Don't Say I'll Do It Tomorrow

                Two weeks ago, I lost my uncle unexpectedly. This was obviously a huge shock, because he didn’t have anything wrong with him. He had asthma, but it was under control. It’s things like this that cause me to take a step back, and reorganize my priorities. I LOVED my uncle. Now a lot of people just think that’s “Oh yeah I love my uncle too.” But no. My uncle was like a second father to me and siblings.  He didn’t have any children of his own, and it was just he and my mom, and so I think after my grandparents died, they really realized that they were all they had in this world at that point, and that only caused our bond with him to become even stronger. I will always keep on my phone the texts from him when I was in the hospital. Now I remember when he would text me in the hospital EVERY SINGLE DAY. And yes at that point I will admit, I thought it was annoying, “Why couldn’t he just call my mom and ask” I thought, because for a while, I was in no condition to talk to anyone. But now, I consider those texts a treasure, which I will never get again, literally.

                My uncle led a pretty spectacular life. He was a state’s attorney for a long time in California. He was also a playwright, a musician, and a singer. His play the Quiet Man Tales, was a hit in Chicago, got great reviews, and then he brought it to New York and even to Ireland! He met Maureen O’Hara, and she blessed his play. No one disliked my uncle, now I may be a little biased, but how could you? Unless you were talking about politics lol. We had such a special bond. I told my mom right after I had heard he died, the thing I will miss THE MOST was sharing my birthday weekend with him. That’s how we have been celebrating my birthday every year for the past 25 years. With my dad and Uncle Frank and me, in a joint party.  And I’m absolutely heartbroken that we will never have that again.

                My uncle had a unique bond with all of his nieces and nephews. He had this unique gift; when he was with you he made you seem like you were the only person in the entire world that mattered to him. It is one of the amazing traits Uncle Frank had that I will desperately miss. Everyone was saying at the funeral, how he was so lucky to have a family that loved him so much, but it was us that were lucky to have him.  There are too many wonderful qualities about him that I will miss, but if I had to come up with a top 5 list, it would be:  His humor for sure, his relatability, his compassion, his gentleness, and his brilliance. He could take an idea and run with it. That’s how the Quiet Man Tales started. He found a book, realized its significance and ran with it. He had amazing ideas and he knew how to turn those ideas into a reality for himself.  

                At the party afterwards, at Trattoria DOC(Come on, we had to showcase the Italian side somehow) I was standing by my dad, who was standing by the bar, talking to the owner of the restaurant mom, who happened to be one of my mom’s oldest friends, they’ve known each other virtually since my mom was born. I was standing next to him, but then I decided to go talk to one of my uncle’s friends. I started walking towards the tables. And then for some reason I stopped, I don’t remember why, maybe it was because there was so many people, it wasn’t easy to move around, but I looked towards the window, and I saw my uncle. He was talking to two people that I couldn’t see, there were two of them. But what really freaked me out more than the fact that I could see him, came a few days later.  After I told my mom she had asked me what was he wearing, and I told her. And then later cleaning out his apartment, she found those pieces of clothing. He didn’t look at me, he was just standing there talking to two really tall people, and drinking “something brown”, as he called it. It was literally just a split second, I turned my face that way, saw him, wasn't expecting it and so I turned my face back right away, tried to quickly contemplate what I just saw, then I looked back for him, and three other men were standing there. I told my mom later sort of doubting what I had just seen, and she said I came up to her white as a ghost. And then when she told me later on that she found the exact clothes he was wearing, I was convinced and couldn't have been more thankful.

                My uncle was the greatest man ever! He was a States Attorney for many years, and he was a playwright and his play The Quiet Man Tales debuted in Chicago, then went to New York, then it even went to Ireland, had accolades by Maureen O’Hara, and became quite popular over there. He had another play in the works, and my mom is going to try her best to get that produced in his memory. He had finished the final draft, and we found it while cleaning out his apartment. He was always the first one to text me when I was in the hospital, EVERY DAY to see how I was doing, and he always prayed for me, and apparently as I learned the other day, talked to his neighbors about me lol. But the thing that touched me the most when we were cleaning out his apartment was I had found a one page paper that I had written in the third grade. It was entitled Francis J. Mahon Jr.  A Dream Come True. It was about my uncle, and how he had wanted to become a writer since he was about 4 years old. And how he had made that dream come true for himself. And while I was reading that paper, I was remembering what the assignment was for. It was supposed to be a paper about our hero. And he definitely was high on the list. But what touched me the most was the fact that he kept it all these years. And since I’m absolutely positive he’s still hanging around, I just want to tell him, “I Love you so much Uncle Frank! You are the best uncle ever! I will miss celebrating my birthday with you more than words could ever express. But I know you will always be watching over me. Xoxo Tape Girl

Today is a Gift. That's why they call it the Present.

