Intense Discussino Regarding Genetics Not for those with little self esteem

thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>paranoia</b></i>


<b>thelizardqueen</b> You dont look like one to be underestimated, I wouldnt put it past you as to your capability to interpret what I had said. Maybe just a couple of read throughs? I notice you post alot in response to board members, I myself enjoy some of your posts very much so. <b><i>Your response was greatly appreciated if only to interject your emotion on the one phrase.</i></b></end quote></div>



I suddenly feel like I've been double-dog dared. As I'm sure some of you may, or may not know, I always accept a challenge, so here goes:

You made me think quite a bit about your statement of how your existance (or rather ours as a whole in the world) was meaningless, and that you thought us guilty of self preservation. I can't even count how many times I've asked myself whether it would have been easier to die as a child, and to not have experienced life with it's miracles and hardships, ups and downs. To know nothing more, then maybe a few memories of a younger childhood. Because lets face it, if there had been no treatment for CF, I would have been long and gone before my 2nd birthday, if that. Possibly with no memories at all. Or will it be easier to live life out, to continue day in and day out of keeping my body alive, doing all of my treatments, taking all my pills, taking all preventatives possible to extend my life, only to die. Sure, I will have memories, I will have experienced life - both hardships and good times, but in the end death who I've been running from all my life will have caught up. But to think about this, is basically asking that old question of "what is the point of living?" And that's not even a question I can answer myself, or anyone for that matter. If we find an answer to this question, then please also let me know what the meaning of life is. Is it self preservation that motivates us? Yes, I think it is. Since the beginning of time humans have had to fight their way to the top. Its the only thing we know. Like you said - society, religion, the law, etc all frown upon suicide. The urge to survive has been engrained in all of us. I don't try to understand why, I don't even need to know the answer as to why. This is just how things are.

As for genetically engineering your child to be free from defects, you are right - that would be playing god. You say yourself that if it weren't for technology today, then those who are not the fittest will fall aside. If there was no technology, then you would not be able to make your "super" child. You would not be able to decide who he/she should be in life, whether they will be the fittest and survive, or if they will fall into the category of being weak. It seems that you question technology when it doesn't benefit you, like making you live a long life full of treatments and preservation only to die. But when it comes to your benefits of creating a child free of genetic mutations you embrace technology. You can't have it both ways.

And as for the meaning of life, no one will ever be able to answer that for you if you're looking for one single answer to everyone's question. There is no one meaning of life I don't think. I think it all depends on the individual. We all have our own definitions of life, and what it is we want to get from it, and what is given to us. Is the purpose of life to procreate? I don't think so, but then again its all based on every individual. If the sole purpose of living is to have babies, then I guess a lot of people aren't getting it, because there are a lot of people out there who do not have kids, nor do they want any, and their life is meaningful to them regardless of kids.

What is the meaning of life? I have no clue. What I do know, is that I believe that things happen for a reason, that you make decisions in life and you enjoy the fruits of life. That there is some higher power that we are not to understand or question, but rather just let it be. If something isn't meant to happen, then it will not happen. If I'm not meant to have kids in the grand scheme of things, then I won't. If I'm meant to die young regardless of what treatments there are out there to save me, then that's life. Because we all know that medicine is not 100% accurate. You say that technology preserves us, but in reality, there are people dieing out there with the benefits of modern science and medicine. Again, it all has to do with your genes. I had a cousin who had CF. I also had friends who had it. We were all born with the same gene's, same condition. We all recieved the same care, the same treatments, the same technology, but yet here I am today alive and healthy for the most part, and they are long and gone. Call me surviving and my friends not - survival of the fittest. I survived even though I have a genetic condition that should have killed me years ago. Not necessarily because of technology and treatments, but because of my own genetic makeup as well. So in some small minute way your logic of only the fit survive, and those with genetic conditions would die if it weren't for technology is flawed.

Now again like I said, your whole question is just so complex for me, and for all I know, I've gone off on a tangent about absolutly nothing to do with your question, but this is just what I've taken from it.
 

S

New member
i think the meaning of life is to not worry what the meaning of life is and to just enjoy the short time we have in this world.
 

thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katyf13</b></i>

Oh and Mike and I were just discussing if I should be tested as a carrier or not. He wonders if having a baby with cf would be so wrong. I mean it makes sense to have a healthy baby, but at the same time, Mike's life has been extraordinary. Who am I to decide the fate of those who will join us some day?

Controversial indeed! ;-)</end quote></div>

You've brought up an interesting point Katy. Cory has been tested to see if he's a carrier or not. We haven't gotten the results back yet, but we've talked about whether we will still go ahead and try for kids naturally even if he is a carrier. Carrier testing is not 100% accurate, so regardless of how much we try to play god, or try to genetically engineer our kids, nothing is 100% foolproof. For all we know, he could turn out to not be a carrier, and then oops - 9 months later, and our baby has a very rare genetic mutation of CF that would never have been found on the test. There are different mutations showing up all the time despite carrier testing.

