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Living with cystic fibrosis
- Thread starter TCNJcystic
- Start date
I realize that my son who is only 3 1/1 years old has a good chance to live a full life and that is my goal. I also realize that CF is a progressive disease and eventually will cause him some struggles if not death at some point, maybe sooner, maybe later. My husband and I have not only discussed this point once, but many times. I don't think it would be healthy not to.
I also realize that the people that are older than my son have lived with the disease from a stage in medicine different than his. I understand that. I understand that topic of death comes up and truly feel it is something that is a reality.
I just hope that my son will enjoy his life, live it to it's fullest as many of you do. I agree with Steve's post. Feel that his post and the way he lives life is positive. I hope that my son will take this approach as well.
Mom to 3 1/2 yr old w/cf
I also realize that the people that are older than my son have lived with the disease from a stage in medicine different than his. I understand that. I understand that topic of death comes up and truly feel it is something that is a reality.
I just hope that my son will enjoy his life, live it to it's fullest as many of you do. I agree with Steve's post. Feel that his post and the way he lives life is positive. I hope that my son will take this approach as well.
Mom to 3 1/2 yr old w/cf
It was very relevant. My point was that it would be easier for me (someone who can barely skate), to try and teach Downs Syndrome kids how to play hockey and score goals (something I can't do, meaning from my previous experiences of working with them, I have found them to get frustrated easily when things don't go their way, and being that I am in Florida, not many people, especially Downs patients who might not have all the money to support such a niche hobby, not many people are adept hockey players/skaters here) than it would be to try and get someone to become aware of their massive hypocrisy. I could have used any example, but I can assure you, there was no negativity associated with Downs Syndrome patients.
thelizardqueen
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Lizard
He didn't tell anyone how to feel. Why are you accusing him of that. NO reason to lock it. Geez. LIke you think you should say your say and then it should be locked so no one else can.
Power to Steve. He is right on.</end quote></div>
I don't think I should have my say and no one should at all. I just figure this is going to turn into one of those arguements that we all get into and everyone starts to take sides and then it snowballs. I just figured we should save all that. By all means keep the thread going. Just stating my opinion. Carry on.
Lizard
He didn't tell anyone how to feel. Why are you accusing him of that. NO reason to lock it. Geez. LIke you think you should say your say and then it should be locked so no one else can.
Power to Steve. He is right on.</end quote></div>
I don't think I should have my say and no one should at all. I just figure this is going to turn into one of those arguements that we all get into and everyone starts to take sides and then it snowballs. I just figured we should save all that. By all means keep the thread going. Just stating my opinion. Carry on.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TCNJcystic</b></i>
Most of these people don't worry about the proverbial "tomorrow," and I'm asking, "Why should cfers?"
We, cfers and non cfers, simply don't get enough time on this planet to really, really understand how amazing it is to simply be alive. We take the smell of the air on a given day for granted. We don't see how amazing it is when a child laughs, or when friends sign up for the Great Strides walk behind your back. We don't often enough sit back and say, "holy *****. this life thing is absolutely unbelievable."
When it comes down to it, the life of anyone, cfer or non, shouldn't be spent worrying about death or even about trying to make that April 15th deadline, it should be spent as happily as it possibly can be, in celebration of life rather than fear of death.<div class="FTQUOTE"><begin quote>
Okay, Steve, I understand that you don't wish to offend anyone. I'm not offended, and I see your point. But you speak as though everyone who talks about death fears it. I won't speak for everyone, but I will say this for myself...
I personally don't fear death.
I'm not trying to be an ass, either, by saing that. Honestly, I do not worry about dying. I talk about it because its a topic that interests me, as morbid as that may sound. Death is an interesting thing, because it brings so many questions to the plate. For me, death isn't bad. It's just another part of life, and I talk about it as such. I don't take life for granted just because I talk about death, either. I enjoy every day I have, and I do stop and sniff the roses every so often.
I think death does scare people on this forum, though, especially new parents of CFers who don't yet grasp the whole picture yet, hence, it is discussed. And people on here who are veterans, who point out the fact that death is coming, is because a lot of people simply ignore it, or don't think about it because is frightens them. But ignoring it is obviously not going to make it go away, and some people seem to be in denial when it comes to that fact.
