April 11, 2006

This is something I never really elaborated on. I just always included it as a little blurb after my April 7th post as maybe the last paragraph. But 4 days after I had the stroke, I was in PCICU, my mom was literally sleeping in a chair because in PCICU there aren’t even rooms really, but I remember just staring at the ceiling. It was dark, and I was just staring into this never-ending abyss of black. Wondering, where do I go from here, will I ever be the same again, but at the same time, realizing that I wasn’t saying any of this. I was just thinking it. I think it was in that moment that I completely grasped the enormity of what it was to be unable to communicate. And as I lay there trying to wrap my head around the fact that I can hear myself, but literally no one else can, I realize that actual sound is coming out of my mouth. At first, I was so excited because I thought omg maybe they were wrong I’m going to be fine, I’ll show them etc. But then I realized that everything that I was “trying to say”, was NOT coming out correctly. I like to compare it to the way a 6-month-old baby babbles. But no matter how much I tried I couldn’t say these words in the way I wanted to. Suddenly, then I see my mom. Standing above me, and I look into her eyes with this feverish omg HELP ME look. She knew something was going on, and she needed the Dr. K ASAP. The long and the short of it was the doctor, after being interrupted in her social conversation multiple times, came over to me and looked at me for approximately 2 seconds. Then she turned white as a ghost, and yelled something to the on-call nurse, and she got me down to CT scan I think the fastest I've ever gotten down to CT scan. It was absolutely crazy. 

Then as they're doing the CT scan, I feel as though I'm about to get sick, but as I'm watching the film spin around and around, I keep telling myself, "don't worry, you will be out of this, in a mere 20 seconds. Just keep breathing slowly, and you will be fine. But I couldn't do that. All of a sudden, the CT tech, Dr, K, and my mom see projectile vomit coming out of the CT scanner. Everyone runs in, and all I hear is, "Sit her up, sit her up," I remember trying to help them, but then realizing I had absolutely zero trunk control. I couldn't sit up on my own, I couldn't really lift my head on my own, I couldn't do anything. Then when they felt they got me stable enough to move, we went back up to the PCICU, Dr. K told my nurse who was in charge of me and another patient that night, that she had assigned another nurse for her other patient, and that I "needed a lot of attention". She also asked her to go to the supply closet to grab her some chucks and a few other things, that she wanted to do a bedside LP. She was suspicious that the blood that was in my brain, was causing some if not all of my issues. Sure enough, she did the LP, and the first drop of CSF, came out pink. 

Dr. K was finally able to put all of the pieces together. She also realized through doing this LP, that my pressure was a lot higher than it should have been, that the blood got itself clogged in the shunt, and broke my shunt. So neurosurg was called, and emergency surgery was done that night actually. So that took going to RIC downtown, in 2 days off the table. But as I was able to recover more from that surgery, it became clearer and clearer to me that I didn't feel like the same person who walked into Comer Children's hospital, just 2 weeks ago. When I looked in the mirror, I just saw a shell of myself. I didn't know how to get me back; I wasn't even sure if I cared enough to get me back. At this point, I was in my own little world, that I had created for myself. It's like that peaceful, drama free bubble everyone talks about wanting to be in. Well, I created as close to the real thing as is humanly possible. I wasn't talking to anybody. Not even the speech therapists, and they knew I understood them.  They told my mom that this was all completely normal, but nothing about your 17-year-old having a stroke, and literally having to start again at literally square 1, is normal. 

I remember when the speech therapists would come to my "area." They would bring communication boards, and flashcards, and everything possible to get me to start talking again. I remember, one of them asking me how I felt that day, and I just looked into her eyes for seemingly forever, and then I stared at the many communication boards that were sitting before me. I finally found a word that described what I was feeling. But I didn't want to point to it, because I thought I would get in trouble. The word was afraid. I was so afraid of anyone reading my chart, any doctor or nurse coming into my room, because I equated them with bad news. And as if getting your life taken just out of your reach, wasn't scary enough, I didn't want any more bad news, which was the only thing on my mind at that point. I felt like if I was expecting bad news, it wouldn't be such a blow if I got bad news because I was emotionally prepared for it. 

