Monday, February 04, 2008

I’ve been thinking a lot about religion today.

Various things have triggered it – there’s lots of talk about it on various (strong believers’) blogs talking about how their faith has got them through etc.

I am not religious. At all. As I think most people know. Not that I have anything against people being religious obviously, in fact I was at one point in my young teens a church server. I agreed to do it and ended up getting myself to and from the church on a Sunday (not being from a religious family). Thinking back to it I don’t think I got much out of it, not in the spiritual sense. But I liked the people and I liked helping out, and I did join in the prayers although never prayed of my own accord (unless I was really very scared).

Of course then like any well-balanced teen I swung from being involved in church duties to “there’s definitely nothing out there I know it for sure as why would such horrible things happen”. This was triggered predominantly by the death of a young friend of mine. And when I say young I mean young; he was just nine years old.
I like to think that by now, in my old age (ha) I have developed a slightly more balanced perspective on it. I am most definitely not religious, but I would no longer vehemently argue against people that there isn’t anything out there, for two reasons. Firstly I don’t consider myself to be knowledgeable enough (the world’s a pretty big place, let alone the universe) and secondly, I now realise there is no positive by trying to convince someone that their belief system is false. After all, I had belief systems that got me through my wait for transplant, it just so happens that they weren’t anything to do with God.

I had faith in people, and I blogged about it all on here. I have faith in people wanting to give, people wanting to help (not everyone I’m not that naive) but that someone would choose to do so and it would in turn help me. I had faith in the doctor’s care for me, and my family’s love for me. And it was things like that that got me through. So rocking someone else’s belief foundations can’t really be that helpful.

One of the things that has really got me thinking about what faith does to us is this blog here. I managed to get myself to have a look (I haven’t been able to as I find it hard as I will explain) and I am thrilled to say both mum and baby seem to be doing well at the moment. I urge you to pop on and send good wishes if you can.

The thing is, all of their decisions were made, not according to the doctors, not according to what’s best for each other or what would have the most likely good outcome, not even what they both desired most of all, it was made because they felt it was God’s will. Actually rereading that I suppose that is what they both desired most of all. I hesitated on talking about this incidentally as I by no means want to offend anyone but when I did look at Nate’s blog he seems to be very level headed and able to explain his feelings and beliefs well so hopefully if he reads this he will understand I am just thinking out loud rather than making disparaging remarks.

There is never a right path, but if it was me, in my head there was the clear safe option and for me it would have been a different choice. Perhaps that’s because I pondered on worst case scenario more (loss of both lives) and the possibility of having a child post transplant, but of course then we go into the topic of abortion and that’s really another blog. Point being doctors’ advice a lung function of no lower than 60% to have a child and so this cannot have been medically advisable. But then that must be where faith comes in. I have faith that I should listen to the doctors and listen to my heart (I’m quite strict on myself and decided at 16 when my lung function crossed the 60% boundary that I wouldn’t have children pre transplant as I wouldn’t be able to be the mother I wanted to be and the mother I felt they deserved) and they believe in God.

As I say it’s not a personal attack – if you read Nate’s blog they seem like a really lovely couple, and clearly have a massive support network of family which is fantastic. I am just talking to myself really to try to understand better, as I just can’t no matter how hard I try.

There was a philosopher called Descartes. Most people recognise him from his most famous quote “I think therefore I am”. He wrote some fantastic philosophies but unfortunately they had one key flaw; because he believed in god, the answer had to be that God was the cause and the root, they rhyme and the reason, which in turn made his philosophies convoluted and he ended up contradicting and confusing them more than once, and his arguments, which started off on solid focused tracks seemed to deviate and loop to ensure they came back to the answer he needed to find.

The one thing I know I will never get my head round is the belief that some religious people hold that your life cannot be good without a divine presence in it. That makes me a bit annoyed really but I think only because I have such a strong belief (ah even I am using that word) that you are the maker of your own destiny. Perhaps it’s because it makes me feel like I have control even at times when I don’t? If any of you have read Satre (Existentialism is a Humanism) you may know a bit more what I’m talking about. I don’t accept everything he says but I do agree with a lot of it.

I don’t think its depressing thinking you are the only one who can make life what it is – I think it’s liberating. Perhaps that’s why that’s the belief I choose to hold, after all I am a self-confessed control freak. I think personally if I felt I had undergone what I had as I was being punished for previous sin (as one Christian friend once told me) I’d go mad. Perhaps I need to not believe equally as much (and maybe even for the same reasons) as they need to believe.

