Friday, 15 November 2013

Disability Has Given Me More Empathy

As I sit here the pain is ripping through my body. It is relentless, like waves hitting rocks on a stormy day and I’m writing this off the cuff as it were, purely as a distraction.
I want it to stop. I feel like something evil is gnawing on my muscles and positively relishing it!
Painkillers will take the edge off…for about half an hour.

I guess I should’ve known yesterday that today would be worse. I was aching you see, aching badly, but I still wanted to go for a walk because the sun was out. My husband lovingly calls me ‘the hermit’ and I wanted to prove him wrong.

Every physio I have ever had told me I need exercise, especially since my pulmonary embolism in two thousand and five. I have to stay as active and fit as I can, but it is so hard to stay motivated and keep doing it when you know that it will hurt later, if it doesn’t already.

It drains my energy so quickly. Sometimes I feel like a car running on empty. I have to carry on but there is no fuel left, I have nothing left to give.

As a side note, I often get this feeling about my friendships. Part of my personality is that I am there for everybody, whenever they need me. My husband calls it my ‘saintliness’ but it is just the way I am.

On days like today though, I admit to seeing their trivial little worries as exactly that, and hate myself for it. He often reminds me that very few of them have been there for me. “Isn’t that just the way it is though?” I’ll say and he will roll his eyes. He’s wonderful! He reminds me that I have enough to deal with!

The thing is, my disability has probably made me more empathetic and more in tune with people, so yeah, thanks for that! I’m not saying I am an angel. I can be horribly moody and sometimes very depressed. That is just life. Everybody gets depressed and everybody has tough times, but it is how you get through it that matters.

The pain is no better and despite having enjoyed talking to you, (please forgive my disjointed ramblings) I still want to throw something out of sheer frustration! Yes I admit it, there is a bit of self pity mixed in today too, because I did not ask for this, and there is no ‘end’ for me like there is for others with problems. There is no solution.

But, I will not give up, EVER, even though right now part of me wants to. I have an amazing husband and a very strong marriage. I have my family and I have my writing (for what it is worth)!

When I finish typing I will go and curl up in my husband’s arms and I might even finally cry, but I know that all this HAS made me stronger. I hope it continues to do so.

What I’m trying to say, is that, even when it doesn’t feel like it, even when it seems like there is just too much pain, you can always find a little strength from somewhere.

Please don’t give up.

Tuesday, 12 November 2013

Talking the Talk (written May 2000)

One thing I have learned is that it is OK to ask for help. There is no shame in it and I know that now. Granted, I've learnt it the hard way. Falling on my face in front of a bunch of school kids as I was going in to give a speech on life with a disability was a somewhat unexpected way of showing how difficult everyday things can be.

It happened because I was trying to carry a bag, some books, and walk with crutches at the same time. I was too proud, and too afraid of looking stupid to ask anyone for help. What happened? I ended up looking stupid anyway.

There were mortified gasps from everyone in the crowd and several people rushed forward to help me reclaim my dignity. One of those happened to be a tall, blue-eyed sports teacher with the finest pair of legs I have ever seen!

I probably could have gotten myself up off the floor with relatively little fuss, but come on ladies, what would you do? Somewhat flushed, I let him pick me up off the floor, and flashed a smile. "And that, people, is life with a disability!" I said shakily. Momentarily I stared at the floor, and then over in the direction of the male teacher sitting in the corner, 'There are, however, some pluses!' I thought to myself.

Truth told, I was cringingly embarrassed, and, as I discovered later, I badly bruised my already fragile hip in the fall. But right then all I could think about was making the speech in the best way I knew how, and getting out of there alive. I did it. I was honest, open, and I just tried to be myself.

The details of the speech are not important. What is more important to me is what I took from that day. I had never talked about my disability like that before. I have written about it many times, but that is different. I have control then. When I was up in front of all those people it was another thing altogether, and I was terrified, but despite my unfortunate encounter with the floor I was ok.

The whole experience gave me more confidence and I think that has stayed with me. I can't really explain how but giving that speech, and laying my emotions bare like that, helped me come to terms with my life the way it is. Well, as much as I ever will.

