Well fancy seeing you here...

Hello and welcome to the rambling rollercoaster of useless ponderings, strung together in what the internet calls a "blog," and the voices call a waste of everyone elses time.

Please check your sanity at the door (along with your dignity, logic, principles, good taste and prejudices against daftness.)

"I am here to seduce you into a love of life; to help you to become a little more poetic; to help you die to the mundane and to the ordinary so that the extraordinary explodes in your life." -Bhagwan Shree Rajneesh

Wednesday, 13 October 2010

A Difficult Decennary

I don’t expect anyone to read this, but it needed to be written…

This week is a strange one for me. I’ve written before about how odd the annual anniversary of my surgery is, and how peculiar it always feels to remember back to an age when I was so poorly. This year I feel it more keenly than ever, as it marks a decade since an unassuming medical team at a local hospital saved my life.

At the time I knew things were bad, but had no idea quite how serious. Even now, looking back it’s all a topsy-turvy mess of memories and ridiculously warped perceptions. I recall how normal that alien situation eventually became – how necessity drove myself and my family to perceive some astonishingly awful trials as everyday occurrences, because in their familiarity they had become casual routine.

At fourteen years old I identified more with some of the younger parents than I did with the infants with whom I shared a hospital ward. Though deteriorating daily and desperate to go home, on one ward I spent my time chatting to a young mum whose toddler-daughter had been admitted following complications from her diabetes. I don’t remember her name, but I think the little girl was called Rebecca. The mother was young and had been raised within the mistrustful culture of many poorer cities, so was vary of the doctors and health visitors who had been trying to help her. The more she struggled with her daughters’ illness, the more help they tried to offer her, and the more worried she became that they’d take her Rebecca into care if they discovered she wasn’t coping. I remember long conversations where she’d tearfully recount the occasions when she had hidden in her flat with the little girl, trying to keep her quiet because a social worker was at the door, and the mother was scared even to let them in. They’d been alerted by the hospital because the pair had missed several paediatric check-ups. Rebecca’s mother said that the reason she had missed the check-ups were that she couldn’t always afford the bus fare to get her daughter to the hospital. Rather than asking for help, she had grown more and more fearful of displaying any weakness, lest it be used against her. After a few days of talking her round, and promising her that social services would be able to help her get to the hospital, and wouldn’t take her daughter away, the little girl was discharged and her mother promised me she’d take advantage of the help that was being offered.

A week later when Rebecca came to the hospital for a check-up her mother came to the ward with chocolates for me, her relief evident, the burden lifted somewhat from shoulders only a few years older than mine. She finally found the courage to break away from the scaremongering whispers of the council estate she grew up on, and allowed to social workers to visit her home and chat to her about her daughter. Together they’d sorted out the benefits she was entitled to, and helped her arrange travel for the little girl to the clinic.

I recount this because I remember it more clearly than I recall many of the details about my own circumstances. There was so much information buzzing about the place, so many people coming in and out, and so much crap to deal with (in both literal and less literal senses) that focusing on trying to make a difference became a way to derive some purpose from it all. My father reacted similarly to the situation, staying with me at the hospital the 9 weeks I was there, but putting in more hours than ever as unofficial social worker, grief counsellor and therapist for the many exhausted and struggling parents whose children were my contemporaries.

All the while time was ticking. We didn’t really know how fast at the time; not even the doctors knew how close I was going to come to being beyond their assistance. As I said, so much became normal that I stopped complaining about the pain, I just learned to get on with it. Daily rituals became learning opportunities for me and for the staff, who were more used to caring for younger children and made the most of the opportunity to finally converse with an articulate guinea-pig. They all wanted to know if I could feel the crushed tablets going down the nasa-gastric tube, and what the high-calorie feed tasted like, if I could taste it at all? I vividly remember the strange coldness as they’d flush the pills down with clean cold water to avoid the tube blocking, and the weird release of pressure following a little extra force when it did block, which made my stomach gurgle and made the gentle nurses wince.