          Today is it. The day I never want to get here but as we all know those days all come around eventually. But today is the day…The day I had the stroke that stole my ability to speak, walk & basically do anything that involved fine motor skills; the worst thing ever for a 17 year old girl, who was just becoming comfortable in her own skin. So today, exactly 9 years ago, I was basically in a self-induced coma, they finished the surgery at around 4 o clock in the morning. So right now 9 years ago, I was chilling in the PICU knocked out…Throughout the past 9 years, I had thought that everything was taken from me because of one very late night decision which I will get into later, but what I’m trying to say, is everything about this day had a negative connotation. I had every emotion in the book towards this situation, anger, sadness, loss but never happiness, until now. Because it was now that I was beginning to realize and accept that it was not just going to disappear, & I was wasting a lot of my time & energy saying “What if” & “Oh I wish this never happened.”

          As time goes on, I’m remembering more & more of that hospitalization. I couldn't remember any of it for a while; & I’m not sure if that was just a survival mechanism, but I’m remembering more every day and slowly regaining grip of my past that I felt I was so out of touch with.  It was like an invisible veil, that I could never seem to grab; & I don’t think that’s a coincidence; I’m now seeing, that I wasn't ready to know it all just then. Everyone hears my story & before I’m even finished they tell me how sorry they are. But what you don’t see is I’m not anymore. I can finally smile about it. I know it’s sad, and I’m not pretending it isn't, but what I've gotten out of it, I feel, is so much more important than what actually happened. When I started to let my guard down, I started realizing that when you open yourself up to something you deem as bad, you open yourself up to the many lessons you can & will learn because of it.  I've chosen to look at it as if I've been given the ultimate opportunity; rather than looking at it as if the doctors took my life away from me. You never think about those things you learned as a baby, because you don’t know any different & I've been given a second chance, to regain the skills I learned as a baby/ very young child, but to learn them through the eyes of a young adult. Only then can you learn how essential these things are to living your daily life. You never think about how playing a scale on the piano without stopping could cause you to praise yourself so much, or how saying a complete sentence without stopping or picking up cheerios one by one until you've picked up 100 of them & placed them into a bowl or even how typing a paper is essential to living your everyday life. It’s an amazing feeling to know I have been able to relearn everything.

          Some things you can never get out of your head no matter how hard you try. But maybe that’s not such a bad thing. Some things my mom has had to tell me but other things are stuck in my memory forever. I remember, I went in through the ER for severe pain, & my doctor had mentioned trying the 3vc, but only if my ventricles got big enough accidentally, because he had seen what blowing up my ventricles artificially on purpose did to me and he said he was never going to do that again. My mom told me, that on April 6, about a week into that hospitalization, my shunt malfunctioned & my vents got HUGE. Perfect for the surgery. But my mom said he should have never done it without doing an MRI first because he knew that my brain anatomy was extremely unusual, but he seemed to make it look like I needed it right then or something terrible was going to happen. It was around 10:30 at night, & he said it could take anywhere from 8-12 hours.  So when my mom saw him coming out of “the doors” at 4:30am she was surprised. He said, “Her 3^rd ventricle was very close to her brain stem, so we weren't able to make the bypass as big as we wanted, BUT we were able to make it. But that’s not the problem. My parents & brother just looked at him with anticipation. He continued with she had a stroke & she can’t speak or move her right side. My parents just sat there their heads basically in their hands. They were completely blindsided by all of this. HE tried to make them feel better by saying, “She has her age on her side, she’s young she’s young, but my parents didn't care. That’s what REALLY BEGAN the 9 year journey I've been on, looking for myself, & realizing that I was here all along. During the next week, I literally slept 24/7 because my body was working so hard to heal itself, I didn't have any energy to do anything else. I still remember, lying in my bed, after the stroke, awake amazingly, & I was just lying in the bed in a semi reclined position. Staring; thinking to myself, “How could this have happened?! My life is over! Little did I know April 7, 2006 was my new birthday. The birth of a new Kimi.  I felt very sorry for myself. Another thing about that hospitalization that is burned in my memory for all eternity unfortunately, is, a week later, I was lying in bed just staring, & all of a sudden I started talking but my mom couldn't understand me. It was like I was speaking a different language. Then they did a spinal tap, & found chemical meningitis & it had therefor broken my shunt which was in my lower back. So they rushed me back to the OR, for the 7th time in 4 weeks. That was when I lost my bed at inpatient therapy.

          I remember about a week after that 7^th surgery, they brought in a walker, & my first thought, was sort of jumbled, but it basically went like this. “This? This is what 17 years of life has come down to? Diapers & a walker? I was just feeling so bad for myself. I still wasn't talking, & I don’t really remember, if I couldn't or just wouldn't. I remember, I did lose my speech for a little while, but I’m not exactly sure how long or when it came back. But even when it did, I wouldn't want to talk, because it took so much effort. So I got into the habit of pointing to things. This drove my parents crazy. Because they knew that in order to regain everything, I would need to do it over & over again, not just take the easy way out and point. About a 3 weeks after that emergency 7^th surgery, I was released to RIC north shore.

