Devotions and disability

For anyone who's followed this blog for a while you'll probably have picked up on the fact that I deal with chronic pain on a daily basis, mainly because of how many variations on "Oooo, me back," I manage to come up with...

I've had problems with my back since I was a teenager, on and off, but after two pregnancies things got considerably worse and the problems more persistent. A brief stint with a chiropractor helped me get back to normal, ish, after I had Rosie, until my back totally crapped out just over four years ago. I wish I could say it crapped out while I was doing something exciting, but I was just sitting at the dining table at the time. Sad but true.

Since then I've had surgery, which helped me walk without aids again, as well as get off the morphine, and I've got a regime of medications that help me manage the day-to-day pain – I'm still on pretty strong painkillers, but not as strong as morphine these days. After this amount of time I have a good idea of the things I can and can't do, and I know my limits. Every now and then something happens because of my own poor judgement or "just because" and I have a bad flare that has me incapacitated and doped up on stronger painkillers and muscle relaxants for weeks at a time, sometimes months, but over all I wouldn't say I'm proper disabled. I'm a part-time cripple, at the most.

I'm painfully (no pun intended) aware of the fact that my problems are chronic and degenerative, though, and this means that eventually my back problems will worsen significantly. At that point further surgery might help, again, but whatever happens I'll always have to deal with the pain and the side-effects of the medications, to some degree or another, as well as the limitations that come with having an Officially Shite Back (or degenerative disc disease, if you prefer). Sometimes those limitations aren't just physical – not being able to push a trolley round the supermarket once it's full, say – but can affect me in other ways.

In particular, it can affect how I might express myself religiously or spiritually. When I plan out what we're going to do for festivals, for example, I have to make sure I don't over do things and try to cram in more than I'm capable of. If I have big ideas then I have to accommodate a bigger timeframe to ensure it gets done. I have to have an idea of things I want (or need) to do, as a bare minimum, as opposed to the optional extras that I might want to do as well – things I can juggle around or postpone in case I'm having a bad day, or whatever. If I need to spread things out over a few days, then that's OK; there's no point trying to battle through the pain and do for the sake of doing, right? And if I need to do something lying down rather than sitting or standing, then that's OK too. Needs must, and all that.

On top of that, I need to think about what I'm going to be doing and whether or not any medication I need to take might affect my ability to do that. For the most part my medications are an essential part of my daily routine that help me keep feeling "normal" now – missing a dose of Tramadol causes withdrawal symptoms, for example, that will have a knock on effect on my ability to sit still – missing a dose or taking it too late means I'll get relentlessly resltess legs and increased pain,  for one thing, which inevitably affects my concentration. But during those times that I might be prescribed extra meds, like muscle relaxants, even the effectiveness of a simple prayer can be affected by having taken a diazepam; drifting off to sleep mid-prayer or being unable to concentrate properly is hardly conducive to being able to be at my most receptive or communicative. So in those cases, timing is important.

So it's all been a bit of a lesson in compromise, and certainly in mindfulness, and it's definitely spurred me on to try and be more adaptable and flexible in my approach. When I was starting out – before the problems kicked in – I'd often concentrate on cramming in as many details as I could, and I'd worry about making sure I got everything done. Having to accommodate a baby, and then a toddler and a baby, helped me relax a bit on that one, and I slowly learned to aim for more realistic plans. It helped me realise (and not without some gentle but sage prodding from those wiser and more experienced than I) that while the doing is an important part of any religious practice, it's not the be all and end all of it. The doing and the details are important, of course, but there has to be a balance. When you start getting so caught up in the details that it starts to overshadow your actual experience, then it's a problem...

On the other hand, however, when you have to be aware of your own limitations it can be easy to get caught up in them, too. It's easy to start obsessing about what might happen and the what ifs... It can be easy to think that there's no point doing this or that because you might suffer for it later... To the point where you end up barely living at all. It seems that maybe the fear of pain, of negative consequences, is often greater than having to deal with actual outcomes. So it can be easy to wallow in those limitations, getting to the point where no real effort is made, and these are all traps I've fallen into at times. At the same time, I won't say I've never made rather stupid decisions in spite of knowing my otherwise sensible limitations, either.

It's all a bit of a delicate balancing act, and I don't think there's any particular right answer. What works for one person may not work for another; what works in one moment might not work in the next. It's a constant, evolving process, and to be fair I think that's the same regardless of your limitations and abilities, or lack thereof. The bottom line, however, is that being somewhat limited in what I can do, at times, it doesn't make my experiences any less real or meaningful to me. It doesn't make them any more real, either, because I'm still me regardless of how capable – physically, mentally or emotionally – I may or may not be at any point in time. What matters to me is that I try, and I do (as much as I am able), regardless. Sometimes I have to accommodate my limitations, or accept that I'm simply not able to do something because of them. Sometimes my inability to do may not be physical per se, but mental, or emotional, for sure.

Ultimately, it also occurs to me that in spite of however I may or may not be likely to end up, I can still appreciate, and be thankful for, the now. On those wallowing days it's something that can be easy to lose sight of. And regardless of however I might end up, physically, it won't prevent me from being able to do something in one way or another. It may, however, take some adjusting, and compromise. Mentally and emotionally, there may be some catching up to do when the time comes, too.

But if there's one thing I've learnt, then it's that I'm more than capable of getting there in the end – wherever "there" might be. My idea of what I should do, of what's necessary as part of a practice that's fulfilling to me, has changed many times over. One size does not fit all.