Wednesday, December 23, 2009
'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!'
Thursday, December 17, 2009
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?
Tuesday, December 1, 2009
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?