I made another speech, a year later. It was the same school, another group of teenagers.

This time there were no falls, and my nerves were under control. It is true that the more you push yourself to do things, the easier they get.

Walking out into the bright sunlight, I smiled.

Then, a moment before I left, a smartly dressed lady came up and tapped me gently on the shoulder. I recognized her as one of the teachers who had sat in on my 'talk'.

"Thank you for coming" She said quietly, "You know, you should charge for doing things like this. Make it work for you!"

Who knows, maybe I will.

Saturday, 9 November 2013

It's Like Being in Another World... (Written 1997 - Age 16)

For  years now, I have been a 'Torvill and Dean' fanatic. When I've had a really grotty day for one reason or another and I want to escape from it all, school, pain, anything, I can switch on and switch off (if you see what I mean!)
With that and the help of a couple of very large bars of chocolate, I feel like I can handle anything!

From the first time I saw 'them' skate, I've been absolutely desperate to try. I can close my eyes and see myself drifting across a vast ice rink. It always seems so real.

Before I went into hospital in early, actually, mid 1995, my family took me to Nottingham ice rink, where Jayne and Chris met. I was happy being there but, as I looked at the rink, I got knots in my stomach, 'why can't I..?' What got me most is that I wasn't even allowed to try!

I'd ask my Physio time and time again, 'Can I go...please?' I never really got a proper answer. I got the same vagueness from her as I did from everyone else I asked. It was always, "Oh well, you know it's not good for you...." So again, I was left to dream. I only wanted to try! I didn't expect miracles....okay, so maybe I did, but it wasn't going to happen. How could it if no one gave me the chance to try?

Everyone was worried that I wouldn't be able to pick myself up and say "Oh well...never mind." Maybe I would be upset and frustrated, but I needed to know.

When the chance to go with school came in the March of 1996, I once again asked my Physio, and she, knowing how much I wanted to do it, needed to do it, to my surprise, gave in! I was ecstatic! A lot higher than cloud nine!

A month later, the trip was cancelled! Not enough people wanted to go! I was gutted! All that waiting and all that hoping, I wasn't angry, I was numb.

Then just after Christmas 1996, my Dad told me we could go when he started his new job. I waited.

I climbed in the car wearing my 'Torvill and Dean' T- shirt. I was as high as a kite!

We got to the rink in Swindon about ten. Jill (my Stepmum) and her children Kate and Nick, with my sister Alison, joined the queue for 'skate hire' leaving me apprehensively squeezing my dad's hand.
"Nervous?" he said,

"Yes" I replied, close to tears.

This was my chance! After so much waiting, I was finally going to do it, and, what's more, there was nothing anybody could do to stop me! I was finally going to break my barriers and answer a question that had been nagging at me for a very long time, 'Can I or can't I?'

When they came back with the skates, my dad spent ten minutes trying to get the skates on over the splints that keep my knees back. "We can't do it" he said. I began to cry, "I'm going on that ice!" I replied through tears.

So, Dad took my splints off and after five very long minutes, we got the skates on!

I couldn't get used to the strange feeling around my ankles and I knew going on the ice without my splints would be a big disadvantage. I can't walk without them, let alone skate!
Dad hauled me up, and I fell straight back down again. Balancing on the blade is hard enough when you've got balance, never mind when you haven't.

Then two ice stewards came over, "okay..." They said, "we're going to give you a hand". One of them was drop dead gorgeous, so I didn't mind! I was shaking!

I took a step on to the ice and my knees gave way beneath me. It was impossible to keep my weight forward because I didn't have my splints on. I tried again, but my efforts were in vain.
Feeling disappointed, I gave up. There was no point in prolonging the agony. I had a rest, planning to go back on later.

I sat and drank an orange slush puppy, feeling a bit disillusioned, and very sad.

Suddenly, the ice stewards came back with a wheelchair! "Come on" they said, "we'll take you on in this!". I wasn't sure to start with. It would be too much like giving in, but at least I could enjoy it without having to worry about my balance!

It was incredible out there! It is, to me, like being in another world! They were playing 'Where do you go?' by 'No Mercy'. I cried.