What makes it such a bad thing to have a baby with CF? I have CF and I've lived a great and long life so far. If my mother had choose to terminate her pregnancy on the decision of "what if...", then I would not have experienced life, I would not have become the woman I am today. I've lived longer then some people who are healthy and die of cancer or a car accident. Who's to say that if I have a baby with CF they will die young? For all I or science knows, my kids could live to be old, despite CF. Sure CF sucks, sure its hard, and some of us wouldn't wish it on our worst enemies, but it has its good side. CF has made me the woman I am today. I don't think I would be who I am without it. I'm older and mature for my years. I'm sympathetic to all people, because I know there are worse things out there then CF, I choose the important things in life to deal with, and could care less about the small annoyances of life.

Who am I or Cory to play god and decide?

God, my brain hurts now...
 

anonymous

New member
Paranoia , I think You should not read as often as

you masterbate , you must be doing a lot of both.


Do you even know what your trying to say?
 

coltsfan715

New member
I haven't read all of the posts and replies on this thread, but I did read the initial post and the responses up until paranoia posted for the second time.

I have thought of many of these things at different times throughout my life.

I have asked my parents if they would have chosen to have me had they known what I would go through with having CF and ultimately CF related diabetes. I got a mixed response. The answer was initially no we wouldn't have had you at the time, but we would have missed out. Had we known who you would become we would have had you kind of response. I wasn't offended or hurt and I didn't feel like they were saying my life was meaningless, but more that they wouldn't have wanted to put a child through what comes along with CF.

I have also thought of the "Natural Selection" issue, and also the Trojans because I believe I have read and studied that they used to put ill children out and basically just let them die because they were "bringing down the race." On that I think yes physically people with any physically limiting disorder "bring down a race/species" in physical terms. However, I think that the potential affect of people, with any disorder, have on others is immeasurable. Yes I would most likely be dead if I had been born 100 yrs ago or more (even 50 yrs ago maybe), but like many have mentioned if there are advances and people out there to help me maintain my body and live even just a little bit longer - why not try and who is to say I am not worth that. To me I am and to the people I know and love I am worth it. To me it is not messing with nature too much because nature allowed someone to be born who was intelligent enough to come up with the treatments I need, so apparently nature (or God) wanted me to have those treatments. I have said to my mother many times when she has commented on my not giving up on life, to me if there is even one thing in my day that makes me smile and makes my life enjoyable then life is still worth living. When I no longer have a reason to live I will probably stop caring if I do my meds and if I am staying healthy, but I still have a reason to live. I still have things to do (and no procreate is not one of them). People preserve each other and in preserving each other we give each other the chance to be inspired, touched and amazed at the human race and also to action. Many of the advancements that have been made today probably wouldn't have occurred if everyone with a terminal/genetic/physical/mental disability had just laid down and died.

As for your points:
1. I personally do not want to have children. I did at one point, but have been told that it would be in my best interest to not have kids. Not only that but I have thought it through and talked it over with my fiancé and we/I don't want to pass the CF gene on. I didn't always feel that way - I once thought it was no one's place to tell me I couldn't have kids because I have CF, but I couldn't forgive myself if I put someone else through the troubles of CF just because I wanted a kid to carry on my genes.

2. Genetic engineering is something I don't really give a hoot about other than I don't think genetic copies of animals or people need to be made. I am all for say changing a defective gene to make a baby not have CF if it would have it - but as for the hair and eyes and whatever else who cares. Talk about taking the surprise out of having a kid. If you could make your kid to be exactly what you wanted it would be like knowing what you were getting for Christmas in July but still having to wait to open the presents - what would be the fun in going through the pregnancy and all the anticipation if you already knew what to expect. (just my opinion on that)

3. Purpose of life ... I have always wondered that and know nothing of it. I just truly hope there is a purpose because that is what I have been telling myself all my life that I am going through everything I deal with for a reason. I personally feel that when I do complete whatever it is I am supposed to do here that then and only then I will die. Who knows we'll see - Hopefully when we all die we are finally told what our purpose was ... if we haven't figured it out by then. As for love - it is a wonderful thing and it can at times make life worth living. I know there are many times I have wished I could crawl in a hole somewhere and die, then I think of my parents, my fiancé, my family and friends all of whom I love and I think I couldn't handle not seeing these people again or even leaving them here without a fight. So I pick myself up and carry on.

As for the comment on suicides, it is a little unnerving and I hope you are not truly considering that as an option. Also on that note, I think for those in a position where death is coming and the only direction to go from where they are in down they should have the decision as to how they want to end their life. It is not for me and I would be thoroughly upset if anyone I was close to chose that route, but who am I to tell someone how to live/die.

And to add I am so glad you didn't say you were going to move to FL and go on a killing spree to get the death penalty. Whew!

I know that was a bit long winded, but I wanted to reply.

Lindsey
 

anonymous

New member
First I would like to show my appreciation for Lilith, Anon, Katyf13, mockingbird, S, thelizardqueen.