My life revolved around various escape plans. Most days that meant that I would have my Dad or other visiting family take me down to the canteen where we’d try and spot presenters and producers from City Hospital, with whom we all became quite friendly. Other times it meant sitting in the Burger King in the hospital foyer, trying to collect all the Pokemon toys and dreaming up schemes to claim the most-coveted Pikachu. (Which we knew was selling for a lot of money on Ebay but could never persuade the staff to let me have.) Even if it was freezing cold I’d insist on going out to the fish-pond outside the main entrance, where I’d sit and nibble home-made sandwiches brought in by my Nan; throwing the fat, ethereal koi carp more than I ever ate myself, and occasionally chucking in a penny with a wish. The main escape plan however was a burning desire to go home – a desperate need which found me sobbing and desolate on more occasions than any physical suffering ever did. I made it home twice during that long stay, once for 14hrs, and the second time only for 7. Each time I’d persuaded the doctors that I was feeling a bit better and they’d given in to my begging to go home. Each time my condition worsened drastically from just the effort required to leave the hospital, and I was rushed back in by ambulance. The last of those times I remember what a treat it was to be pushed around our small local Tesco in a red cross wheelchair, picking out the food I’d been craving while incarcerated on the Children’s Ward. I’d been on a high-calorie diet for months and was encouraged to eat all the things most children are strictly rationed, but hospital food was forever lacking in flavour or nutrition, and the canteen also had its limitations. The meal I chose for my dinner was a puff pastry chicken pie; a pre-hospitalisation favourite and one I had missed the most during a brief period on a milk-free diet where pastry was forbidden. So pleased was I to sit down to this highly-anticipated meal that I – unusually – devoured my portion with gusto, enjoying my food for the first time in almost two years, without worrying about the pain and sickness which would, inevitably, follow. I was devastated when it made me just as ill as I had been when admitted to hospital in the first place, because not only did it seem a cruel denial of something I had been looking forward to, but it was a very difficult defeat for someone as stubborn as myself to accept.

It was then that I knew, regardless of the doctors’ hopes and my own determination to be fine, that observation and maintenance was no longer enough. They needed to intervene and operate, despite the dangers of the surgery and the massive and invasive nature of the operation and its aftercare. Such a drastic step was it to request such a course of treatment that my doctor had me assessed by a pair of psychologists who had to certify that I did indeed understand the gravity of the situation and wasn’t looking for an “easy way out”. I knew it was dangerous, and I was as scared as anyone is when they face something so uncertain, but I also felt deep in my bones that it was necessary. I was exhausted, but more than that, I knew we had exhausted all the other options, and I didn’t have what it took to try them all again when they’d had no effect. I’d borne the difficulty of the 20hr per day tube feeds to keep my weight viable, and tolerated the 60-plus tablets I took each day, but no more. It had kept me alive, barely, but that just wasn’t good enough any more. So eventually, they operated. It wasn’t until later I found out that when they had opened me up things were worse than they had realised. Because I’d grown accustomed to managing the pain and other awful symptoms, they’d failed to spot just how far my condition had worsened. We were told that if they hadn’t operated when they did, I would have deteriorated so much within the next few days that the operation wouldn’t have done any good. Discovering that I came so close to losing my life before I’d even had the chance to take charge of it has always felt slightly unreal. I think I have always felt a little detached from that particular aspect because I was at an age where every teenager feels invincible, immortal, and had never lost anyone close to me. I had no understanding of death, let alone any comprehension of my own threatened mortality. I had known that dying was a possibility, but saw it as something which could happen – if all else failed – but I never believed that the doctors would fail. With every unsuccessful treatment followed the presentation of another. More tablets, a different diet, more invasive tests. It was a relentless merry-go-round but never one I had considered finite. The thought that they would eventually run out of ideas was one which never really resonated with me. Doctors were clever, authoritative figures who made people better. They’d always managed to sort me out before. Being the product of a school system where the people in charge are omniscient, omnipresent beings who must be obeyed meant that I didn’t question the ability of those in charge of my case then. Providing I did as I was told I would get better. And I did as I was told most of the time. I argued with the doctors when they refused to explain treatment plans to me satisfactorily, but compromised in the end. Bar the occasional tablet flushed down the sink or thrown out of the window in exasperation (I blame myself for a generation of mutant pigeons on the south coast) I complied with every round of treatment eventually. Which was why they finally operated, despite the risks, when I asked them to. It proved to be a far from easy option, but one I cannot regret because it saved my life.