Actually, aside from this thread, I really haven't seen any heavy discussions about death recently...
Most of these people don't worry about the proverbial "tomorrow," and I'm asking, "Why should cfers?"
We, cfers and non cfers, simply don't get enough time on this planet to really, really understand how amazing it is to simply be alive. We take the smell of the air on a given day for granted. We don't see how amazing it is when a child laughs, or when friends sign up for the Great Strides walk behind your back. We don't often enough sit back and say, "holy *****. this life thing is absolutely unbelievable."
When it comes down to it, the life of anyone, cfer or non, shouldn't be spent worrying about death or even about trying to make that April 15th deadline, it should be spent as happily as it possibly can be, in celebration of life rather than fear of death.<div class="FTQUOTE"><begin quote>
Okay, Steve, I understand that you don't wish to offend anyone. I'm not offended, and I see your point. But you speak as though everyone who talks about death fears it. I won't speak for everyone, but I will say this for myself...
I personally don't fear death.
I'm not trying to be an ass, either, by saing that. Honestly, I do not worry about dying. I talk about it because its a topic that interests me, as morbid as that may sound. Death is an interesting thing, because it brings so many questions to the plate. For me, death isn't bad. It's just another part of life, and I talk about it as such. I don't take life for granted just because I talk about death, either. I enjoy every day I have, and I do stop and sniff the roses every so often.
I think death does scare people on this forum, though, especially new parents of CFers who don't yet grasp the whole picture yet, hence, it is discussed. And people on here who are veterans, who point out the fact that death is coming, is because a lot of people simply ignore it, or don't think about it because is frightens them. But ignoring it is obviously not going to make it go away, and some people seem to be in denial when it comes to that fact.
Actually, aside from this thread, I really haven't seen any heavy discussions about death recently...
littledebbie
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>.
Julie, thanks for understanding the positive/non confrontational nature of my original post. I agree that as long as this topic stays positive in nature, and more people like Jem can share their stories of life with us, then there is no reason this thread should stay locked.
I'm not one for arguing.</end quote></div>
<br>
LOL...so only positive remarks are welcome? Negative remarks will lead to locking?<br>
More people like Jem should share..but what others are not welcome? Please - this is the internet.
<br>
Editing to say i'm not trying to be smart or start anything that really did just make me chuckle <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
Also I would like to say I agree with... i believe it was... Lilith for me death is just part of life and I actually think there is an up side to being so aware of our impending doom - which is that I do appreciaet every moment etc, smell flowers blah blah blah and i do try to keep my junk to my blog as to not spread feelings on the forum like pee in a pool.
Julie, thanks for understanding the positive/non confrontational nature of my original post. I agree that as long as this topic stays positive in nature, and more people like Jem can share their stories of life with us, then there is no reason this thread should stay locked.
I'm not one for arguing.</end quote></div>
<br>
LOL...so only positive remarks are welcome? Negative remarks will lead to locking?<br>
More people like Jem should share..but what others are not welcome? Please - this is the internet.
<br>
Editing to say i'm not trying to be smart or start anything that really did just make me chuckle <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
Also I would like to say I agree with... i believe it was... Lilith for me death is just part of life and I actually think there is an up side to being so aware of our impending doom - which is that I do appreciaet every moment etc, smell flowers blah blah blah and i do try to keep my junk to my blog as to not spread feelings on the forum like pee in a pool.
TCNJcystic
New member
Lilith, I appreciate you having some good ideas to share. I'm all for people sharing a different point of view so long as they do it in the calm manner that you have. I agree with you that death does need to be discussed and dealt with especially in the case of cf. I suppose I'm simply saying that I personally would rather look at the life side of cf and look at death as if it were just a part of the life process that everyone goes through. I'd rather not look at cf --> death when really life --> death. I suppose a dialogue like, "my son was just diagnosed with cf at age 5," and someone here saying "well death is coming up, and you can't avoid it,' is sort of like someone saying in a non cf related context, "I just had a baby," and then someone else saying "it's gonna die, get ready for it." I could be totally warped in that mind set and might not have written the idea as clearly as I picture it. But either way, thanks for your input!
LittleDebbie, sorry if you read my response the first time, I thought you were being smart, and then you edited your post. I'm sorry if you misunderstood about what I meant by positive dialogue, that meant any kind of dialogue positive or negative that wasnt hurtful or sarcastic. Thanks for your input.
