We've recently had organ donation week here in the UK. The aim is to raise awareness of organ donation and to get people signed up to the organ donor register.
The other donor option we have in the UK is that of blood donation, which you can do long before you become dead. I signed up before I went to university, but due to bad admin and me being sporadically ineligible (for body piercings and sleeping with gay men), I didn't donate whilst I was a student and had my first (and only visit) nearly ten years later. Just after this, I went to Africa - meaning I was ineligible again.
If you move house, the blood service will change your address, but won't update your nearest donation centre, meaning that when I lived in South East London, I was being sent details of sessions in Essex. The same thing happened again when we moved from South East London to the wilds of Kent. After that, I fell off the radar, as I didn't want to pre-book an appointment to donate, and the blood service didn't like people to just rock up as and when. Then I got diagnosed with RA, got put on drugs that meant I couldn't donate and the rest, as they say, is the aggregate of past events.
I'm a universal donor - which means my blood type is O- and I can donate to anybody. You know in medical dramas when they call for X units of O neg? That's my blood type. The American Red Cross has an explanation here. Even though I know, logically, it's not my fault I got arthritis, I still get a twinge of guilt when friends donate, or when the blood service has a recruitment drive, as I know how useful my blood could be.
I signed my donor card in 2009, almost four years before being diagnosed. This is the first year that it has crossed my mind to ask whether there's a link between not being able to donate blood and not being able to donate organs. Actually, it turns out there isn't:
I cannot believe how much this has made me smile, how happy I am at the thought of being cut up after I'm dead. Actually, I'm fibbing. The thought of being cut up after I'm dead makes me feel a bit squeamish, but I won't need my organs after I'm gone; may as well pass them on to somebody who does).
The other thing that made me smile (although I didn't realise it until I'd actually written it down), is that I still have the choice of donation. It may happen that my organs are deemed to be totally past it at the moment I'm ready to donate them - and that's fine. The point is that RA hasn't automatically negated my decision to try and help somebody else. The decision hasn't been made on my behalf, without me having a say-so. I now know that I (or more specifically my innards) can still be of value to society despite me being ill - and that feeling is priceless.
I wrote something about 18 months ago, where I said that I'm not angry that I got rheumatoid arthritis. I may have lied. Or else, what I said was true at the time, but isn't true now.
The last couple of weeks have been unsettled and unsettling, both at work and on a personal level. Whether it is due to that, or something else, my wrists have been flaring all over the place for the last couple of weeks. Gloves, ibuprofen and co-codamol have only had a limited effect.
Maybe I'm not angry at all, maybe I'm just fed up. Fed up with being in pain, fed of not being able to do everyday stuff like opening doors or making a cup of tea. I'm British; making a cup of tea is a social necessity! I'm fed up with taking drugs which don't seem to be having an effect, fed up of wondering if I'm going to be in pain of some sort for the rest of my life. I'm fed up of being snappy and irritable in the office.
(The exception to this is my colleague who couldn't understand why it hurt me when he grabbed a piece of paper from me. I quietly explained that I had arthritis; he continued babbling on at me, about how it couldn't have hurt, unless I got a paper cut. My manager explained it to him, in a louder voice; he was prattling away about the imaginary paper cut and how I probably liked it. He got told, in no uncertain terms, that he'd been told twice and if he wasn't going to pay attention, he doesn't get a third time).
Most of all, I'm fed up of the waves of self-pity I've been flooded with over the last fortnight. I'm fed up of stewing over the the things that were and weren't said when I was first diagnosed. I am so, so bored of feeling sorry for myself. Whilst it's quite true to say that I'm in pain and it's not fair - repeating this ad nauseam isn't going to serve any practical purpose. What's happened has happened. I thought I was past all this bull; seems I'm not.
So, in place of wallowing I've decided to start blogging again. I have all sorts of all sorts of thoughts swimming around about RA, about the way that doctors interact with patients, about me and the way I've reacted to things. Maybe writing them down will give them some kind of order and me some kind of life raft amongst the waves.
The following was written by the actor and director Samuel West for Tatler magazine, in July 1998 and has been posted here with his and their permission.
To Sesimbra, just outside Lisbon, for a month to work on Hornblower. Ioan
Gruffudd, a brilliant young Welsh actor, is playing our hero, I’m playing Major
Edrington, an aristocratic soldier, and Portugal is playing France.
