Please Do [Not] Try

I was just checking my email this morning, when I came upon an email from the Hydrocephalus Association. Now let's be honest, usually about 3/4 of my emails, I just send directly to spam, even ones from the Hydrocephalus Association, but I don't know why, something told me to read this article, that I would regret it if I didn't, even though I was confused. It was entitled Please Do Not Try... This intrigued me, because I've been told exactly the opposite my entire life; that I shouldn't believe I was any different than anyone else, and that I could do anything anyone else could do. My parents never treated me any different than my siblings, although some of them will tell you differently ;-)  It was an article, about a girl named Kate. She was my age, and like me had been premature, and diagnosed with Hydrocephalus as an infant. She was in the hospital, and during one of her many tumultuous hospital stays, she woke up one morning overhearing the words of a doctor discouraging her parents from continuing to use "the pumping technique" to manually drain her shunt (which as an aside, I wouldn't do either, because although it may seem fun as a four year old pressing a little bump on your head, and feeling it fill up again, it is quite painful if you do it over and over). 

As I continued through this article, I read that she woke up, and listening to the doctor tell her parents not to pump her shunt anymore, she immediately with tears in her eyes, whispered, "Don't Not Try" over and over. Right after I read this, I was thinking to myself, "That's right Kate, you can't not try! If you don't try, you will miss out on so much! A lot of people with hydrocephalus, not only people who have had a lot of problems like Kate and myself, have this drive, to want to live. We don't know we have it, until we are forced to use it. Kate wanted to live and you could see in this article, her zeal and love for life. We want a lot of things. We WANT to live. We WANT to try... We WANT to prove that hydrocephalus does matter, but at the same time it doesn't matter, because we can do everything you can do. But most importantly, we WANT a cure!

Hydrocephalus is very much a "you're fine until you're not" type of illness. However, if you become complicated like I did, or like Kate did, your situation is compounded by several different factors and it then becomes a constant in your life. Yes having hydrocephalus makes us different from everyone else. But why does that have to be a bad thing? I can tell you right now with all the certainty in the world that if I were to grow up completely "normal" I wouldn't be half the person I am today. And there is no one definition of "normal." You make your own definition. So to me, does a normal person have a port in their head, with tubing down to their stomach and horrendous scars all over their body and a headache 24/7? YES. And I'm proud of every single one of those attributes. They always say, "Never be ashamed of a scar, it simply shows that you were stronger than whatever tried to hurt you."

Reading Kate's heartbreaking story was so close to home, because it paralleled my own story in more ways than one. It almost felt like we walked this journey together. She was fine for 12 years, me 14. Like Kate, the shunt, our life support had become for her the same thing it had become for me= we loved it but we hated it with every fiber of our being at the same time. Then when Kate turned 12 her entire life fell apart. Me? When I was 15. She even wanted to become a nurse..... The most important thing I learned reading Kate's story, was reinforced when I read her heart wrenching fate was that I felt so incredibly thankful. Many people after hearing my story, look at me almost with a curious look in their eyes, "How can you be thankful"? Or "Thankful for what" they will say. I say I'm thankful I'm alive! Even though my fingers are still pretty paralyzed, or when it gets cold out, my leg doesn't move very well, I’m still here. So many people with hydrocephalus can't say that anymore including Kate, she lost her battle at the age of 25, but her last motivating words inspire me to keep going. Kate I will TRY for you! She inspires me to keep going for other people who are just like me. I will keep going for Kate! Until a cure is found, we must do what Kate said on her deathbed. We must try! RIP fighter no more headaches, no more lying flat, no more spinal fluid leaks, no more infections… Fly high angel girl......

https://www.youtube.com/watch?v=z0rxydSolwU

Living A Lie...But You Really Can See the Invisible.