When sorting through paperwork recently I stumbled across some poems my father wrote while we were living in the hospital. Some of them are too personal and too heart-wrenching for me to reproduce here, but because they set the tone of the period more than anything I can rattle off, I will share a couple of them.

Tears flowing silently
Down slowly reddening cheeks.
Emotions contained and hidden
Bursting forth from within
Like a watery volcano.
Rivulets streaming across a rounded landscape,
Pouring silently over the crevice edge,
Falling to the floor below.
An outpouring of grief,
Unexpected yet necessary,
To promote day to day survival
And encourage strength to continue.
Not distressing, and without shame,

© Dave Lawrence 2000

I still believe that the whole experience was much harder on the people who love me than it ever was for me myself. I was so overwhelmed by the daily grind of the circumstances and the struggle needed just to live at that time that I didn’t have the opportunity to be distracted by the fear which so consumed them.

I’ve relayed a lot of information about nothing in particular, and it doesn’t do justice to the desperation of the situation I was in then, but then I am not the sort of person to wallow in the worst moments of my life. It’s not easy to escape, especially at this time of year, but that doesn’t mean it has to rule my every moment during other times. While I wish my family hadn’t had to experience the incomprehensible lows and feelings of helplessness that my illness presented them with, and while I often regret the things my adolescent illness prevented me from accomplishing, I can’t wish it away entirely. I am the person I am because of the experiences I have endured. The saying “What doesn’t kill you makes you stronger” is a tawdry cliché, but one which has some genuine application here.

By many peoples standards I have done little with the last decade of my life. I’ve not travelled extensively and am not at the peak of a career. I’ve not begun building a family of my own like so many of my peers, and also had to forgo my ambitions regarding higher education. I still live with the fallout of such major illness even today, and the issues which have followed continue to frustrate and challenge me. But I’ve been published in almost as many books as there have been years since the operation, written features for many different magazines and websites, petitioned the government for better health education in schools. I’ve guested on a panel advising on patient welfare, begun designing my own range of jewellery and learning how to manufacture it. I’ve also collected a glorious, varied and astonishing group of friends and dazzling acquaintances, and have stumbled through adolescence making many of the same mistakes as everyone else, and coming out the other side just as screwed up as the next person and twice as flawed – but still generally pretty pleased with the person I am because of it all.

Most importantly, I survived. I’ve had ten years which I nearly didn’t get, and regardless of the challenges I’ve faced and the limitations I am still wrangling with, that is a remarkable achievement in itself.

The second of my father’s poems captures the spirit of the attitude we were all left with better than anything I could say to end. So I will finish by saying that I will never be able to thank my amazing Dad enough for supporting me through the worst of times, despite him battling his own anguish, and will always be grateful to him and my Nan, Grandad, auntie and friends for all they did to help keep me sane (ish) and as positive as possible during a part of my life we were all struggling to accept and understand.

Nothing is as precious as time.
Each moment of our very existence
Is to be savoured, not wasted.
No-one is so prophetic
As to know what lies in wait,
How time can be lost,
And once gone
Is gone forever.
Live and enjoy,
Use every second, every breath
To make the most
Of time on the planet,
As when it is past
It can never be recovered.

© Dave Lawrence 2000


Johleen said...

Hi Kate,

I stumbled upon your blog through twitter and felt compelled to drop you a note to say how easily you grabbed my attention with your post 'A Difficult Decennary'. You have a lovely, fluid writing style that conjours up images with no effort on the readers part at all.

All the best!
Johleen Wakefield

Kate said...

Well thank you Johleen! It's lovely to hear from you, and welcome to the blog.

-Kate x