Through eyes not all my own...

I shattered. I do not claim this with an agenda of attention, and likewise several years had to elapse before I allowed for such a self-diagnosis to exist outside the realm of gossip-privy melodramatics. However, I do now believe that I at first became obliterated in the conception of those closest to me, owing an entire reconstruction born from an incident remarkably sudden and ferocious. Long before I allowed myself to be pieced back together again, a great many others had hastily attempted the puzzle. A post-operative identity emerged not merely from my own stream of consciousness, despite the winding road of reasoning it would pave for itself, but also from a third-party mental universe; time alone would ultimately determine those tenets, born from competing bodies of comprehension, granted monogamy in a contemporary, personal construct.

Pure dichotomy defined possibly two or three years: 40-50% of these six years since acted out of a stage of competition, sometimes as badly choreographed as the Dame slaying the Villain, yet equally home to blatant acts of antagonization, incidents as hurtful as they were perceivably irrational. It is this dichotomy, extant from a personal rendering of consequences born from effect: that one particular incident, my need for a new internal organ, and how this effect yielded my control of how to be perceived, even approached, in the eyes of the common beholder as well as beloved companion.  

My remarkable gift, the perfect example of divine medicine, was immediately tainted. For the teenager who had just embarked upon further education, who was taking steps paramount in future development, even though admittedly at the time one was firmly, ardently, and ignorantly unaware of this fact, and had reached the final year of teenagedom heralding stereotypical parental virtues such as all round excellent exam results, competency in varied extra-curricular activities, and not being one to ever talk back, stay out all night, and the like, who had, basically, been promised all, anything and everything his mind could commit to, instantly became ‘precious’, ‘physiologically weaker’, ‘alive albeit burden’. These tags would come to inform people, most significant those whom I loved and cared a great deal, that my interest was to be protected by limitation, prevention, allowing a polarity to exist between the archetypal man my age and I, the medication dependent, immunosuppressed, figure of ‘non-health’. Care and consideration may have born these feelings in my peers, but likewise the creeping, eventual permeation of such made me feel lost, broken and not knowing how to be found. 

Encephalopathy

The reason as to why I have no clear memory of the days and deeds leading to my transplant, a period of at least five days, is encephalopathy. In a nutshell encephalopathy is the occurrence of “confusion, altered level of consciousness and coma as a result of liver failure” - when the liver ceases to function correctly otherwise harmful toxic nitrogenous substances fail to be neutralised, the effect of which, as experienced first hand, causes severe memory loss and confusion. In general encephalopathy is reversible and can be treated. However, in the context of acute liver failure the advent of the condition forewarned of a liver lost. Sitting crossed legged on the hospital bed, surrounded by recently made revision notes for an imminent university exam on the foundations of East Asian history, one of the many faces of the upper echelons of the Royal Free’s liver team asked me to sit-up straight, close my eyes and raise my arms, with clenched fists, in front of my person. I often think about the point at which I opened my eyes and discovered I had utterly failed what should have been one of life’s hitherto easiest assessments. Even though I hadn’t been informed what this result denoted it was painfully evident on the consultant’s face. Verification imbued with pity; a sealed fate. The true curse was that the path irrevocably paved would become, in essence, well tread by many...but not me, at least in a dualist sense of me. To put in perspective, I actually have no recollection of being told that, unless what had become lost was made new, I would be dead within days. Encephalopathy was the precursor to death, my encounter with my end, yet tangible only posthumously... well, at least posthumously in the respect of my organic organ.

This said, however, I do have a couple of memories-come-hazy-flashbacks of my person during the encephalopathy induced confusion. I do recall frantically, and not so subtly, insisting to my little brother that the nurses were patronising me. I believe this logic heralded from a unprecedented want of juice, a want ultimately denied due to some water only or nil-by-mouth regime; exactly which I am unsure. I also maintain that I experienced a spell of clarity as I was literally being put under anaesthetic. This said, such a memory seems perhaps too favourable and I fear perhaps it is the product of dream or medicine-induced hallucination. As it happens, due to the fact that in my encephalopathic state I had become somewhat deviant and unresponsive to request and reason, I am told it was decided I should be anaesthetised whilst the wait for a possible donor continued. I vividly recollect, however, simply knowing that I was have my consciousness medically surrendered. I was suddenly surrounded my medical staff, being put into a slumber I did not understand and I was scared. I don’t intend to preach fear but I cannot feel that which I felt during that heartbeat moment of lucidity. It scarred me, and if again I ever glimpse this fear I know I will break, run, shatter and not have the strength to become whole again. I wanted my parents, so simple, so desperate, I wanted my makers to just make it right.

