Tuesday, April 7, 2015

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 3rd 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 7th 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 7th 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.”

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