organ transplantation
Theory v practice
I’ve studied the ethical issues around the subject;
I’ve talked to many many people with practical experience as either clinicians or patients or relatives;
I’ve even written a book on the subject – Over My Dead Body.
Yes, I’m talking about organ donation and transplantation.
So I knew the facts in theory, but this past week, I’ve had personal experience of the process, and I am impressed in a new and much more profound way by those who commit to this.
Years ago I wrote my own Advance Directive, and to witness it I chose a dear friend, a doctor, who would understand the significance of what I wanted in the event I couldn’t speak for myself – someone I could trust to ensure everything was legal and watertight and fully carried out. We shared so many values. He was twenty years younger than I, so I expected him to outlive me. But last week it was he who suffered a catastrophic haemorrhage in his brain from which there could be no meaningful recovery – exactly the kind of scenario I had envisaged for myself – and it was I who stood at his bedside and alongside his family.
He wanted his organs donated, and was on the register. Of course he did; that was the kind of altruistic person he was. But as I well knew, relatives can veto this request if they can’t bear the prospect. This family didn’t hesitate; they were behind his wishes one hundred percent, instantly comforted by the thought that this selfless act would bring new hope to other families. Now, though, I saw at first hand what they must endure in these circumstances. When we offer our organs in this way, how many of us really think what that will mean to our nearest and dearest? In the midst of their shock and grief, they must listen to and answer so many questions, they must spend so much time waiting and watching, and then have that last goodbye controlled by others.
I saw too, the sensitivity, the professionalism, of ICU staff who maintain the body in optimal condition for as long as needed, and of the transplant team who walk the family through the steps, gently, sensitive to their timing as well as the shelf-life of the organs and the desperate need of potential recipients.
In this case neither the family nor the staff could have handled things better. I was in awe of their commitment, their dedication and skill. My friend would have been so proud of them all, personally and professionally. And I have a new respect for anyone who commits to this delicate and painful transaction. They deserve our utmost respect and gratitude.
Farewell, my kind and gentle friend; you have done a most noble thing.
A little bit of this, a little bit of that
It’s been a funny old week. Muddly and dotty with lots of different balls in the air. All totally eclipsed by the devastation in the Philippines, of course, but life here has to go on, so a quick resume for those who asked me to give glimpses into the life of a writer.
Biggest achievement? Finishing writing the annual Christmas story/play for the grandchildren (which they act out as I narrate). I can’t divulge any details or give you any sneaky peeks lest I incur the wrath of my family who like it to be a complete surprise on the day. But I’ve had a load of fun assembling/ordering the props, and the various costumes it requires are cut out ready for a bonanza whirl with the sewing machine. One bedroom is now strictly off limits to all.
Biggest effort? It’s Book Week Scotland at the end of the month – a week long celebration of reading; and I’ve been invited to put in an appearance (and speak!) at our local library on 28th as part of that. So we’ve done a concentrated blast of publicity for BWS and for Over My Dead Body in our area. The last time I spoke in a public library there were less than ten people there, so any advance on that has to be good.
Most warming? Contact from a lovely man in Northern Ireland, William, who’s been waiting years for a kidney transplant. He’s just read OMDB and now he’s promoting it – with such energy and enthusiasm too. It’s a particular thrill to get endorsements like this from someone who really understands the dilemmas. William’s a bit of a campaigner by all accounts, and hopefully we can work together to raise awareness of the importance of having that ‘after-my-death’ conversation. As you know, I don’t see my role as coming down on one side or the other; just encouraging people to think for themselves. If OMDB does that, it’s fulfilled its aim. Thanks, William, for your encouragement.
Most routine? Sorting and filing a stack of articles about medical ethics for possible future books. Yawn, yawn. Has to be done, though. No fairies in this establishment … or are there? Well … My lips are sealed.
But the biggest preoccupation is undoubtedly Asia and our responsibility to our fellow man. Hard to get those pictures out of your mind, isn’t it? The more we see, the greater the horror. Indescribable.
Timing
It’s five years now since my novel Right to Die was published. In the run up to publication day I fretted when news stories related to this issue appeared. Would they steal my thunder and make it look as if I was jumping on someone else’s bandwagon?
How absurd. Here we are in 2013 and the subject continues to grab the attention of reporters and the public. Only this week the case of Paul Lamb, a 57-year-old man who’s been paralysed for the past 23 years after a road accident, hit the headlines. He’s taken up the campaign (initiated by Tony Nicklinson and discussed here) to legalise assisted death. He too is unable to do the act himself but wants any doctor who helps him to be immune from prosecution.This issue isn’t going away any time soon and Right to Die is as relevant today as it was in 2008.