Organ Donor Facts

There are 7,951 patients on the transplant waiting list: 6,867 need a new kidney, 370 need a liver, 268 need a kidney and a pancreas, 231 need a lung or pair of lungs, and 118 need a heart.

The UK has one of the lowest donor rates in the western world. About 1000 people a year die waiting to receive one.There were 2,640  transplant operations between April 2009 and April this year, involving 1,057 live related donors (relative, friend or stranger). A healthy person can survive donating part of their liver to someone else, as theirs grows back quickly to full size, as does the donated section.

The number of people who have signed the organ donation register has risen from 8 million in 2001 to 17.1 million – about 27% of the population. Traditionally, organs have come from road accident victims and brain haemorrhage patients. Improved road safety and medical intervention mean fewer are dying. Kidney failure costs the NHS in England more than £600m in 2004-5 – about 1% of its total budget. There are close to 2,100 people on dialysis. 

Organ Donation Q & A's                                            [source: http://www.nhs.uk/Livewell/Donation/Pages/Ethicsandworries.aspx]

Can I agree to donate to some people and not to others?

No. Organs and tissue cannot be accepted unless they're freely donated. No conditions can be attached in terms of potential recipients. The only restriction allowed is which organs or tissue are to be donated. 

Could my donated organs and tissue go to a private patient?

Possibly. However, patients entitled to treatment on the NHS are always given priority for donated organs. These include UK citizens, members of Her Majesty's forces serving abroad and patients covered by a reciprocal health agreement with the UK.

Other people will only be offered an organ if there are no suitable patients entitled to treatment under the NHS. Every effort is made to ensure that a donated organ does not go to waste if there is someone who can benefit.

Donated tissue is made available to any hospital in the UK where there's a patient in need.

Could any of my organs or tissue be given to someone in another country?

Yes, possibly. There's an agreement that any organs that cannot be matched to UK patients are offered to people in other European countries. Likewise, UK patients benefit from organs offered by other European countries. This cooperation increases the chance of a suitable recipient being found, ensuring that precious organs do not go to waste. Tissue might also be offered to patients in other countries.

Are there religious objections to organ and tissue donation?

No. None of the major religions in the UK object to organ and tissue donation and transplantation. If you have any doubts, discuss them with your spiritual or religious adviser. In addition, the Organ Donation Directorate of NHS Blood and Transplant, has produced a series of leaflets that focus on the six major religions in the UK.

Does the colour of my skin make a difference?

No. However, organs are matched by blood group and tissue type (for kidney transplants) and the best-matched transplants have the best outcome. Patients from the same ethnic group are more likely to be a close match. A few people with rare tissue types may only be able to receive a well-matched organ from someone of the same ethnic origin, so it's important that people from all ethnic backgrounds donate organs. 

Successful transplants are carried out between people from different ethnic groups wherever the matching criteria are met.

Can I agree to donate some organs or tissue and not others?

Yes. You can specify which organs you would wish to donate. Simply tick the appropriate boxes on the NHS Organ Donor Register form or on the donor card, and let those close to you know what you've decided.

Will organs or tissue that are removed for transplant be used for research purposes?

Organs and tissue that cannot be used for transplant will only be used for medical or scientific research purposes if specific permission has been obtained from your family.

Would a donor's family ever know who the recipient was?

Confidentiality is always maintained, except in the case of living donors who already know each other. If the family wish, they'll be given some brief details, such as the age and sex of the person or persons who have benefited from the donation. Patients who receive organs can obtain similar details about their donors. It's not always possible to provide recipient information to donor families for some types of tissue transplant.

Those involved may want to exchange anonymous letters of thanks or good wishes through the transplant coordinators. In some instances donor families and recipients have arranged to meet.

Can people buy or sell organs?

No, the transplant laws in the UK absolutely prohibit the sale of human organs or tissue.

Can a deceased person donate sperm or eggs for future use?

While it is possible to retrieve sperm or eggs it is illegal to store either or to create an embryo without the prior written consent of the donor.

Can someone with HIV or hepatitis C donate?

Yes. In very rare cases, the organs of donors with HIV or hep C have been used to help others with the same conditions. This procedure would only ever be carried out where both parties have the condition. All donors undergo rigorous checks to guard against infection.

5 years in, this is my first contemporary documentation…

I haven’t, in all the time that has elapsed since I had my own liver replaced with that of a teenager two years younger than myself, made any attempt to rationalize, through physical or social means and media, the journey endured in having to accept and adopt a life entirely born anew. This, I must strongly contest, is not an overstatement. Moving from 19 years based upon the notion of progressive continuity, an emotional bliss that, whilst battled with in the context of its formation, I only now appreciate to the point that the majority of my tears are born from bitterness: human ignorance is a treasure I will only ever be able to obtain using one of the genie’s three wishes. 