          I never really believed in angels, I mean I did & I didn't, I thought they came to you when you needed them, but I never had an experience where I coherently said “I Need an angel”. But now I believe in angels so much, all because of one person. Her name was Robin Browne. Where did I meet her? In therapy at RIC. Why do I think she was an angel? Because she came up to me with her walker, & scars up and down every inch of her body.  Immediately I could tell she had been through something terrible. When she came up to me, she told me how happy she was that there was someone her age finally at therapy. I was sort of shy, because I was embarrassed, & so I didn't say much, but Robin was full of conversation. She started to tell me what happened to her. I just sat there… Dumbfounded. She told me that she had been in a fatal car accident that killed the other two people in the car, & left her with a shattered pelvis, a broken arm, a skull fracture, paralyzed vocal cords & about 6 screws in both legs. She was basically broken all over literally and figuratively. She then went into her family situation. She told me that she was separated from her 5 sisters, because her mom could no longer care for them.

          As time went on in therapy, I continued to think about Robin’s situation. I thought if anyone deserves to be mad at God it was her. I asked one day when my speech was getting better, but in broken words none the less, if she believed in God. She replied in her cute little whisper, because of the paralysis to her vocal cords, “Yes Kimi why wouldn't I?” I said, “Because of everything you told me.” She told me that God doesn't make bad things happen, but look what he did do. He brought me to therapy so she could have a friend. I've never forgotten that, even though she said it 9 years ago. I never saw her again after her last day, & the phone number she gave me, said that the number I was dialing didn't even exist. She may not have been a real angel, but she was an angel to me. She was there to cheer me on when I started talking full sentences again, & I was there to cheer her on when she walked in with a walker, graduated to someone’s hand & then walked out of there, after 5 months unassisted. She was MY angel & I will never forget her.

          Today, I’m a happy, relatively healthy 26 year old, who honestly, would feel weirder if she didn't have nail marks in her  hand when she wakes up every morning because her hand muscles are still so spastic. I’m ambidextrous now, and no matter how weird that makes me look, I don’t care anymore. I can’t really run, and my arm muscles are still quite spastic, but I’m me. And I’ve never been prouder to say that. People always say I’m so inspiring & how they would never be able to handle what happened to me if it happened to them; & I do appreciate the accolades, but I simply tell them, you don’t know that. Yes I could have said, I’m not going to try anymore, but who would that have benefited? No one. So I kept going because the fire within me was hotter than the fire around me. I hope none of you ever have to go through what I’ve been through in the past 9 years & will continue to go through for the rest of my life. So make me a promise. Promise me that you will never take for granted the little things in life. The things you never think of, like how your hand falls when you’re done scratching an itch on your face, or how you can move your fingers with the pen in your hand when you write your name. Enjoy these things, for yourself & for me because I can’t anymore. I will end this post simply by quoting my favorite Harvey McKay quote, “Life is too short to wake up with regrets. So love the people who treat you right; forget about the ones who don’t; believe everything happens for a reason. If you get a chance, take it; if it changes your life let it; nobody said life would be easy, they just promised it would most likely be worth it.”

Who is that girl I see

          I always have loved the song Reflections from the movie Mulan. Maybe it was the fact that there was an Asian princess in the movie that first attracted me to the song. I don't know. But now that song has even more meaning to me. As you have read in past posts, I had a very hard time looking in the mirror after I had the stroke. I just felt that the girl looking back at me was broken. There were so many things that I wanted to do that I felt like I couldn't, because this was holding me back, but in reality I was holding myself back. All I was looking at was the things I couldn't do anymore. I couldn't play the piano to my full potential anymore; something that I had been working for since I was four years old when I first sat down at the piano, I couldn't type at over 100 WPM anymore, I couldn't walk normally anymore let alone run, I couldn't hold a conversation anymore, my personality was turned inside out, all the negatives I saw. What I didn't see, or I refused to see were the positives that came out of this because I didn't believe there were any. I would wake up in the morning and immediately look at my arm, which was mangled in a position that you really would only see in a car crash because my muscles were so messed up, and they expanded and contracted almost as if I had cerebral palsy. My hand was in a fist so tight, there were nail marks in the palm of my hand, and I could only open it with the assistance of my other hand. This happened every night. "Oh you just need a brace", my mom said. Yeah that worked for a while, until I broke it in half literally because my muscles in my hand were and are still so unbelievably spastic.
           I felt like every time I looked in the mirror I would look at my reflection and see this image of who I had turned into, not who I wanted to be. I didn't want to admit that I had changed. I would do things with my left hand, while looking in the mirror and see how easily I could do them, and then see IF I could even do them with my right. I would smile and see how effortless it was for the left side of my face, and how the right side of my face quivered with exhaustion for a few seconds and then I would have to let it rest, and stop smiling. All these things that used to be so effortless, now were and are impossible. How on the computer, it would look like the mouse was having a seizure every time I tried to maneuver it with my right hand. It would just jerk all over the page.  All my friends now say, "Oh I can't really see you any different", etc and to that I say with a shy smile, "I'm kind of glad you didn't know me before then, because I think you would be disappointed. And to that they say, "Well how was your personality different?" And it's not really that it was different, it was just that I was so much more carefree, I had a much more I don't care attitude, yes I was still sensitive and shy, but if you were a close friend I didn't really care how I acted with you. But now I felt like I needed to hide the way I was from everyone, because I was so different.
          I'm now remembering my communications class senior year, and I know you're thinking Communications? I thought you were a science major, and I am, I just wanted to take it. I had no idea how that class would be so informative and trans formative for both my personality and for the way I looked at myself in the mirror. I remember, an assignment we were supposed to do on our personality type, I had taken the quiz and had thought, "I figured" with the results. And then I was looking at the project, thinking, what am I supposed to do? This is such an easy project but so difficult at the same time. But then a light bulb went off in my head, Nobody likes their personality 100%. And everyone has secrets. Where do they hide their secrets? Their heart. So that's what I'll do. I'll make a heart that opens, and I will put all my secrets on the inside. And I filled it with hospital stuff, but then when I was done, I almost had a little panic attack. I thought, "What are you doing!? You don't want to show and tell all of this!?" I can still see myself up there, my legs shaking, about 20 sets of eyes just staring, seeing that the heart I carried open, and wondering what was on the inside. And when I did open it, I sort of looked down as I opened it because I didn't really want to see what their faces looked like. And I heard an audible gasp. I swallowed hard, and started to talk about my project. And after, I sat back down, and everyone was still staring at me, I was thinking, "OMG this was what I thought it would be, why did I do this, but then the next day when I got my teacher's comment sheet, she said, that more than half the class, came up to her after my presentation when class was over(I didn't see them, all I wanted to do was get out of that class as fast as I could) and asked her to give me an A, that they would never be able to do something that brave.
          I wanted to post a video that I saw the other day, it is definitely a tissues video, so if you're a crier, get your tissues ready. This is what my arm would do at the beginning, and it illustrates what I'm talking about so well. This is why I absolutely loved this video.
https://www.youtube.com/watch?v=-jvEniCbOJQ

