Waiting For My Real Life To Begin

Going through cancer can be lonely and confusing as hell. Lonely physically, spatially, but it can be mentally isolating, overwhelmingly so. This is in part because, mercifully, most of your loved ones will not have much of a clue regading what is on your mind, or what you’re going through, hard as they might try. And they do. I apologise for sensitive sap that follows but I am nothing if not sensitive. My insides are comprised of the films of Zach Braff and…glass.

I’ve always loved music. Music has always been a part of my family, whether this is a uniting factor is left to be decided. Christmas concerts with my cousins used to strike fear in my heart. Nonetheless, I love to sing. I used to play piano, and I was about to take the next grade before I was diagnosed. When my grandpa died, the first thing to make me cry was that he would never hear the song I wrote on the piano. As this was my first experience with the death of a close relative, the song ‘For the Windows in Paradise, for the Fatherless in Ypsilanti’ by Sufjan Stevens was one of the few things that made me start to process the grief. How heart-breaking and final it was, something no one can put into words. My music taste may repulse some but I was 14, it wasn’t exactly developed. Nor is it now.

About a year before it all kicked off, I was learning about the Vietnam War from one of my favourite teachers. Our teacher was trying to hammer home the frustration and angry sentiment in America as the war progressed, specifically from veterans themselves and peace activists among them. It is difficult to guage from the textbooks available the kind of emotion that was felt by this generation of conscripts, especially with the emotional compass available to 14 year olds. Our teacher taught us the numbers, the dates and guerrilla warfare, but what hit home, and why this subject is one that still captivates me and many from my class, is the songs of the time that our teacher played to us.

In one lesson, we walked into the classroom and found the lyrics to Bruce Springsteen’s “Born in the USA’ on our desks, which our teacher felt encapsulated what many of those at the time felt. He played it at full volume in the classroom and we all read the lyrics down the page as the song ran on. Whereas in history, the crucial dates and battles are written and read for eternity, the atmosphere, the feeling, the gravity of those eras I found most potent in the songs and literature of the time. I didn’t know what it felt like to be drafted for a ‘pointless’ war but this hammered it a little closer to home.

In the deep, deep darkness that this sickness can put you in, not only is it difficult to talk about it with people who don’t understand but also sometimes it’s impossible to understand how you feel yourself. I can talk for days about cancer treatments and what to expect but my own words are so paltry when it comes to the feelings, the atmosphere, the fear, the colour that life takes throughout the many stages that cancer can go through.

The night I got the call about Stage Four Cancer, I had no idea what to do. So I sat down and wrote the awful song “Lights”. It’s sappy but I struggled so hard to put into words the melancholy, the fear, the faint glimmer of hope, the uncertainty but I couldn’t and I still can’t. But a certain chord progression seemed to tap into what I couldn’t vocalise. Something like a different language that didn’t ease the pain or quell any fears but they were both expressed, if only to me. A bit of catharsis. There are so many times when someone asked how I felt or what it’s like or what to do or how to act and I just wanted to play them a song or watch an episode of something and say ‘this is how I feel’. I have a whole separate, and probably equally pointless, post to write about what movies and TV meant to me. How sad.

A weeks or so after Grandpa died, I was worried about Mum. I don’t know if I regret this now but I give myself a pass for being 14 and short-sighted. Coldplay’s album ‘X&Y’ had just come out and there were two songs on it that actually seemed to put into words and chords what I thought we were feeling, especially Mum. In the car one day, I put the CD in and played the beginning of the song ‘Talk’:

“Oh brother I can’t, I can’t get through
I’ve been trying hard to reach you, cause I don’t know what to do
Oh brother I can’t believe it’s true
I’m so scared about the future and I want to talk to you
Oh I want to talk to you”

Mum had to pull over. We both started to cry. I think I just wanted to share in the grief with her. At fourteen, there wasn’t much I could say to make anything better, nor should I have, but I wanted to show some solidarity and understanding. I’ve only seen my Mum cry, maybe, four times in my life. The woman has cahones. The other song is ‘Fix You’ but it’s toooooo sad.

When I googled ‘songs for cancer’ (yeah sorry) to try and jog my memory a bit, I saw that everything was about ‘cheer up music’ or ‘inspirational fighting’ music. There is a lot right with that but the market is oversaturated. Maybe all you want during this time is not to think about the sad scary stuff, and that is totally okay, I only watched happy comedy films and crap TV. I know One Tree Hill back to front. This is more like when you read a book, and a paragraph stands out that makes you want to say ‘God yes! That’s what I’m thinking!’.

When I came out of surgery, my best friend Julia made me a mix-CD (remember them?) with songs that had ‘cancer’ or ‘being sick’ and ‘taking care’ of me in the title and one song about a woman called ‘Edna’. I listened to it non-stop. Julia is an absolute rock. I mean that she is both a loyal friend but she was always impenetrable when it came to the mushy stuff. As my best friend she was there all the time and I felt supported but that CD, depressing in parts as it may have been, it expressed to me that she was there for me whatever was coming and that even if we were both scared we would face it together.

The song that meant the most to me, and I think sums up somewhat how I feel about my time with cancer, and infertility, and kidney disease, and being intersex is called ‘Waiting for My Real Life to Begin’ by Colin Hay. It’s supposedly about someone who has not achieved what they want in life but won’t let go of their plans. I took something different. For me this is as close to a support group or someone saying ‘I get it’ as I got at that age, and it still means a lot to me now. It got me a little further to accepting that this life is not at all what I expected, and I still have big plans and lots to accomplish but my health will sometimes bring me down. That this time is hard and sad but there will be something better to come and I just have to be ready for it. Just keep checking and be ready for it and keep moving forward. It also helped me grieve the life I took for granted at the age of 15. I got it from an episode of Scrubs (thanks Zach Braff). 

I sat in my hospital room when I was on my own and listened to the song on repeat trying to make sense of what was happening. At one point, I told my mum that this would be the song I would want at my funeral. This song was both my ‘Keep Going’ and my ‘Oh Fuck Why?!’.

Anyway here is the song and the lyrics – in the style of my history teacher. Maybe it will mean the same to someone else too.

Any minute now my ship is coming in
I’ll keep checking the horizon
And I’ll stand on the bow
And feel the waves come crashing
Come crashing down, down, down on me

And you said,”Be still, my love
Open up your heart
Let the light shine in”
Don’t you understand?
I already have a plan
I’m waiting for my real life to begin

When I awoke today suddenly nothing happened
But in my dreams I slew the dragon
And down this beaten path
And up this cobbled lane
I’m walking in my own footsteps once again

And you say,”Just be here now
Forget about the past
Your mask is wearing thin”
Let me throw one more dice
I know that I can win
I’m waiting for my real life to begin

Any minute now my ship is coming in
I’ll keep checking the horizon
And I’ll check my machine
There’s sure to be that call
It’s gonna happen soon, soon, oh so very soon
It’s just that times are lean

And you say,”Be still, my love
Open up your heart
Let the light shine in”
Don’t you understand?
I already have a plan
I’m waiting for my real life to begin

—-

On a clear day
I can see, see for a long way

On a clear day
I can see, see a very long way