by Chris Birch
As I sat there, another sensation bubbled up, this time it was tears. My whole body shuddered with sorrow and the sharp, salty, taste of my sobs trickled into my mouth. What is wrong with me? What the hell is wrong with me?
Chapter Eight: Diagnosis
A huge, silver bowl full of bright, orange, gloop wobbled on the white tablecloth in front of me. Next to it, another vessel held a sunshine yellow concoction that was dotted with lumps of chicken, they floated around like ducks on a pond of nuclear waste.
Do I have to eat this? I thought, as I tried to distinguish which dish was responsible for the burning chilli smell that was tickling my nose hairs.
Behind me was a wall of noise, there was a deep throaty laugh, a female chattering and the squeaks of a child repeatedly asking for chips. Every now and then there was a synchronised lull in everyone’s conversations and I could hear the ticking sitar of Bhangra music.
'Here you are Chris, it’s your favourite, a lamb sizzler.’
I broke my stare away from the jewel coloured curries in front of me and looked up, I was surrounded, a dozen faces sat around the same table and stared back at me.
'Happy 21st Birthday Chris,' Mum announced, then the table of people suddenly broke into song.
'Haaaaaa-py Birthday to you,' the chorus, mainly made up of low, male, voices, started slow then fell into a jolly rhythm.
'Happy Birthday to you, Happy Birthday dear BIRRRRRCHHHHY, Happy Birthday to YOU'.
The song ended raucously and then a loud thudding broke out, like there was thunder inside the restaurant. My hands were shaking. I worried if it was an after effect of the stroke until I noticed the whole table was shuddering too, the people I was sat with were bashing it in unison.
'SPEECH, SPEECH,' a voice bellowed.
Suddenly, the small room, in my local Indian restaurant in Blackwood, felt like a crowded football stand. I looked at Mum helplessly. She smiled back at me and nodded her head as if to encourage me but then noticed my horrified expression and quickly turned to the others.
'That’s enough, you’re disturbing the other tables,' she said and then smiled to cover up her concern.
It was my birthday party but all I wanted was to get as far away from the restaurant and everyone in it, as possible. Why wasn’t I enjoying myself? I checked my watch and wondered how much longer I had to stay, give it another twenty minutes and then I can go home, I decided.
A week before my 21st birthday Mum had pleaded with me to let her plan a party.
'You’ve hardly seen anyone for four months Chris, you’ve got to get out,' she had
reasoned, from behind my locked bedroom door.
'Why?' I snapped back from underneath my duvet, in bed.
'Why? They care about you, they’re your friends, they miss you,' she said simply, as if it were obvious.
I guess it was obvious, to her, for me it wasn’t so clear cut. My friends didn’t interest me anymore, on the few occasions they had popped over I hadn’t wanted to see them, I assumed the feeling was mutual.
'You’re worrying me,' she said softly.
Despite the closed door between us I could feel her frustration.
'Let me organise a meal out for your birthday, it will do you the world of good. It’s your 21st you have to do something,' she sounded desperate.
Worn down and with no good excuse coming to mind, I pulled the duvet off my head, got out of bed and unlocked the door. Mum immediately pushed it open and for the first time in weeks I actually looked at her face. The grey outline of bags hung underneath her puffy eyes, she was wearing a creased, blue, t-shirt and looked up at me, helplessly. I had been so busy concentrating on myself I hadn’t thought about the toll the accident had taken on her, she looked desperate.
'Fine, let's do a meal,' I shrugged, giving Mum a half smile.
Mum’s body immediately straightened, as if she were a puppet on a string. A huge smile suddenly appeared on her face.
'You’ll have a great time, you’ll see,' she said with a grin.
Mum pulled me in for a hug and I rested my head on top of hers and enjoyed the warmth of her cuddle.
After the accident, life had become an endless merry go round of doctors appointments, hospital visits, scans and blood tests. I got so used to having my blood taken that I felt like a pincushion and hospital waiting rooms were now as familiar as the sitting room at home.
