I was just checking my email this morning, when I came upon an
email from the Hydrocephalus Association. Now let's be honest, usually
about 3/4 of my emails, I just send directly to spam, even ones from the
Hydrocephalus Association, but I don't know why, something told me to read this
article, that I would regret it if I didn't, even though I was confused. It was
entitled Please Do Not Try... This intrigued me, because I've been told exactly
the opposite my entire life; that I shouldn't believe I was any different than
anyone else, and that I could do anything anyone else could do. My parents
never treated me any different than my siblings, although some of them will
tell you differently ;-) It was an article, about a girl named Kate. She
was my age, and like me had been premature, and diagnosed with Hydrocephalus as
an infant. She was in the hospital, and during one of her many tumultuous
hospital stays, she woke up one morning overhearing the words of a doctor
discouraging her parents from continuing to use "the pumping
technique" to manually drain her shunt (which as an aside, I wouldn't do either,
because although it may seem fun as a four year old pressing a little bump on
your head, and feeling it fill up again, it is quite painful if you do it over
and over).
As I continued through this article, I
read that she woke up, and listening to the doctor tell her parents not to pump
her shunt anymore, she immediately with tears in her eyes, whispered,
"Don't Not Try" over and over. Right after I read this, I was
thinking to myself, "That's right Kate, you can't not try! If you don't
try, you will miss out on so much! A lot of people with hydrocephalus, not only
people who have had a lot of problems like Kate and myself, have this drive, to
want to live. We don't know we have it, until we are forced to use it. Kate
wanted to live and you could see in this article, her zeal and love for life.
We want a lot of things. We WANT to live. We WANT to try... We WANT to prove
that hydrocephalus does matter, but at the same time it doesn't matter, because
we can do everything you can do. But most importantly, we WANT a cure!
Hydrocephalus is very much a "you're
fine until you're not" type of illness. However, if you become complicated
like I did, or like Kate did, your situation is compounded by several different
factors and it then becomes a constant in your life. Yes having hydrocephalus
makes us different from everyone else. But why does that have to be a bad
thing? I can tell you right now with all the certainty in the world that if I
were to grow up completely "normal" I wouldn't be half the person I
am today. And there is no one definition of "normal." You make your
own definition. So to me, does a normal person have a port in their head, with
tubing down to their stomach and horrendous scars all over their body and a
headache 24/7? YES. And I'm proud of every single one of those attributes. They
always say, "Never be ashamed of a scar, it simply shows that you were
stronger than whatever tried to hurt you."
Reading Kate's heartbreaking story was so
close to home, because it paralleled my own story in more ways than one. It
almost felt like we walked this journey together. She was fine for 12 years, me
14. Like Kate, the shunt, our life support had become for her the same thing it
had become for me= we loved it but we hated it with every fiber of our being at
the same time. Then when Kate turned 12 her entire life fell apart. Me? When I
was 15. She even wanted to become a nurse..... The most important thing I
learned reading Kate's story, was reinforced when I read her heart wrenching
fate was that I felt so incredibly thankful. Many people after hearing my
story, look at me almost with a curious look in their eyes, "How can you
be thankful"? Or "Thankful for what" they will say. I say I'm
thankful I'm alive! Even though my fingers are still pretty paralyzed, or when
it gets cold out, my leg doesn't move very well, I’m still here. So many people
with hydrocephalus can't say that anymore including Kate, she lost her battle
at the age of 25, but her last motivating words inspire me to keep going. Kate
I will TRY for you! She inspires me to keep going for other people who are just
like me. I will keep going for Kate! Until a cure is found, we must do what
Kate said on her deathbed. We must try! RIP fighter no more headaches, no more
lying flat, no more spinal fluid leaks, no more infections… Fly high angel girl......
https://www.youtube.com/watch?v=z0rxydSolwU
