Tuesday, June 14, 2005

Inside I'm Dancing

Disclaimer: I can’t begin to tell you what an offensive title “Inside I’m Dancing” is for a film about the lives of some young men with CP, but it’s okay for a blog entry because it is about a genuine paradox as opposed to a non-disabled person’s perspective projected onto a person who has a different kind of body to their own.

Another confessional today. This involves one of my biggest secrets so don’t tell anybody. In particular it is a secret from my beloved, but he never reads this blog and I think I can trust you lot...

Fatigue does not necessarily mean a lack of motivation, enthusiasm or a certain sort of… spiritual energy. It just makes it difficult to actually follow your thoughts through – or even remember the thought you were thinking to follow through. And painful movement does not completely eliminate the desire to move about. And in the same way that both have to be at pretty catastrophic levels before they remove all sexual desire, I still have the desire to dance despite the pain. A lot. All the fucking time.

Why? I really don’t know. I used to be a closet dancer before I was ill. I was an early developer and rather tall such that there wasn’t much grace about my large and lumpy body so I never attended discos or danced at parties. But I used to go upstairs to do my homework of a Sunday afternoon, close the door, turn my music up loud and dance. I think it has something to do with the fact that aural and physical pleasure have never been entirely separate in my experience

It’s not as if I’m keen on dance music. About the danciest thing I listen to is the Prodigy, Erasure or Garbage. Oh and I am deeply in love with Beyoncé Knowles; I find R&B quite vacuous as a rule but she is so beautiful, her voice strokes the back of my neck and she is the sexiest woman on Earth so I can’t really help myself. But anyway, I feel the desire to dance to all sorts of odd music. Like the Clash. You really don’t want to know how exactly I dance to The Clash or whether indeed that counts as dancing, but you take my point; it’s not as if I’ve got a shelf of The Chemical Brothers. I do have a Fat Boy Slim album but it was a very good album (We’ve come a long way, baby) so I’m allowed, all right?

The unfortunate fact is that I can’t dance at all without significant levels of really very severe discomfort. And strictly speaking, it is a total waste of energy which pushes my pain beyond the boundaries that my meds can cope with even if I do it sitting down, which is the case most of the time. And when I do get up on my feet; well, honestly that is ridiculous. I mean how can I possibly justify doing something which causes me nauseating levels of pain, puts me in danger due to my chronic drug-induced dizziness etc, just because the mood takes me? Of course it does make me feel good briefly, but oh so fucking briefly.

I think it is adrenaline. I have loads of adrenaline. I have more fucking adrenaline than I know what to do with, which is probably why I write and indeed why I write the things I write (not here perhaps but in my novel for sure).

You can tell I’m in pain because I am swearing a lot – I must apologise. It is also taking me a long time to write this because it hurts so fucking much I am making typos all over the place. It feels like someone spilt acid on my legs. Well naturally I exaggerate; I don’t think I would be still typing if that had happened. It is like someone lifted up my skin and poured lemon juice on my exposed muscles. Hmm. Yeah, that’s probably quite an accurate description. Yup, that’s the one.

But the point is that perversely I am listening to my music just now and struggling to keep still. I can’t not listen to music because this helps. I mean, genuinely, it stimulates endorphin release, lowers my levels of cortisone and all that stuff; it lifts my mood and almost certainly takes my pain threshold up with it.

The only thing that helps with the compulsion to dance is alcohol. Being a depressant, alcohol makes me lazy. I can drink and listen to the bounciest of music and resist the desire to move. And alcohol relaxes my muscles and thus helps the pain quite a bit too. Unfortunately it also adversely effects my immune system, renders my sleep less refreshing and all kinds of other nonsense.

I think I was leading to a point, but I’m coming to the end of my productive (ha!) brain time today. I think I better sign off. Sorry if this is miserable. Is this miserable? It’s about dancing for Pete’s sake!

Oh and Becca, thanks but please don’t worry about me having a “wet and snoozy death” (I guess there are worst ways to go!). I think you’d have to be very heavily sedated with something or else very very ill before you actually drowned in the bath. The minute enough water gets into you, reflexes take over, you start coughing and rising to the surface. It’s not good, but it isn’t deadly. At my folks’ place I took showers (or at least sat under the shower) imagining this would solve the problem. But made no difference - except the water didn’t get cold while I slept. Mind you, I’m probably personallyresponsible for any droughts in East Anglia this year…


Katie said...

Hi sweetie, It must be painful when your muscles ache through dancing, I am like you because that happens to me too especially when I'm dancing. You like a varied lot of books and music, I'm not sure about the Female Eunich though as I have read it.

Anonymous said...

I can sooooo relate. I sometimes think that there is some sort of rule that anything that gives us pleasure is the first to go and the last to find any justification for.
I had thought that I would Never dance again, I had taken it for a given. Then on May 5th my cousin took my hand at his wedding and asked me to dance. At first I refused but damn,it was His wedding how could I say no? As it turns out I managed to dance and not fall flat on my face or break anything. People were smiling, but not to laugh at me, it was because I looked so happy. Don't give up dancing, it's worth the pain, even if most folks can't ever understand that.

Anonymous said...

Ahh The Prodigy are great to dance to but I can't just listen to them...

Crappity crap about the muscles, I can empathise I feel that very same way (your description made a lightbulb go on in my head)...hence still p and awake (well definitely up, not sure about my mental capacity).

hope that it eases for you so you can get some shut eye soon!

Take care


Agent Fang said...

Since using a wheelchair I've been barging my way onto dance floors in it and cultivating a from-the-waist-up wiggle. Whilst the fatigue and the alcohol extract a painful price, it passes, unlike the memory of the moment. Therapy? Shake that thing!

Anonymous said...

I've been in a chair nearly 21 years due to an SCI, they taught me how to do wheelies to go up and down curbs in a wheelchair in rehab. After that I ran with it. I taught myself how to keep beat to the music balanced on two wheels. I can keep perfect beat with the person I'm dancing with while in a wheelie. Having a light wieght high performance wheelchair helps, I could not do it in a basic chair. It has also added greatly to my upper body strength.

Anyways I've been going to nightclubs for over 18 years and over 700 times. It is great fun and people are generally in awe that I can make the chair dance. Complements include that I dance better than many able bodied people. It has allowed me to meet more people than I could even begin to count I also made hooks for the bottom of my shoes because I can spin so fast my legs will shoot straight out if not clipped to the footrest.

I wish it was something I could teach someone. I'm thinking of going to my old rehap center to show new patients it can be done, of course that depends greatly on the nature of the disablity and a persons comfort level with the possiblity of flipping over. Has only happened twice when out dancing.

Just thought I'd pass it along