On 4th November 2003, my life changed. The signs that appeared a few months before weren't that easy to miss but when you aren't sure, your level of hope is so much higher than when you are officially diagnosed.
There was the weight gain and I'm not talking about a mere five pounds. Clothes I could wear today would mysteriously tighten overnight and I would need more loose fitting clothes. Then, the headaches came. The first one creeped up on me as I went for my usual evening jog.
I don't feel so good.
"It's probably something you ate," my friend said. We left it at that, I went home and had an early night. When morning came, the headache was so crippling I couldn't get out of bed. I eventually made it to a doctor. Migraine, he said. It's hereditary.
It happens, no big deal.
Two weeks later, I lost vision in my right eye. If you have ever seen the horror movie
The Grudge and have an image of the ghost's eyes going all the way to the sides of her eyes, then yes, that's what I looked like. The irony of the situation was that my first car was being delivered that very week.
So, not a migraine.
The doctor ordered a CT scan. As it progressed, he was convinced I was having a stroke. He freaked. I freaked. We rushed to a hospital across town for an emergency MRI.
No stroke, no tumour. Very cool.
We spent the evening in Tesco's after making an appointment with an eye doctor. The scans were clear. Life was good at that moment. Days later, that eye appointment was the beginning of my winds of change.
"Your eye nerve has ruptured."
Yes, and my favourite colour is blue.
I wasn't sure what this meant, why was he being so matter of fact? Why were there more people coming to verify what the first person saw?
Okay, so?
"Chances are this is the condition you have,
Benign Intracranial Hypertension. You'll display all the signs of a tumour, but you do don't have a tumour. That's why it's called benign."
A fake tumour? Just when you thought you've heard of everything.
Nothing made sense after this. I was referred to a neurologist. It was in a hospital I hadn't heard of in a place I had no idea of getting to. I remember asking my ex, if he could take me. I couldn't see and it would be difficult. He said he had to work and that I could manage just fine because I still had one working eye.
Not as easy as it seems, trust me. There is a reason why you have TWO eyes, and I assure you balance is one of them.
Cue, French friend who strangely was more familiar with the roads than I ever was. Looking back, I remember so many things about this early morning trip that I didn't expect to. I remember telling him not to be late, and he wasn't. I remember he was working on a University assignment about monkey brains. We ate egg sandwiches that didn't taste so right from the hospital cafeteria. I remember coming out from the neurologist's room after the diagnosis was confirmed, looking at him, not sure whether I should cry like a baby or pretend that everything was going to be okay.
It's just an incurable brain condition, there's bound to be a cure very soon.
We prepared for my first lumbar puncture. My friend hugged me, and told me everything was going to be okay. These are words, I've held on to all these years. I've held on to the friendship as well. He's married and lives on a different continent now but him being there for me, on this particular day of my life, is not something I am likely to forget.
Once the lumbar puncture was finished and I was discharged, I grew up. My so-called first love ended and I was dumped within days because he wasn't expecting something so serious.
Yea, I was totally expecting to have an incurable brain condition that would change my life. Who doesn't?
Keeping a job was a bigger challenge. Between meds, concealing the condition, and shuttling myself for lumbar punctures, I struggled for seven years to find middle ground. Why conceal the condition? Would you really want to hire a person who has a brain condition you haven't really heard of?
No, really, think about that for a second. Be honest.
Google (it was a new tool back then) helped a lot during this time. I managed to compile a file about the condition and join online groups who helped me understand the condition better. Cue, Pixel, an old and dear friend who helped a long the way. Together the file of information grew. He's stuck around as well although we don't speak or meet as much as we would like to.
I always had hope that some day they would find a cure in my lifetime. Going into my tenth year, I am not so sure anymore. Has the fire died? A little bit. I know breakthroughs are being made everyday, and maybe it will happen, but still. Maybe it won't.
I had a
VP shunt in September 2010. This happened at a time in my life when I thought I was broken beyond repair. I had no job. Living in a place I didn't want to. And was still no where near understanding the condition than when I had first heard about it. I was in therapy. I felt weak in every possible way.
That was when I started
this blog. This was my place to think, vent and share. In a little while, this blog will be crossing half a million hits. That's an achievement to me, no matter what anyone else says.
If anything, at this point in my life, that is the biggest lesson an incurable brain condition has taught me.
People will laugh and mock what you have achieved. Let them. If you've crossed the road for the first time by yourself, and you're proud. So be it. When I first wrote my book, Excuse Me, I still get comments that the book didn't deserve to be published and people laugh at what a terrible writer I am.
Sure. I finished writing the book within six months of my first brain surgery. If you don't like it, it's okay. I achieved my lifelong dream, not yours.
Life with an incurable brain condition teaches you many things. You learn not to take things and people for granted. Every aspect of your life has a Plan B. And then a Plan C, and sometimes a Plan D.
You learn that small minds and small issues are just that, small. They may hurt and sting for awhile but your every waking hour with an incurable brain condition is spent climbing mountains. You have bigger things on your mind than dealing with he said, she said, they said.
Lastly, and I think this is the most important of all. The people who stick by your side and who love you despite the baldness, the pain, and the scars. Love them a bit more everyday. Not everyone is lucky to have people who stick around.
They won't always understand. I get it.
But when you're down, out, in pain and your memory is failing, you need that little bit of hope to keep you going. I met Peas a month before my first brain surgery. Imagine what a buzzkill that was.
I'd really like to date you. I'm also having brain surgery, you cool with that?
I don't think I would have made it through the past three years without him. He's been my rock when my legs felt mushy, my surfboard when the waves got rough, my eyes when I couldn't see and most of all he's my guiding light when this strange road of Incurable Brain Condition gets a little too dark.
That's my 10 years. In a nutshell. Now here's to the rest of my life. You coming?