Whenever and wherever one contemplates slow deterioration and indignity, pain and suffering, the prospect is horrific. It doesn’t take much imagination to see why a swift end to it all might seem preferable. How to live through the process and achieve a good death is the question.
But speaking of death, I was hugely impressed by best selling novelist Iain Banks‘ recent wry announcement about his own impending demise. As he stated on his website: ‘I am officially Very Poorly.’ He is. He has inoperable gall bladder cancer with numerous secondaries and doesn’t expect to live beyond a few months. His current novel will be his last and his publishers are rushing it through to give him a sporting chance of seeing it hit the shelves. He adds with the sort of ghoulish humour which is helping him deal with this tough situation, ‘I’ve asked my partner Adele if she will do me the honour of becoming my widow.’ The style and language of a brave man and a truly accomplished writer.
My own mark will be infinitessimal compared with his but I still worry about the impact of my books and the timing of their publication: the subjects I deal with do have their moment in the headlights. I couldn’t believe it when last week the press picked up on the fact that organ donation rates had risen significantly. and splashed it everywhere in capital letters. And blow me, the topic even came up in fiction in BBC1’s medical drama Holby City, with the death of a young doctor during brain surgery. She’d requested her organs be used and there was a dispute in the family. Hey, that should all have come after Over My Dead Body was published, not while it’s in the starting blocks!
But supply is still falling way below demand when it comes to human organs so all is not lost yet. Indeed, I doubt it will ever be too late to publish a book about transplantation in my life time.
Hands: new and used
Last week I was talking about over-use of my hands during interviews. This week those same hands have been in overdrive in a different kind of way: taking photos, packing picnics … pointing out landmarks, exploring history … playing games, doing girly things … all the fun that lies behind having grandchildren for a holiday. Then to cap it all, my trusty Kenwood Chef went up in smoke (literally!) after thirty plus years of valiant service, so I was back to pounding bread dough manually again. The notion of an extra pair of hands seems more than usually appealing.
Which brings me nicely to the book The Fourth Hand which I read a few weeks ago and haven’t yet told you about.
John Irving has won prizes. Big prizes. Even an Oscar. I’ve read his A Widow for One Year, and seen The Cider House Rules, so I was looking forward to The Fourth Hand. As you know, I’ve been ploughing through a minor mountain of novels about organ transplantation, and such was my confidence in Irving’s literary skill, that I reserved this one till last to savour the flow and style of a master.
But oh dear, what a disappointment, what an anti-climax. I really couldn’t find anything much I liked in Irving’s tale of a hand transplant. Briefly it tells the story of a well known journalist and TV anchorman, Patrick Wallingford, who gets his hand bitten off by a lion in full view of the world watching his news report. Far away in Wisconsin a married woman, Doris Clausen, obsesses about giving her husband’s left hand to ‘the lion man’, whilst in Boston a renowned hand surgeon, Dr Zajac, awaits the opportunity to perform the nation’s first hand transplant.
The blurb says the book ‘seems, at first, to be a comedy, perhaps a satire, almost certainly a sexual farce’ but it is ‘in the end … characteristic of John Irving’s seamless storytelling and further explores some of the author’s recurring themes – loss, grief, love as redemption. But this novel breaks new ground; it offers a penetrating look at the power of second chances and the will to change.’
Hmm, well, that wouldn’t be my summary, I’m afraid. To me the plot is flimsy and unbelievable, the characters are implausible, and to be blunt, I really didn’t care what happened to any of them. Is it likely that every woman he meets wants to fall into bed with this one-handed, immature newsreader? Would any sane woman behave as Doris did for the sake of a complete stranger and an unfulfilled wish for motherhood? Would any surgeon be as indiscriminate and absurd as Dr Zajak? I don’t think so. Of course, you would be perfectly justified in asking, who am I to dare to criticise the work of a literary giant like Irving? But regardless of my credentials, the fact remains that this novel left me cold. It took all my stubborn obsession about finishing what I start to keep me turning the pages.
But then, towards the end of the story, I found a tiny redeeming feature, a little nugget of truth that gave me pause for reflection. Doris loves The English Patient by Michael Ondaatje. Patrick has seen the movie but recognises that seeing and reading aren’t the same, so he sets about tackling the book to try to discover what it is that charms Doris. He slowly comes to a humbling conclusion, and he feels ‘like a fool’.