A lot of people, just assume that I'm doing fine all the time, because yes I go out, yes, I have a good time. But they all know what happens when you assume things....Look at the spelling, and if you still can't figure it out, then we can't be friends lol jk jk. But in all seriousness, Yes, I do go out, because what else would I do then? I either go out in pain, or sit at home doing nothing in pain. I'm going to be in pain either way. When I was little, I used to pretend I was a princess, and dress up. Well now, I play an adult version of pretend. When I go out, I am able to "pretend" that none of it exists. I can live the life I've always wanted to live, taking precautions of course. But can I do it all the time? No. My life came to a screeching halt, on October 23, 2005. And it has tried to restart. But restarting your life, is somewhat like trying to restart a lawn mower after you’ve been using it nonstop for days.  You pull the string, and sometimes it works, but sometimes it doesn't. Sometimes it works but only for a few seconds. But sometimes it works for as long as it takes to mow your entire yard. But then you need to turn it off and let it rest for a while. Sometimes a few days, sometimes a few weeks. Could you imagine what it would be like if we felt like sh!+ and looked like sh!+? Atrocious, it would look atrocious! .

I quite honestly, never understood the term "Invisible Illness". I'm a natural science major, I only like concrete things. Things you can prove. I know I have hydrocephalus and a whole host of different problems, and as long as I knew that, it was all that mattered. After I got sick, I hated the fact that I had an invisible illness, because I thought it meant that I had to prove I was sick.  I can remember, basically 3-4 hospitalizations where they told me in the ER, we can see nothing physically wrong with your CT your ventricles are actually smaller than they should be, so that could be the problem, but it’s not life threatening, so there is nothing CLINICALLY wrong with you. I felt so defeated, because I knew there was something wrong with me. I could feel it, you could see my entire demeanor had changed, so it must be true right? A lot of people accuse "spoonies" like me of faking being sick. But in reality, we are faking being well. And we must be doing a pretty good job, if you think the opposite. 

No my double life isn't sexy or mysterious or even crazy, well it is crazy but not in the way you're thinking. I've been pretending to be well, when in reality, I can't even go from a sitting position to a standing position, without stopping first and letting myself equilibrate. But I can't do that at work, no never, so I turn the corner where no one can see me, and then let myself equilibrate. Am I lying to all my colleagues? Maybe. Then I go to my pain doctor, and let her know my symptoms, of course since she knows nothing about neurosurgery, she's freaking out.... "OMG you need to call Dr. Frim... I nod, and say I will. But do I? no. I just come up with an excuse to use next month, such as my favorite, "Oh he wants to watch it before we change anything." Although I think she might be catching on... I know I have a problem, But I also know it's not life threatening. And so do I want to sit in clinic for 5+ hours for him to change a setting? no. But if things get remarkably worse? Yes then I will go in. It's a very delicate balance, it's like standing on a teeter-tawter(And I know I spelled that horribly wrong) and trying to ride it like a surf board, but there are already people on it. You just can't win them all. 

I've never really been much of a liar. Not because I'm little miss perfect, but quite frankly, because it's too much to remember. So why would I be lying about my health? For my own emotional protection. People always want to know how this is effecting us emotionally, and for me, it isn't, or it's effecting me the least amount, because I do admit, I keep myself in that little imaginary perfect bubble for my own emotional protection. When people ask me how I am doing? Unless I'm physically dying, I will always say I'm "ok". That's a spoonie's go to word, because it doesn't mean you're good, but it also doesn't mean your sick enough to be in bed, hating the world.

So what can you do? Be there. Believe us. I realize that being able to believe us when we go out and live a semi normal life is difficult. But maybe it’s not for you to understand. Maybe it’s not even for me to understand. For all I can do is accept it. Listen to our pain. Because that’s the only way you will ever be able to see it. 

