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Muddling through

Everyone is currently talking about Terry Pratchett’s programme on assisted dying. I didn’t get to watch it as it was scheduled too late for me (I have Lights Out very early because I’m so ill). Other people’s choices are none of my business, so I have no comment or judgement on the issue.

What I can say is that I’m very very glad that I exist! However, I have a worse quality of life and suffer far more significantly than most people who commit suicide or who go to Dignitas. My condition is constantly deteriorating and every day there is the threat that I might die. Every day I don’t know if this will be the day that one of my organs might finally completely fail. Would others consider that my life is not worth living? I’m bed-bound, unable to sit up, unable to speak; a nurse bedbaths me, someone has to hold a straw to my mouth for me to drink my liquid food. My current condition is unbearable. The severe symptoms, 24/7 physical distress and agony is intolerable. And yet, I’m still alive. I see the minutes moving by on my clock and I’m still here. My will to live, to survive, has never been stronger. I don’t want to die. In fact, I never want to die. As I said, I’m very very happy that I’m alive!

People say “You must be so brave. I could never cope with what you’re going through.” Brave? No. I’m absolutely terrified most of the time. Besides, bravery implies a choice. I have no choice. You don’t choose to be ill. Illness strikes anyone: the brave and the cowardly. And I’m one of the cowards. But the minutes go by one by one and I have to live with it, live in the hell. I’m completely helpless to change my situation. Doctors can’t get me better. I’m desperate to get better though. I try treatment after treatment. I take tablets and supplements. I don’t know if I believe they will get me better anymore. I used to get so excited before starting each new treatment regime/medicine, thinking ‘this will be the one; this will be the thing to get me well.’ After so many attempts and failures, my hope is dead. But I keep on trying. I am so desperate to be healthy once more. If a medicine is going to work, it’s going to work. It either does or it doesn’t – it doesn’t need my hope or belief to work. It hurts too much to hope.

It’s like God – he either exists or he doesn’t. Hope or belief doesn’t change whether he exists or not. Some days I believe in God, some days I don’t. My headaches are so severe that I can’t formulate thoughts or pray. On the days that I am able to think, it hurts too much to bring myself before God or to think of him – of the fact that he has the power to heal me, but doesn’t. But why would he choose to heal me above anyone else? I don’t know what makes him save one person over another. I don’t know what makes him intervene in some cases and not in others. And no amount of praying, of crying out to him in desperation, it seems, can make him change his mind. God is going to do what God is going to do. And there’s nothing we can do about it. He’s God and we’re not. Sometimes I think that I love God – how can you tell if you love him? But I think that I hate him sometimes too. I don’t like that I feel like this, but it is the truth. I guess that’s what a relationship is like – sometimes you love, sometimes you hate. But I figure, if God does exist, he can handle it. And he understands.

I can’t help but feel like I’m living at the very crux of the matter. At the choice we have to make: whether we ourselves want to be God, thinking we know best, wanting our own way, wanting him to do what we want in the way we want, for him to do what we feel is good and right, wanting him to be who we want him to be – the God who rescues us, who always intervenes in the way we want OR whether we surrender, whether we decide to trust him to do whatever the hell it is that he’s doing and that somehow, however unlikely it seems or feels, however little we understand why he could let all the awful things in the world happen, seemingly with no good purpose, that somehow he is working it all out for the best, for our good.

All I know is that it sucks not to be the person God chooses to heal. The phrase ‘God does not give us more than we can handle’ is codswallop (and also, not in the Bible anyway). I can’t handle this suffering. People always say that God will pull through when you’re in the greatest need, that he is faithful. Well I have found him to be spectacularly absent. I don’t know what I expected – maybe my expectations were wrong, or maybe I have the spiritual discernment of a marshmallow – but I thought I would get more help than this, thought he’d be more of a comfort, give me more support, give me more strength to cope than this.

I don’t mind admitting that i’m terrified of dying. I’m terrified that God doesn’t exist and that oblivion awaits. I’m not exactly the best advert for God! My favourite verse of the Bible was always ‘God is love. And those who live in love, live in God and God lives in them.’ I think that verse is what I believe in most. The one thing I know for sure is that I completely and utterly love my Mum, my Dad and my brothers more than anything. So I think that I do believe that I live in God and that God lives in me (even if I’m not aware of it), otherwise I wouldn’t be able to love (since God is love).

So today I do believe that God exists. I don’t understand him or his ways of doing things. I’m just looking for the truth. I’m looking to find how he can be real to me during this time. At this point I can’t find his reality or his kingdom in this place of torture that I’m in. Has anyone got a working pair of God-antennae? Some God-lenses to fit into my glasses? No? I guess i’ll just have to muddle on then.

[This was written over a long period of time, sentence by sentence, on Jenny’s iPod]

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