Thursday, 31 December 2009

What Am I?

Living in a twilight world between the well and the ill I feel not entirely comfortable in either sphere.

Words like recovery, improvement and cure don't sit easily with me. There is no such thing as recovery as we can never recover what we were before illness struck. Illness changes us and it is to be welcomed for doing so. We grow and gain insights that we never had before. Improvement suggests that what went before was in need of enhancement in some way. I don't know. It's certainly an improvement to be using my wheelchair less and driving more in one respect. But was my status as a wheelchair user and public transport regular something that needed 'improving'? I suppose I'll settle for the fact that my health is improved, in some respects. Cure? No such thing. Not with what I've got. I prefer to talk in terms of windows, space, phases, cycles. It makes more sense. Ups and downs. Plateaus, peaks and troughs.

So why am I moaning about improvement, progress, whatever you want to call it? I don't feel so connected with my blogging buddies, because I have been too busy being 'better' to blog regularly. I got a first in a recent OU course and am very proud of the fact that I acheived 92 per cent in the exam. I have pretty much launched a small preserving sideline for friends, family and neighbours and am thinking of doing it on a larger scale. And I've been more involved with my son, making sure we have adventurous excursions and fun together. And in doing all this I've let a world that was supportive, engaging and fun slip through my fingers. Facebook, with all those past acquaintances (only a handful of them actual friends) is dull in comparison. Plus I feel very much in crip corner on there.

Put me in a group setting for people with my condition though (at our specialist NHS clinic) and things are very different. I was told I have superceded the point at which people normally join the group. So I'm now too well. And boy do I know it. No one seems pleased that I can do more than them. People actually seem wary, suspicious, unfriendly and irritated each time I pipe up with some pearl of wisdom or other. The therapist seems to love the fact that she has someone there who is living proof of the pacing therapy they teach actually working (even though it was only a part of me 'improving'). I suspect some people in the group have become so attached to their toxic 'friend' (as I sometimes call long-term ill health) that they are not quite willing to contemplate life outside its clutches. How else do you explain the reticence, the sideways glances?

Of course, if anyone had suggested that I was too attached to my illness a couple of years back I'd have flipped. But was I? I stopped calling it my illness for a start. And these days I try and disassociate myself from any niggling symptoms like pain, noise sensitivity etc. with mixed success. I kind of feel I am doing to get better, rather than waiting to do.

All in all, it's been a very reformative year. And I am hugely different. Even tea with old friends yesterday felt different. Everyone sensed it. No one quite knows where to place me. All I know is I'm in a place that suits for now, and I'm happy to build on it. Tentatively.


David said...

I'm so glad your doing better and improving! Hope you have a great 2010!

The Goldfish said...

I've found that however much I have wanted it, phases of improvement are almost as tough as deterioration - much much tougher than staying on a level. More unknowns, more risk-taking and more difficulty with other people's expectations and assumptions. You don't know where you stand with your own changing limitations, let alone anything else.

Ill worlds and well worlds remind me of Groucho Marx not wanting to belong to a club that would have him as a member. I don't want to belong to a world whose identity is illness, and I don't want to belong to a world whose identity is health. I'd rather stick to the worlds of my interests and passions, although experiences, including illness and health, are undoubtedly an influence.

But as far as the blogging world is concerned (one I have been neglecting for quite different reasons), the valuable contribution you make was never qualified by a medical certificate. You're one of "us" for as long as you want to be, in any way you like.

Happy New Year Seahorse!

seahorse said...

Thank you David, so nice to see you are still out there!

Goldfish, as I sit here with screaming back ache ('I will be heard') I kind of smile. I am very much still qualified to blog as I have been. Just a bit confused.

Happy New Year both, and to my automaton troll that writes in Chinese, who will surely pop by soon ;-)

Maggie said...

Happy New Year! As you may guess from the time, I'm in an insomniac phase! ;-)

Lots of fireworks at midnight, and a few of those flying lanterns went past too.


Cusp said...

Well I'm just pleased to see you here --- don't care whether you're in an up or a down phase [in the nicest possible way ;O)]...and congratulations on your success in the OU exam too.

I think the peaks and troughs of a chronic condition are difficult to negotiate emotionally and expectationaly (if you see what I mean) but I'm sure your good sense -- of which you have plenty --- will help you to negotiate the bends and detours. Enjoy the good stuff and I hope it lasts. If other people don't like it then that's their problem.

I hope that 2010 will see you continuing to improve and making the best of any situtaion in which you find yourself. You're good at that anyway.

Good to see you back


seahorse said...

Maggie: yes! weren't those lanterns lovely. Must get one next year. Happy New Year from a fellow insomniac

cusp: I think that having good sense these days is what my old friends find hard to square. I was so off the wall at school! Have made a resolution to return to blogging. Already finding it far more spiritually rewarding than Facebook xx

seahorse said...

Goldfish: been pondering your words a bit more deeply and yes, it's about recognising that trying to fit into other people's expectations of what the two spheres of 'ill' and 'well' involve causes much of the frustration.

My biggest lesson learned from the last five years is that what other people think, or expect, matters not a jot! And yes, staying live to your interests and your inner life is the way through xx

Wheelchair Dancer said...

COngratulations on your degree and your improvement!!

Enjoy your improvement. Other people don't know the ebbs and flows as we know them.


seahorse said...

WCD: if only it were a whole degree. No, just one course towards, but still v pleased!

Other people really don't understand do they? It's so much more complicated than 'oh look I can do more, I'm delighted'...