I had this really light feeling in my stomach, because I had finally done what I set out to do.

The dream that I'd had for six years had finally been realised, and doing it has given me a new kind of confidence. Now that I have at least tried, I can set my sights on actually standing up next time!

Jayne and Chris (Image: Google)

A Love Story (Very Short - Written for a 'Flash Fiction' Competition)

Melanie's blonde hair blew in the gentle evening breeze. She regretted wearing it down now, because it was obscuring her view of him. She wanted to make the most of every second, because after tonight her life would be different. It would be empty. Her heart constricted at the thought of not being with him again.

Reluctantly, she forced her eyes away and looked out across the calm lake. The last of the sunlight twinkled on the water. Melanie wished she felt as peaceful inside as the lake seemed to be.

Instead her hands were sweating as they clenched at her sides. She could feel her short, practical nails digging into her hands, but the pain didn't matter. 'This is it. He is going to dump me.'

The thought stung as tears welled up in her beautiful blue eyes. She bit her lip, 'Oh, I wish he would just say something and get it over with. This is torture!'

He had been distant for days and had begun staring at her when he thought she wasn't looking. In the car on the way here, they had barely spoken. She heard herself sigh and their eyes met,

"What are we doing here, Paul?" she asked him softly. He looked pained for a second, and then stared at the ground.

"I've brought you here to tell you something," came the quiet reply. Suddenly everything seemed still. She froze momentarily as he took her hand. Melanie realised she had been holding her breath and exhaled. The silence between them seemed to intensify. He looked up.

"I love you, Mel". She caught herself in surprise.

"I'm sorry, what did you say?"

He grinned at her shyly.

"You heard. I'm nervous! Please, don't make me say it again!"

At that moment Melanie felt weightless. Everything, and yet nothing else in the world mattered. She stepped into his arms knowing that this was right where she was meant to be, and as she stared into deep brown eyes she giggled. She had been so insecure! It was silly, and she really wasn't proud of herself for thinking the worst of him. But, as of now, all that would change, and somehow she knew that this moment would be the one that changed her life.

"What's so funny?" he asked, smoothing a hand through her hair.

"I'm sorry" she said, "I just thought . . . .you were going to end it!"

"Oh, Mel. No! I've spent the last week trying to work up the courage to tell you how I feel". He grinned, and kissed the top of her nose, "You know what I'm like with words...and you make me tongue tied at the best of times!"

Raising an eyebrow, she smiled for what seemed like the first time in ages, "Tongue tied?"

"Completely and utterly...!" Now it was her hands that tangled in his short brown hair.

"I'll make you tongue tied...I love you." she whispered.

As the sun finally set over the water, their silhouettes joined in a kiss.

Image: Google!

Sharing Time - (Based on a Diary Entry -2009)

Mia's tiny hand curls around my finger unquestioningly. It is perfect and warm.
Settling back against a cushion, I look down into her sleeping face. A moment of peace washes over me. I realise that this is where I'm meant to be, and know that I couldn't be happier if I were part of sunlight itself.

The only sound is gentle breathing as she slumbers, and for a moment everything seems still.

"Well, I guess I'd better take her home..." The voice of my best friend shatters my illusion so forcefully that I actually feel it crumble around me.

For a while the baby was mine and I glimpsed into a world that I know I will never be part of. The bond between mother and child is one that I will never share.

"Yes you'd better..." I say, shaking myself from my reverie. Handing the bundle over, the tiny hand is torn reluctantly from mine, and the last link is severed.

"I'll bring her over again soon" my best friend says quietly, as she takes the little girl fully into her loving arm. With the other, she reaches across to hug me.

I struggle with every fibre of my being not to resent her. I know it is not her fault that I can't ever have a baby.

I feel glad that she is happy and since Mia's birth, there is a new contentment about her, and a light in her eyes. Despite the lack of sleep, she looks serene, and finally complete.

With one finger, I stroke the baby's cheek, and whisper "goodbye..."

When the door closes, I feel empty and cold. Leaning back against the solid frame, the unshed tears roll down my face.