Alone in A Room Full of People

I'll be the first to admit, that for my entire life, the anomaly of depression; the action of being depressed, withdrawing from the entire world into your own, really confused me. It wasn't until I got sick that I began to understand it. At first I would talk about being sick all the time, just because I was so detached from it all that I never really thought I could be talking about myself. It's almost like an alternate reality that you put yourself into, for your own emotional protection. Breaking your leg, or having your appendix out yes, those are all traumatic things and I would never try to belittle them at all; thankfully nothing of that nature has ever happened to me, but having those things happen to you, yes that might make you a little disconnected with the world while you're healing, because it was traumatic for you. You could think oh no one understands, but then when you get better, you're back to your normal self, back to doing what you love. What if you woke up one morning and you just weren't the same, and no one could tell you, not even the smartest man in the world, IF you would ever be the same again? Oh yeah and add in that now you have chronic pain and every surgery you have from now until the day you die, will make you infinitely worse.... And then there's that looming cloud of darkness hanging over your head, How many surgeries will I end up having? Another unanswerable question. It's like have a nice day and oh yeah F You.

Having an illness, even one that is not so uncommon can be extremely isolating. Because in my mind, conditions are like fingerprints, no one is ever  going to have the same story as you. I know some kids/young adults who are sadly so much worse than  I am, but the converse of that statement is also true. I know some kids/young adults who are doing so much better than me right now. But now the majority of people I talk to are doing better than me unfortunately, well unfortunate for me good for them. When I started to realize that everyone in my life, from my school friends, to my family was "acting differently" than I was, and I seemed so different than I felt I was, I just started retreating into myself more and more. Even now, almost gosh 11 years, down to the day, (man that's freaky) my friends all ask me, why are you so quiet when we are in groups, or my parents are like OMG are you ok!? And I tell them, I'm fine......It's just when you watch the world around you that you truly don't feel like you're a part of anymore, it sort of freaks you out. It's like standing outside in a snow storm and looking inside a nice warm house with a fire going and cups of cocoa, and a Christmas tree, and knowing you will never be able to go in there and get warm. Sometimes I'm just sick of all the questions. Part of what makes pain actually painful is it's privacy and un-share-ability(if that's even a word) because like your fingerprint everyone's pain or version of what is painful is different. I can get up and go to work and then go to a party 2 weeks after brain surgery. Does that mean you should? Or could? Not necessarily.



The reason why I don't talk about it anymore, is because I know that everyone is trying to be sympathetic, and I truly genuinely appreciate it, I really do, but it's like the fingerprint thing, no two cases are ever going to be exactly the same, and you're never going to know what I went through. Because what is worse? Being in pain and being alone? Or being in pain in a room full of people where you're the only one who knows and understands it? I would honestly take being alone any day. There's always a window with invisible pain, and sometimes if you're really good, you can see straight through that window(ie my mom) and sometimes that window is cloudy and you can only see mist (ie the rest of the world)



One of the most devastating parts of chronic illness surprisingly is not the illness itself, or the annoying/painful (insert your adjective here) symptoms it causes. It's the loneliness and all the emotional baggage that comes along with it. So yes, I have hydrocephalus, SVS, aqueductal stenosis, a failed ETV, a shunt, a catheter, a ProSe, a gravity compensating device; any or all of which could fail at any moment, but oddly enough that's not where my worry is most of the time. But the stress of having all these things is multiplied and magnified because of the pain, but it is also what causes the pain and so it's like playing a game of ring around the rosy.  You're never really done with it until you fall down, well imagine if you couldn't just fall down and you were required to spin and spin, never really going anywhere, but just spinning. Any and/or all of these different things that I have inside my body, could possibly kill me, I've known this for a long time, and it's taken a long time for me to accept it, but I refuse to have any regrets, and I live in the moment, I know I'm as healthy as I'm going to get right now and that's all you can ask for if you're chronic. is How are you doing right now? Well right now, I'm alive, and I could never ask for anything better.


Yay I'm on google images! Never thought this would happen lol.