Lilith, you had identified similar contemplation in regards to some of my topics, I guess possibly we all think about similar things. I suppose it had taken the best of me and had become emotional in a sense on my own behalf. I might have fallen subject to my own judgemental behavior....

Anon, wow, good points, i would love to continue expressing my logic but I think I can take out of this more than I have put into it. By reading your post along with others I am capable to better assess various individuals take on life. Denke

Katyf13, I think I do need a hug. Life is indeed controversial. Ahh life

Mockingbird, I appreciate you asking im not very religious myself. You may share your opinion if you see fit. But in the attempt of sharing several points of view which i find necessary.

thelizardqueen, Wow, I guess the indirect attempt at getting a response from you worked out fine then haha. I was astonished by the technology statement you caught me with my foot in my mouth. I think I laughed myself into coma. Dont worry you didnt go off on a tangent. It was most insightful.

BTW who do you guys go to, to obtain a genetic screening? Im just curious about my own genetic makeup simply because this disease is not in my family line.
 

anonymous

New member
Thanks Lindsey that was very meaningful, gives me alot to think about, perspective is what I look for and hearing everyones response definitely helps me cope.

Troy
 

anonymous

New member
<div class="FTQUOTE"><begin quote>Paranoia , I think You should not read as often as

you masterbate , you must be doing a lot of both.


Do you even know what your trying to say?</end quote></div>

I suppose you had a bad day as well? Good to know
 

Lilith

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Lilith, you had identified similar contemplation in regards to some of my topics, I guess possibly we all think about similar things. I suppose it had taken the best of me and had become emotional in a sense on my own behalf. I might have fallen subject to my own judgemental behavior....</end quote></div>

Hey, don't sweat it. You aren't the first to ponder endlessly about these things, and I'm sure you won't be the last. But its times like those that I just turn up the bass on the radio, lay back with a glass of wine and read a good book. Gets your mind off of things very quickly. If you're in a rut (which I assume is the reason for your post), I hope you start to feel better soon!
 

Mockingbird

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Mockingbird, I appreciate you asking im not very religious myself. You may share your opinion if you see fit. But in the attempt of sharing several points of view which i find necessary.</end quote></div>


I do not wish to turn your thread into a debate about religion, so I will provide a link to another thread which I posted earlier. <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=19&threadid=9065&enterthread=y">http://forums.cysticfibrosis.c...did=9065&enterthread=y</a>

In truth, I originally wrote it for those who already have faith, so they might be encouraged, but perhaps you may find it interesting and relevant. I do not see cystic fibrosis or Ectodermal Dysplasia or anything else as a deterioration to the human race, but as a blessing; not as a detriment to be cast down, but as our salvation, to be lifted up.

At any rate, I hope you can see what I am trying to say.
 

littledebbie

New member
*Sniff, Sniff* I'm so proud of the rational polite conversation happening here (minus a few peanuts in the gallery).<br><br> Troy I have to say I have pondered similiar thoughts myself though I don't think to quite the level you have obviously taken it to. i tend to view technology medicines etc. as pieces and stages of the human races progression...I am in a sense the challenge to the human race to stretch their brains, research more, learn more, and not become complacent. Think of all of the things that have been accidentally discovered in the search for extending lives. Think of the odd genetic twists that makes some of us unaffeted by contagious virus'. <br><br>I think there is very little ryhme or reason for our lives that we can see as we are currently standing in the middle of our age. Nor, do I think we will Know the meaning of our live. I will not have children, and yet I carry on...imagine that..he he he. Why, because I like sunsets and music, and my family and rain drops on roses and whiskers on kittens...sorry. where was I? Oh yes, I like life. yep, addicted to it have been for years. I think i am supposed to enjoy what I can and hopefuly not screw up anyone elses life here and hopefully give back a little to the society which has supported me. <br><br>
Genetic engineering, hmm slippery slope that makes me want to go watch an X-Men movie. I think parents should be able to know if their child will have CF etc. I do not think we should be able to order up a boy or girl. So it's in the hands of mankind.....that is not a reassuring thought to me but who knows we may yet be surprised.<br><br>All in all though your post brought up some interesting conversation, thanks for that. If I got off topic or didnt quite hit on your point sorry about that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

janjoe

New member
to the anon who brought up masterbation, would you say that if you were sat face to face with the person you aimed it at? this is a legitimate question. i have to say i doubt you would . people don't talk like that in polite conversation. not the people i know anyway.
 

anonymous

New member
Im glad to hear that alot of the individuals have similar contemplations about life and these struggles we all seem to face. I probably wont be returning here very often, I am just happy that you guys had shared with me. I dont normally get on the internet much unless I read news. I appreciate all that has transpired. Thank you
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thelizardqueen</b></i>

This honestly sounded too complex for me to understand....aside from the "I would love to genetically engineer my child to be free from defects"...that riled me a bit.</end quote></div>

Me to Liz, that bit definitely stood out. Didn't like that bit at all!

Charlotte<img src="i/expressions/face-icon-small-disgusted.gif" border="0">
 
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