Life After College

With the New Year already 3 months in, what have you accomplished? What have you "gotten on the phone and told your mom about." Have you done anything worth praising? These are all questions we ask ourselves each day... I'm working at Chicago Scenic Studios right now as a secretary. And I know what you're thinking, not the most glamorous job, or what about nursing school? I know I said I was going to do nursing school, and I still want to be a nurse with my entire heart and soul, I just don't know when it's going to happen.

Seeing the movie Cake was both inspiring and eyeopening.  I had shut everyone out of my life health wise, I never told anyone when I felt bad.  I didn't quite take it to the extreme that Claire did, but I had basically stopped trying. I became complacent in where I was; I didn't like it, but I also didn't hate it; and basically didn't try any harder to move anywhere. It took me until I was stared in the face with some pretty tough realities to make a move. And there I was: faced in 2 months with no health insurance, and a chronic illness. Those are two very big pills to swallow and two things I knew were never going to go away no matter how hard I tried to get them out of my head. My parents didn't want to scare me, but they didn't want to sugarcoat anything either, they knew I had to take this seriously, and they knew scaring me with the facts was the only way I would take it seriously. My parents knew I had everything in me to find a job, but did I? No of course not. I had always thought I was this painfully shy, would rather go to the dentist than have an interview kind of girl. But my parents said and I think it's the best piece of advice they've ever given me in my adult life, "Don't look at it as an interview, look at it as just a conversation, with one of us. The two people you're most comfortable with. And those words have gotten me through some very scary interviews. I can put that one on the shelf as one of the many wonderful lessons I've learned from my incredibly giving, loving parents.

I had always thought to myself, if we thought of ourselves at the age of innocence (which to me is 4-5) and we told ourselves all the "bad things" we were going to do in life, how would we respond? I know how my 5 year old self would respond. If I told myself that I would do "OK" in school I would be not trying my hardest, but not failing, would be given anointing of the sick, upwards of 35 times before I was 21, and almost die on an operating table more than once, I'm sure my 5 year old self wouldn't understand what I was talking about, but I'm also positive that she would say, "Noooooo, because then mommy and daddy wouldn't be proud of me... All I've ever wanted in life, and even as an adult is my parents approval. And then I would look back on my life. Have I done things that have made my parents proud? I know they  tell me all the time, how proud they are that I've made it this far, but I'm still convinced that's because they really don't know what its' like to be in my shoes. I'm not just gonna sit there, and say, "Oh I'm too sick", I did that before, and it didn't make me any happier, but I also know they would never understand what I was going through, no matter how much empathy and holding my hand the whole way they gave me.

I've always known with my condition, it's essentially you're fine until you're not, and when you're not, you need to move relatively quickly. I've known this my entire life, but it's never scared me more until now.  I'm trying to start my life, date, move out; how am I supposed to do that, when I have this black cloud hanging ominously over my head... My parents say I shouldn't wake up every day thinking my shunt is going to fail, and I get that, but every time I haven't thought that, it happens... I've always told myself and others that I would never stop fighting...But was that really true? I am fighting an unbeatable force. A force with no cure and a statistical rate of failure at 50% within the first two years, and statistics all over the board for every year after that. I wondered, would I ever be able to hold down a full time job? What happens to my job, if I have to have surgery? I think about these things a lot more now, than I even did during high school when I was clinically "dying" or college, when I traveled all the way across the country looking for answers. It didn't really hit me until I was out of college and couldn't hide behind my parents anymore; I could no longer hide behind my mask, of how I wanted everyone to see me, because my affect and the work I did at my job depended on it.