Also in the cast are Antony Sher and Estelle Skornik, who plays Nicole in the
Renault ads. The latest one, ‘BOB!', has just started showing here – the
consensus among the crew is that the blue eyeshadow was a mistake, but they
wouldn’t chuck her out of bed for making crumbs.
I went online today and joined Ioan’s Internet fanclub; (15000 members and
counting; such is the pull of five minutes screentime in the last reel of
Titanic). I signed the guestbook of one of his three homepages while he sat
next to me, very shocked by all this attention.
Wednesday 17th June 1998
On set, I am baking slowly in two layers of red moleskin and a large horse.
I’ve had to learn to ride for this job on a beautiful chestnut with go-faster
ears, christened ‘601’ after the brand on his neck.
It is extremely surprising that I didn’t fall off today.
Thursday 18th
It is extremely unsurprising that I fell off today. Really slowly, and in full
view of eighty giggling extras. 601 was more amused than most; I got back on
and he sighed slightly.
I’ve had a sweet e-mail back from the owner of Ioan’s page apologising for his
English and sending greetings to Ioan and myself. He’s French-Canadian and his
English is, predictably, perfect.
Estelle Skornik is arriving tomorrow; the crew is very male, very straight and
very horny, and a lot of them are keeping themselves free lest they should be
favoured in the bar tonight.
Friday 19th
Estelle arrived and went straight to bed. She is as beautiful as the day, and
she has a boyfriend called Mark. Everyone’s rather depressed.
Saturday 20th
The cast have an oddly successful evening out, conversing in a mixture of
English, French and Welsh. Estelle is the only French actress I’ve ever met who
doesn’t smoke. She also doesn’t drink, and eats only boiled fish, steamed
vegetables and salad. Over herbal tea she tells me my smile has something of
Christopher Lambert about it, and for a brief moment I am the happiest man on
earth.
June 22nd - England v Romania
Ioan and Estelle have discussed their screen kiss: she says if you love the
other person it’s okay to use tongues. So no tongues.
June 23rd
In a lonely moment I turn to Baywatch reruns on telly and discover Pamela
Anderson’s charms are considerably reduced by Portuguese subtitles across her
medium close-ups.
Wednesday 24th
Estelle twisted her ankle jumping out of a window on set today. Apparently on
landing in terrible pain her first word was ‘Maman!’, and a dozen love-sick
swains ran forward shouting ‘NICOLE!’
We’re shooting this week on a stone bridge entirely constructed by the Art
Department. It doesn’t go anywhere useful - if it did, we’d be stuck on one
side when we blew it up, which we do next Tuesday. So instead it cuts across
one end of a long thin lake, and shot from the side, you can’t tell that it
isn’t a river. And there’s just enough of a current to play pooh sticks, which
is a relief.
26th June – England v Columbia
I found Kevin the make-up artist painting a St George’s cross on one of the
extra’s faces, and powdering him with as much care as if he were doing Ioan’s
eyeliner. Bless.
Before the game the hotel gave what it called, with admirable frankness, a Beer
Party; I bought the largest round of my life, 20 halves, for 2000 escudos
(about 6 quid). I don’t remember much about the evening, but I think we won.
27th June
Coals to Newcastle: when the special effects boys - they’re always boys - do
explosions, they fill big mortars with lumps of cork to make harmless rock.
We’re in the centre of the biggest cork-producing region in the world, and
we’ve brought our own. By lorry. Via Yalta.
Time between takes is spent under the cork trees with my tapestry. Everybody
tries hard to make PC comments about a man doing needlepoint, then Tony Sher
says ‘Well, I think it’s poofy’. Coming as it does from someone who dances at
the other end of the ballroom, this makes him very popular.
Tuesday June 30th - England v Argentina
My last day, and in every way the most memorable. First, the bridge didn’t
explode. This is normally a Good Thing, but in this case it meant a two hour
reset and an early release for the actors, who were to be driven back to the
hotel in plenty of time for tonight’s game.
That, at least, was the plan.
We got lost in the one-way system on the way
back, and had to cross the longest bridge in Europe (twice, 11 km in both
directions) to get back to where we started. I reached the bar eight seconds
before kick-off. Packing could wait.
And so, after a memorable 90 minutes, we went into the final period drama,
singing ourselves hoarse because nobody’s got any lines tomorrow, and as Batty
stepped up for the last penalty it looked like it would be the perfect ending
to the perfect month.…