The Hidden Cost of Chronic Pain

If you look up hydrocephalus in the encyclopedia(assuming people still have one) or on the internet, you will see pretty much the same thing. That it's a blockage in the flow of cerebrospinal fluid potentially caused by what could be hundreds of different things(csf is gross by the way just thought I would let you know). It says that if left untreated, it WILL lead to mental retardation, growth in skull size until you are unable to sit up because of the sheer size of your head, and ultimately DEATH. But then ironically after hitting you with those seemingly insurmountably terrible odds, it says but there is a treatment. But then it does it again. It says, there is a treatment(HIGH) but then it says, but this treatment is very flawed, and has a 50% risk of failure within 2 years(and FAIL), which will probably lead to many brain surgeries throughout your entire life... What they leave out though, is the fact that with each surgery you become more complicated. Maybe that's understood? I'm not sure, but I can tell you one thing I definitely wasn't expecting to be where I am now 11 years ago when this all started.

Chronic pain has stolen my entire life away from me. Everyone says, "Oh but you go out you have fun" and I don't want to give the wrong idea here, YES I do but everyone who knows me knows I love to plan, and if everything is not predictably picture perfect I freak out. (Which confuses the heck out of me why I love dramas on tv, so many twists and turns but that's a whole other story)I had this entire plan of what I was going to do... And I had to throw it all out of the window when I got to college. Chronic pain has stolen spontaneity; it has stolen the ability to just curl up with a book on a Monday night, I argue with myself, "Kimi if your pain is too bad, you can't turn on the lights, because otherwise your head will pound too bad..." I saw my body go from that of a healthy teenage girl who loved to go on walks with friends, to a girl who still loved to go on walks, but struggled to keep up with friends because her foot hurt too bad, because she had not been wearing her orthotics that her Physical Therapist basically said had to be in her shoes every time her feet hit the ground. Many of you think, Yes this sucks but hasn't it become the  slightest bit predictable now? And the answer is YES it has, but do you think that has lessened the blow? No. I've seen my life in both lights, the healthy, invincible light and the  chronically ill, would rather sleep till 10 than get up at 6 light. And I would be lying if I didn't say I wanted to "smush" them together so I could have both. Don't we all want to do that with some things?

 But it's like I'm straddling an invisible line. On one side is my chronically ill life, and on the other side is my healthy, carefree fun life. Would I like to take what I've learned from both, stick them in a bag and shake it up? Of course... But I can't. I recently went to the pain doctor and got the greatest news ever, she said the two words that every chronic pain patient wants to hear, "You're stable." But as soon as the excitement wore off, the fear set in. "Wait does that mean at some point I won't be  stable anymore"? Will I at some point, down the road, be on that ever familiar path of tweaking medications, becoming ever more tolerant of narcotics, which is my greatest fear? However, the facts are the facts, every surgery I have, makes me infinitely worse (never mind that in the past 10 years I've had 35+), then it's back to the pain doctor where she says the 5 words NO pain patient ever wants to hear, "You are no longer stable". It's like playing Russian Roulette with a drug cocktail. You try it and if it doesn't work you try something else; maybe a higher dose; knowing nothing about what will happen; my  favorite word ever predictability? Gone; having ideas, guesses but those guesses mean absolutely nothing if the guess doesn't work.

We fight. We fight silently, while tears bathe our pillows at night, we don't sleep because we are wracking our brains with "what if''s" or "could have been's."   Every second of every day we are witnessing the ever present betrayal of our bodies. We aren't strong because we woke up and chose to be strong. We are strong because we woke up realized that we have no choice in this matter, we have to keep going, there is no alternative.  But in reality none of that matters at all. All that matters is how you view yourself. Yes others having a semi nice view of you is always a plus but it's really not what you need. You weren't put on this earth to please people, but if you do hey bonus! So just stay with us, be with us. I can't promise you it will be fun, all I can promise you is that it will be worth it. Maybe not today; maybe not tomorrow but someday, it will all be worth it. 

