You don't have to understand the world. You just have to find your own way around in it. - Albert Einstein

Friday, 22 March 2013

on the Unbearable Pain of Being Alive

My family and I have had at least our fair share of health problems and hospital stays, but I never really understood how much pain there is in the world until I became Mr CJ's carer.

When he first became unwell, I knew that it would take a long time and a gazillion tests before they worked out what was wrong with him. But I was still naive enough to imagine that once they worked out what the problem was, they would be able to treat him, and he might not get cured, but at least be able to manage and learn to live with it.

That was four years ago. It turns out that even with all our whizz-bang medical technology, there's not much they can do with him other than prescribe addictive painkillers that just dull the pain, just a little. He's still in almost constant, intense pain. Whenever I look up from what I am doing, whether it's the dishes or a puzzle or blogging, the first thing I see is Mr CJ heroically bearing up under incredible pain. The first thing that happens every morning is that I have to get him to get up and take his morning meds, and my god is he in terrible pain when he first wakes up. In a way it's a constant reminder of how lucky I am, and I certainly don't complain about much any more. Priorities become crystal clear in the face of chronic pain. But it's also true that I'm living with his pain 24-7 and it's just fucking heart-breaking, to watch helplessly day after day while there's just so much pain everywhere I look.

And it's not just Mr CJ. There are actually thousands and millions of people around the world suffering chronic pain of one kind or another, and there's really nothing much that can help them. I see all these people whenever I go to the Pain Clinic for an appointment with Mr CJ, or to Outpatients to pick up his meds. The waiting rooms are full of them. I can't help but imagine all the waiting rooms in all the world, and all the people suffering and desperately hoping for an end to the pain. I was one of them for about a year, when I had a bad back, but I was lucky enough to be one of the few success stories, and I got pretty much all better. I feel the weight of all this suffering throughout my whole life now. Sometimes I just despair at the hopelessness of it all.

Today is a day we've been waiting for for a long time. He's been on a waiting list for almost a year to have this procedure that helped him a lot last time he had it - and that's pretty lucky. A lot of people are waiting much longer. The doctors may want to do this treatment again if it's successful - but then it will be another year or more on another waiting list. In the meantime, there's just all this miserable fucking pain.

There was a girl in the waiting room today. She was a young one to be in there, only about 21 at a guess. She was there with her boyfriend, both of them seeming pretty white-trashy with their tacky tattoos and loud complaints about not being able to go out for a cigarette. Now I did not mean to eavesdrop on her pre-treatment interview with the nurse, but it's a bit hard not to when you're all jammed in elbow to elbow in a tiny waiting room. She was here for an epidural - I got the impression she was having the same kind of treatment I had on my back. She asked the nurse if she'd be having a general anaesthetic. The nurse said no, "It's just a little needle." And this point the poor girl just absolutely panicked and lost it. She said that she'd had this procedure twice before, and once it had gone wrong. The needle had hit a nerve in a bad way, causing her excruciating pain. She didn't want to go through it, she wanted to just go home. Her boyfriend was being pretty wonderful. He dropped all his tough-boy attitude and became all cuddles, comfort and reassurance. He talked her out of going home. He said "They won't do the surgery on you if you don't get this done." Ouch - surgery. This girl has a long way to go, and right now, she's panicking in a waiting room.

So I made my apologies about the unintentional eavesdropping, and I said to this girl, "I had this procedure done, and I was a success story. I used to use a walking frame, and now I'm totally fine. And your doctor (whose name I had also overheard) is a really good doctor. I've known a lot of doctors, and really, he's very good." This was totally true - I wasn't just falsely reassuring her. I told her how I understood that if you've had a bad experience in the past, it can be really scary to go there again. I wished I could have said "Nothing like that will happen again" but of course that's bullshit - there's always a risk. So I said "That probably won't happen again." That's going to have to be good enough for her, just like for everyone else.

And she started to breathe and wrap her head around the concept of going into that theatre to face an epidural conscious. Her boyfriend started to tell her about how they would have such a nice relaxing evening tonight, watching DVDs, and he's going to cook dinner. Would you like a carbonara, he asked. She sniffled and nodded. He got her talking about ingredients - will I get some mushrooms for it? And I was thinking, this bloke is doing a really good job dealing with her distress. He picked up a Gourmet magazine from the coffee table, and starting going through it, showing things that looked yummy to his girl, getting her thinking about something else to distract her. Then he got a bit annoyed with that magazine and plonked it back down on the coffe table, picking up another one instead. He said - really, I swear he said this out loud - "The recipes are so much better in Woman's Day, anyway."

By the time Mr CJ was called in she was pretty much calmed down, and the recipe for tonight's carbonara had grown into something astoundingly gourmet. I thought about making a joke about how I would kidnap her boyfriend while she was in there and take him home to cook for me, but you don't want to joke around in that state. So I just reminded her that a lot of the other people in this room would be having their treatments today and then going home to cook their own dinners. She got my point.

I'll be nipping back up to the hospital to pick him up soon. We are all praying for one simple thing - that he will wake up in the morning and not have a headache. Please pray with me. We need all the help we can get.

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