This is a really really long waffle. I have been sitting here for about 20 minutes deciding whether to post it or whether it’s too risqué, but I think I’m just going to post it and see what happens. Chat away on the subject if you want (the world would be a boring place if everyone agreed with each other) but please be nice to me...and each other.


suzie said...

We all question Em and its good and healthy to do that, I try to live by the old 'Do unto others as you would have done to you' I don't think you can go far wrong with that. Getting into arguements about religion is futile because we all have our own personal beleifs and whatever works for us is right for us.


Anonymous said...

Having followed Nate and Tricia's story for some time there are a couple of points I'd like to look at a bit more...

"...all of their decisions were made, not according to the doctors, not according to what’s best for each other or what would have the most likely good outcome, not even what they both desired most of all, it was made because they felt it was God’s will."

I actually think that keeping their baby was 100% what they both wanted more than anything. And aborting their baby was the thing they didn't want more than anything. Not because of being afraid to go against God's will, but on a human level of Gwyneth being a very much wanted and loved baby.

"There is never a right path, but if it was me, in my head there was the clear safe option and for me it would have been a different choice. Perhaps that’s because I pondered on worst case scenario more (loss of both lives) and the possibility of having a child post transplant"

I actually think they faced the possible outcomes head-on and very painfully when they found out Tricia was pregnant. They were told very clearly that there was only a 50% chance of both mother and baby surviving and had long discussions with the various medical teams involved. I think (from what I've read) that they both faced some very difficult times coming to terms with what might potentially lay ahead for all 3 of them and that this continues to remain at the forefront of their minds.

Peronally I don't follow an organised religion as such but I do have faith in God and there being so much more to life than what we see around us. I would love to have such deep trust and faith in God as Nate and Tricia have because it must provide so much comfort and peace to be able to trust that whatever happens, you are safe and loved and all will be ok.

It's also worth pointing out that believing in God doesn't have to mean believing that he is controlling us and that we have no control over anything ourselves. Personally I think more along the lines of God being a presence who is always with me and who I will return to one day, not somoeone who is controlling me - if that makes sense? Likewise I don't think the majority of people who believe in God think he punishes people by making horrible things happen to them (though some do -like your lovely friend...charming!!)

As always, a very interesting debate and I'll watch the responses with interest! xxxxx

fairenuff said...

I agree with everything you say! I believe I make my life what it is. I am happier now than I have ever been, I have been through some pretty dark times. I believe I am happy now because I made a conscious decision to make the best of a situation in which some people would fold. And I believe it is to my credit that I am happy, my wonderful and precious kids are happy and that I have a good relationship with my partner. We work hard at it and we devote a lot of time to family strength. This all sounds a bit big headed but comes with a little warning that keeps popping up in my head, "The children may not agree with your feelings when they grow up!" All I can do is my best.

My partner is a Christian and is heavily involved in the church. Go figure! And it NEVER causes a problem with us which some people find hard to believe. I think of his church as a family who have welcomed us both with open arms, knowing I have no interest in faith.

I believe, very strongly with every part of my being, that my child's health problems and need for transplant has absolutely nothing to do with God, whether or not He exists. I believe she is incredibly unlucky to have been passed two very rare abnormal genes. How can you quote 'sins of the father'? If that's the case why dont both of my children need a transplant? Why is one being punished and not the other. Besides, apart from the fact that my baby has to suffer (which I HATE HATE HATE) it has brought richness to our lives. We have gained wonderful friends and a much better outlook on life, trying to enjoy every moment we have and not worry about silly things like, for example, being stuck in traffic. If we are late, we are late!

Ok this is a long waffle (I can do it too! LOL) but basically I do not believe in God but I respect any person's belief if it doesnt hurt anyone. That's not to say it cant affect them, our household is influenced and affected by Christianity but it isnt hurting us. If anyone ever suggested that my daughter's suffering was caused by God or the devil then a big debate would be started and it might get ugly. What sort of a fair God would let my child suffer and allow evil in the world because Adam and Eve went against his wishes? I cant reconcile that with what my heart believes should be right.

Please remember, at the end of my little speech, that my partner is a Christian and I have room in my heart for anyone, regardless of faith! This is not a Christian bashing session, just my thoughts and feeling on God in direct relation to my personal faith of things other than God and of having a sick child.