I'm Still Me

A couple days ago, I had just gotten home from dinner with a long time friend, when I thought about it...He treats me so normal...But IS he the type of person whose head is racing at 100mph every time he sees me, thinking, "Oh should I ask her how she feels, is this going to make her mad, OMG But I don't want to sound insensitive UGH OMG I DON'T KNOW WHAT TO DO!" I didn't think so but I didn't know, and he's the type of person where if you want to ask him something you should just do it, because he never lies to you. And so I texted him after he dropped me off, probably not the best idea, since I knew he at that time, was in the middle of Lake Shore Drive, but nevertheless, I texted him. I asked him, Whenever we are together, do you ever think of me as your sick friend? Do I still act the same? Do I act sick? Or do I act totally normal? And honestly I totally had no idea what his answer was going to be, because everyone acts differently to other people, but to them they could think it was totally normal. and he said exactly what I wanted him to say. He said, No you act completely normal. If I didn't know you were sick, I would never know. And I can't thank friends enough for saying this.

People ask me all the time, how I cope with it, and even I think it's very cliche to say this and half the time you never believe it until you go through it, I didn't either, but you really do get used to it. I had heard other people say this and I never believed it until I went through it myself, "You get to the point where being sick becomes the normal, because I never feel good but then you just get used to it so it takes being really really sick to even know there's anything wrong", and that's really true.The thing I have had the biggest problem getting used to is the fact that one of the best rehab places in the country, that will remain nameless because I don't want them to find my blog and possibly send me to prison, didn't handle my therapy right at all. The only part of my therapy there that was beneficial was my speech therapy, which all of you can see is now just fine. But that's where it ends. My leg still feels like I have a 5 lb weight on it and in fact will continue to get worse over time, until basically I am unable to walk/put weight on that leg at all, And so about 8 years ago, I got orthotics, but being a teenage girl, I wanted to be able to wear cute shoes, and so I sort of tricked my mind into thinking, oh you only need to wear them when you go for long walks, and then I barely did that......I guess you can call it my version of teenage rebellion, I know you're thinking, OMG if I was going to not be able to walk I would wear them all the time! What are you  thinking!? And I know on it's face that's what it sounds like, but it's not that simple. I wanted to be normal. I was a girl who had just gotten her entire identity stolen from her in a matter of 10 seconds. In the amount of time it took to snip that one blood vessel, my entire 17 years of becoming comfortable in my own skin was taken away from me. But now I'm seeing what my not wearing orthotics for basically probably 6-7 years when you count up the total number of days I didn't wear them, has done. Now every pair of shoes I own, I tell what foot they go on by looking at the front of them. If the front is totally demolished, I know it goes on the right foot. Because the way foot drop works is it makes it so the front of your foot can't really lift itself when you're walking and so you drag it along the ground for lack of a better term. I also now use my left hand to do virtually everything, not necessarily because I'm lazy, I learned that the area of the brain where I had my bleed, in the easiest terms, if you're right handed and you do something with your left hand, your brain says, What are you doing? You're right handed!? Mine doesn't anymore. In fact, when I'm using my left hand, my brain forgets that I even have a right hand. I probably could have written this entire thing with one hand and not even have known it.(I didn't by the way, I'm just saying I could and probably wouldn't have noticed.)

After all of this happened, my admiration for my doctor sort of disintegrated. Once I learned what he was "Supposed to do" and then "totally neglected to do". I told my mom that I was so mad at him. Why did he do this to me!? And she gave me one of the best pieces of advice I think I have ever gotten. She said that the one way I can show him and the whole world that I can bounce back, is by being happy! Now at the time, I thought that's easier said than done, I went to bed nearly every night wanting to cry. But now looking back on it, even though I had my days, for the past 3,016 days since the stroke, I've been happy for most of them. And I've asked my mom through a lot of this, "Is my personality still the same?" and she told me, "You're a little more reserved, or cautious is a better term for it, but you're also much more endearing, and compassionate, and I'll take that any day." And I guess I will too.......

How Selfish Are We Willing to Be?