LittleDebbie, sorry if you read my response the first time, I thought you were being smart, and then you edited your post. I'm sorry if you misunderstood about what I meant by positive dialogue, that meant any kind of dialogue positive or negative that wasnt hurtful or sarcastic. Thanks for your input.
It would make sense that he or she who starts a topic should have the RIGHT to keep it on topic-whatever that means to them. Steve made it clear he wasn't here for arguements sake, he stated what his hope of posting was, and for him, it's hearing stories like what janet (Jem) shared. And steve wasn't even the one who brought up the locking of this thread. Allie and Liz a few others (I believe maybe Sean but can't recall exaclty) brought it up and ASKED that it be locked. Steve was simply explaining that there was no need for locking, provided (this is in my opinion) that it stays civil.
I too like to hear those positive stories, sometimes it just needs to be talked about. And if you prefer to find joy your impending doom, so be it. No probem or judgements there. not everyone feels that way though. Not everyone wants to discuss it either. So if you do want to discuss it, that's why everyone has the freedom to start a topic, not take away from someone elses.
I think it was a little premature in thinking that this would become a negative topic of arguing.
Keep those stories and outlooks coming.
I too like to hear those positive stories, sometimes it just needs to be talked about. And if you prefer to find joy your impending doom, so be it. No probem or judgements there. not everyone feels that way though. Not everyone wants to discuss it either. So if you do want to discuss it, that's why everyone has the freedom to start a topic, not take away from someone elses.
I think it was a little premature in thinking that this would become a negative topic of arguing.
Keep those stories and outlooks coming.
littledebbie
New member
Yikes Steve, whoa I'm sorry you took it that way. i totally apologize. It really did just make me laugh a little becuase it was funny...then again I think almost everything is funny. i think you just rode down on me kind of hard but like you said i guess you're not in the mood tonight. I'm not in the mood to fight tonight so peace, love and understanding man. Live long and prosper <img src="i/expressions/heart.gif" border="0">
Steve and I are fine, I think Steve is a fantastic guy, and we talked about this. He respects my opinion,I respect his, and him and I both apologized for misunderstandings and we have no problem. I think the problem with threads liek this, and ones who attack the other side as well, I'm not a hypocrite, is they turn into arguements, instead of trying to promote a dialouge, people point fingers.
That's what is most negative to me, is the in-fighting. We (and I mean EVERY LAST ONE OF US, mself included) need to try and promote dialogue, easy as it is to argue. I have my hot buttons too, I am not blameless. But I really, truly do wish we could all get along.
Steve and I don't agree on the morbidity issue. But you know what? I have so much respect for him it isn't even funny. And our discussion was so mature...it makes me wonder WHY threads have to derail. I have hope for all of us, I really do.
That's what is most negative to me, is the in-fighting. We (and I mean EVERY LAST ONE OF US, mself included) need to try and promote dialogue, easy as it is to argue. I have my hot buttons too, I am not blameless. But I really, truly do wish we could all get along.
Steve and I don't agree on the morbidity issue. But you know what? I have so much respect for him it isn't even funny. And our discussion was so mature...it makes me wonder WHY threads have to derail. I have hope for all of us, I really do.
Everyone makes their own individual peace (or not) with their own mortality and that of their loved ones. Everyone has their own coping mechanisms. (Denial being the classic one used by most "healthy" young people. Morbid humor a common one for those living with disability or chronic illness.)
For me, Harriet McBryde Johnson's article "Celebration for the Day of the Dead" (at <a target=_blank class=ftalternatingbarlinklarge href="http://www.newmobility.com/review_article.cfm?id=198&action=browse">http://www.newmobility.com/rev...m?id=198&action=browse</a> ) best sums up where I am with things now - might well change. And I recommend her book "Too Late To Die Young" (see Amazon at <a target=_blank class=ftalternatingbarlinklarge href="http://www.amazon.com/gp/product/0312425716/sr=8-1/qid=1147431424/ref=sr_1_1/104-4364154-8913525?%5Fencoding=UTF8">http://www.amazon.com/gp/produ...13525?%5Fencoding=UTF8</a> ) to any adult living with any chronic progressive illness - heck, to any adult at all.
