my pessimism. and i appreciate all the people who were brave enough to say things to me that were so positive and powerful, even before the doctors would say anything. I remember this one older med student, who I have always respected for her poise and intelligence, was saying something about me returning to medical school. though i couldnt say anything yet and couldnt even break a smile, every part of me was smiling inside. if she, the smartest girl ever, believed i was coming back to school, then i had to believe i was! then another teacher from med school, only a few weeks after my accident, through all my tears, she said 'this will all make you a better doctor.' for some reason, those words, since they were spoken so early on, were so powerful to me and always stuck with me. finally, i remember, one day my resident came in the room. i was visibly upset and my mom said, 'what do i do, she doesn't believe good things will happen.' My resident responded, ' well, whether you believe it or not, everything will be happening to you anyway!' what an epiphany, the burden i had been carrying for months was finally taken off my back. the guilt that was consuming me finally melted away. i could just let everyone around me be positive and believe in my dreams for me, and i could just concentrate on working hard every day. that would definitely be enough. so no, i definitely don't believe i can fly, i just really need you to believe that i can.
Wednesday, August 11, 2010
call on meeeee, call on me
drum roll please...I CAN TEXT!!!!!!! you all know that is secretly and sadly, one of my top priorities in life hehe. it is slow and difficult but it is completely by myself, which is all that really matters! im using my old phone, my crazy krazer, with my normal number. i hold the phone with my left hand and type with the middle finger of my right. my finger gets tired so i dont know if i will respond everytime! i already texted a few people because i knew it would be a weird/wonderful surprise for people to see my name pop up in their inbox! next goal - being able to TALK to you on the phone!
Wednesday, August 4, 2010
its gonna be me
i love(d) running. no really, i did! i enjoyed working out, and even found time to do it in med school! and i was pretty health conscious (that was sometimes an understatement...ask megan...vegetables with a side of vegetables anyone?). so, all that combined, i was in pretty good shape. and then, i had my stroke. within a few days, i was unrecognizable. i saw my legs which were muscular just a few days ago, were now toothpicks, skin and bones. i felt like the insides of my limbs were sucked out. it was like all my muscles had dissolved overnight. my body just felt like a useless pile. gross. i thought things would change once i started eating. but pureed eggs, pureed peas, and pureed pinto beans that i forced down didnt do anything but make me vomit. maybe things would be different? after months of practicing swallowing, failing 3 or 4 swallow studies (yes, first test i ever failed), and having no hope of swallowing normally zgain, i passed my swallow study! i got my last artificial attachment out, my PEG tube, and i could have regular food and drink. i shouldve felt more normal, right? false. i was filling up on pasta and pizza, but i felt and looked so empty. i realized my muscles werent just hidden, they were all gone... and i would have to start from scratch. and it was really from scratch...my first evaluation, every single muscle, from my head down to my toes, was rated as a zero out of five. so my therapists and i, not knowing where to start, went to work. for 6 hrs a day for 5 months, i worked, trying to reignite these lifeless limbs. by the time i left the hospital, every single was at least a one out of five, meaning they had all turned on! so my next goal was to make them stronger. though my muscles had turned on, i still looked deflated. i knew i had A LOT of work ahead... now, a few days ago, my good friend manoj was here. he casually said, 'u look good, do u work out?" i laughed because i was thinking, 'yea, obvi, only every second everyday!' but it really got me thinking. ever since the stroke, ive looked sick, weak, and emaciated, but never good. while i was thinking about this later on, i had reached out to grab my armrest and pull me over. i looked down and there i saw it....a bicep! i could see a little muscle belly poking through! though i definitely still have a lot of work, my hair is still wild, and im paler than my white, eminem-esque trainer, the real me is slowly poking through. so eventually, totally and completely, from head to toe, its gonna be me.
Monday, July 12, 2010
will you be there?
let me share with you all a little story. not because it ties in perfectly with my blog, but because its a really cute story! the other day, i was watching tv with my nani (grandmother). she was telling me about how back in her day, no one ever said "i love you" to each other. so, for as long as she could remember, her husband never once told her he loved her. but she never had any doubt in her mind that he loved her like crazy. she saw it in his every action, everyday... it is such a simple story, but so profound. do actions speak louder than words? by some stroke of luck, i have become somewhat of a writer, so i do believe words have power. maybe our hearts fall for words, but our minds need something more, some action, some evidence, some proof. i guess that was how i was. yes, i was so vulnerable to what people said, but sometimes, that wasnt enough. whether it was because i didnt fully trust people, or their words were too good to be true, i needed more than just their words. the doctors and everyone began to be more positive and optimistic to me. some were saying i would get all better, i would walk again, i would do everything again. i shouldve been ecstatic, right? that was exactly the news i had been dreaming of hearing for months. but i wasnt ecstatic at all, i was crying. to me, they were just words, words that sounded way too good to be true. where was the evidence, where was the proof?!?... lets just say, im still waiting for that proof. another phrase i kept hearing a lot was not from my doctors, but from my friends. i kept hearing people say they would be there for me through everything. but what did that mean? yes people were all there then because i had just had my injury, but i thought, what about in a few months or a few years. i feared the worst. i knew the novelty of being a sick persons friend would wear off and people would get back to their own lives. i kept hearing these words of support from people, which shouldve comforted me, but instead, scared me. they were just words, i needed proof. this time, i got ALL the proof i ever needed, and then some. some of you may know my best friend rajul. we met while we were still in the womb (literally! our moms were best friends and were pregnant together). and now 25 years later, we are still best friends, two souls, but one heart, and about a million inside jokes. she was visiting one day and told me she had a surprise for me. she then turned around, lifted up the back of her shirt, and what i saw left me awestruck. it was a tatoo, of my name, written in hindi. wow. i instantly knew then that my friends werent going anywhere. rajul was saying through that, that she was sticking with me forever, no matter how old and grumpy i get (or rich and famous)! to me, it meant i was worth sticking around for, and i really needed to realize that...so, now i ask you,
If I lay here
If I just lay here
Would you lie with me
And just forget the world?