Everyone who hears my story and is educated about hydrocephalus asks me the same question, they say, "Oh have you ever had the 3VC. or ETV, whatever they call it and then they start telling me how great it was for them, and how they never thought they would ever live without a shunt until they had that procedure. Part of me hates to crush their great thoughts of it, but the other part of me wants to tell them, that for some anatomical reason it doesn't always work out that way. If you're 3rd ventricle is too close to your brain stem, or if they snip a blood vessel like they did in me, it doesn't always work, and you will be forever dependent on the shunt which has won the award for most undependable human body device. And having this many surgeries in this short amount of time can sometimes leave you in chronic pain. Those are terrible realities but sometimes it isn't your choice, you're just forced to accept it. I remember when I was 11, my mom had said to me, "You probably don't even need your shunt anymore, but they would never take it out, because they don't know". Oh to go back to those simpler days.

My attitude every day when I wake up and realize I'm still on this Earth, is, Make the most of it, God had you wake up today for a  reason. My scars remind me that the past can never be forgotten, but they also tell a story that I would never be brave enough to tell on my own. My arm and leg remind me of the most painful 6 months of my entire life. When you've stared death right in the face, you view life completely differently and I can tell you one thing. That I'm loving my view right now!

Cake Review

Let me first start out by saying, this movie is not for everyone. I didn't think it was for me until about the last half of it. I was in the theater thinking, “Oh my Gosh, this IS everything I didn't want it to be. And I was heartbroken. But then something told me to just keep watching. That it would get better. And it did, and when I walked out of there, I said to myself, “Kimi you need to see this again. Knowing what you've gained from watching this movie once, you can only gain more from watching it again. So I did. And I started to analyze Aniston’s character, and compare her to myself. I thought, “If you had been through everything that she’s been through in this movie, the guilt alone I believe would drive you to suicide. Having to look in the mirror every day, and see the scars that show you that you’re still alive and your son isn't, would just make you crazy. She doesn't know what to do with herself. She feels as though life is no longer worth living. And she has driven out every person in her life that means something to her because she has lost the one person who she felt needed her the most.

          She has lost everything and she doesn't know if she will ever get it back. Or if she even knows how to get it back. And you don't realize the magnitude of the things she's lost until much later in the movie and then it's like a light switch just went off, and you think, or at least I thought, “OMG I get it now.” She has pushed everyone out of her life other than this Angel of a housekeeper, who for some reason stays around, despite the verbal abuse and the constant pressure from her entire family to quit because she sees what everyone else refuses to see, and she won't give up on Claire’s character. But through the movie, you see little looks into the past, of the woman that Claire used to be, through her sense of humor, and you learn that she was a very successful lawyer, she was happily married, she had the American Dream. And then one minute changed her life dramatically. She feels as though she can't move on, because she feels like moving on means forgetting... And as the movie goes on, you learn more and more about her and her life and you realize why she does the things she does. Some parts in the beginning may not make sense, they didn't to me, until I watched the entire movie, and then I thought back, she makes those bad decisions, because she’s looking for love and acceptance in all of the wrong places, because she thinks she has no One. This alone, gives you a peek into her emotional state throughout the movie and her vulnerability that she has placed upon herself.

After watching this movie, knowing full well that it was going to get some bad reviews, I specifically looked to my chronic pain support group that I had joined on facebook. Now let’s be real here, we all know I just joined groups like this to read everyone else’s posts and to read about their coping strategies etc. And I had read a post a few days before that said oh this movie is coming out and I want to see what everyone thought about it etc. And so I read some of the answers, and they were very mixed. As I was expecting. But a lot of them said, “I don’t like how this movie focuses on her drug addiction and not her chronic pain.” Now when I watch movies I analyze them, which is part of the reason I watch them multiple times within the first few days. I thought, “Well, there are many angles at which I can approach this statement. But then I thought about it. Yes it’s true, it only shows her in her support group once, and it shows her taking pills probably a dozen times or more. But if you really watch the movie, from her wincing at each step she takes, to how she has to lie flat in the car, everything she does shows you what terrible pain she’s in. I didn't think they needed to keep telling you. And quite frankly, a lot of the reason she is the way she is in the movie is because of the drugs.