Anonymous said...

I went to Sunday school every week for years (my parents liked to have some 'us' time once in a while). Inevitably, I think, I grew up feeling Christian. At around 5 years old, an adult helped me to pray to God to ask him into my heart. That kind of stuff is bound to have a lasting effect of sorts!
As I grew up I got a reality check and I now consider myself a 'fairweather' Christian. I don't go to Church. I 'like' to believe in God but I really am on the fence with it all.
I don't pray. Unless it's urgent.
I prayed for myself and my family when I had cancer. I only ever prayed for the strength to face it and get through it, never for a cure. Praying for me was very theraputic, kind of like having an imaginary counsellor.
I envy true Christians in a way. To see everything, good and bad, as God's way must be a key to happiness and acceptance.
I prayed for you Emily, and everyone I knew of wcf who was struggling to breathe and waiting for transplants. One can feel pretty useless when others are suffering, but praying made me feel I was maybe, possibly, helping in some tiny way. Who knows?

A guy I work with truly belives his house sale/purchase was all due to his praying about it. That, to me, is so deluded. I would be grateful for shelter, I wouldn't expect God to give a damn if I were in a two bed terraced or three bed semi!!

Audrey xx

Fi said...

Em, your sentiments echo mine, and I thought about writing on the subject myself but could never have worded it so rationally. I do read Nathans blog, but I find it hard also as I could never have put myself, my husband or my baby in that position. I also find the whole 'pray for us' debate a difficult one; I think I'll keep my opinions to myself.

Well done on broaching the subject, and you just hang onto your own style of belief - it's got you this far!
much love

Tinypoppet said...

Audrey - you bring up a very key point about praying for me when I was so poorly. I had people around the world praying for me, and that made me feel honoured and priviledged. Just as I will cross my fingers and focus really hard on the person in some vain attempt to send positive vibes - it showed people cared enough to actively try and do something when they felt powerless - to pray.

Whatever I do (and don't believe) the sentiment behind the action should never be brushed aside and I am very grateful for everyone's thoughts, spiritual or not. I know they meant an awful lot to my family too to know everyone was rooting for us. So thank you for bringing that up. x

Anonymous said...

tI have just read this article and actually I don't necessarily take away the religious side of it as being the most controversial aspect of it. Yes they are deeply religious and yes they have certainly actively sought prayers for their various travails, but they have also, in general, appeared to live by the 'God helps those who help themselves' slogan.

HOWEVER I do think that the rather controversial decision was to try for a child - which they state they had been doing for some time previously, although not when they actually found out she was pregnant (sorry to be picky but 'we' cannot, by definition, be pregnant, although of course 'we' can be expecting a baby). They do not say that they were actively taking precautions to ensure that she could not be pregnant.

I have no problem in understanding why they, at that point, refused an abortion - after all that is a huge issue of personal choice. But I have to question why they were putting both her health and any potential childs health in such jeopardy by considering pregnancy at all.

Yes NICU's do a wonderful job in saving very premature babies, but there is no way they can tell if such a baby is severely brain damaged and what possible quality of life they will have. Many babies end up there completely unexpectedly, but in the case of an unwell mother I am sure the chances are exponentially greater.

I am sure that some people will say that 'Gods will shall prevail' but my religious beliefs (such as they are) do not include the fact that God would deliberately cause undue pain and suffering (and I don't think anyone would imagine that a stay in NICU, even with the best possible outcome, is a walk in the park) and so that (probable) outcome is why the initial decision (in my opinion) should have been questioned.

Having recently had a kidney tx I know that I will never have children and there are two reasons - one, my own health (having been given such a wonderful gift I would never want to squander it), and two because my cause of renal failure has never been determined (therefore genetic links have not been ruled out) and I would never risk a child having to go through pain and suffering for my own selfish needs (of having a child).

Yes I am sure this couple will love and care for the child, and I certainly hope that she will have a normal life, but can one justify love for behaving as one pleases?

Anonymous said...

I think you summed it up when you said "faith" Emily. Some people get faith from God, others from family, others friends.......each to their own, respect everyone else's opinions even if you don't agree witht hem. Equally don't try and force your beliefs on others.

Vive la difference!

CFHusband said...

Thanks for blogging about us and pointing people our way!