If I lay here
If I just lay here
Would you lie with me
And just forget the world?
Wednesday, June 16, 2010
Whatchu Say
http://www.youtube.com/watch?v=CEEZFJKfG8Y
my fave video of this song :)
one thing i love most is people. i love talking with anyone and everyone. i thrived on interacting with people.(you dont have 1400+ friends on facebook by being shy! jk) this quote from the movie waking life, was in one of my papers from senior year,
'Life was raging all around me and every moment was magical. I loved all the people, dealing with all the contradictory impulses - that's what I loved the most, connecting with the people. Looking back, that's all that really mattered.' but now, i couldnt connect with anyone. i felt and still feel so separate from anyone ive ever met and all the other patients ive seen, because i totally lost the power to speak. you have no idea how devastating and frustrating it is to be trapped inside your head, to have so much to say but cursed with silence. the ability to speak is so human, so i felt less than human... much less. i had to let go of any power i had in this world, and just let the world work around me. even though i knew the answers to everyones many questions like 'how do i work her wheelchair' or 'wheres her tshirt', i had to accept that the world would function without my answers. i had to finally learn to find humor in it all. i had to create inside jokes with myself with these situations. for instance, some of you might remember my infamous tailgate shirt that said, 'having more fun than you since 1984.' i kept this shirt solely for the memories, i never planned on wearing it again. but somehow, it got mixed up in the hospital in the pile of tshirts i was to wear everyday. so a few times a month, i would show up to therapy in my gross, awkward tailgate shirt. i could only laugh to myself at the awkwardness, i couldn't tell anyone i wasn't supposed to wear it. i couldn't tell anyone because a) i couldnt physically tell them and b) if i tried to explain duke tailgate to anyone they wouldn't understand! so i learned to just swallow the things i wanted to say. but then i started saying some sounds and some people could understand me at times. One time, my excitement overcame my better judgement. i was usually good at keeping my mouth shut...usually. one day, my nurse came in laughing hysterically and said she and the other nurses were talking about going to a strip club. i excitedly opened my mouth and tried to say, 'i have been to one!' (yes mom and dad, ive been to a strip club, but it was only for a few minutes and was totally awkward). but my nurse thought i said, 'i was one!' the misunderstanding got so out of hand that she thought I had the job on weekends to pay for my duke education. i then spent the next 40 minutes trying to get her to understand the words, 'no i wasn't one.' this was one of the most frustrating and humiliating moments of my life, but in retrospect, its pretty hilarious. i have to admit, the experience has scarred me for a while, because i won't even attempt to talk to new people or people i don't already know will understand me, to prevent any misunderstandings. so though i don't really talk to new people now and my voice is still far from normal, i am slowly starting to connect with people. looking back, thats all that really matters anyway.
my fave video of this song :)
one thing i love most is people. i love talking with anyone and everyone. i thrived on interacting with people.(you dont have 1400+ friends on facebook by being shy! jk) this quote from the movie waking life, was in one of my papers from senior year,
'Life was raging all around me and every moment was magical. I loved all the people, dealing with all the contradictory impulses - that's what I loved the most, connecting with the people. Looking back, that's all that really mattered.' but now, i couldnt connect with anyone. i felt and still feel so separate from anyone ive ever met and all the other patients ive seen, because i totally lost the power to speak. you have no idea how devastating and frustrating it is to be trapped inside your head, to have so much to say but cursed with silence. the ability to speak is so human, so i felt less than human... much less. i had to let go of any power i had in this world, and just let the world work around me. even though i knew the answers to everyones many questions like 'how do i work her wheelchair' or 'wheres her tshirt', i had to accept that the world would function without my answers. i had to finally learn to find humor in it all. i had to create inside jokes with myself with these situations. for instance, some of you might remember my infamous tailgate shirt that said, 'having more fun than you since 1984.' i kept this shirt solely for the memories, i never planned on wearing it again. but somehow, it got mixed up in the hospital in the pile of tshirts i was to wear everyday. so a few times a month, i would show up to therapy in my gross, awkward tailgate shirt. i could only laugh to myself at the awkwardness, i couldn't tell anyone i wasn't supposed to wear it. i couldn't tell anyone because a) i couldnt physically tell them and b) if i tried to explain duke tailgate to anyone they wouldn't understand! so i learned to just swallow the things i wanted to say. but then i started saying some sounds and some people could understand me at times. One time, my excitement overcame my better judgement. i was usually good at keeping my mouth shut...usually. one day, my nurse came in laughing hysterically and said she and the other nurses were talking about going to a strip club. i excitedly opened my mouth and tried to say, 'i have been to one!' (yes mom and dad, ive been to a strip club, but it was only for a few minutes and was totally awkward). but my nurse thought i said, 'i was one!' the misunderstanding got so out of hand that she thought I had the job on weekends to pay for my duke education. i then spent the next 40 minutes trying to get her to understand the words, 'no i wasn't one.' this was one of the most frustrating and humiliating moments of my life, but in retrospect, its pretty hilarious. i have to admit, the experience has scarred me for a while, because i won't even attempt to talk to new people or people i don't already know will understand me, to prevent any misunderstandings. so though i don't really talk to new people now and my voice is still far from normal, i am slowly starting to connect with people. looking back, thats all that really matters anyway.