Everyone has heard it before, from the time we were tiny. Always think about others before yourself. Let the other person go first in the elevator. Let the guest have the bigger piece of cake. It's just one of those things you learn to accept because you want to be a decent member of society, and not a jerk, (well I can't speak for everyone, but I hope I can for everyone who would be reading this.) But when you're chronically ill, you're constantly being labeled that you're an "attention hog" or you're accused of "faking it". But the reality for "sickies" is we can't be of any help to other people unless we take care of ourselves, and this is just an anomaly that very few can understand because just the opposite is ingrained into our head from the time we are 4 years old. It's not because we are rude, or an attention hog that we do these things. The truth is we  deal with so many "other things" every day in addition to everything you deal with. We have to deal with (Now I don't know about every  chronically ill person in this world this is just what I deal with)pills, loads of them, meds cases, and not spilling your pills all over the floor which I have done, in the not greatest of places...getting enough sleep, appointments OMG appointments and then I have to worry about that ever worsening thing in my body called chronic pain, that gets worse with every surgery, every time I brush my hair and further infuriate a few hundred thousand already really pissed off nerves. Every second of every day I'm reminded that I will never measure up to everyone else, because of something I never wanted in the first place. My parents find it somewhat strange that I enjoy spending time by myself, YES this is because when I'm by myself, I have no one to compare myself to, no one to show me what I could be doing if I never got sick. When I'm by myself, I can trick my mind into thinking that none of this exists...

I know a lot of you will think, "OK you're somewhat selfish, yeah me too every once and a while," but it's actually far from selfish. When you do good for yourself, you can then do more for other people. I love analogies, and so I will say it in an analogy. You know how in an airplane, they say when they're telling you about the masks, you have to put yours on and then you can help your children? I never understood this until now. I used to think, "Why would I think of myself before I helped my child(ren)? My pride and joy? I would want them to live instead of myself... But then I thought about it. Only when you are at your best can you be expected to give your best to other people. And when you think of it this way, that whole situation makes perfect sense right? You need to be perfectly healthy and able to breathe before you can extend your help to help someone else breathe with ease. These are all subjects that no one talks about, because who wants to sit around the dinner table and talk about something this depressive? But in reality, as much as I hate talking about it, it's something that needs to be talked about otherwise, you're just adding fuel to the fire of resentment, and confusion.

A lot of friends don't seem to understand the unpredictability of chronic illness. Yes you can be fine one day and then can't get out of bed the next. And this is all day every day for us. I said this in a past post, the inability to predict your life from second to second would annoy the crap out of every single one of you, this is every second of every day for a chronically ill person. But I know it's sort of cliche to say it, and more than half the time you probably won't even believe me, but you really do get used to it, not because you've accepted it or you're letting it win, it's for the sheer reason that it would make you go crazy if you didn't just accept it, because for a lot of us this is never going to go away, and I can tell you, I probably would have hurt myself a long time ago, if I didn't just tell myself, OK this is your life now, and you have to accept it. But don't think I just said this and it happened. Oh no, it was a long time, but I was sick of  being so upset, I would just make myself sicker, and I just said, you can keep making yourself sicker, or you can begin to realize the reality of your illness. Everyone always has this, "Oh you're so inspirational"affect when they're with me, and I do appreciate it but I'm really not, you have no idea of the freak outs I've had behind closed doors, and I think it's natural to do this. It's natural to mourn your previous self. It's natural to wish for it back.

So it all comes down to which risks you are going to take. Are you going to go out with friends knowing that you may pay for it later, and I don't mean by lying on the couch watching tv, I mean by being in bed, with the curtains drawn in so much pain you can't look into the light without throwing up. I've been there, does it mean I would take it back? Not necessarily. If  your life were to  vary from minute to minute after being as close to picture perfect for 15 years, what would you do? I think I can speak for every chronically ill person out there when I say, all we want to do is get better. We all want to have what you have. But for a lot of us moving forward, also means the same thing as moving backwards or staying in the same place. And I hear it all the time, "Oh your pain can't be that bad right"? And the answer is No it's Not that bad, it's much worse...So if it were you? How selfish would you be willing to be?