Despite their best efforts none of the doctors had been able to tell me what was wrong with me. Mum had become so frustrated that every week she would suddenly announce that we were visiting the Prince Charles Hospital in Merthyr on the off chance that a different doctor might be able to give us some more information.
Mum would drag me out of bed and I would oblige, too tired to argue and pull on whatever t-shirt was on the bedroom floor. I would trudge into the car and Mum would flick on the radio, changing stations until she found some upbeat music. I guess it was her attempt at distracting us both from the hopelessness of my situation. When we reached the hospital we would be told there was nothing they could do.
‘You’re on the waiting list to see a neurologist, you just have to be patient,’ a doctor would tell us and then we would return to the car, defeated and drive home.
The headaches were still ferocious, the painkillers I had been prescribed by the doctor never completely eroded the agony, they just dampened it, the stabbing pains turned down to a slight jab, only to be turned up again as soon as the tablets wore off.
Four weeks of relentless pain had chipped away at any fighting spirit I had once had and replaced it with a resigned depression. This is how I will be for the rest of my life, I told myself, in my darkest moments. How will I ever get married, work, or even, read a book again? I had started to contemplate an existence plagued with pain, exhaustion and the clouded mind that had kidnapped my body.
Life had been paused, everything and everyone around me moved but I was held in limbo.
'Here’s another letter Chris, we need to sign you off work for another month,' Doctor Thompson explained at my check up.
She passed me a crisply folded piece of paper, I held it along with the prescriptions for painkillers and sleeping tablets that she had already printed off. My mind flashed back to a month before, where, sat in the same room, the doctor had handed me my first sick note. 'You might not need the whole month off,' she had said optimistically and I had believed her.
Now it wasn’t clear if I would ever return to work.
The doctor cleared her throat and brought me back into the present.
'You’re on the waiting list to see a neurologist at Caerphilly Miners Hospital, so all we can do is wait,' she said.
I rolled my eyes, I had been on the waiting list for a month now and was no closer to seeing anyone who could actually tell me what was wrong.
'We still think it could be Chronic Fatigue Syndrome and..' the doctor started but before she could finish Mum butted in.
'Pffft, well even I can tell you it’s not that,' Mum snapped.
'People with CFS don’t have headaches and it doesn’t come on so suddenly,' Mum said.
She had rolled off this sentence at every doctor’s appointment, it was like some kind of catchphrase.
'Well it could be something else, the truth is we just don’t know at this point,' the
doctor shrugged.
I gripped the letter tightly, trying to push out my frustration onto the paper rather than lose my temper again.
As the weeks passed with no diagnosis it had been harder and harder to keep a lid on my emotions. Mum didn’t think I had Chronic Fatigue Syndrome but she had no idea what else it could be. The fear of the unknown illness that was blighting me weighed me down, like a heavy backpack full of stones on my shoulders, every day that passed without answers added another rock.
'He’s been very down,' Mum admitted, 'he spends most days in bed and he won’t see his friends'.
The doctor looked me up and down.
'You�
��re lucky to be alive Chris, that’s something to be happy about,' the doctor said.
'If this is what my life is going to be, I don’t want it. I’d rather be dead,' I sighed, it sounded dramatic but it was the truth.
My words clung in the air, Mum gasped and the doctor suddenly looked serious.
'Wait in the car, Chris,' Mum suggested passing me the keys.
I looked back at Mum, then the doctor but neither of them would meet my gaze, so, like a humiliated child who had been told to leave the grown up’s alone, I sloped off to the car.
Why did Mum always want to speak to them alone? I thought, recalling all the times Mum had pulled the GP and other doctors to the side for secret chats.
Maybe they know what’s wrong with me and it’s so serious that they aren’t telling me. Am I dying?