Tuesday, June 1, 2010
and i will try to fix you...
so life in the hospital was pretty lonely. my friends came as much as they could, but it was mostly on weekends. but i did spend hours everyday with a few people who were about my age. i listened intently to these people's problems and these people were there to celebrate my victories. i really got to know these people, and though i couldnt talk, these people had gotten to know me. these these people were my therapists and nurses, and they had become my friends... and they wanted to fix me. the other patients were scared to talk to me because i looked depressed and helpless all the time, and i was like a ticking time bomb, i could explode into tears at any moment. so im sure i wasnt the easiest patient to face at first for even my therapists and nurses. i couldnt even do ANYTHING in therapy. i had an awful bite block, so i couldnt do anything in speech therapy, and every muscle in my body was paralyzed, so i couldnt do anything in physical therapy. but they always approached me with a smile (and some joke about duke!) i couldnt talk to them at all, i couldnt even smile back at them, but somehow, for some reason, i think they liked me...they knew little about me, probably what they could gather from the pictures in my room, but what was most important was that they fully understood what happened to me. they understood that though my entire body didnt work, my mind was as sharp as a knife. they understood my progress wasnt measured by how much i could stand or walk, but by the minuscule advancements of activity of random muscles. they understood what all i was going through, because they had dealt with somewhat similar patients. they somehow understood me and that was what i desperately needed in people, or new friends. i had a hard time trusting new people, but i trusted them.... i trusted them because my nurses were dedicated to making everyday a little happier. i trusted them because my therapists were dedicated to making me a little better everyday. but most of all, i trusted them because they were dedicated to making...miracles.
Thursday, May 20, 2010
Some Kind of Wonderful
i watched movies all the time in the hospital. they served as a distraction, an escape from the horrid reality, and they made me happy, well, most of the time... so one day, i was watching the movie sex and the city 1, and at the end when (spoiler alert) big proposes to carrie with the pretty manolos in that gorgeous, giant closet, i started sobbing. but i wasnt crying like i normally do with sappy movies, i was literally sobbing. carrie finally had her happy ending, and i wanted mine. it was/is so incredibly unfair. i think becoming paralyzed in any way is the worst fate imaginable. i completely lost the life i once had. taking away something someone had that was essential to every part of their life is brutal. there is nothing happy about it and no real ending. now if i had been unable to use my legs from birth, i wouldnt know what it feels like to run past the duke chapel or feel the thrill of dancing on stage, so i couldnt miss it. you couldnt take a life away from me that i never had. but i did have a hell of a life. now i cant even go to school or see my friends much. and there is definitely no running or dancing. some might say being diagnosed with a terminal illness is worse. while it definitely is hard, at least there is an ending. this is like a never ending struggle where you are cursed to remember eveyday the life you once had. Dante once said, "There is no greater woe than in misery to remember the happy time." So memories can sometimes lift you up, while other times they bring you down. But just when you think your life is doomed, happy things can surprise you. I want to leave you all with a story that was really powerful for me. Its the best kind of story, it's a love story. It's about a love that is unbreakable, like Devdas and Paro, brave like Romeo and Juliet, and happy like Big and Carrie. Okay, so once upon a time, there was a boy and a girl. They met in high school, and started dating. They dated for about a year, but things didn't work out, so they broke up. Then about a year later, he had a terrible accident. He broke his neck, and was paralyzed from the neck down. He was in and out of the hospital for seven years and had undergone many surgeries. He remains paralyzed, but has some use of his arms. About 2 years ago, after the boy and girl hadn't seen each other in 8 years, they saw each other at a bar. They started talking and now 2 years later, they are madly in love and on the way to a happy marriage. They realized they were soulmates. I have never met them, but I'm sure they are both incredible people, brave enough to embrace their love, strong enough to hold on to their love, and smart enough to see what fate had in store for them. I realized that happy things, no, wonderful things can happen to people who have had bad strokes or streaks of luck.