How you Live

Obviously, I’ve been getting a lot of questions over the past 10 years, because my entire personality took a 180. Everything I cared about completely took a backseat. How do I live is a big one, and how am  I living life differently now, and I think that’s a very hard thing to answer, mainly because “living” is such a subjective term meaning it’s different for everyone. But for me, it was just about slowing down. I almost felt like as all children do, I just wanted to get done with school and be a “grown up”. I know what the heck was I thinking!? And so I never really took the time to look around at my life and say WOW I have a great life, A. because I didn’t know any different, and B. because I was too busy going through life as fast as I could. And getting sick forced me to look at life as if it were to be taken away at any second, because I learned very cruelly that it could, and that needed to be taken seriously.

Getting sick has meant a lot of different things for me. It has meant, appreciation, it’s meant loss, it’s meant missing out on some great experiences of life it’s meant so many things. And yes I would be lying if I didn’t say every once and a while, “I get it God, can we just move on, I don’t want to be sick anymore, I’ve learned everything you want me to learn”, because I’m human and humans stumble, humans fall, humans question. We are an imperfect species that is always looking for “the real answers”.

What does it mean to live? I think the answer is different for everyone, because everyone has different views on what they think “fun” is and what “relaxation” is. Some people think living is going on vacation every chance they get, some people think it’s spending time with those people who are important to you. But to someone who is chronically ill, the answer is extremely limited to how we are able to engage with the world. If we are able to put on our brave face, and go out to a party for 2-3 hours, but maybe pay for it later. Are we willing to do that? Sometimes the answer is yes, sometimes it’s no. And when we are able to do these things, we hold onto them, like they’re precious gems, because to us they are. They were proof to us that we were able to successfully go out and LIVE!

Honestly, not LIVING, is what scares me the most. Am I not going to go out for a walk, on that 70 degree and sunny day, because I’m too afraid, I’ll trip or be in too much pain to do it. So then I don’t. Am I not living if I don’t? The human psyche thrives on predictability, and to most people, taking a walk has absolutely zero inherent risk.  But my life is full of risk. I know nothing about what will happen when I walk out that door. If I’m going to have a malfunction and pass out from pain, if I’m going to have a pain attack, etc. Your mind would go crazy if you couldn’t predict what’s going to happen in your lives, at least a little bit, but that’s all day every day for me. And for a while, that drove me nuts because I was like you, I loved to plan ABSOLUTELY EVERYTHING.

A lot of people don’t see it. If I were to walk into a room and see me, I wouldn’t see it either, because I try soo hard, sometimes almost too hard to be normal. Because if I can  convince myself that I’m normal, I can pretend none of it exists-not the fear, not the pain, not the surgeries not the pills for just one more second. And I can be normal. Isn’t that what anyone wants? I remember when I was in grade school, I wanted so badly to be in the “popular group” because I felt that’s what society projected as normal.

People ask me all the time, in fact someone just asked me at work, “why are you always tired”? I didn’t want to get into it with him, so I just said I went to bed late last night, but the truth is, because my body is battling itself every second of every day. It’s because my emotions are on overload from feeling sick, to trying to feel happy, to being scared, to being lost all in one day. I desperately try every day, when I wake up, to put on enough makeup so people won’t ask why I look “awful” that morning. It’s hard fighting something you can’t see. It’s even harder fighting something you can and will NEVER be able to predict because that means you need to be at the ready 24 hours a day.  But this isn’t what life is all about. It can’t be what life is all about. It all comes down to which life you would rather have. And yes, while I would love to have zero pain, would I be equally as happy, and as compassionate as I am right now? Probably not… So I think you know what I would pick. <3

