I am determined, first and foremost, to live. Just because I have orthostatic intolerance doesn’t mean I’m going to lay down and die – I can lay down and form a new life.
But it really is forming a new life.
The things I used to do aren’t available to me anymore. Before, if I was ill I would read loads of stuff. Now my brain can’t cope with that. Instead I’ve taken up watching stuff, DVDs and internet TV. It’s totally alien to me as a hobby, but it’s something I can usually manage alright, especially if it’s mindless and doesn’t actually require much attention. So, reading out – watching (and listening) in.
I used to socialise with people face to face, but turns out people aren’t so interested in seeing you when you’re disabled and housebound. So now, most of the people I talk to I’m talking to online. I’m kinda used to that from growing up in this new age of technology, but what I’m not used to is never seeing anybody in real life as well. I don’t encounter people randomly on the street, or exchange greetings with shop workers, or sit down by myself while the world walks and talks around me. I’m on my own most of the time. It’s hard to adjust to.
I used to do everything myself. Making food from scratch, making clothes, DIY. I love the idea of self-sufficiency, and hate spending money on things I can do myself. Sadly, I now have very little I can do myself, so meals etc. are significantly more expensive, and new clothes are currently out of the picture. But I can manage a little bit of crochet or knitting, maybe a little sewing. Not super exciting, but not super strenuous if I stick to short stints.
Basically, all my old hobbies required energy, and I need to find new things that don’t. Things that don’t require going out, or moving much, or thinking much. But there are things like that, and I’m not going to do nothing just because my initial loves have been taken away from me.
Oh, I’m still trying to game. But in small doses, and only games I could play in my sleep (for obvious reasons).
That’s just a glimpse of hobbies though, to show how everything has to change. A year ago, I was into totally different things, and I had totally different ideas on how to spend my time. It’s somehow like I’m a different person, but still the same person. It’s strange.
Hobbies are one thing, but what do I do with my life? Well, here’s where it doesn’t seem to change so much. I mean, I loved my job and education, I really did, but they were never the point of my life. The point is to love God and to trust God and to do His will, right? He knew that this would happen to me when he chose me, it wasn’t a surprise to Him. Whatever His plans are for me, they catered for this. So the whole goal and purpose of my life is the same – yay! Except that, I still need to work out what to do.
Part of what to do, is to work out who to become. To try to become closer to God and do His will. To read the Bible and apply it to my life. And part of it, is to work out all the changes. The hobbies, the activities; work out what I can do now that will glorify God. I’m praying a lot more, for a start – somehow it’s easier to pray when you’re not capable of much, so I think I have an advantage there.
I’m not sure what else to do, to be honest; but I’m thinking about it. I’m trying to adapt to the new world that I live in, and become more of the person I was meant to be. I still have the same struggles that I always had, and the same struggles that everyone else has; loving, forgiving, learning; but I now have all these new struggles like corrupt government organisations lying about me so they don’t have to help me (wow, sounds pretty James Bond when you put it that way), and trying to work around a brain that won’t function and get about with a body that’s the same. How do I socialise when I’m isolated? How can I get a healthy diet when I can’t cook? Life is still… interesting.
Then there’s other things I’ve had to give up, things that are more precious than hobbies. It’s hard to turn your back on the career you wanted and were training to get. I loved what I did, I really loved it, and the knowledge that I might never go back is heartbreaking. I guess I have to stop looking back, right? I’ve had to give up my fun ideas of learning martial arts, riding a motorbike, joining a band… the cool stuff I wanted to do, but didn’t have time for, and now might never make. I might have to give up the hope of ever having ‘real’ friends, close by – I’ve not given up quite yet, but I know that it might not be an option for me.
The hardest thing right now, is giving up the hope of ever having a family. Jephthah’s daughter took two months in mourning over the children she would never have, but I think it might take me a lot longer. I don’t mean that it’s an impossibility – miracles and treatments may one day abound – but I can’t hold onto it as some beacon in the distance. Right now, all evidence is that I will never be able to raise children. I can hope, idly, but it’s not a real hope, not a hope I can hold onto. If I grasp onto something foolish I’ll make myself a fool.
If I live for the possibility that one day I’ll get better, I will never live until that day comes. If I accept the way things are, I can live despite it all – and maybe one day, things won’t be that way.
I’m going to find what God wants me to do. I’m going to trust that He has plans for me, good plans, and that the person He’ll make me to be will be worth all the hell I’m going through to get there. I’m going to live, even if it’s horizontally. I’m going to love my enemies and pray for those who hurt me. I’m going to keep fighting against injustice and evil with the only weapons I have, and I’m hoping that I’ll face down these struggles so that people coming after me will have a well-worn path to walk in.
This wasn’t what I wanted, but God will make it better than that.