‘He’d tried to invade a book Doris Clausen had loved, and a movie that had (at least for her) some painful memories attached to it. But books, and sometimes movies, are more personal than that; they can be mutually appreciated, but the specific reasons for loving them cannot satisfactorily be shared.
Good novels and films are not like the news, or what passes for the news – they are more than items.They are comprised of the whole range of moods you are in when you read them or see them. You can never exactly imitate someone else’s love of a movie or a book …’
I don’t believe I was in any particular kind of mood when I read The Fourth Hand. And I’m pretty confident it was nothing to do with transplant-book overload since this is quite unlike the rest of the books on the topic I’ve read. I simply didn’t like it. It was indeed ‘personal’. No matter how many people laud this work, I cannot ‘imitate’ their emotions. Period.
After writing these comments something still niggled though, so I sneaked across to Amazon to check the reviews from other readers, and there I found a surprising number shared my reservations. Instantly I felt a kind of reassurance, which is paradoxical given what I’ve just said about reading as a subjective experience dependent on many personal factors. Hmmm, again. Am I really as confident in my opinions as I think I am?
In any event, I could still use an extra pair of hands! Oh, and I now have to read The English Patient because I’ve only seen the film.
Different kinds of busy
I’m feeling very fortunate. I’ve recently been talking – well, no, actually I’ve been listening – to people who’ve either given or received organs. It’s all part of research for my current novel, which has a working title at the moment of Over my Not-quite-dead Body.
The emotions are still powerful years after the actual transplant, and some of the donors as well as the recipients weep as they talk. I feel immensely privileged to be trusted with their stories. But I’m also awed by their generosity. Every single one of them so far has been a busy person, involved in all sorts of activities and campaigns, and yet they find space for someone like me.
But they (as in inventors of aphorisms) do say, if you want a job done, give it to a busy person, don’t they? And that’s certainly my experience. Every time I write a book I send it out to various experts to check its accuracy and authenticity; and ‘household-names’ provide endorsements. It’s rare for anyone I approach to refuse no matter how famous and busy they are. Best-selling authors, celebrities and peers of the realm, as well as full time policemen, journalists and medical consultants – they’ve all been incredibly generous with their time. I salute them all.
Speaking of busy … Edinburgh is absolutely heaving with folk at the moment. It’s Festival time. Buses take ages to creep along Princes Street, tourists crowd the pavements blocking routes, thespians and artists of every hue vie for one’s attention. Ordinary life is hampered at every turn.
But metamorphose into a festival-goer, and everything changes! It’s an exciting place to be. I’m slotting in events here and there in between doubling as a waiter/cook in a charity café run by our church this week. (Will my feet ever be the same again?) We’re collecting for Village Water Zambia this time. The very idea of relying on scoop holes in the ground for all your water, the disease, the infection … makes you shudder just thinking about it.
The monologue: An Evening with Dementia, I told you about was superb. Poignant as well as humorous. So much truth conveyed so artistically. It certainly rang true for me.
– Yes, people do use unspecific phrases and words to cover holes in their memory. (My mother can still dredge up an occasional bright smile and ‘Hello, dear’. Chance visitors tell us encouragingly, ‘Oh, she knew me instantly.’ But we, the family, know better than to confuse a reflex cover-all reaction with genuine understanding.)
– Yes, there is a fine dividing line between reality and imagination. (The actor peered at us and debated with himself whether we were actually a real audience, or he was inside the virtual theatre of his mind. And I see this doubt sometimes in the eyes of a friend I spend time with.)
– Yes, we all need to be more aware of how we react and speak; people with dementia can be aware at all sorts of levels. (He summed up humbug and obfuscation from relatives and staff perfectly.)
Well worth a visit if you’re in the capital.
And I’m just back from the Book Festival listening to Candia McWilliam. She’s a novelist (she describes herself as ‘intensely Scots’) with a colourful past who’s won several awards herself and judged the Man Booker Prize. The process of judging involves reading about 120 contenders for the title at a rate of about a book a day. No wonder, you might think, that after a while she had to force her eyelids to stay open with her fingers. But this was no normal fatigue. She had developed a condition called blepharospasm, where the brain instructs the eyes to close, though the eyes themselves are working perfectly normally. By the time of the Booker Prize evening she was ‘functionally blind’. After conservative treatments failed she had surgery to insert tendons from her leg to peg her eyelids to her eyebrows. Her book, What to Look for in Winter is both a literal and metaphorical journey through not only physical blindness but also the experiences of alcoholism and betrayal of her second husband.
