This short story still in its rough form is dedicated to Nicki and Cathy and all those that have to chose to suffer in silence.
Freedom
To Work
Yes
Please!
I’ve been living in this flat now
for almost six months, and each and every day I get a quick hello from my
neighbour, who then decides to come round for coffee, unannounced, with her cat!
Now for some with the simple
freedom of choice and with a “normal ability to live”, they would think this
innocuous and what appears to be friendly, neighbourly thing to do, a
charitable and much needed contact with the outside world, especially for
someone who is chronically ill like me. So do I, well in a way. You see the
problem I have is that I don’t have the freedom to walk away. I’m pinned down by
a body that can’t. I have to say and be lectured everyday about how working
could improve my spirits – I don’t need to be told this, I know this. My mind
craves difference and when I give it a go, something pulls the plug on my neurons
and I am left with intermittent thinking, of the fuzzy kind, no crystal clear
thoughts for me.
She explains how the money would
give me the ability to live so that I no longer live in squalor! Yes she
actually used the word squalor! As if I am some complete moron who never gave
that a thought! What makes it so awful and wretched is that she is right, it is
a squalid flat! What can you say to that, how can you defend yourself? You see,
each night someone, while I am asleep pumps my body with lead, seriously I’m
not kidding! Some days just looking after my own hygiene is all my body can
take. Innately I am a very organised and tidy person, squalor makes me
depressed.
Anyhow I bet even a saint would
lose their patients under this much scrutiny, and believe me I’m no saint, nor
would I want to be. I’m more of – live life to the full type of gal, why walk
when you can dance, why dance when you can rock?
I’m rocking now, although I’m not
entirely sure if I’m rocking to get out of the chair Sam sees me as she walks
to work or in pain. I just don’t want to face that encouraging smile this morning;
I’m not in the mood! My halo has gone missing! But I’m too late; her face is at
the window of my bedroom.
‘Morning Katie, How are you this
morning?’
‘I’m fine, and you?’
‘Oh I’m loving the spring,
perhaps we can go for a walk when I get home - blow a few cobwebs away, make
you feel better?’ I slap a smile on my face and she is gone. I know what I
would like to blow away.
‘I don’t want to think how I am
Sam!’ I grumble and groan as my body adjust to the upright position. I close my
eyes as the dizziness kicks in. It makes it real, and I don’t want my reality
to be all there is thank you very much – I want to live in a dream world of
fluffy clouds for as long as I can. I look across at the time on my phone, ‘I
bet a get a shimmy on, my mum will be around in two hours and I haven’t even
brushed my teeth yet!’
As I had feared Sam came round
that evening, she promised she was on a flying visit. I know though she is
trying to get me out of the house as promised this morning. I told her I was
waiting for company so now she is waiting to see who that could be. She sips at
the coffee that I have just made her. Which means: I won’t be able to finish
the prep for my evening meal – I simply won’t have enough energy to do it now!
Sounds stupid doesn’t it? You
can’t explain it to anyone who has no difficulty in moving, their blood flow, breathing,
with their energy all being normal. Looking at me I don’t look disabled. I
ponder on that thought as the devil cat winds her tail lazily and lovingly
around my leg. I tense up, not because I hate cats but because I know what is
coming, but I don’t know when. The pounce of the Duchess the devil cat is
always unpredictable and unprovoked.
‘I saw you out at lunch time with
your mum. That must have been a nice change for you? Made you feel better?’
Duchess devil cat jumped upon my legs and purred comforting soft velvet purrs
the kind that makes you sleepy. Her warm soft fur comforted my knee joints and
a connection was made between animal and human.
‘Yep’ I false smile into my hot
chocolate, no point telling the truth. I remember my mum’s face when she took
the full force of abuse hurled at her this morning. You see I have a disability
badge; it took two years to get it! Even though I am house bound, I still have
to go to see the GP, and there is no parking nearby, and the journey alone will
make me so sick it will render me bed bound for the next week or more, apparently
I still did not constitute a badge! I refuse to use the wheelchair, so it makes
it worse. You see the whole process of getting the badge and Department Work
and Pensions forms and interviews; they insisted I attended, not only put my
health in jeopardy but made me feel worthless.
The process of losing all your
function after you do any daily living, is innocuously called Post Exertional
Malaise; PEM for short. It is more a kin to having a heart attack or stroke though;
as my body closes down to conserve the precious oxygen my body craves. Because
my brain is constantly starved of oxygen when I over do things. My body just
cannot utilise oxygen or energy, every system in my body is compromised. It is
a hard concept to get your mind around. My mum has been a rock for me and she
has got her head around it, but we are all allowed to lose it from time to
time, my mum lost it big time today.