To Live Through Another Breath

I've been dissecting a phrase for a long time, when suddenly I realized, that maybe it's a lot easier of an answer than I'm making it. I was asked a lot early on when I was really sick, if I missed my old self, and I thought, "What? My old self? I'm right here?"  It was like I couldn't understand what they were asking me, but now that I've been "sick" for a long time, I'm realizing what they meant by that and my answer is YES, I do miss my old self. The self that was so carefree, so innocent the sort of person who didn't need to worry about her "health schedule" when she was making plans because she already knew she didn't have any doctor appointments, the girl who didn't dictate plans by her "meds schedule". Then I realized though that people unless they are effected with the condition/disease in a personal way, they really put it out of sight out of mind. I was always sort of insulted, when people said with disgust in their voice, "You don't know about a disease unless someone close to you is effected with it." But then I realized that yes while that does seem sort of accusatory it's really true. I never thought about kids getting cancer, or kids born with this or that, I didn't think there was anything wrong with me, until I was 15. But now that I'm an adult, in the world, answering for myself, loving my life, but NO not doing what I wanted and thought I would be doing now, yes I do have what if moments, and I ask myself, "What if things had gone differently", but then again doesn't everyone? "What would I be like today?" Of course, I try not to have them all the time, because let's face it that would just be way too depressing, but I think as a young child, you have this amazed view of what it's like to be an adult, and you have these sometimes unbelievable goals for yourself, I remember, I told my parents when I was 5 years old, that I was going to be the one to find the cure for cancer. And yes I truly did believe that, and also that I thought being an adult was being able to buy gum whenever you wanted and not have to ask anyone. How wrong was I?
I don't like to say, "Why me", because I learned very early on that it doesn't do anything except use the valuable energy that you've been gathering all day, and use it on something you can't change. I said this to a friend who's probably reading this right now lol, and she said yeah but sometimes it's good to say it, and I guess I will agree to disagree :-). I do see the benefit in just getting it off your chest, and trust me I do that a lot more than people seem to think. And I do value everyone's opinions, I do, and I love my friend lol, I've bounced a lot of things off of her over the years, and she was there with me when I was the sickest, and she's still with me now even though we are far apart, and I can't thank her enough for her friendship. Thank you Lizabeth Riggs, thank you for being there, even though you weren't "there". You were there when I thought I was going to die, to say No you're not, you were there when I had the stroke to say I know you can do this, when I couldn't tell myself that because I couldn't speak. And for this I'll never be able to adequately express my gratitude! Even during my freak outs... I just don't see a point in venting out loud if you're ultimately not going to be able to do anything about it. I tried doing that, and I got nothing out of it, mostly because the people I would freak out to would be sitting there like a deer in the headlights, right after I just unloaded on them, with that look of fear on their faces, that look of, "Uh Oh what am I supposed to say, I need to say something? Should I agree with her? No that's too easy, but I can't disagree, oh no and then they just keep staring lol. And so when I got sort of what I thought was depressed, about it, I didn't like that feeling, and so I chose to look at it as I was given the ultimate opportunity, I was given the change to relearn everything I learned as a baby, but learn it through the eyes of a teenager. It's truly amazing seeing the things you take for granted everyday, and the admiration for yourself when you're able to relearn them and I'm still amazing myself, with my recovery, and the things I've been able to relearn and I know that despite the things Dr's tell me all the time, that my recovery isn't over yet, it can never be over.
I've always had mixed feelings about the past. In one way, I'm  upset that I didn't get to do all the things I wanted, but looking back on it, I think, who would I be if the past didn't happen the way it has? They say you can't miss what you never have, so I guess I wouldn't know one way or the other, but, I still always have that thought in the back of my head. I always told myself from the time I was tiny, that I wanted to witness a miracle, but maybe I've been seeing one all along. The very fact that we take a breath every second or so is a miracle in itself. It's just so instinctual to do so that we never think about it, but it is. It means that we have been chosen to live through another breath. Think about how many people just took their final breath? And we were chosen to live through another one. We are the lucky ones guys! So even though I feel bad about myself sometimes, I've realized in recent years, that I have so much more to be thankful about than I do to be upset about! The simple fact that I'm alive after all I've been through is over looked by so many people, myself included, but that doesn't mean that every once and a while I don't stop and think to myself, "Darn, I'm still here..." And then look up at the sky, and say,"Thanks big guy". Because he chose me out of millions of people to live through another breath.

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……….