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.
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