Dancing away despair and putting pain in its place...

With the past few months of flare-ups in my pain and the intense allodynia (pain from harmless things touching my skin, such as clothing or bedsheets), I haven't been my usual cheery self. However, I wouldn't say I'm depressed, nor even all that negative at the moment. It's interesting to note that I'm going through what I went through 3 years ago, but back then I was deeply depressed and suicidal. I felt I couldn't do it anymore - I couldn't live with this pain.  

Of course, over the past few weeks, there have been some tears, some cranky moments and some times I wanted to give up completely. I've had times where I've become so overwhelmed again by the weight of my pain-companion, that I'd bawled like a baby. I do feel hopeless on occasions, though these days I know that is only temporary. Sometimes I lose my control purely from the frustration I feel. 

I get in these moods where I stubbornly and rudely refuse any help, then end up bursting into tears from my own pig-headedness. I get into a mindset where I MUST do whatever it is, no matter how ridiculous or unnecessary. For those close to me, they would have seen this behaviour many times. Where they watch my pathetic attempts to do the simplest of tasks; "no I can do it ON MY OWN thanks!" while struggling to open something, or carry a bag. I can be downright rude, which isn't something I'm proud of.

It is usually something that they could very easily and very willingly do to help me. When they do help me out, I sometimes show some real ingratitude, which isn't good. Of all the times they cannot help me nor take away my pain; opening a bottle or chopping food is certainly do-able. I forget that my pain is something they live with too. I'm not the easiest person to live with! And if I graciously accepted their offered help, I would save my energy for the other tasks; the more fun and interesting things I do. Surely that makes more sense than working myself into a state!


I see myself doing it; I know how ridiculous I look, digging my heels even deeper into absurdity. But why? Wouldn't it just make sense to allow my nearest and dearest the opportunity to help me in a very real and tangible way? Especially when they feel so powerless at other times. They cannot take the pain away, they cannot make it all better, but they can easily help me carry something and often they like having the chance to help me out when they can.

It's interesting, I haven't really thought about it much before. I've only known that there is simply no other choice for me. In my head, this ridiculous struggle is between me and my pain; it's all I have left between staying strong or giving up. I am very black and white, it is or it isn't. If I'm strong, then I will just find a way to do it, dammit! If I accept help in such a simple task, then I'm giving into the pain and admitting I'm weak. 

Yes, I know it makes no sense! Hey, I would never think any less in someone else asking for help; help I would gladly offer and do as much as possible for them. But, this is just how I am against myself. I feel that for me to ask for help, all the strength I have built in accepting and living with this condition would crumble to dust. A gust of wind to my house of cards. All over red rover!

I am my own biggest bully. There are some things that I simply cannot do anymore, there is little choice in those matters. But for the things that are possible, I don't make excuses for myself. I am either going all-in or folding. Particularly when my symptoms are quite severe, sometimes the only thing that holds me together in that moment is this one small, insignificant task. It becomes the only thing that matters. If I fail to button my own jacket, then I fail at everything.

It gives me a focus point, something to focus all my being on. Focus is very important to me. I am very goal orientated. I like having a goal and achieving it, it makes me feel powerful. It makes me believe in what I am doing. Sometimes there are no second chances - do it now! 

With the belly dancing years ago, we thought it may be something good for my arms. I was in the Chronic Pain Group with Coralie (Chronic Pain Australia) at the time. She suggested tai chi as a 'flowing' mindful therapy to help me reduce the guarding of my arms and get some natural motion back. At the age of 21 or 22, the only picture I had of tai chi was the groups of old people in the park - not my scene at all! My mother suggested belly dancing and we invited our wonderful neighbours to come along too. It sounded like a fun way to get my body moving. A good way to re-establish movement in my arms. 

St Albans Folk Festival

Good it certainly was. It was one of the best things I've done, both physically and emotionally. I do believe that dancing is one of the best things that anyone can do, pain or no pain. I also believe that I would be significantly more disabled now had I not done those years of dancing. There is no better way to laugh at yourself and see the lighter side of life! Mindful movement can benefit everyone.