Friday, May 7, 2010
The Sun will come out tomorrow
WHY DID THIS HAPPEN TO ME?!?! after the question of 'what' came the question of 'why' which will probably take up a few posts since i still havent found a proper answer. since many people find answers in religion so lets start there. i was a pretty religious person, and my moms family was the most religious family you would ever come across, so obviously i was kind of too. i had been to temples all over the world, went on various pilgramages, fasted ever so often, bathed in the ganges river (ew who does that?! haha babu), and prayed everyday for me and my familys health and happiness. now, what good did any of that do? i received the opposite of my measly request. now lets look deeper at the beliefs of hinduism. so i think most people of every religion follow the rules of karma, if you do whats right and fulfill everything asked of you, good things will happen to you. so thats what i had lived by, good things happen to good people and bad things happen to bad people. so i was a good daughter, a good sister, a good hindu, a good girlfriend, a good friend, a good student, a good person. i was all set to live a good life. but then i had to learn the hard way - bad things happen to good people. since hindus believe in reincarnation, it has been mentioned that maybe im paying for something from my last life. well wow, i must have been someone terrible in my last life, someone like lord voldemort! but really, i cant think of anyone terrible enough to deserve this fate. another popular theory is that of the evil eye. i hate this one. it basically says the jealousy from other people can bring bad luck to good things in a persons life. call me naiive, but i believe people are inherently good and cant cause bad things in others lives. the last theory is that maybe god let this happen, but is now helping me on this road to recovery. but this road has been paved with pain and suffering so far. i may have great people in my life, but they cant be there when push comes to shove. i dont see the merciful hand of god in any of this, yet. so, you can understand my frustration with this whole religion thing. so as you can imagine, god and i arent on speaking terms right now. the only thing i do religously is watch gilmore girls everyday and the closest thing i have to a god or someone i listen to is uncle jesse, my brother, or nisha mukherjee. when all else fails, the one person that i can still trust, that i can still follow, that i can still listen to, is myself. so welcome to the religion of harshada. we have no rituals and no rules, no prophets and no gods, no bibles and no churches, just one, little belief that gets me through everyday - though today might be terrible, the sun will come out tomorrow.
Thursday, April 29, 2010
More than words
'what the f?!?'' was the one question that was constantly haunting my mind. i had no idea what was going on, what happened in the past, and what would happen in the future. so i wanted answers. i was hungry for answers. but i wasnt getting any. (the truth was no one really had any answers). so listened so carefully to the prized few words of my doctors, nurses, and therapists. i held onto every word, tried to read between the lines. sometimes i even would feel hopeful or not based on their tone or attitude. like i had one doctor who was saying positive things, but he kept saying 'hopefully' in a pessimisstic voice, so i cried for hours afterward. there were some times when no one could say anything right., but every word affected me, good and bad. doctors, nurses, therapists, and anyone in the health field needs to not only recognize the huge honor that comes with the territory, but the huge responsibility you undertake. your patients are in extremely vulnerable positions, at the mercy of their illness that they dont understand, so they look to you for answers. your words hold so much power and can either make or break your patients. ive come across doctors and nurses of all kinds-some who were just awful who talked to me with insensitivity and pessimism, some who were insensitive and talked to me in baby talk, some who were uncomfortable and talked to me slow and loud like i was dumb (im no albert einstein, but im smart dammit!), and some who were amazing and talked to me with sensitivity and empathy and treated me like a normal human being. and when in doubt, they were positive. as a health professional, i think it takes a strong person to be empathettic,and it takes a brave person to be positive, but its vital. the first 3 months inthe hospital, no one really said much openly positive things. there was so much unknown, so people just didnt say anything. but then, when i started regaining some movement, the whole atmosphere changed. everyone around had a happier attitude, a more hopeful tone. everyone was so excited to see what moved next. one morning, after i had regained at least one muscle in all my extremities, my resident was checking on me, and her next eight words changed my life forever..'WOW. you would be a great PM&R doctor!' (PM&R - physical medicine and rehabilitation) i was so touched she thought i could be good in her profession, but what really empowered me was the earth shattering thought that i would one day be healthy enough to be a doctor! the power of those words could last me a lifetime. i thought all my hopes and dreams had been destroyed with the stroke, but now i had a bigger and better dream to believe in. i already knew my family and friends believed in me, and now with my doctors believing in me, the sky was the limit. now, i just had to believe...
Thursday, April 15, 2010
nada fue un error
'nothing was a mistake' btw - i dont think many of you will like reading this, but read it through. they say a stroke in a young person is worse than death. they also say having 'locked in' syndrome is like being buried alive. i had both, and i would describe that as being tortured to death daily and not dying. i often think back to the day of my stroke, what if i had died then? yes, it would have saved me months and probably years of pain, suffering, and humiliation. but it would have left everyone around me utterly devastated. i always come back to the fact that i did survive and there has to be a reason for that. but it is really hard to think of that fact everyday. instead, i dont think a day has gone by where i havent thought, 'wouldnt it be better if i just give up and end this pain?' its probably sad to say, but i understand suicide. when your everyday is much worse and more painful than the unknown, when youre haunted in your daily reality by demons, when it hurts, physically, emotionally, mentally, spiritually to be alive, then why not? right? wrong. i may understand suicide, i dont agree with it. (so, dont worry folks, im not going anywhere. and i couldnt physically get to the top of a building even if i wanted to! but thats another story). i think suicide is the most selfish thing you can do. you would need permission to leave from every single person whos life youre a part of, and i dont think thats possible. i think it takes an extraordinarily strong person to get up and face those demons everyday, but, i havent had to be that strong, because i have had a whole army of people (and cranes) being strong for me. i remember back in medical school, on my medicine rotation, we had a patient who was on the verge of death. he had a cancer that was taking over his body. he was enduring so much pain and suffering to stay alive. he said he couldnt just give up, because he considered that suicide and that was against his religion. the difference between me and him and the reason why i survived that awful november day, is the hope that i will one day, have a better life. i think i dont have the foresight (or the height) to see over this mountain, through the smoke, to the paradise ahead, where i have a happy life. so imagine this vision and believe it for me, because sometimes, most of the time, i cant see it.