And 2 sentences from her article always echo in my mind:
"When I die, I might as well die honest."
"When I die, I might as well die alive."
....and in honor of my husband who was told he was going to die before he was 35 - but didn't -- and was actually kind of pissed about that at first:
"While anyone may die young, it's not something you can count on."
But again, everyone has their own coping mechanism (here as in 3d land). Sometimes they sort of conflict which is more than awkward. But even with the awkwardness I think we have to find some way to respect all the different ways and still be able to speak our own truths.
For me, Harriet McBryde Johnson's article "Celebration for the Day of the Dead" (at <a target=_blank class=ftalternatingbarlinklarge href="http://www.newmobility.com/review_article.cfm?id=198&action=browse">http://www.newmobility.com/rev...m?id=198&action=browse</a> ) best sums up where I am with things now - might well change. And I recommend her book "Too Late To Die Young" (see Amazon at <a target=_blank class=ftalternatingbarlinklarge href="http://www.amazon.com/gp/product/0312425716/sr=8-1/qid=1147431424/ref=sr_1_1/104-4364154-8913525?%5Fencoding=UTF8">http://www.amazon.com/gp/produ...13525?%5Fencoding=UTF8</a> ) to any adult living with any chronic progressive illness - heck, to any adult at all.
And 2 sentences from her article always echo in my mind:
"When I die, I might as well die honest."
"When I die, I might as well die alive."
....and in honor of my husband who was told he was going to die before he was 35 - but didn't -- and was actually kind of pissed about that at first:
"While anyone may die young, it's not something you can count on."
But again, everyone has their own coping mechanism (here as in 3d land). Sometimes they sort of conflict which is more than awkward. But even with the awkwardness I think we have to find some way to respect all the different ways and still be able to speak our own truths.
I as well as anyone see all the positive things in my life, My boyfriend, my daughter, my dog... mom, sisters, brothers, and all kinds of friends.
However after being tolds for many years You can't, You can't, You can't, or you won't, won't, won't...... I have do and continue to supass what they have told me for years. Even so the negative outlook that was given to me as a kid, and sill not quite sure how or what it did to me during my teen years...... end thought is that yes after being told those kinds of things my whole life it's hard for those thought and feelings to just go away and not to come back.
I, however, have no problem with your opinion, thoughts, or feelings so why do you critize mine, negative or not they are mine and will not change.
Let's just agree to disagree and live as we will........
However after being tolds for many years You can't, You can't, You can't, or you won't, won't, won't...... I have do and continue to supass what they have told me for years. Even so the negative outlook that was given to me as a kid, and sill not quite sure how or what it did to me during my teen years...... end thought is that yes after being told those kinds of things my whole life it's hard for those thought and feelings to just go away and not to come back.
I, however, have no problem with your opinion, thoughts, or feelings so why do you critize mine, negative or not they are mine and will not change.
Let's just agree to disagree and live as we will........
L
littlemisssilly
Guest
Steve,
I enjoyed reading your original post, you do seem very wise for your years. Although death is obviously inescapable, I never realised how much I talked / thought about it until some of my friends point it out to me. I personally love reading stories like Janet's because it gives me hope and it makes a nice shift from the usual gloom that follows most discussions about CF.
I'm soon to be 30 and well, unless some freaky accident happens, have got many good years left in me. I try really hard not to consume too much of my thinking on the negativity surrounding CF because like I said, I'm almost 30 and had 'I of known then what I know now' I wouldn't of bothered wasting any of my childhood years thinking about dying!!
Thank you for your post Steve.
I enjoyed reading your original post, you do seem very wise for your years. Although death is obviously inescapable, I never realised how much I talked / thought about it until some of my friends point it out to me. I personally love reading stories like Janet's because it gives me hope and it makes a nice shift from the usual gloom that follows most discussions about CF.
I'm soon to be 30 and well, unless some freaky accident happens, have got many good years left in me. I try really hard not to consume too much of my thinking on the negativity surrounding CF because like I said, I'm almost 30 and had 'I of known then what I know now' I wouldn't of bothered wasting any of my childhood years thinking about dying!!