When I got those opportunities to dance, sometimes even paid jobs; it was almost too good to be true. I hadn't been dancing for long, but I devoured it in the same way as I do many other interests. I become obsessed, a dancer possesed; learning all I could. Watching carefully, practising in front of a mirror for hours upon hours; determined to make my arms move as naturally and normally as possible. I would stare long and hard at other peoples' hands and arms, (a fetish I still have to this day!) watching how they moved them. The dance movements themselves were already something I felt an affinity for - moving my hips certainly took attention away from my arms. I would do anything for that! 

As time went on, I became very skilled with "blending" my arms in. It was my goal after all. If I cannot get rid of the pain, I needed to somehow take it out of my identity. I wanted to be me, not "the girl with the dodgy arm". The rhythms and movements came somewhat naturally to me, certainly more than pop music dancing ever did. I found a great deal of freedom in this dance form. I liked the complexity of the rhythm, the interwoven melodies and changing tempo. I would study this music intently. I realised that if I learned the rhythms intimately, it was a skill I could apply to all the songs I heard. It became intuitive. It also helped me learn how to improvise, never one for choreography; improvisation had a freshness and energy which I thrived on. I loved the challenge, the feedback from the crowd was excellent! I loved getting people dancing too; though I'm not a teaching type. it was always wonderful to see when someone would get the moves, the look on their faces was fantastic! Dancing is infectious!

I went all in, and I was so lucky to get the opportunities I did. Deep down, I knew I had to do all that I possibly could at the time. I may only have one chance at this - go for the stars. Deep down, I also had the fear that I may get worse in the future, and I wanted to have some great memories of what I had done. I wanted to have no regrets, no "what ifs". I certainly didn't want to see things I could have done but didn't, because of the pain. If I had to live with this pain for the rest of my life, then I was going to do everything I can in this life to make the pain somehow worth it. The pain was NOT going to win!

I started to dance with a sword balanced on my head, or a cane which I swung with my left arm. These were flashy props to dance with that looked great. Most of all though, I realised that if I was dancing my heart out with a sword on my head, no one noticed my floppy right arm. No one in the audience was looking and thinking "oh look, nice sword but she can't move her arm properly!". I loved it! It really gave me so much, this dance form!

  I also used zills, or sajat, which are finger cymbals. Though I had no hope of really performing well with them, they were a useful tool to train myself with. They helped me connect my brain with what my hands were doing, by giving me a non-visual clue as to what my arms were doing. I put my hands behind my back and would try to make my usual rhythms. Without watching my hand, I could hear what it was doing. I pushed myself to get it right. I was not going to accept anything less.  

My brain's connection with my right arm was and still is, very limited. If I can't see my arm, I have no idea where it was in relation to the rest of my body. While dancing, if I was consciously moving my arm either in my direct or peripheral vision, I could move it somewhat normally (though not with the grace of my left arm). When it went out of my field of vision, I had no idea where it was or what it was doing. My "floppy arm"! The greatest success for me wasn't the dancing itself, it was learning how to disguise my pain. And that made me feel wonderful! I was a belly dancer, not someone with a disability. For that short time, I wasn't someone in pain. 

When you do something that you love, the pain becomes less important. Sure it's still there, but it's not all of your being. Any flare-ups of my pain or symptoms were simply the price of doing what I loved. I was prepared to endure the flare, the increases in pain, in order to do something that gave me joy. I paid a high price for it, but nothing in life is free. It's a matter of bargaining with the pain. "Dear Pain, allow me to do this right now, and I'll pay attention to you later".

The show goes on, the cost of it was a price I was willing to pay. When I have pain when I do nothing, and pain when I do something; I'd much rather to have a good story to tell for the increase of pain, than to experience flares when I take all the care in the world not to. When there is no purpose, no reason for the pain; it is depressing. I learned long ago that flare ups happen for me even when I do nothing. It is something that I don't have any control of, you can't take preventative measures when it's so unpredictable. 

When you have no control over the pain, then take control of what you can. Make your own joy and pleasures, and put the pain in its place!