Wednesday, March 31, 2010
living on a prayer
'dont worry, she will be fine in two months.' these were the outrageous words that were told to me by family members everyday. these were the words meant to comfort me and ease my mind, but instead, they enraged me. these were the impossible words that had absolutely no reason or logic behind it, nor any explanation along with it. but, these were also the words that saved my life... my family was told this in late december from someone they trusted and respected. and thats all they needed, they were convinced, i was going to be fine by the end of february. so everytime i cried, everytime i felt hopeless, they tried to console me with these words, but these words only made me cry more. i hated hearing them because they were so wild and farfetched and quite impossible. these words made absolutely no sense and they werent based on anything real. i was so angry that people could believe arbitrary words so blindly. i wasnt only angry, i was also so jealous. it seemed so easy for them to just believe. my mind could be at peace if i just believed, instead, my scared, curious mind was destroying me. but a teeny, tiny part of me wondered what if it were true?!? if everyone in my family kept repeating these words confidently, why wouldnt they be true? the thought was a tease, but it was an exciting thought. it would be magical, miraculous, amazing to have my life back. that little, tiny part of me gave me hope, enough hope to get me to february. january came and went and by mid february, i was still pretty much still paralyzed. maybe there was slight movement in my neck and left arm, but there was nothing 'fine' about me. i knew this 'prophecy' couldnt come true, but still that little part of me, prayed and hoped for a miracle. but there was no miracle. it was february 28th, and i wasnt 'fine' at all. but something magical HAD happened. in the last couple of weeks, my therapists had discovered more movement. i could move some muscle in each one of my limbs! it was all coming back to me now, i knew it, i felt it. so maybe i wasnt technically 'fine', but now, i KNEW one day i would be. one day, someone will tell me, 'dont worry, you will be fine in two months,' and i will. i guess thats why they call these things a leap of faith. its a leap where there is no net of logic and reason to break your fall, you can only leap and hope your feet finally hit the ground, or in my case, your feet finally...moved.
Sunday, March 7, 2010
you wont be lonely, even if the sky is falling down
love vs. hate, loyalty vs. jealousy, empathy vs. envy... these were the battles going on in my head every second of everyday. thats what i was struggling with whenever i encountered anyone - family, friends, nurses, doctors, therapists, strangers, EVERYONE. instead of loving them for being there, i was hating them for their ability to talk to me. instead of feeling a sense of loyalty to them for staying by my side, i was jealous of them for being able to walk into my room. instead of empathizing with their problems, i envied them for having normal problems. these feelings didnt spare anyone. if youre reading this, chances are, i hated you too. these feelings would eventually go away, after considerable mental effort on my part to help the good feelings overcome the bad. sometimes it would take seconds, minutes, hours, sometimes days. part of me did genuinely love everyone around me, but part of me did hate them for being so normal and by merely existing, they reminded me how alone i was. u could say my love was like a battlefield. i felt so alone because no one could possibly understand what i was going through, no one could truly understand how i was feeling, no one could really understand my problems and sufferings. i was completely alone in this journey and seeing 'normal' people around me reminded me of that. i remember around valentines day last year, i had to keep a straight face while people were telling me their fabulous, romantic plans or complaints about their love life, when really i was dying on the inside. i felt jealous, useless, down, alone. i didnt want to feel those awful things anymore. i had to convince myself, though it is an ongoing process, that i was, in fact, not alone. though they couldnt fully understand my struggle, i had so many loving, caring people around me who were doing all they could to be there for me, and for now that would have to be enough. now when i see someone, im reminded that even if the universe is falling apart around me, even if the world as i know is no more, even if the sky is falling down, im not alone, i have you.