‘Where did you go?’ Sam asked. I
didn’t want to say disability aids, so I lied.
‘We fancied getting so good
underwear but we were naughty and brought the most glamorous frilly knickers’.
I wish my life could cope with frilly knickers I privately thought. ‘We are fed
up with the Polk Dot bloomers we normally get’. She had to gulp down the coffee;
she had been daintily and slowly sipping! I lowered my eyes as I smugly smiled
into my hot chocolate.
My mum’s beleaguered face haunts
me, her frustration hurts me. I had just finished my degree you see when I was
struck down with a virus that left me this way; I was diagnosed with Chronic
Fatigue Syndrome, the most hated condition of modern time, with I have to say
the most stupid and misleading name. Fatigue, everyone has fatigue and I wish
it was just a case of fatigue.
My mum was so so proud of me at
my graduation; all those struggles to get me through Uni were worth it she told
me. My job was to die for, and I would have if my body had let me. We value ability
is highly prised; I have no ability, so I am worthless? Today for the first
time I felt worthless to my mum. All her dreams had been shattered, they had
splintered like a mirror, we only caught glimpses of our former happy self’s.
Mum had to give up work to look after me; she lost most of her friends and a life
she loved.
Sam drew out of her bag my latest
prescription, it was a trial medication and I could see she was itching to ask
questions. Sam worked at the Health Centre; she was the softly spoken dragon
that refused to help in a helpful manor that mirrors her personality. This job
perpetuates her belief that she is a most helpful and understanding person.
I’ve seen people staring at her in disbelief at the reception with the comments
she comes out with. It makes me smile; I am not the only person she does this
to so now I don’t take it so personally.
‘Would you like to take the cups
in the kitchen, I’ve finished my coffee.’ Sam encouraged me to move. I bit my
tong but –
‘No that’s Ok Sam, just put it on
the coffee table next to you’ Duchess
digs her claws in very painfully. As I knocked her off my lap and Sam was about
to protest the door opened, and in walked in Peter and his crew followed by Dr
Burns.
The suit was amazing, worn under
clothes you could not tell you had it on. Even I was impressed with my design
and I don’t get impressed with myself very often. The head band was the same
and I marvelled at the lightweight and complexity of it all. A small app was
transferred to my phone and Sam was bristling with pride that she knew me,
which was a first! She was visibly astounded when the whole team congratulated
me and said they were in ore of me, considering my disabilities and how much
thought had gone into the concept.
‘We have all had a go with it,
and boy - were we pleased with the function. Not all of us could cope with
wearing it though’ He looked over to Dr Bures. ‘Possibly a couple of tweaks
would be needed after someone with a non-biased opinion could be found.
Well what would you do if you
were in my position? Would you take full advantage of it, and put your neighbour
forward - an ability to get the truth over let alone some well-earned revenge? Well
I didn’t have to worry about that, as though by magic with Sam jumped up and
offered herself as a guinea pig.
‘Although there is nothing that
could compare with what you go through on a day to day basis’ Tom looked at me
with such earnest eyes that it made me bloom inside. ‘I think if we did anymore
it would be torture for torture sake, and not research practical.’ I have
always loved Tom, from our first lecture together. His like a universe of
possibilities.
‘Dr Burns was going to take part
and as kindly agreed to ask his staff, if they would like to take part in the
trial.’ Tom sparked interest in Sam in more ways than one and she took the suit
and bristled up to her full height of 5ft nothing, patient high heels, formal
skirt and diamanté hairclip in her perfectly plated blond hair, leaning into
Tom.
“What a splendid idea Dr Burns”, Sam’s
smooth as treacle and sweet as acid voice oozed something like sincerity; which
she may later regret. I understand how this illness is.’ Dr Burns looked over
to me puzzled. ‘I live next door to Kate; I’ve taken her under my wing’
‘Smother me more like’ I grumpily
whispered out of earshot of Sam.
‘I think we should all have a go
with the suit, so we can truly understand how it is for these poor people.’ Big
mistake lady I thought to myself, as her condescending ways got stuck in my
throat so no worlds came out. She had asked no further questions, silly woman.
‘If I try it on now and give it a
go, then you can tweak it and the sooner we can start to trial it out’.