          All throughout this movie you see different people who really care about Claire’s character, try and “break their way through” unsuccessfully. Claire has closed herself off so totally because every day she has to look in the mirror at herself and realize and relive all over again the horror of what she had been through. She is reminded through the physical scars, but also in every step that she takes. I used to feel that way too. I felt like every step I took, every word I wrote, every word I spoke, was another reminder, that I wasn't the same person anymore and was never going to be that person again. I said in my last post, I used to look in the mirror all the time and literally start crying because I felt like the girl staring back at me and myself were two completely different people. And Claire is faced with this and the overwhelming guilt that she is alive and her son isn't. And by doing so she has caused a huge divide between herself and the people she once loved the most. Everyone has given up on her except her housekeeper, Silvana. Because she sees what everyone else doesn't see or what everyone else has given up on, because they feel Claire has given up.

          I feel like Nina’s character was almost put in the movie as a catalyst to show Claire what she was really capable of. She reminded me in a very remote way (lol you'll know why I say lol if you see the movie) of my mom. She was always there; giving me tough love when I needed it, but also there to show me that I could do it, all I needed was a little reassurance. I remembered when I was watching this movie my first day of my PT, OT and speech. When I was told to pick up a pencil and write my name, and then I could barely pick up the pencil, or when I was told to get on the treadmill and my leg felt like I had a lead weight on it every time I picked it up, I just cried, and my mom was there to wipe my tears away and say, “I’ll be right here with you,” I knew she was never going to know what it was like to go through what I was and am going through, but that’s the way I want it. I love her too much to ever switch places with her if that was even possible, even though I know that she would switch places with me in a heartbeat, but I always tell her I would never let her.

          Honestly, with every time I see this movie, I learn more about it, and that just makes me love it even more. And I think it takes seeing it sometimes 2-3 times to see that. I’ll be brutally honest, when I walked out of that theater the first time I was crushed, I didn't feel as though I liked the movie, and something told me to go back and see it again. I think it was all the unknowns that were in my head at that very moment. But having Jennifer Aniston, one of the most famous women in Hollywood, do a movie on such an unknown medical condition, is a Godsend. It’s just going to make people more aware, but also it’s going to help the people who are aware of it, but maybe don’t understand it. Maybe it’s going to help the husband of the wife with chronic pain, who thinks his wife just wants sympathy, or maybe it will help the sister of the girl with chronic pain, who thinks she is faking it to get attention. Who knows? But I truly loved this movie, and I can’t thank Jennifer Aniston enough for doing it! I don’t know if she knows how truly amazing she made the chronic illness community feel with this movie, but I only hope that she got out of this movie what she was hoping for.

Cake

I've recently come upon the movie “Cake” with Jennifer Aniston. I saw that it was about a woman with chronic pain, so obviously I was intrigued. Honestly, my first opinion before I really researched what I could on the movie was, “Why would someone make a movie about something so depressing?” But then I thought about it. People who have this, (I don’t even know if it’s fair to call it a stigma, because let’s face it anything with the word pain in it kind of signifies something negative,) usually do denote a bad stigma towards it, and therefor don’t talk about it with other people. In my case, I don’t want to make other people feel awkward. Because I know how you tend to sit there thinking, “OMG what do I say so I don’t sound like an idiot; I have to say something so it at least looks like I care?” And then you either say nothing, keep nodding, or you say something that makes you look like an idiot.  I started to think about my journey through chronic pain and where I am today. And yes while my smile may fade in and out at times, if I’m stuck going to the doctor once a month for the rest of my life, I know I have gained so much more than I have lost. That being said, I don’t want people to think I’m constantly in this cheery happy mood all the time, because trust me I’m not. However, when I’m out with people, I do admit that I do tend to put my mask on, and be happy, because I don’t want to burden other people, and I’m 25 years old, who wants to stay in on a Friday night, even if you do feel like crap? I tend to have my “I feel sorry for myself, contemplative” periods of time, when I’m by myself. It’s really true when people say, “I do all my crying behind closed doors then when I open them, I’m back looking like Aubrey Hepburn.” And you have now heard it from a chronic pain sufferer herself. It’s true! At least in my case it is. 

When I saw that this movie was going to come out, I started watching the trailer and researching like crazy. I honestly wanted to see if the trailer truly did it justice. Because come on I’m Asian, I’m not going to spend like 15 dollars going to a movie, getting popcorn and a drink if the movie is going to suck. Right after I saw this trailer for the first time, I had two overwhelming thoughts in my head. One being, “OMG she does such a good job I really want to see this.” And of course because my brain is the Jeckyl and Hyde of brains, the other half said, “This trailer is the epitome of what you have worked so hard NOT to become why would you ever want to see this?” And I can’t answer that, at least not until I see it. But after watching the trailer about 100 times, and watching every little mannerism she uses, and after watching many YouTube videos about why she wanted this role so bad, I can say with a lot of confidence, “I can’t wait to see this movie even if it does illustrate what I have worked so hard NOT to become.”  It’s like she said, ‘Chronic pain is such an invisible condition, and most chronic pain people crave normalcy, so they try to live their lives completely normally.’ But that has a backlash. Then people think there is nothing wrong. So it’s this endless cycle. I try not to have too many of those I feel so bad for myself times, because I do know I am going to be dealing with this for the rest of my life, however long that might be. So I see it as, don’t complain about something you’re never going to be able to change. But it’s because I had a normal life at one point; that’s the reason I crave it so much.