Tuesday, February 23, 2010
hold my hand
i remember back in the first day of anatomy lab, it wasnt the eyes or the face of the cadaver that caught my eye, it was the hands that bothered me most. they looked so human and lifelike, but they were eerily limp and lifeless. i was reminded of that image when i looked at my hands lying still and motionless on the bed. its as if they were dead. they didnt even seem like part of me because no matter how much i focused and concentrated on them, they remained motionless. i remember holding the cadavers hand, it was so surreal, it looked so real, but it didnt hold me back. that is how i felt all the time. whether it was my nurse, my doctor, my mom, or my friend, i felt the warmth and support as the held my hand, but i couldnt hold them back. i felt dead. i woke up a couple mornings so incredibly excited because my dream, that felt so real, was about being able to text again! (only i would have a dream like that!) but every morning i would wake up, look down at my hands, and realize they were still dead. something needed to change. but i had been in the hospital for over two months now, and nothing had really changed, so they started preparing us to leave. they started teaching my mom how to feed me medicine through my PEG tube and teaching my dad how to transfer me with the massive hoyer lift. i cant even describe to you the anger, humiliation, and horror i felt. i had told myself in the ICU that i would rather die before i was a burden at home. this was all unbearable. but then, my left arm magically woke up. i woke up one morning with a weird feeling i had never felt before. i felt the tiniest bit of power, strength, activity in my left arm. my therapist sarah confirmed that yes, my triceps muscle in my left arm was awake, and i knew the other muscles in my left arm would come back. i was waking up, coming back from the dead, and i was happy for the first time in awhile. still, sometimes i wonder what it would it be like if I were dead and still sometimes, i feel like im dead, but with this mind racing, and this heart beating, im definitely still alive, and now, if you hold my hand, i can hold back.
ps - 'things will get better if you just hold my hand' (right jay?)
Thursday, February 11, 2010
stand by me
That one night in the ICU I was depressed, alone, and scared, but then I heard Ruchi's voice and everything changed. I realized that there were other people out there who cared for me. I was reminded that there were other people to look forward to seeing. I remembered I actually had friends. i could probably write a whole book about how awesome my friends have been, but i will first share with you all some of the stories from the first few months. so this first story has to do with the title of this blog. so pretty much every night laju and i were in boston, we sang this song at the top of our lungs. we loved this song( and even jokingly promised to sing it at each others weddings - btw we both have awful voices) not only for the lyrics and beat, but quietly we knew it was what we meant to say to each other. so, the night before my 24th birthday, when i was still in the ICU, my family decided to allow friends to see me starting the next day. so baldeep got in touch with two of my friends, rajiv and laju. when baldeep told laju that she could come see me, she started crying. before he could figure out what she was saying, she had already booked her flight for the next morning to come see me on my birthday. 'no i wont, be afraid, just as long as you stand, stand by me...' it was friends who kept me going everyday. through countless letters, visits, cards, and flowers, i was reminded that they were there for me.ruchi came almost everyday, to talk about life and love, or to watch anoop desai on american idol, or to just show me her latest shopping. my med school friends, led by nisha and rajiv, came almost every weekend and always brought kind words and good gossip. some drove a terribly long way to the hospital in charlotte like raj and ankur, and some even flew, like megan and chaya. i kept telling myself i was SO lucky to have friends who cared that much. i was humbled and honored by getting visits from people who barely knew me, like helen, to people who knew me so well, like my first ever friend cliff.i also got some of the greatest inspiration from letters from the strongest person i know, rajul, and some of the greatest insight from the biggest clown/ most faithful friend i know,amit. I wish I could recognize everyone, but I hope you all know that all your loving visits and amazing words meant so much to me. u know the song, 'just call my name, and i'll be there.' well, i didnt have to call anyones name, they were there all along, standing by me.
Wednesday, February 10, 2010
64 - 54....
i think that means the music is definitely back on!!! (sorry kunal!)
enough said.
ps - GTHCGTH
enough said.
ps - GTHCGTH
Thursday, February 4, 2010
falling slowly
i have a secret. ive actually had this secret for most of my life until this terrible injury.i couldnt tell anyone because i thought i would jinx it. i wouldnt even let myself feel it because i thought it would make something bad happen. but its about time i let this secret out. my life was perfect. so magnificently and wonderfully perfect. and i was happy. so unbelievably happy, everyday. of course i had normal ups and downs, but as a whole, i was truly happy. hard work and a LOT of sheer luck kept me floating on cloud nine. things happened that i didnt even imagine, but i was always so thankful. ok i know im being vague, so i will share with you all some events from the last 10 years of my life, so you understand the dialogue, though i feel very odd and awkward telling you all this. so i think my peak began my senior year of high school. i was senior class president, voted to homecoming court, was at the top of my class, and graduated with a choice of going to harvard, princeton, or duke on a full ride. it was seriously unreal. everyday i was like 'really? is this really happening to me?! then i went to duke where i had the time of my life (just ask laju, arup, ankur or pretty much anyone at Duke from 03 to 07!) and i graduated summa cum laude and phi beta kappa, whatever those letters mean. then i was off to medical school at duke, which was difficult, but i was absolutely loving every minute. i was on my way to fulfilling my dream! i had come so far, nothing could stop me now, right? i had a wonderful family, Baldeep - my unbelievable boyfriend, amazing friends, good grades, a fabulous apartment, i could keep going, but basically i was on top of the world. but, i knew my perfect, little world couldnt last forever. i knew the luck i had for 23 years was bound to run out. i had a deep, dark feeling something bad would happen. something bad, not at all something terrible, awful, atrocious. i was thinking something along the lines of carrie bradshaw getting mugged and getting her purse and manolos (shoes) stolen! never in my wildest dreams would i ever imagine something like this happening. so i leave you all with a question that i have been going back and forth on, is it a crime to be truly happy?
Sunday, January 31, 2010
for sarah and dave!
