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.”