Organ donation

[Louise Pembroke]

I did the organ donation survey and found it a very positive experience and explored my thoughts and feelings about donation and transplantation which was wide rangeing.
It actually gave me an opportunity to discuss issues I've not discussed before, both positive and negative

[GarethB]

Louise,

From the time you contacted the organisers, how long did you wait before you participated?

[Louise Pembroke]

He contacted me pretty quickly and then made an appt to suit me.

I prefer qualitative research anyhow and it was very flexible and allowed me to look at many diverse issues.
Obviously I talked about my own transplants and my feelings towards the donors & families. I also considered promotion, education and the media. Personally, I support an opt-out system and I would like to see the sale of organs banned, with the underlying poverty addressed. There were so many issues I talked about, too much to list here, it would be an essay!
There is something I would like to highlight though.
I do feel [generally speaking] there is an intolerance of negative feelings in recipients. I know that when recipients of others organs have felt depressed they can sometimes be met with the response of, but you're so lucky to have got it attitude, and from health professionals. This implies that feeling depressed,wanting to give up or feeling that life on dialysis would not constitute a decent quality of life is 'wrong'. Then there have been the comparisons - theyou could be worse line of argument, both of which censor and dismiss very painful feelings. Now I've seen the opthalmic equivalent of this too, sheer horror when I've said, 'I'd rather die than be blind', being told that again, it is the 'wrong' attitude or told, 'you would adapt, there are talking books' [which makes me want to scream!].
If there's one thing I've learnt from self-harm/suicide work it's this - people need to be able to express the most negative feelings and for that to be acknowledged and not put down in order to have chance of negotiating those feelings.
I might write something further about this

[Matthew_]

I think you invalidate somebody's feelings by not accepting them. But I think a lot of people think it helps to try and cheer people up by 'showing' a more positive side. Or in many cases people just want to gloss over tricky or emotional subjects. So with KC, you get "Can they correct it?"..."Oh well that's OK then (what are you moaning about)" I suppose its human nature but it is so much more helpful to LISTEN. I was exactly the same with my wife's disability until I realised I didn't have to fix the problem or cheer her up, she needed someone to talk to.
On the donation front, I have had my own feelings challenged, because I have long been a volunteer donor but wsn't comfortable donating corneas for some some (looking back on it) bizarre reason. Now of course, they wouldn't want them and I could benefit in years down the line from somebody braver and more open minded than me...irony?

[GarethB]

Eyes and corneas in some cultures are considerd as the window to the soul.

Most other organsd once donated are out of sight, corneas people think are visible.

A basic test of most people knowledge of anatomy is bizare. i9 think if you surveyed the population as a hole and asked where the cornea was, they would probably think a corneal transplant mean replacing the whole eye ball!

[Matthew_]

Yeah, maybe that's it..windows on the soul. Thing is I don't really believe our physical bodies do anything but decay after death..so why be squeamish?

[Andrew MacLean]

In some cultures the value of an organ is calculated on the amount of blood it carries. Livers and Hearts are considered to be the most intimate and unique parts of the human being (I deliberately avoid the use of "human body" here).

For those cultures bits like the brain and the front of the eye would be considered of little instrinsic value to the person and donation of eye parts would be taken almost for granted.

In what we are pleased to call "modern western culture" we have lots of decontextualized bits of ancient lore that we force together in an ill fitting jigsaw, a bit like trying to assemble a picture from several different puzzles. I am afraid that the sentimental attachment people have to eye parts is an odd manifestation of this muddle.

The notion of the eye as the "window to the soul" is really not native to any culture, although the notion of the eye as the "mirror of the soul" is found in European thought as far back as Cicero 106 - 43 BC) Ut imago est animi voltus sic indices oculi (The face is a picture of the mind as the eyes are its interpreter).

The notion appears again in the English text "Regiment of Life" (1545). Here we find the idea that you can tell a person's thoughts by looking into his eyes. (for more on this see "Random House Dictionary of Popular Proverbs and Sayings" by Gregory Y. Titelman (Random House, New York, 1996))

Some writers think that the origin of the modern notion that the eye and the soul are associated in some direct or mystical way can be found in the New Testament. Certainly Jesus does say "The light of the body is the eye", Matthew 22: 6), but this leads on to a teaching about the dispensibility of the eye, not its indespensibility to the balance of body and soul. Further the deliberate reference is to the eye (physical organ) as the light of the (physical) body. The soul is not enlightened by the body!

All this may be a sigh that we are a community without any coherent culture. But then, I guess we already know that is the case. Maybe it is not a problem, but an opportunity.

Andrew

[Matthew_]

WOW! Andrew, you know a LOT of things!
It get weirder when people ask after the donator - "Whose eyes am I seeing through, what has already been seen through them?"
All I know now is that I would donate my corneas as well as the rest of my body, now that I know better. Thing is I am assuming but don't know for sure that my corneas would be useless. Am I right about this?

[GarethB]

Matthew,

Corneas are screened for desease including KC so even if we wanted to donate ours they would be rejected.

We can however donate them to medical science for further study.

After any form of donation receipt, we unfortunatly are not allowed to give blood which we have official notification withn the group.

When I applied for a medic alert bracelet due to the hazardous nature of my hibbies and the problem I was having with lenses I ticked the box for organ donation. The doctors letter that came with the bracelet stated that as I was an organ receipient I was no longer allowed to donate any part of my body. The only donation I could make was for medical research.

[Louise Pembroke]

I raised the issue of the eyes/window to the soul but thankyou Andrew, you are very learned indeed, appreciate your knowledge on that subject.

When I've had bad times I have sometimes wondered, what would my donors think of me, would they think I was a waste of space?

I remember a programme about the sale of organs and it really upset me, a Pakistani man selling his kidney in order to feed his family, then, he gave his cornea. His eye was obviously very disfigured and blind as a result and I watched with horror and anger thinking how the surgeon do it, how could the recipient take it, it's obscene. I don't agree with the sale of organs, I don't care how desperate the recipient is. I couldn't take a cornea knowing a live donor would be blind in that eye as a result and all because he was poor.

You're right Matthew, we tend to rush to fix or cheer up and sometimes we just to need to listen and take on board a persons feelings no matter how negative or 'wrong' they might seem to others.
I suspect it's not uncommon for recipients to experience a slump after the high of getting it, and then there is the long term uncertainty.
Most of the time I shelve it because I have to, I wouldn't be able to live otherwise, but on the occasions when I do feel scared I just want a friend to pass me a tissue and take my fears and views seriously.

I know we all draw the line at different points and I'm of the view none of those lines are 'right' or 'wrong'. If a person is paralysed from the neck down and needs assistance to breath, for some their lives would remain very worthwhile but for others they would want a physician assisted death. I believe both positions should be supported.
I also think it's unhelpful to do a downward negative comparison as in, at least you're not x or y because it's not about degree, it's about impact.
There are some people who wouldn't be able to cope with my mental health problems and might well prefer to die, I don't feel at all personally insulted or slurred by that. Just as a blind person should not see my stance that I would be rather be dead than blind as invalidating their lives. It's only wrong when we paste our personal positions onto everyone else.
I think we're not very good in this country regarding death and disability. The former we don't want to face, and with the latter we are supposed to be stoical and upbeat. We have to allow people to explore life and death issues, and the limits of their ability to cope. It's hard, granted, but then survival is hard.