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.

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...

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.

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.

juicy

'so is the hospital food as bad as people say?' asked my friend innocently. i felt my heart stop for half a second. i was speechless (ok even if i wanted to say something, i couldnt. but i didnt know whether to look up for yes or down for no). i realized i hadnt eaten or drank anything for weeks! how was i stilll alive? and then i remembered , my PEG tube. i hated the idea that i had one, but right now, it was keeping me alive. it was basically a tube connected from my stomach to the outside world through which i would get my medications, water, and these milkshake like drinks that served as my meals. a few weeks later when i could open my mouth a little, i started practicing swallowing, which sounds easy, but it was pretty hard for me. my speech therapist, emily, started me with lemon swabs. they just tasted like lemon and stimulated random swallows. and then we tried lollipops! strawberry-flavored, simply delicious. then, to increase my swallowing coordination and swallowing strength, i started getting electrical stimulation on my throat muscles. uncomfortable? definitely. but i got used to it because i had to do it everyday for an hour for 14 days. but with the e-stim on, i could actually try swallowing liquids! so we moved onto big things - diet coke! we had to add this starch like powder to thicken it a bit which ruined the taste a bit, but it was still DIET COKE! (because thick liquids are easier to swallow than thin liquids, like water). i remember that first sip that teased my palate and glazed my throat, was the first drop of liquid to tickle my throat in weeks. it was unreal. after i completed the 14 days, it was time for my 'swallow study' which was basically a test to see whether i could swallow different things without 'aspirating' - letting any food/liquid go down the wrong way. i didnt realize how big a deal it was, but i will probably remember that day, january 20, forever. first, i tried swallowing 'honey thick' liquids, and repeatedly, i swallowed it fine! then we tried 'nectar thick' liquids, and to everyones surprise, i swallowed that fine too! we got carried away and decided to try 'thin liquids', but i completely aspirated that. finally, we tried a solid (a puree FOOD!), and i handled that fine too!! so i had been approved for 'nectar thick' liquids and puree solids! basically i could eat and drink again!! my nurse said, 'wow, that made my day!', then my doctor said, 'that made my month!', and then emily excitedly yelled, 'that made my career!!!' i was ecstatic. but i didnt realize the significance of what just happened until dinnertime that night - i actually received a meal tray! my doctor said if i could finish 75% of my meal, i wouldnt have to have my tube feed. i decided that day would be the LAST day i would ever have a tube feed. though the trays were massive, i had absolutely no appetite, i could only handle tiny bites so each meal would take an hour, eating was exhausting, and i was vegetarian on a puree foods diet (EWWW!), i wanted to do everything in my power to not be fed through a tube again. though my tastes arent normal yet (like i dont have a taste for alcohol yet), i was one step closer to singing with biggie, 'birthdays were the worst days, now we sip champagne when we thirstay!'

a long december (continued)

this past weekeend, i had the most incredible birthday possible. i had about 50 wonderful friends, from all the important parts of my life - my childhood, highschool, governors school, duke, and medical school,from all across the country, in my house for a night of laughter and memories. i was laughing til 5 in the morning, and it felt amazing. i kept looking around and thinking to myself, 'wow, im so lucky.' isnt it ironic?

a long december

so let me pause from my story because i wanted to quickly bring up something thats been on my mind and maybe some of yours. so its been a year, actually exactly a year sunday. never did i ever imagine that after a whole year, i would still be in a wheelchair, that i would still be barely moving, and that i would still be barely talking. but never did i ever imagine that within just a year, i wasnt supposed to be alive. so i have MUCH to be thankful for, but much holding me back from being happy with the life ive been lucky enough to lead. the fact that i even can celebrate another birthday is truly a blessing, but the thought of celebrating another birthday 'handicapped' is nauseating...and another christmas... and another new years. this will be a long month, many days to celebrate, but not many reasons that put me in a celebration mood. so you might be wondering, has this all been worth it? if you asked me last week, i wouldve said hell no. 365 days of hell for what? more hell? but if you asked me that today, i would say hell yes. i have done some thinking this week, and i realized that i still have some rare but amazing moments that make this all worth it. like when my brother said something outrageous that made me laugh until my sides hurt, or when setu sang for us my favorite song and her beautiful voice gave me chills, or when the love of my life fell asleep for hours in my lap as we relaxed through a random monday afternoon. in those moments, i was truly and purely happy. i cant remember all the times i told myself to hold onto these moments as they pass. granted, before my injury, those moments were every moment, and now they are more rare but they are still there. maybe this month and this year will have more of those moments. maybe this year will be better than the last.... now the question is, 525,600 minutes, 8,760 hours, 365 days, or 1 year from now, where will i be?