I began to pull together memories from previous trips to see the doctor and spin them into a story but then, as I waited to see Mum’s face appear from the Health Centre doors, my left hand started to shake. I focused my eyes on the tremor and willed it stop but my hand carried on shuddering slightly. The same thing had been happening every few days. Before I could give it a second thought the car door opened and mum plonked down next me, her weight lowering the car momentarily.
Quickly hiding my shaking hand underneath my coat I shot her a smile, it’s probably just tiredness, I thought.
There were lots of odd things happening to me and they weren’t all physical, in those four weeks after the accident my temper had become ferocious. It didn’t help that Mum’s boyfriend, Derek, had moved into our house and added to the pressured atmosphere.
A few weeks before Dad had offered to take Simon and I, on a trip to Blackpool to take my mind off the accident. I had packed my bag nervously, worried about my first trip away since the accident.
A change of scenery will do me the world of good, I had thought, pulling a t-shirt off the hanger and then scrunching it up into an overnight bag. At that moment a loud voice bellowed from the garden, I recognised the tone, it was Mum’s boyfriend, Derek.
'It’s his dog, he can clear up it’s mess,' the male voice snapped.
I stepped away from the suitcase, moved towards the window and peered down at my Mum, she was in the garden, picking something up with a plastic bag. Mum had offered to clean up after my dog for me because when I tried to do it myself I had almost fainted.
'He’s lazy he is,' the voice continued, as Mum moved towards another section of
the grass.
Suddenly, I felt the need to move, my heart pumped louder, breath became faster and I felt my face redden, it was like I had just been injected with adrenalin. The word lazy reverberated in my brain, over and over again. He’s Lazy. I wasn’t lazy, I was ill but with no name for my illness I felt like people thought I was faking it.
'He takes advantage of you,' Derek carried on.
His voice seemed to be getting louder. Gripped with anger, I rushed down the stairs and before I had thought about what I was going to do, I was out of the back door and in front of him in the sunny garden.
'DON’T CALL ME LAZY,' I yelled.
My voice seemed to echo back at me in the otherwise silent garden. I was two feet from Mum’s boyfriend by then and not at all bothered that he was both taller and bigger than me.
‘I’m not lazy, I'm ill. Don’t call me that … don’t call me that!’ I shouted.
I knew that I was repeating myself but it was like I was in a trance, I couldn’t stop myself from barking the same words. I caught sight of a kitchen knife that had been left on the picnic bench, on top of a blue tea towel and instinct told me to grab it. As soon as I did I wasn’t sure what to do with it.
He needs to know he can’t call me that, I thought to myself, staring down at the shiny serrated blade in my hand.
Mum quickly ran over, parking herself in between the two of us.
'Of course you aren’t lazy love, we know that,' she said.
Mum’s voice was calm on the surface but her face betrayed her panic. She rubbed my shoulders and tried to calm me down, my breathing was heavy and loud, like I had just ran a marathon. Mum tried to catch my eye, she moved her head until I was looking down at her. It worked, her face pulled me out of the anger that had gripped me and I released the knife, ran back upstairs and shut my bedroom door behind me.
What are you doing you idiot? I was mortified that I had lost my temper so badly.
A knock at the front door broke me away from my self-loathing, it was Dad, coming to pick Simon and I up for our trip. I grabbed my bag, padded downstairs and was met by Mum waiting by the front door. I was ashamed of my behaviour but didn’t know quite how to tell her.
'Sorry,' I shrugged.
'It’s ok, just enjoy your trip,' she sighed.
I could tell she was looking forward to me leaving it meant she would finally get some peace.
As soon as I sank into the seat of Dad’s car my eyelids closed, when I opened them we were driving into Blackpool.
'Feel better Son?' Dad asked cheerily.
He glanced at me as he held the steering wheel, music blared out from the radio.
'Yeah,' I lied.
I won’t feel better until someone explains what’s wrong with me and tells me how to fix it, I thought.