I felt like I could really connect with Claire’s character. Even just by watching the trailer. I did like I said look this up on YouTube, and basically watched every interview that Jennifer Aniston did for this movie, and she said that you could begin to see through the movie just shards of Claire’s personality before “the accident”(I still don’t know what that accident was all I know is it was an accident). And I felt for a loooong time that every time I looked in the mirror the girl looking back at me was so different and broken than who I thought I was, or was supposed to be. But I would see it too, little shards of my “previous personality” coming through in different situations and I’m slowly beginning to realize that they were there the entire time, it just took a little bravery on my part for them to come out again. A lot of my college friends are saying, I can’t imagine you any different, and it’s not really that I was different, it was just that I was more carefree, I was more innocent, because quite honestly nothing “Really Bad” had ever happened to me, and I think while everyone looks at the phrase, “yeah I grew up” and gives it a good connotation, it doesn't always happen that way. Yes I grew up, but I was faced with a lot of decisions no one ever has to face in their lifetime and I was faced with them when I wasn't even a legal adult yet.

I kept pushing away any feelings that I had about this at all, because I was so focused on graduating high school on time, because I came back senior year and I was basically a year behind, and so I just kept focused and whenever anything would come back to me like a flashback I would just push through it until my nerves were so desensitized that I felt like I couldn't cry about any of it, and I didn't, not until six years later. And that put a lot of stress on my relationships with other people as well. It was like that “elephant in the room” except I was the only person who could see the elephant, all my friends could see that I was stressed about something but none of them knew what it was because I wasn't going to talk about it. And it was this way for a long time, but I slowly began to realize that it’s not always as painful as you think to talk about it. And sometimes it’s healing. You never know if you know how to swim until you jump in, and I jumped. I may not have had a life jacket on, but as you can see I’m doing pretty well……….

The True Meaning of Christmas

Let me just start this out by saying I’m starting to feel very different about the past. Before, I was honestly just trying to get through it, & when it was over, it was over. In the past. Done; etc. But now I know it will never just be a part of my past & that’s ok. I am getting stronger every day, but I do have moments, where I think to myself, “OMG, I made it through what!?” & YES I do feel like I have missed out on plenty. I know people like my mom, try to put me on this glorified pedestal but I’m not really. I’m human just like everyone else, yes, I do feel like I've missed out on a lot, YES I do get sad about it. & I’m starting to realize that’s OK. I don’t like to do it all the time because I feel like everyone has this “amazed” picture of me, where I am strong all the time, & I don’t want to let anyone down, but in reality I’m not. You read in my last post, when my parents left that night, I cried for two hours & for days before that. I just never wanted to admit to what it was all about because I felt like if I did, then I was letting it win. But now I know that humans crumble. It’s part of our nature. So does the Christmas season not make me as cheery as it once did? Yes. Is that OK? YES! OK. Now I’m ready to start my post.

December 13, 2006. When you see this date, you might try & think about what you were doing that day, or maybe you’re thinking, “Oh hey, that’s kind of close to Christmas” but that day has a completely different meaning to me. Nine years ago, I was laying in Evanston hospital wondering what was wrong with me & whether I was going to live or die, because of what Dr.’s were saying, or rather not saying. I had just had a shunt surgery, the month before, had a “fantastic” recovery, was all caught up in school, getting ready for finals in January. & one day, about a month after surgery, I woke up & I couldn't really stand up straight. It was like a rubber band that has been stretched to its ultimate capacity. I told my mom, & she said, that if it didn't get better that day, she would take me to the doctor. I remember that night, telling my mom I wanted to sleep downstairs, I can’t remember why, but I just wanted to. Now that I’m remembering what I went through that night, that decision was one of the worst decisions I’ve ever made. I was up all night. Crying, I couldn't move, but I felt like I had to in order to escape the pain. I eventually fell asleep just from pure exhaustion. The next day I told my mom what happened, & she knew something was wrong. She decided to keep me home from school & we went to the pediatrician later that day.

At Dr. Nelson’s office, she asked me to lay down, & felt my stomach. She immediately became concerned & said I should get to Evanston hospital because she thought it could be appendicitis. We went to Evanston, after my doctor called them to let them know what to expect, & to give them an overview. They immediately wanted to do a CT of my abdomen. I remember going into the CT machine, arms over my head, & just watching the film spin around, that is to this day what I do during CT’s. We went back to my “room” in the ER, & doctors came rushing in almost immediately. They said, “She has a mass in her stomach & we want to drain it out”. Honestly, immediately, I just thought, “WOW & you’re a doctor? Did you hear what you just said? You just basically said, we have no idea what’s wrong with you but we want to do an extremely invasive test to figure it out, knowingly subjecting you to infection.” After they said this, I immediately looked at my mom in terror, because to me “a mass” meant tumor. Now at that time, I still wanted to major in pre-med. So I was very aware of what goes on with the human body, & I thought if it was a tumor they wouldn’t be able to “drain it out”, so that begs the question again what is it? My mom said, “You guys aren’t touching her until I talk to her doctors down at University of Chicago. The doctors just looked at my mom helplessly & then at me, as if they were saying, “OK, but you better hurry, look at her.” I was lying there in a fetal position, holding my breath because it hurt to breathe, until I couldn't hold it anymore then letting my breath out & tears filling my face from the pain I was going through.