About 3 days later, a physical therapist walked in. With a walker, and one of those PT belts. And she said, in the most high-pitched annoying voice you can ever imagine, "Hi Kimi! We are going to try walking today! My face? Imagine the best resting bitch face you can. She tied the band around my waist, and put the walker at my bed. I remember feeling so worn out just after literally sitting up. I finally had the courage to stand up. My legs literally felt like jello. Not walking on them for 10+ days and a stroke will do that to you. my right leg felt so heavy. Like it had a weight on it. She said, "Ok we are going to try and walk half way around the floor. But your mom is behind me with the wheelchair if you get tired. I wasn't talking at all. To this day, I'm not really sure if I couldn't talk, or just didn't want to. But I made it to the halfway point! And then she asked me if I wanted to get in the wheelchair, or walk back to my bed. I just started walking. Apparently anything to avoid talking. 

Today? If I know you, I will talk your ear off if there's something I really want to tell you. If I don't know you as well, and/or you don't have a clue about my medical history, I may appear a little standoffish. But once you have gained my trust, it's like we've been besties forever.  But here’s a warning, if you ever do anything bad enough to break that trust, good luck at getting it back. It rarely happens. I love hard, and try even harder. I don't know what tomorrow will bring, but whatever it is I'm ready for it. 

If I Could Go Back and give myself a Roadmap for the next 16 years

OMG! It's that time of year again! As I get older these things come around more and more quickly. I can see that doe eyed "little" girl lying in that bed. Sleeping Sleeping all the time, just to escape the pain. When she is awake, she is just staring at what had become her world now trying to decipher how she could have let this happen, or was this all her fault?  How could it come to this? How could he let this happen? OMG I can't speak or move my right side, is this what a stroke is!? What is happening!? I know all of your questions. I wanted to give you a roadmap of sorts.

For those of you who don't know, which I don't think there aren't many of you at this point, but I had a hemorrhagic stroke on April 7, 2006, as a result of a failed 3rd Ventriculostomy (3VC, ETV, idk there are a lot of names for it). That stroke took away my ability to talk, walk, and pretty much do anything with my right arm and hand. The first few days were pretty rough, as I'm sure you can imagine. Not being able to communicate at all, really is annoying. No matter how much I ever say, "Oh I hate people, or oh I hate working in groups or talking with people, I will never hate it enough to go back to that (If it were even possible)

A lot of people ask me what I would say to that 17-year-old little girl. It would be this. I want you to know, sweet one, that any emotions you feel are okay and valid. There are no such thing as good and bad emotions. There are just emotions. Emotions come and go just like passing clouds. They don't need to be judged. You just need to compassionately gently take care of yourself while the emotional storm hits. You deserve to find the best way possible for you to cope in this moment. There's no right and no wrong. This is new territory for everyone. So, you write your own rules for this. Whatever feels right. It’s completely normal to think you had an awesome day in therapy, think you rocked it and then to come back to it the next day feeling you made absolutely no progress at all, and feeling absolutely defeated.

Lean on those around you. This is too much to have to handle by yourself. I know you have always done things on your own, but bearing this huge burden all by yourself, is so much for you to take on with trying to recover and trying to do schoolwork. Feeling overwhelmed, frightened, doubt, and despair are all normal. Don't fret, they won’t last; they're like passing rain clouds, they come, stay for a little while, unfortunately make your life a little more difficult, and then they're gone. Then you move onto the next hurdle. Trust me. Nothing comes with no reward; it will take you a while to see it, but once you realize it’s there, you will never let it go.

You will have doubts, everyone does. You will wonder is this all worth it, you will wonder where “yourself” is, you will wonder if she will ever come back. But your eyes stay fixed on the one person who has remained constant through this entire thing. The man that “did this to you”. The same man who brought your story to all the neurosurg conferences in the country. The same man who said, I was supposed to be in Texas a month ago, but I couldn’t leave until I knew you were with someone I trusted. If you’re reading this Dr. C, just know this, you never had to prove anything to me. The phrase actions speak louder than words, exemplifies your dedication to my complicated case.

Kimi, I know every year, on one hand you can’t believe another year has gone by but at the same time, it has taken forever, you’ve almost been “disabled” as long as you were not. You can say you’re used to it, but I know that no part of you is. I know every fear you have, and every fear you will have. And I can tell you every single one of them is justified.

So what am I up to now? I’m just finishing up the second semester of my post bacc program. Hopefully working this summer in an unnamed (by choice) research facility as an intern, and then going into my last semester. What am I going to do with this degree? Get a job in research and organizing clinical trials. I’ve made it my mission to not let any child go through what I have. 

My scars are many. I used to be so embarrassed by them. I remember when I had a long, red scar on my neck, and I had to go to a formal dinner, a month after surgery, I told my mom I wasn't going unless I could find a necklace that would cover my scar. But now I get it. My scars tell a story all by themselves. They tell a story that I would never be brave enough to tell on my own; A story that says I survived.