Once we had parked up we walked towards Blackpool pier, the looming metal steeple reminded me of pictures of the Eiffel Tower. As we made our way towards the glittering lights of the amusement rides on the pier, dozens of different hen and stag parties walked past us. Women with matching pink, satin, banners spelling out ‘bride,’ or, ‘hen,’ and men stuffed into costumes, sauntered past as if it were the most normal thing in the world. I envied the carefree expressions on their faces.
'That’ll take your mind off the accident,' Dad announced.
I turned towards him, took a breath of the salty sea air and followed the line of his pointed finger, he was directing us towards a huge metal fortress, The Pepsi Max Big One, it was the largest rollercoaster I had ever seen.
'Let’s hope so,' I chuckled.
I was happy to try anything that might temporarily take my mind off the same infuriating question that echoed in my mind, what is wrong with me?
Before I knew it we were sat in a cart and a metal bar had lowered on top of me. But the normal bubbling pang of fear that I would get from going on a rollercoaster wasn’t there, I felt indifferent.
'Ready?' Dad grimaced, 'let’s hope we make it out alive'.
What does it matter? I thought.
I looked out from beyond the metal cage around me and focused my bored expression on the blue-grey sea beyond, it seemed to blur with the colour of the sky on the horizon. Then it hit me. I wasn’t scared because I didn’t care if I lived, or, died.
Back home in Bargoed the summer heat lifted everyone’s spirits. The park where I had had the accident was full of happy faces, kicking balls, sharing picnics, buying ice creams. From the dark grey confines of my room I looked out of the window at the bright picture of summer.
My neighbour’s children were happily playing in their paddling pool, their high pitched screams, the tinkling of ice cream vans and the smoky scent of barbecues filled the air. Everyone was having fun but me. Like some kind of crustacean, stuck in the safety of it’s shell, I hid away from the world as I waited for my diagnosis and with each day that passed I became more depressed.
My weeks were only broken up by countless trips to the GP and the hospital for blood tests, CT scans and endless rounds of check ups that left me feeling like a lab rat.
We were still on the waiting list to see the neurologist at the hospital and my life was on hold until I could find out what was wrong with me.
It felt like I was inside a snow globe, everything was moving outside my window but I was static.
I wish I could hear myself think, I thought, fed up with not being able to have one thought that wasn’t penetrated by the spasms of pain.
'Why don’t you wat
ch a film?' Mum suggested one day, 'it might take your mind off things'.
But it was impossible to enjoy anything because of my painful headaches.
'Tell you what, let's go and see Nan, will do you good to get out of the house,' she
suggested.
I wanted to say no, like I had the dozen times she had asked me already that week but I knew Nan would be desperate to see me and I had missed her. We were so close, I wasn’t used to going weeks without saying, ‘hello’.
'Okay,' I sighed.
Mum’s eyes widened and she shot me a shocked smile.
'Right, ok then,' she said, surprised that I had agreed.
We drove over to Nan’s house, I pressed the doorbell and within seconds the front door had flung open.
'Christopher!' Nan sang, a huge smile stretched across her face and she pulled me into a hug which forced my face into her green itchy, woollen, cardigan.
My back squeezed as her cuddle got even tighter.
'I’ve missed you,' she whispered into my ear before letting me go.
Trying to concentrate on Nan, instead of the pain in my skull, I smiled back,
'I’ve missed you too Nan'.
Inside, settled onto the sofa, a huge plate of biscuits were plonked in front of me.
With a wink Nan said, 'I still buy all your favourites, you loved them when you
were a little boy'.
Before I could reach for my cup of tea, Nan and Mum had launched into a frantic chat and with no idea who, or what, they were discussing, I zoned out. By now the sharp pains in my skull had worsened, it was a feeling I was used to but unlike at home, where I could lay and do nothing but focus on the sensation, I felt as if I had to make an effort to disguise the agony I was in. I didn’t want to tell them, I was convinced everyone was bored of hearing about my mystery illness with no name.