Finally my mom convinced the doctors at Evanston after a very chilling “Get her to U of C, the doctors there don’t know how to care for her” from my doctor’s nurse, Kelly, who she had called in a frenzy just wanting to hear from someone at U of C. I was placed on a stretcher & we got in the ambulance. I remember thinking, “I've always wondered what it would be like to ride in an ambulance, but this is not exactly what I had in mind”. I closed my eyes, but I remained awake from the pain, even after the max dose of morphine they had just given me for the ride. I heard the EMT’s talking to each other, I could hear my mom sitting in the front, periodically asking questions about me. It took forever to get to U of C. At least that’s what it felt like. When I got there, it felt like ok we’re here, now I’m going to be ok.  But we were so wrong.  We got there, & they had been thinking that I had a shunt infection, but I didn’t have the two main features of any kind of infection which were an elevated white count &/or a fever.  I will never forget the fellow’s words after hearing about my nonexistent blood counts, “Well we will admit her & just watch her, because if it is an infection, it will very quickly make itself known with no antibiotics; & that’s exactly what happened; four days later, screaming in pain, with a fever of 104 white count off the charts, I was rushed to the OR. My shunt was removed & an external drain was put in. My parents were told to get comfy, I would be spending the next 3-4 weeks in the PICU, but they chose not to tell me that, because it included Christmas & our family trip to Disneyworld.

When I was in the PICU, I was essentially bedridden, because in order to get out of bed I needed to turn the drain off, lower or raise it, unplug Beatrice, my IV pole (I named her, when you’re in PICU doing nothing all day, you get bored) & then get up & bring Beatrice with me, but not walk too quickly because the drain would pull because it was held into my head by stitches. After I had walked enough I would need to go back to my room, plug Beatrice back in, lower the drain & turn it back on, so sometimes I just wanted to stay in bed, because getting up was very labor intensive.  I was on toxic antibiotics that burned through my veins. I remember every time they came in to hang my antibiotics, I would look at my arm, as if I were saying goodbye to that IV because I knew by the time antibiotics were over, my IV would be toast. My mom begged for a PICC line, but they were worried about possible infection with the PICC, & it adding to the deadly, rapidly growing staph infection I already had. So I also had to endure 5-6 IV pokes daily, sometimes 2-3 times daily.

So Christmas came & went in the hospital. My parents brought my American Girl doll Christmas tree, put a Santa hat on Beatrice, tried to make it seem normal, but I knew in the pit of my stomach, nothing about a hospital Christmas was normal. Every night I said prayers before I went to sleep, praying for God to please wake me up from this horrible nightmare, but I also wanted to pray for all the kids who were sicker than I was that shared the PICU floor with me. Most of them, not even conscious. I was so sick, & yet so so healthy compared to the rest of the kids, & so grateful for it.

About a week after New Year’s, my parents were told that my cultures that they had been collecting, were coming back clear & that my counts were going down. I could finally have surgery to have my shunt internalized again. Yay right? Wrong. My parents were told at that surgery two months before, that my ventricles had collapsed on themselves, (SVS) & therefor, they would need to make my ventricles huge before surgery to make sure the shunt was going to fit. What does that mean? It means setting the drain to an impossibly high number so that it won’t drain until the pressure inside my skull reaches that high of a number. My parents also learned that day that I was an add on in the surgery schedule, which means I could be going through this all day but they weren’t given a choice so they had to do it. I spent the next 8 hours in horrendously agonizing pain, throwing up, eyes crossing, feeling so dizzy, crying &  moving just in time to throw up for the hundredth time sometimes in the bucket; sometimes not. Then I was given a drug to calm me down, because my heart rate & respirations were going ballistic, because of how freaked I was. That’s the last thing I remember, before I woke up from surgery later that day.  I was fine, & I recovered in the hospital for the next 2 week, was given a few more antibiotics to make sure everything was OK, then I was allowed home to try & resume my life.

I remember after I came home, that’s when it really became clear to me that tomorrow isn’t promised to a single one of us. I promised myself & God that I would start appreciating life & everything in it. This was when I really started embodying that ever popular quote by the famous Marilyn Monroe “I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you can appreciate them when they're right, you believe less so you can eventually learn to trust no one but yourself, & sometimes good things fall apart so better things can fall together." This is the promise I made to myself, I can’t change the way I was yesterday, because it has already passed, but I can change the way I’m going to act tomorrow. Sometimes things do fall apart so other things can fall into place. This is not a mistake; it’s called fate. The past is going to turn me into a better person. No matter how upset I am about the way things turned out, I will eventually look back on this & say, “Wow, I don’t know where I would be in my life without this, & I can honestly say I’m there now, & my view is absolutely wonderful.