There it is.
Death. The big one. The one we brush under the rug, or run away from, or bury our heads in the sand over.
I can remember absolutely the day I thought this will kill me. I was in an appointment with my regular GP. We’d just started to go through the process of getting ready to go on interferon/riba. It was in December 2012. I was expressing my anxieties and concerns. She said, quite bluntly “Well if this doesn’t work there’s always the liver transplant list.”
I beg your pardon? Liver transplant list? How sick do you people think I am? The answer was:
Very sick and likely to get sicker.
I didn’t feel sick. I didn’t look sick. I didn’t act sick. I couldn’t possibly be sick. Over the next few months I was bombarded with words that terrified me: HCC, liver cancer, liver failure, chronic, degenerative ... it went on and on.
I remember waking up at 2 in the morning struggling to breathe. Bursting into tears on my way to work. Crying at work. Shaking. Unable to think, unable to function, unable to cope.
Because it’s not meant to be like this, right? We’re meant to slip off peacefully when we are old (but not yet a burden). We’re meant to have some control over this. We’re meant to outlive our parents. We’re not meant to die like this. Young. Perhaps with a young family. Still with so much to give, so much left undone.
I knew somehow I needed to make sense of all this. Or if making sense was not achievable, then I needed to at least reach some sort of detente. I just didn’t know how to make that happen.
I wish I could tell you what changed it all for me. When I think about that time, I think I scared myself so much that I realised I couldn’t keep living with that level of terror. I was more scared than at any other time in my life. I spent so much time thinking about dying, I forgot to focus on living.
So I made changes.
I made time for the things I love. I don’t put anything off. A play I want to see? I go. A band touring? Count me in. Out for dinner? Don’t mind if I do.
I learnt how to say “no”. Okay, I’m still learning that one, but I’m trying. No to the meaningless tasks. No to the interruptions. No to the negativity.
I maintain contact with my family and friends. They’re important. At the end of the day, they are always in your corner. Like Robert Frost says: “Home is the place where, when you have to go there, they have to take you in”.
I find joy in the small things. Rain on the roof. An unfurling rosebud. Water on a nasturtium leaf.
I make my own luck. I’m not prepared to abrogate responsibility for my life to someone else. If dice are going to be thrown, I’m going to be the one who throws them.
Sounds like I’m getting it all worked out, yeah? Not so much. I’m trying, but I’m not there yet. I’m still scared of dying. I still worry that I won’t be cured. I still worry that this will kill me. I worry about leaving my children without parents.
But I’m not going to let fear paralyze me. And if I can maintain this approach no matter what I’ll be really proud. Of me.