(ok quick pause from the story) probably only other therapists would understand the significance of this, but on thursday, i walked the length of the parallel bars! dave was at the back helping with my trunk, sarah was at the front helping at my knees, and brandi was letting me squeeze her hand. sorry sarah for my uncontrollable hands that kept hitting you! it took almost an hour, and i was pretty parched after, but it was awesome, i'll take it! one step at a time...
Wednesday, January 27, 2010
the day the music died
i remember this terrible day like it was yesterday. it was a cold, winter day. by the end of the day, my smiles had disappeared, and my laughter was gone, and all that was left was depression. it was an awful day, a horrible day, a disappointing day... it was february 11th....the day duke lost to carolina in cameron indoor. the whole morning of the game, i proudly wore my 'duke cameron crazy' shirt, which definitely stood out amidst an overwhelming sea of carolina blue. and EVERYONE had something to say to me, because i was the only duke fan around for miles. so other patients, therapists, doctors all talked smack to me, knowing quite well that i couldnt speak and defend myself or my school. how insensitive! typical unc fans...(kidding! it was all in good fun!) i was relieved to see dr. m that day, sporting his duke tie, the only other duke apparel i saw all day. i had to watch the game in my gross, dingy hospital room, on a tiny, ANCIENT tv-it was a miracle everytime it managed to turn on. i had always associated this game with being with good friends and cheering our hearts out. whether we were actually in cameron watching it ( UNBELIEVABLE experience btw) or at a bar with a with some duke fans (shiv would scare away any unc fans) or if i was stuck in the sub-basement of the library studying with my best friend laju and we were forced to watch the game on a laptop on espn.com, the game always came with great memories. this time, though my brother had to work early the next morning, i begged him to stay because i couldnt bear watching it alone. in retrospect, we would have been better off not watching it! i remember pleading with the basketball gods, saying that since nothing had gone my way this year, maybe they could help duke win. they clearly had NO sympathy for me because we lost both games and carolina went on to be national champions! the day after the game, since i lost a bet with my therapist, i had to wear a carolina hat! who knows what will happen this year... all i know is that even though the nurses must have pricked me over a million times, and my blood always came out bright red, i still swear i bleed duke blue...
Friday, January 22, 2010
play that funky music white boy
you all must be wondering why every title of my blog entries is the name of a song - well there IS a reason for that.the ONLY part of my body that wasnt affected by this stroke, the only part that remained completely untouched, the only part that was functioning normally, that part was my ears.my eyes had lost their peripheral vision, my nose was hypersensitive to scents, and obviously, every muscle in my body was totally ruined, so that left my ears. they gave me my most powerful possession - listening. when i couldnt see the world around me or talk to the world around me, i could listen. and i didnt miss anything. from the whispers of the wind, to the conversations across the room, i heard it all, and ever since i remember opening my eyes in the ICU, there has been music. through every, single memory i have, i always remember there being music. when my eyes werent strong enough to watch tv, my family would have to leave me all alone in the ICU, where all i could hear were my thoughts, but i was never really alone - john legend, beyonce, a.r. rahman, and countless others were always singing in the background. i also became attached to cd's people had given me like nishas beyonce cd that i must have listened to everyday. then there was pooravs cd, which had all the latest hindi songs so my parents would put it on every chance they got (the cd stopped working after awhile because we played it so much!) then there was howie's unforgettable cd which had everything from songs from love actually to some of jason mraz's songs, and it soon became a favorite of family, friends, and therapists. i loved music because every song carried with it a memory. whether they were songs on howie's cd that were making new, wonderful memories,or songs on a cd my cousin ajay made for me, though i hadnt heard them before, they carried with them his memories, or songs on a cd arup gave me that reminded me of all the great memories i had from college. my ears were tickled by the whispers of the counting crows and maroon 5, my soul was awakened by their lyrics, and my heart was pounding to the beat of the music, because as long as i had my music, i had my memories.
Thursday, January 14, 2010
a whole new world
i thought sleep was hard to come by as a second year duke medical student on rotations but sleep became near impossible as a patient in the hospital. there was a constant stream of nurses in my room all night to give me medicines, water, to turn me in bed to prevent bed sores, or to draw my blood (i do NOT have good veins, so these 'vampires' made my nights painful). i couldnt adjust anything on my own when i was uncomfortable so i had to wake my parents up to do it for me but i had no way of waking them up and no way of telling them what was wrong. lets just say no one got much sleep for months...i loved sleep when i actually got it. i loved sleep because i could dream and when i dreamed, i entered a whole new world. it was a beautiful world where i could walk, i could run, i could sing, i could dance. it was a wondrous world because i could be happy. then, the morning would always come and shatter my world. reality would come crashing down on my dreams. i would have to realize all over again the terrible events that had happened. i wish i had a magic lamp with a genie who could make my dreams a reality, but this wasnt a movie. but one dream actually did come true...i had this one same dream everyday in the ICU, before anything had really happened. i would go over to my neighbors house for dinner. i would sit down in a chair with my plate. when it was time to go, i would try to get up but i couldnt. i was frozen, stuck. i was so terrified because i move, and i was alone. then out of nowhere, baldeep would come in. he would gently pick me up in his arms and take me home. he would save me, everyday. and that was what was happening in real life. with his every visit, with his every phone call, with his every comforting word, with his every smile, he was picking me up, picking me up from the depths of the world, from the bottom of misery, from the pits of despair. he was saving me, everyday, and he is still doing just that...dreaming is still my favorite part of the day. every night, i close my eyes and im taken to a whole new world. there i meet baldeep and we go off to explore countless amazing places. and every morning, i fight the break of dawn, hoping to draw out every last moment of my dreams. if you are looking for me tonight, you can find me somewhere near the moon, with baldeep by my side, somewhere amongst the stars...
