Tears, Fears, Hopes and Dreams.

WARNING!!! THIS BLOG MAY NOT MAKE ANY SENSE....

It’s amazing how the mind journeys when you are left by yourself....

What are you most afraid of? What are your dreams? What things in life would you change if given the chance?

I ask myself these questions a lot and over the past 6 months, the answers have been varied and many. I have changed my mind a lot. Or maybe my mind has changed me...

So here goes.

What am I most afraid of?

I hate the thought of drowning and being burnt alive but I think these are common fears that a lot of people share.

I’m scared of dying. Probably a stupid thing to be afraid of since it happens to everyone eventually.

But out of everything, out of all the things that could happen, what scares me most is the constant nagging feeling in the back of my mind, that one day this medical condition might get the better of me and I will leave my family, alone.

The mental strength it takes to push this thought a side is tiring, it wears me down and I sometimes lose the fight but it doesn’t stop me from coming back swinging.

I’ve had to look in to the eyes of my family members and friends telling me everything will be ok, seeing through it all. They’re just as scared as I am, if not more so. I can’t describe the physical pain that leaves in my chest. The weight of guilt that I feel seeing them go through all of their emotions while trying to soothe mine at the same time.

It’s hard to believe that 6 months ago, I was in a wheelchair, I couldn’t walk properly, I couldn’t talk properly, I couldn’t hold a pen, I couldn’t catch a ball, I couldn’t smile properly and I couldn’t play guitar. I had never realized how much of my life I take for granted. Things that always came so naturally, I now had to think and concentrate for me to be able to do them. It wasn’t as if I could do them well either.

So many emotions ran through me at this time. Fear. Anger. Disappointment. Guilt. Helplessness. Sadness. Confusion. And they’re only the ones that I can point out.

Everything was so hard to process. It still is sometimes.

But I am not a negative person. I will not feel sorry for myself and “I Refuse To Lose!”

So, all my emotion got replaced with just one thing DETERMINATION.

I had physio every day, exercises to do every hour, which I was doing every 10 minutes. I concentrated really hard whenever I was talking to someone to make sure I was pronouncing everything correctly. If I stumbled on getting a word out, that word would be repeated several times before the conversation would continue.

I got better and I got better quickly! My physio was so impressed. And within a week I was walking, no wheelchair and no one holding me! I had a lot more movement in my body but I was a long way off from being able to do what I could before...

Home.

Having what was basically a miniature stroke. One of the most traumatic experiences of my life.

Getting up on stage 3 weeks later for our bands first show in Adelaide. One of the best feelings and proudest moments of my life.

10 weeks later...

3 seizures.

Shunt totally blocked, possible infection.

Having a seizure is like... Having all the emotions and senses in your body explode and then... BLACK.

Margarines.

Projectile Vomiting.

You can read about the symptoms but unless you have actually been there, you can’t understand what it’s like. The scary part about it all is the amount of people out there that will know exactly what I’m talking about.

External drain. 1 ½ weeks...

Don’t move. Don’t get up out of bed. Stay in line with tragus EVD.

Anti seizure medication. 850mg

Am I drunk? I don’t remember drinking. Spinning. Shaking. Crying. Emotions Explode. Fighting. Fighting. Fighting. No, Sarah. Just relax and go with it...

Shunt down the opposite side of my body. Everything is closer to the surface.

Staples, stitches, dressings. Drips, blood tests.

So much in 3 weeks, it’s a wonder how the brain manages to comprehend what’s been going on and hold on to the information.

Physio again.

HOME.

I hold on to all these experiences and memories. I don’t want to forget how it all felt. The memories encourage and push me to make a difference.

But the experience has changed me. I had always thought that music was my mission. Now I believe that it is just one piece of an overall bigger picture.

ENTER THE WORLD.... The Brain Drain Project

This is my baby, my “hopes and dreams”

My one thing in life that I want to change, I hope to do it through here.

My hope and dream is to help others that have my condition. Find a cure. Create a better life for those affected. I will put all my heart and soul in to making this happen.

Because I don’t want to see that look that I get from my family, in the eyes of others and their families.

I don’t want others to feel the way I and thousands of other people have felt when things go wrong with hydrocephalus.

And I don’t want to look back at my life, looking at how lucky I am, how much I have been given to have wasted it all by standing back and doing nothing.

To all my friends out there with hydrocephalus and or any other neurological condition...

STAND UP. BE PROUD OF YOUR SCARS. Think of them as medals that you can wear with pride because it shows that you have fought in battle and won.

I know that what I have been through is nothing compared to what a lot of people with hydrocephalus have.

It makes me work harder.

I AM LUCKY. I AM BLESSED.

I WILL make a difference. WE will make a difference.

I REFUSE TO LOSE.

SarahBrainDrain