The years B.N.L (before new liver) had contained with them temporal facts, immovable and true, yet also formulated all the foundations of hope and expectation: I have lost my only, albeit perhaps only flimsy in actuality, opportunity to trace that elusive ‘future’. What now could possibly provide me with the same comfort given the majority whom have retained their map to regarding the relationship between mental, spatial and all the ‘other’? Nothing. That is what, expect perhaps a map born from entirely new foundations and which, I now know a priori, for myself seem only perceivable after a now significantly regarded five years have passed! It was perhaps three years in the making that I even allowed myself any personal pity, brushing any sentiment other than gratitude off my shoulder lest I appear ungrateful for the life, through all intents and purposes, I should not naturally possess. Ha, my very life has been made manifest through human vanity and marvel. A modern zombie walking through a world paradoxically collapsing through increasingly inconclusive boundaries. I never want to be an exculpatory product, granted permissibly some status of acceptability. A model created specifically to counteract deficit is merely an artificial appendage, ultimately residing within a dominant, pervasive social disposition towards maintaining and perpetuating a 'universal'; universal that is as science allows, with accountable anomalies. And so now my day-to-day, month-to-month, year-to-year life must follow the laws as preordained by aforementioned anomalies.


I will never apologise for any socially perceivable abnormality, regarded without access to the strands that make up my whole. Most days my hands, and even beyond, will tremor with an astonishing ferocity, a symptom progressively worse and apparent. I never asked for any extra time in academic exams which, towards the end of the three hour plus period, I could not, in all honestly, trust what I had in fact written: more a polygraph than a serious academic treatise. Now, at this moment, for example, I have forced myself to push through any embarrassment born through strangers seeing how my hands seem at pains to manoeuvre the simplest peripheral object, may it be phone or pen. This is my reality. As is bouts of aggressive insomnia only balanced through all-consuming fatigue. More examples? A soul destroying, progressive social anxiety that may strike in varying degrees, but always combats against a rationality I with ease, and now frustration, can map completely yet, in experience-dictated reality, simply gets disregarded; modes of experience that simply are, immovable and, in the end, adapted to degree one allows, the other eventuality being total detachment from that aforementioned ‘universal nature’: no longer an anomaly but extinct. All these debilitating manifestations exist through an oxymoronic lens; my life would otherwise simply not exist. Neurotoxic medications in ultimately lethal doses perpetuate what I will always regard a gift, despite the tears, the existence perennially uncharted, uncertain, the only persistent truth a degradation, physically and mentally, back to that corporeal void. A gift of life hindered by needing adequate time to accept and negotiate certain hardships and heart breaking fact. It has taken me five years already to reach in real terms a state of mind I rationally grasped all along. Alas! I will be the most sorry to accept that these now stand as five years lost, not to a natural youthful learning curve, but form a staggering fraction of that gift of life given. Five years on to learn to accept a new life, yet now already burdened by the consequences of neurotoxicity. 70 pills a week to keep yet kill me, both to the bystander in unacceptable behavioural or physiological traits, and under the surface. It was no happy event when I learned I had reached a lifetime-landmark: in no sugar-coated terms my kidneys are failing. Never pity me, when I can ever now only be as I must be. So, I will never beg any forgiveness, but can only now provide in real terms to any who feel they need know that I am allowed to appear not myself, for who is this ‘myself’ if I am the last person who could possibly know him?

Post-Operation Jaundice

The below is one of but a few images heralding to that time languishing in the Royal Free hospital almost five years ago, taken immediately after my transplant...

My best friend James modified this image as part of his second year fine art project whilst at Central Saint Martins. The theme of his work centred around fragility.

And, as another example of one's post-operative state of jaundice, feel free to feast your eyes on this: 

70 pills a week...

Keeps the....

...at bay!

Intensive care PART ONE

To balance the five or so days of memory loss prior to operation, recuperation in the ICU provided me with countless adventures: imaginary and actual, existing outside of time with brilliant rapidity and painstaking languor in differing measures. I have organized such events into some form of comprehensible narrative, yet the actual occurrence of which remains questionable, for whilst I clearly remember being instructed by a cluster of doctors crowding my bed to respond to their voices, the reward of which being to have the mystery tube withdrawn from my oesophagus and replaced with an oxygen mask, I still managed to invent the scenario as being that if one slipped into unconsciousness, without the mask firmly in place, then you simply would not wake up. It was terrifying. In fact, a good fifty percentage of my pre-compos mentis dealings were mesmerizing in their abjectness, equilibrated only by other wondrous, imagined scenarios. Little time had elapsed, but the whole world had been presented to me; something raw had been unearthed in the interim between my sedation and continued consciousness.