I really appreciate reading your thoughts, as well as the above comments. I respect your opinions and beliefs, and appreciate reading about CFers/TXers who are living life like you are.

I hold many of the same views as you (as you've explained in this post), including some of what you have to say about religion, as I don't consider myself to be a religious person at all.

Thanks again!


Jac said...

I don't think anyone can say whether God really exists, although at times of crisis its certainly a comforting thought that someone might be there, guiding you through it.

I think more important however, is the use of the word Faith - this means something different to everyone. Whether its faith in God, faith in your friends and family, faith in mankind itself - we all need something, or someone to get us through the dark times, and who are we to argue with that?

I don't think there is a definite right or a wrong in this debate - there is only what is 'right' for that particular person.


Anonymous said...

Never be afraid to voice your opinion. People of religion invariably voice their's and that is fine.
I am not regligious at all but I feel I am somewhat spiritual - I don't know what's out there and although I would like to believe I will see those I have lost again. There is no proof.
I also envy people with strong faith - when my mother-in-law died she was certain she was going to Jesus and passed away extremely peacefully.
Wouldn't it be great to be so sure of something.
Very interesting reading and once again never be afraid to voice your opinions and feelings - if people are offended that is their problem
Lindy x

Anonymous said...

Emily, when I was in the hospital for 60 days after my brain surgery, it was nice to know I had lots of people praying for me.

Love, Randall

Anonymous said...

I think this is a very interesting debate, good to know it can play out in a non-jibey, overinflated or aggressive way when removed from the world of journalism!

When Emily's health was getting worse, I was of the age where I was very angry- not at anyone in particular, just the general randomness of the universe, and having always been very non-religious, I began to be more and more irked by any mention of a wondrous, omnipotent and loving 'God'. So much of religion fails to add up, but especially this notion of a big powerful guy sitting on the sidelines with his popcorn and WATCHING. When Em has been very ill, others telling me they are praying for me leaves me a bit numb, I know it is well meant but it's like they're speaking a different language, it means little to my theories of randomness, and my knowledge of the skill and dedication of the doctors, whom I KNOW deserve far more credit than any spiritual figurehead in this case.

I am always interested in other people's views and find others' faiths (when used positively) a wonderful thing, but I too have been bothered in the past by the Christian notion (and it is Christians in my experience) that those of us who dont chatter away to this spectator God are missing something.

After the funeral of a friend of mine when I was about 17, another time in my life where God's 'great plan' appeared seemed especially redundant, a friend's Catholic mother said in passing how awful it must be to have no faith at a time like this. It really stuck with me, and I pose this question: How can it not be an awful revelation to someone who builds their faith on a good, just God that young people die for no just reason? Maybe I'm cynical but only from experience.

In light of Em's transplant, we must remember that wonderful things do happen, but it is us and other people's kind natures that can make them happen. Praying time could also be spent giving blood, volunteering or just seeing what you can do to improve things around you. Yes, the waffling is a family condition ;)

Anonymous said...

It's funny reading some of these responses because they sum up in so many ways the beliefs that I hold, whilst arguing for exactly the opposite.

I do believe in a loving and caring God, a God who makes amazing things happen and who watches over us all.

I don't believe that it is He that causes everything that happens in the world, good or bad, or that he spitefully cuts down some in their prime whilst allowing others to live on in apparent hostility and hatefulness.

More than anything, I don't believe in a "spectator God" - I believe He is here among us and helping those who need Him through the tough times just as much as He is helping them enjoy the good.

I believe my God resides in the people all around us - those people who make life bearable when it seems to be getting too much; that one person who can turn the course of a day around, or make you see things in a different light. He is there in the people who are there for us when we need them and know just what to say.

Whatever way you look at it, that's Faith. Some people call it Faith in others, I call it Faith in God. Whatever works to get you through is what Faith is all about.

Anonymous said...


You'd really enjoy reading Carl Sagan's The Demon-Haunted World, most of which is about the differences between faith, pseudo-science and empirically- evidenced science and reason, Carl being an advocate of the latter two. A modern entertaining read that is lighter than the Classics and treats faith with respect in the way that e.g. Richard Dawkins does not.

I think if anyone who believes in the supernatural takes offence at any reasonable and intelligent querying of their faith they've got it all wrong. We should be grateful in this dumbed-down society that people consider life important enough to ponder human philosophy and how it shapes people's lives. There lies a true humanist, or humanitarian in my view.

