The last twelve months have, without doubt, been the hardest twelve months of my life. I’ve had to face the reality of being me and it’s not been easy. In fact, it’s been nauseatingly painful and exquisitely raw as I’ve realised just how desperately fragile I am. I’ve always been strong emotionally and spiritually, but even these have taken a battering this year as I’ve crumbled, shattered into pieces and turned to dust in a heap on the floor. However, like the soggy biscuit in the bottom of the tea cup, I’m not gone completely, just changed beyond recognition.
Well, I guess the title of this piece is fairly self explanatory but it’s an important one for me to write as the process of getting over myself has been a major challenge over the last year. We all have a sense of pride and a sense of wanting to present ourselves in the best way possible; as a result, when things go awry, we can struggle…
For me, this is best summed up with the three-way conversations I have in my CRPS (Complex Regional Pain Syndrome) specialist physiotherapy sessions. The conversations are between my physiotherapist, me and, well, me, as it’s the unspoken dialogue in my head that’s the third party.
It’s important for me to point out that CRPS is a weird condition as it affects the brain and how the brain perceives the affected limbs; it creates ‘Body Perception Disorder’ as well as heightened pain responses and autonomic changes such as changing colours and temperatures. Chronic pain of any kind can be isolating but CRPS takes this to a new level as there really are very few people who are open-minded about the concept of ‘missing limbs’ and are not phased about seeing my foot change from bright red to purple to blue in a matter of moments. It can look bright red but feel ice cold and other weird scenarios. So, as you may imagine, the physiotherapy sessions are not quite normal either. That’s not to say that my physiotherapist isn’t normal, just the stuff he does!
He keeps reminding me that all this weirdness isn’t in my head although of course it is in my head as my brain has gone haywire. I frequently feel like such an idiot with CRPS although I am managing better in my physiotherapy sessions these days as I’m learning the art of getting over myself. Generally, I am usually a passive, respectable, polite individual, but clearly from the colourful language that follows I’m either a repressed gobby cow or I’m simply too lady-like to swear or blaspheme in company. So, apologies for what comes next!
The conversation goes something like this:
Physio: ‘Ok, look at your left foot. Can you see it? How many toes can you count?’
In my head: ‘What kind of questions are they? Is he taking the piss? Ok, looking at my left foot. What the f-? I can’t see it? Oh my God, I can’t see my foot? I can’t admit out loud that I can’t see my foot. Oh shit’.
Flaccid smile in Physio’s direction and back to looking at foot.
Physio: ‘It’s ok. Just tell me what you can see. There’s nothing with this condition I haven’t heard before’.
In my head: ‘Is this a trick question? Is he having a laugh? I can’t see my left foot. Have I gone mad? Oh shit, I’m welling up, I can’t cry, I can’t burst into tears even though I’m devastated. Fight it. Fight it. Don’t cry. Don’t let that out. Smile. Oh my God, I can’t see my foot. What is wrong with me? I’m broken. What do I say? If I tell the truth I’m admitting I’m nuts but what’s the point in lying? I can’t say out loud that I can’t see my foot, what does that make me? Don’t cry. Fight it.’
Physio: ‘Well, what can you see?’
Me: ‘I can’t see it. It’s all blurry. I’ve got four toes. Well, that’s not true, I know I’ve got five, but I can only count four’.
Next session:
Physio: ‘Draw me a clock face’.
In my head: ‘That’s an odd thing to ask me to do. I’ve known how to draw a clock face since I was tiny. Ok, pen in hand, draw a clock. Close my eyes, it’s blank. There’s nothing there. I know a clock goes from 1-12 but I can’t see a clear clock face. How can I not see it?’
I stare at a blank page.
Physio: ‘Take your time, there’s no rush. Just draw what you see when you close your eyes. Not a digital clock by the way!’
Me: ‘I’m sure you have other patients today; this might take a while.’
In my head: ‘Stop making wise remarks. Concentrate, focus, oh not again. I can’t see the clock face. The numbers move about, try. Try. You can do it. I can’t. Oh fuck, what’s wrong with me. Put down what you see. I see a number ten but it keeps moving, put it there, that’s not right, but that’s what I’m seeing. I feel sick. I’m going to throw up. Deep breath. Don’t cry’.
I put about four numbers on the clock and stop. I later discover none are in the correct place.
Me: ‘I’m sorry, can I stop now?’ my fragile smile fading as I fiercely fight bursting into tears.
In my head: ‘Don’t cry, don’t do that.’
I’m clearly not doing a good job at hiding my despair.
Physio: ‘Are you ok?’
In my head: ‘NO IM NOT OKAY. I CAN’T DRAW A FUCKING CLOCK FACE. I’M DEVASTATED. BEYOND DEVASTATED IN FACT. I FUCKING HATE THIS WEIRD CONDITION. I FUCKING HATE BEING A FREAK. ARGHHHHHHHHHHHH’.
Me: ‘I’m okay’ smiling weakly.
It’s hard work being me, it must be even harder for the Physio though.
Next session in hydrotherapy:
Physio: ‘Look at your foot in the water, can you see it?’
By my bewildered crest fallen look he guesses I can’t.
Physio: ‘OK, so if I stand to your left can you see me clearly?’ I shake my head as saying it out loud is too hard. ‘What if I stand to your right?’
In my head: ‘Oh my God. How does that work? I can see him on my right but not on my left. That’s just wrong. It’s weird’.
I smile and give him a bewildered look.
Physio: ‘Remember there’s nothing you can tell me I haven’t heard before’.
Later:
Physio: ‘Do you always wear glasses in the pool?’
Me: ‘Well, I can’t hear you unless I’m wearing my glasses’.
His turn for a bewildered look.
Physio: ‘OK, that is something I haven’t heard before’.
Life certainly keeps getting more interesting…