Thursday, April 7, 2016

A Letter to Myself Exactly 10 Years Ago April 7, 2006

Dear 17 year old Kimi,
            Where are you? Certainly not where you remember being 24 hours ago. You’ve switched rooms and yes you are correct, time has definitely passed. I know you have tons of questions. So I will try and go over the gist of it all. You are now in the Pediatric Cardiac ICU. And the first thing I want you to embrace is the fact that you’re alive, because unfortunately, you’re not going to like the rest of this explanation. I know last time you checked you were on Comer 5, in terrible pain screaming. Why did you move, you ask? Because when your shunt malfunctioned yesterday, that’s A. why you were screaming, talk about painful your ICP was probably approaching 35(Normal is around 15 but you unfortunately can only handle a maximum of 10 so 35 is waaaaay too high; and for those of you reading just imagine overfilling a water balloon), and B. that Dr. that you admired, had to make a split second decision, one that you, one day, months down the road, will say ruined your life, but I will lead you to the light again, don’t worry, but that decision he made didn’t come without consequences.
The reason you can’t speak and can barely walk, is because you suffered a stroke during the surgery. I know, I just saw our eyes get wide, too. But you will be ok! You’re going to have some rough days ahead as I’m sure you guessed. The worst of them coming in 5 days. No one could have ever guessed, but your shunt that was just placed in your lower spinal column, (I know you’re thinking an LP shunt what!? They couldn’t put one in  your head right now, it would have been waaay too dangerous) will malfunction, you will get chemical meningitis from the hemorrhage, and your mental status will go down, down, down in literally a matter of 30 seconds, and it will take your mom practically grabbing the PCICU Dr.’s arm to come in and see you. But just keep your eyes on that corner of your room where your TV is, that’s where I’ll be. When Dr. Morgan(name changed for confidentiality in case she ever finds my blog and wants revenge) finally does come in, she will turn white as a ghost, grab your bed, and get you down to CT, faster than you could have ever imagined considering its 4 floors away. I know this sounds bad, and trust me, you will have the doctors on the edge of their seats for a long time, but you remember what I told you? Nothing comes with no reward; it will take a while to see it’s there, but once you realize it is, you will never let it go.
            When you finally come home, some three and a half weeks from now, you will be tired. No that’s an understatement, you basically will turn into a bear in the wintertime. You will sleep literally probably 14-16 hours a day. That’s because your brain is searching for a way to escape the pain of recovery, not to mention trying to heal itself and the rest of your body that was paralyzed. You will become depressed. You won’t know it, but you will become so obsessed with getting “back to normal” you forget who you are in the process. You will become like a robot. Just waking up, going to therapy, coming home, sleeping, eating dinner, and going back to bed. You will have some nights where you cry yourself to sleep.
            You will spend the next year, in and out of the hospital; literally every month. The words “Weren’t you just here” mean nothing to you because you’ve heard them too much. You will give your IV poles names, race them down the halls with other kids, and make best friends with “the girls” (nurses) on Comer 5 and 6, friendships you keep even today. You will become a mystery to some of the brightest minds in the country. You will know what the voice in the elevator is going to say before she says it, you will know that when you get to the 5th floor you will see Eleanor the elephant with the pink polka dotted bathing suit and the ice cream sundae umbrella. I know when you go to the 6th floor you will see the Rube Goldberg machine.  And you will always always always remember to say goodbye to remoc in the  lobby! You will know every inch of that hospital. You will even get the nurses to turn off your “Hugs Tag” for 3 hours so your mom to take you on a tour of U of C campuses. So it won’t be all bad.


       But the most important things you will gain through all of this, are gratitude and empathy. You will know truly what it means to say thank you because you have to say it to the man who has saved your life more than once, but also you will learn the power of forgiveness, because your faith in the man with whom you entrusted your life, will diminish before your very eyes as you learn more about that procedure he “just had to do” and how this “procedure” almost took your life, while at the same time saved it. You will question everything you stand for and believe in. I’m not lying this will bring you to your knees. But don’t worry, everyone, even the bravest of people asks why once in their life. And if they say they don’t they’re lying trust me.  I know it sounds like I’m giving you nothing but bad news, but remember, tough roads almost always lead to beautiful destinations. All you need is a little patience.

            When you go home, you will wonder, “What’s the point,” A LOT, while your parents try to do therapeutic things with you before therapy starts.  You will wonder where’s the old me, but you will eventually tolerate the new me, and eventually embrace it, I promise. You will feel like giving up. Until you meet your angel. Her name is Robin and she is the best therapy anyone could ever give you. She will be your saving grace. The angel you didn’t even know you were begging God for. She will be the one to show you how lucky you are, despite you devastating circumstances. She will be the one to make you look around at your life and see how fortunate you have been, through her own experiences. And she thought the exact same way about you. In fact she told you one day she thought you were the angel that God sent to her at just the time when she felt like her entire life was crumbling in around her.
            As the days go past, it becomes clear to you that none of this is going to change. You are forever going to have chronic pain, because of the surgeries that have passed, and the surgeries yet to come. And yes you will have more surprises. But the real beauty comes into the woman you will grow to be. You will grow to be even more forgiving than you know, and more knowledgeable than the residents working on you. What they say to you will have you rolling your eyes. Especially when one of them says, “Oh I don’t know what they’re doing on you today, I’m just watching, and maybe helping a little.” But you will enjoy helping theses residents through their residency, and you will enjoy seeing the lowly little residents, standing in back of the Big Bad Fellow in the morning, grow into that role themselves. And you know exactly who I am talking about. It’s the guy you continuously tell your mom you “don’t like.” It’s been an amazing privilege to be his crash dummy and you know I’m right.
            Kimi, I know like 10 years seems like forever, but in the same way feels like it happened yesterday. I know better than anyone how your dreams for your career were crushed. I know that you feel defeated each time you go “in” and hear you have to have yet another surgery. I know it all. Just keep going. You’re doing everything right. <3

<3 always,

Your guardian angel


  1. Thank you so so so much for writing such a heart felt articulate pieces which is penned to the upmost honesty. I cannot to begin to imagine your journey and it would be unfair to say I understood. Just a major well done for your strength and bravery throughout. I found your blog through The Mighty and have chronic pain... plus others. Would love to have a chat xxxxx

    1. for sure! Please find me on facebook! <3 and gentle hugs!!

  2. Another tear jerker. So many things you say, I just really understand. I too had a saving grace person come in to my life in 2010 named Melanie.
    She told me I looked like an angel when I walked in the restaurant and she always felt Heaven when she was around me. Little did I know that I was going to help her as she helped me years later. She began her own neurological nightmare and was diagnosed with MS this year. She was there for me when I was going on the roller coaster of MS suspicion. No MS lesions was found on my MRI but they never ruled it out. I matched the symptoms to the T! Sometimes I've asked myself if MelMel asked God to let her take the battle for me. Glad you had a light on the path. Stay motivated...pain kills so much of our life, few will understand.