I didn’t dare ask a question, though I was wanting to. It was stressful enough watching others silenced by a quelling one-liner! Unusual in the Book Festival where authors tend to bend over backwards to make what they can out of any question that comes their way – even the ones about inspiration and technical process and why-did-you-write-this-book that they’ve answered a thousand times before. Not this lady!
But that aside, tonight it was a particular treat to just sit still with nothing more demanding to do than listen. My joints and legs have unilaterally decided that the sedentary life of a writer is a doddle compared to the life of a waiter. Well, it’s a different kind of busy. And I’m certainly not complaining. What’s a measly week on my feet all day compared with a lifetime of feeding your children contaminated water from a scoophole?
Launch day!
Wahey, Remember Remember is now officially launched – a mere three months after publication date.
Last week, as I wrote my blog, you may remember, I was cooking wee delicacies for the nibbles (the very ones pictured below), and juggling several other competing demands (humdrum domestic as well as professional ones), wondering if I’d ever be ready on time.
Anyway, on the day, the food looked passably edible. You can’t go far wrong with fresh Scottish strawberries now, can you? And a 100% silk overblouse I acquired from a wonderful lady in the Royal Highland Show a couple of years ago allowed me to pretend I had nothing better to attend to than the shape of my cuticles and the shade of my eye shadow. Did anyone guess that up to five minutes before guests started appearing I was wielding spreading knives, and sparkling wine glasses, and tangling with clingfilm, I wonder? Actually, doing the physical preparation myself this time (my own choice, I should hasten to add. Well, you know how obsessive I am) was quite therapeutic. Stopped me getting too bogged down in mental preparation – of the ‘I’d-better-read-every-report-and-academic-paper-and-legal-case-on-the-subject-just-in-case-some-omniscient-wiseguy-challenges-my-credibility’ variety.
The sun shone brilliantly, lots of lovely people came from all sorts of different professions and backgrounds and perspectives, and they mingled beautifully. Everyone was polite enough not to spit the food back at me, and they were so responsive to cue that they all sat down spontaneously after early mingling without so much as a raised voice, or a bell, or a gong in sight.But I’m sure they’d all forgive me for awarding the gold medal for the night to the chairman, John Killick. He’s a poet who works closely with people who have dementia, encouraging communication and creativity – hence his role interviewing me about a book on the subject. You can read more about him on www.dementiapositive.co.uk although his site doesn’t do justice to his international reputation. (Nor does this photo, but somehow importing it lost something of the sharpness of the original. DJ and I laboured long and hard to rectify this, but to no avail. So sorry about that.)
Anyway, John’s a delightful man, and on this occasion he set a perfect tone for the evening with his relaxed and amusing approach, alongside a total grasp of the subject under discussion. We organised the programme much as a book festival interview, and John had dug up some impressively insightful questions for me on the story I’d written. It’s always gratifying for an author when someone has analysed and thought about the structure as well as the content of their book, and John had taken this to an extraordinary level.
One other guest deserves a special mention too. And that was Cornflower. She writes a hugely successful blog about books (recently ranking number four in Wikio’s Top UK Literature Blogs) and was kind enough to review my last one, Right to Die, last year. If you haven’t visited her site you should. (She’s the pretty smiling one with the bag large enough to carry lots of books around.) This was my first time meeting her (and Mr Cornflower) in the flesh, but we’ve already arranged to have coffee together to have a proper chat. If you’re the author at a launch it behoves you to skim over the surface of the pond hovering superficially beside every guest, not dive deep in one spot with any one individual. Regrettably. There were lots of diving companions I hankered after on Friday night.
But hey ho, partying over, it’s now time to get back into the current book about a young widowed mother and her two little girls who’re involved in a serious road accident … and a family faced with a request for organs … and a queue of sick people on the transplant waiting list … I think I’ll soon have got sufficiently to grips with the questions and issues to be ready to sally out into the real world and spend time with transplant surgeons and coordinators and recipients and … well, who knows? It’s a big world out there! And an endlessly fascinating and challenging one. One of the guests at Friday’s launch knows someone who became a live donor and introductions are forthcoming. Oh, yes, that was another bonus – all those links and connections we made that will ripple on. Great stuff.