There's nothing wrong in such delicate debate so long as there is respect - but not so much that aetheists or agnostics should be overly deferential or apologetic. After all, if the shepherds don't make attempts to herd stray sheep with some good answers to questions, they aren't very good shepherds are they? If people wish to be subservient to a certain degree to a belief system, that is their choice. In this area we could go around in circles until the cows come home. There's no proof either way. Even uber-rationalist Carl Sagan said that a true aetheist must be overly-arrogant and wrong, because there is no proof there isn't a conscious creator.

I too find the faith aspect of the more important life decisions interesting, and sometimes worrying. However, much of our literature and history tells us that being human, sometimes the emotional or faith response is the right one, not the rational one we think we ought to take. I use the word rational in the philosophical sense, not inferring the rational argument holds greater sway.

At the end of the day, each to his own (well, if you are lucky to live in the democratic territories anyway). We'll all know one day (hopefully a very long time away in your case). It's good to know you've got a decent internal battery and a recharging unit from the supportive people around you :). I for one long ago left behind the comforting blanket of faith and accepted the world I can see. There are times faith would have been a good support but so long as I feel my understanding of life is true for me, that's more important.

Bill H x

Anonymous said...

That was a really well written piece Em, and I will not be able to write anything like that! So please forgive my waffle!!!
Hmmm, religion………some of the most arrogant, jumped up people I have met have been Christians. However, some of the most amazingly kind, loving supportive people have been Christians who put me to shame with how incredible they are. But a lot of this is just human nature, you get good people, bad people. I don’t think religion plays a part.
What I do find hard is the use of the term ‘God’s Will’.
When my brother died aged 9 from cancer, it was ‘God’s Will’ I was told my well meaning people. When my son was 2 weeks old and was diagnosed through newborn screening that he had cf, it was again ‘God’s Will’.
We were also told on at least 5 separate occasions that the reason my son had cf was because his forefathers, as it says in the bible, committed a sin and our baby was paying for that sin.
Hmmmmmmm……………………………… I struggle with this. A lot. I
I don’t consider myself religious. I have faith though. Faith in people treating people equally, in being a good person, in helping one another.
Ok, bed and bath calls for the little people in this house…………no more time for deep thoughts!
Sasha x

Anonymous said...

hi em

this is really interesting and i have been thinking about it all day.

this is what i have come up with, i don't see God as an all knowing figure who has a plan or who decides if some people will be ill or not or if people will die young or not, i see God and praying to God as a force for good, a force which gives us courage to face situations when all around us seems to be nothing but despair.

i find it troubling when people in general pray for 'things', for example when my brother was waiting for a transplant, which never came, i wasnt suddenly angry at a God like figure, because i don't think it says anywhere in any religious doctrine that God provides us with whatever we desire. In my darkest moments looking back i suppose preying to 'God' gave me some kind of strength. I felt that this force for good for love was with me in those dark hours and with my brother also, the prayer 'footprints' probably explains this better. i suppose i have to accept as well that at the point where i was losing my brother it was comforting to think of an afterlife and of love surving into eternity.

having said that i don't believe this strength comes simply through prayer or indeed religion and most importantly - i think everyone finds this strength in their own way, through faith in humanity, meditation, through friendships, relationships etc and surprisingly after all this i wouldnt consider myself to be strictly christian either, ultimately i think i believe in faith, hope, courage and love and i think that trumps anything that cf is going to chuck at me!


Anonymous said...

Emily, as always you have us all soul-searching. Like most of us, I respect people's religious beliefs; my only objection is to those who try to impose their beliefs on others. Religion has been in the past, and continues to be today, used to intimidate and threaten; this can't be right.

I do have faith - faith in what is called "free will". I believe this means much more than is commonly understood. To me it means we have incredible power over our own destiny; we simply need to have an unquestioning, childlike belief in this power and to use it only for bringing good health, happiness, safety, prosperity, love and goodwill to ourselves and others. I do also believe in God - not as an elderly man with a white beard (why on earth should God be male; surely gender is something purely human to allow us to share in the joys of procreation;here again, religions over the centuries have done a lot to upset the natural balance between male and female which is so important in keeping this world a peaceful place). I imagine God to be a universal energy or force that we can all tap into. But who knows? We can all only guess and wait and see.......

Good luck to everyone.