‘Splendid beamed Tom.’ I opened
and shut my mouth. I should warn her?
Now the thing you must remember
of Sam, she has a condition which she equates to every other long term illness
since she found out about it. Now, I would not belittle anyone’s condition, but
just having one condition does not give you a right to say you understand, or
give out the impression you would be able to take on any illness and work
through it. You can see my dilemma can’t you? Should I go easy or should I ramp
up the ‘muscle cruncher’?
They took great pains in
explaining how the suit works, now that she had it on. The electrical currents
to simulate the pain, the tightening and how it took impulses from the brain to
collect data, how the joints had sensors to show instability and how that
affects lactic acid expression, the heaviness of the thin material and how they
could control it. She did try to ask how light material can make your bodies
limbs feel like lead, but she was no geek and they were off the geek Richter
scale. They did explain that they could only cope with 7 on the pain dial app themselves.
The dial went up to 14 which is about where they thought my pain was at. I saw
a flicker of I’ll show them how it’s done, dance with glee across her face.
Sam was giddy with her own
importance, and eager to show everyone including me – probably more me, how she
was a trouper and could carry on regardless. They explained with equal puppy
dog excitement (that Duchess seemed impervious to) that their aim was to get slowly
go up to a 7 while taking notes at each stage.
“It’s just like spandex hold it all
up, tuck it all in and give shape underwear” she followed her shape from boobs
to hip. Who could blame her with these dishy intellectual types all around you.
Sadly for Sam however, her timing was off, they were too engrossed in the app
on my phone. All of a sudden she squealed, and went cross eyed. I tried to stop
myself from a giggle, but the corners of my mouth curled into a smirk and the
giggle bubbled out.
‘Perhaps the inside thigh should
be modified?’ I suggested
“What number have you got that
on” Dr Burns asked suspiciously. I looked down as I was not too sure myself,
they all looked at me clipboards in had for the answer.
‘Two!’
I replied blankly.
‘Two? Are you sure?’ Sam’s eyes
were sort of watering. Simon and lead researcher unceremoniously stuck his hand
up the sleeve of the suit.
“Yep, it’s a two; crank it up two
more, than we will leave it for a while, see how she copes.”
I did as I was told, but instead
of the pleasure of showing someone how it feels, I felt and pang of uncertainty
as I saw the familiar pain flash over Sam’s face.
“No that’s OK turn it up to the”
Another ripple of muscle contraction took the breath away and she held out her
hand to steady herself against Simon.
“Just go for a walk hold onto me
so your body can adjust to the sensations.” Simon suggested.
We all held on to the childish
giggles and comments as Sam walked out of the flat and onto the street like a
person constantly hit by a lightning bolt.
They all decided to make a cup of
tea while they were out walking and adjusting. We sat drinking and nibbling
while talking about the technology and what it would do for the medical staff
with their teaching, about other chronic conditions. How it all brings a new
dimension to care. They all thought that my idea of being able to process the
information gathered by the sweat on how the lactic acid and the heart behaved
was - a genius way of gathering and furthering research.
Out of the corner of my eye I
could see Sam walk like a cat on hot bricks, the sharp intakes of breath,
closing of the eyes and pausing to gain the will to move again.
“Perhaps we should get her out of
the suit and make sure it is working properly” I suggested. Perplexed they
looked over to me, then out of the window where Sam was teetering in high heels,
unsteady and shaking her limbs. Duchess was following looking confused at her
mistress, sitting down and looking around and I felt certain I could see the cat’s
eyes roll.
Two days later they had the data
from Sam’s trial in the suit and they had tweaked it, so that lower settings
were incorporated with differing incremental settings for many other conditions
and individual tolerance to pain.
Sam had not been round to see me
in those two days since she ore the suit, and was frosty towards me as she went
to work in the mornings. Today was not a good day for me the PEM had kicked in big
time. Tom had been my constant companion. He had said that they had caused the
relapse in my condition, the least they could do was support me back until I was
better.
They asked Sam to try on the suit
again. I could see the horror on her face, but she became my hero when she silently
took hold of the suit again. But it was her words that grabbed me the most,
when she looked at me in the eyes with determination and grit.
‘I’ll be happy to’ and as she
passed me she touched my shoulder and privately stated ‘I have the freedom of
taking off the suit, others don’t.They don't have the freedom to work’ She squeezed me just a little and there
just right at that second I lost the ability to fly on a dream cloud, as a
reality sunk in, but I gained another hero and a true friend!