Friday, January 8, 2010
man in the mirror
i remember the first time i looked in a mirror, i started sobbing, more than ever before, because i hated what i saw... my mom had made my hair differently and excitedly pushed me to the mirror to see. but whatever was staring back at me filled my heart with shock, disgust, and anger. i wanted to scream, but all that came out was tears. who was that? why did i look like that? was that really me? i didnt sound like myself, and now i didnt look like myself, at all. i didnt recognize myself, do you know how scary that is? i dont know what i expected to see. i was paralyzed from head to toe, so that included my facial muscles. so all my facial features lacked shape and definitiom. everything looked different. i was so tired of people telling me i looked pretty, because lets be honest- i looked paralyzed, not pretty. maybe i looked better than they expected, but i am scared to imagine what they expected.. my nurses would always come in my room and look at my pictures from my former life that were strewn around my room. 'she had to have been a model!' 'she must have won a beauty pageant or something!' they would say. they were huge compliments, but they werent for me... they were for her. the HAPPY, carefree girl in the pictures who now felt like a distant memory... another life. shes so different from what i looked like now. she has perfectly straightened, lovely hair; i had an unmanageable mess covering my head. she wears cute, stylish clothes; i had to wear gross tshirts and sweatpants i used to only wear to bed. she wears high heels; i wear sneakers, shes cheer captain and im on the bleachers (kidding!) but seriously, i never wore sneakers in public, well except the gym. she seemed so put together and classy while i felt like a mess and classless. i always had drool on my face and food on my clothes. and i always had to wear my horrid, THICK glasses that i had hated so much, i rarely wore them before. ew. i wanted so badly to be that girl in the pictures again. but i have realized, i will never be that girl again, no matter how much i improved or how normal my life becomes. she had this unwavering optimism in her smile, this pure naivete in her eyes, and this incredible innocence in her face. but my optimism had been ripped away, my naivete was no more, and my innocence had been forced out. i was forever changed, on the inside and out. im older and wiser because of this all, with a few grey hairs to show for it. i learned my lesson, i dont look in mirrors anymore. but if i catch a glimpse of my reflection, i have to do what i do 1000 times a day, everyday - i have to remind myself that under this useless body, beneath these limp, fragile limbs, beyond this weak, soft voice, it is me, maybe a less bright-eyed version, but it was still me.
Monday, January 4, 2010
una palabra
(spanish for 'one word') the most frustrating, horrible, difficult part of this whole mess was being unable to communicate with the world around me. i just had to let go of all responsibility of the situation around me. the first few weeks, my only response was yes (eyes up) or no (eyes down) which made conversations short, to say the least. then we tried using a communication board. letters A - F were in the upper, left corner. letters G - L were in the upper, right corner, letters M - S were in the lower, left corner, and the letters T -Z were in the lower, right corner. i was to look at the cluster of letters that had the letter i wanted , and whoever was holding the board would go through the letters until i said yes with my eyes. easy, right? WRONG! the board wasnt useful at all at first because my eyes couldnt move much so they couldnt reach the four corners. so when i was asked who my favorite character from gossip girl was, i had to choose the 's' for serena because my eyes couldnt reach the corner with the 'b' for blair (who was obvi my fave, right alks? sorry set!) after my eyes improved and i could use the board, it was painstakingly tedious and it took 10 minutes to spell out one sentence. but for now, it was the only way i could communicate so i got used to it. if only i had my voice back, everything would be so much easier, i thought. but it had been weeks and i was told there was a possibility it wouldnt come back...i started mouthing the alphabet constantly,imagining the sound of each letter rolling off my tongue. but in reality, with each letter there was silence. one day i was crying in my room and my nurse came running in and exclaimed, 'i heard her cry.' my mom replied, 'yea sorry! she will be fine.' my nurse responded, 'no, this is the first time i heard her cry!' there was a voice behind my tears, and a few days later, my laugh too! this was great but i needed a voice behind my words. a few weeks later, my mom and i were in speech therapy with emily. i was trying to get my moms attention, so i tried mouthing the word 'mom,' though i felt like it was pointless because it was way too subtle a movement to get her attention. i started to mouth the word 'mom' but to my surprise, a soft, weak sounding 'mom' came out! i had a voice! my mom and emily screamed with joy and disbelief.finally! but my progress was bittersweet. i realized my voice RARELY came on, was so difficult to use, sounded nothing like me, and was so unclear and unintelligible. but it was a voice! martin luther king jr. said, 'our lives begin to end the day we become silent about the things that matter.' i did die when i was forced to be silent. but that day, i came back from the dead because i wouldnt be silenced anymore.
Subscribe to:
Posts (Atom)