Thank you for your post Steve.
littlemisssilly's post and Tess' post reminded me of this other paragraph on the Jerry Lewis telethon from Harriet McBryde Johnson's article:
"I studied the telethon and tried to understand its peculiar power. It spewed out the same old messages--"killer disease," "life ebbing away," "before it's too late." As I heard the death sentence pronounced on another generation of children, I wondered how many had actually been killed by it. How many had suffered pneumonia without vigilant parents or a crazy German doctor with pea soup? How many had died for lack of a reason, when a reason was needed in the middle of the night, to hang on to life? Worst of all, how many had lived and died without finding meaning? How many had failed to value their own lives?"
In particular, that last line resonates with me:
"How many had failed to value their own lives?"
I wondered about how some people who think they will die young are in hurry to find their true adult identity and live their lives with meaning (like my husband) and how some just don't see the point and don't even look for their adult power or learn how to live their lives with meaning - sort of stay children all of their lives.....
"I studied the telethon and tried to understand its peculiar power. It spewed out the same old messages--"killer disease," "life ebbing away," "before it's too late." As I heard the death sentence pronounced on another generation of children, I wondered how many had actually been killed by it. How many had suffered pneumonia without vigilant parents or a crazy German doctor with pea soup? How many had died for lack of a reason, when a reason was needed in the middle of the night, to hang on to life? Worst of all, how many had lived and died without finding meaning? How many had failed to value their own lives?"
In particular, that last line resonates with me:
"How many had failed to value their own lives?"
I wondered about how some people who think they will die young are in hurry to find their true adult identity and live their lives with meaning (like my husband) and how some just don't see the point and don't even look for their adult power or learn how to live their lives with meaning - sort of stay children all of their lives.....
kayleesgrandma
New member
OK, I'm going to jump in on this thread because I see it has calmed down a little now from yesterday. It was encouraging to see how everyone worked everything out from Steve's 1st original comment. Do you all see how important you all are to this forum? Everybody went from freaking out over the comment, to freaking out over how everyone was freaking out. Then some other comments were made that started another freak out, then people started to THINK instead of REACT, and than a really helpful DIALOG came about. I got on today expecting to see a "scorched earth" kind of thing going on, instead there was thoughtful, CONSIDERATE comments. We are all copeing the best we know how here--and I'm not trying to be funny--but I think we (myself included) sometimes need to step back and take a deep breath before jumping in. Steve, I'm sorry you got the impression that there seems to be a "Death Watch" sort of thing here. I find more about living than dying here. How much better would I have spent the last 30 yrs of my life if I had truly known how finite life is--like those here who live day to day, year to year We all followed Allie, not because she talked about dying, but because she talked about "living" with the dying. She is trying so hard to keep living in the face of losing a part of her soul. And all the others that have lost and are facing losing loved ones--we're all about the living for right now--for this moment--for as long as we can stretch it out. You all have given <u>me</u> the moment when I couldn't see it right in front of my face. I thank you allfor that gift. Now let's get on with the LIVING!--terri
With regard to the original post, I just wanted to add my comment about living like you were dying (isn't that a country song?)
I find that I do think about dying a lot when planning my "future"... Mostly, I use it to motivate myself to do things NOW just in case I don't make it to that 50th Wedding Anniversary. If I do make it, AWESOME! But, I just think I am more motivated to travel, spend time with family/friends, etc. than most of my non-cf friends or those who haven't faced down a life-shortening disease. I feel this is a blessing. Its not too great for me to look at everything in terms of death, yet I feel I must do this to motivate myself to do things I want to do NOW. If I didn't live as though my life MAY be cut short, I would certainly put a lot of things off. I think people without CF do this a lot (at least those I know do).
As far as dwelling on dying... yes, I WILL have those days too. Usually they come up on me after realizing I may not have biological children or be around for them to grow up, etc.... Or, when others are busy talking about their 401Ks and mutual funds and I wonder, "Why would I even bother". I admit, it can get pretty negative in my brain. I don't apologize for those feelings, nor do I dwell on them. I feel them and then I either move on or choose to feel them some more depending on the day and mood I'm in.
So, basically, death IS an inevitable facet of everyone's life. Death will come to us all, and I personally think it is our responsibility (CF or not) to do something with that knowledge. And, it is ok to dwell on our own extistential dilemmas every now and again too (CF or not).
Peace,
I find that I do think about dying a lot when planning my "future"... Mostly, I use it to motivate myself to do things NOW just in case I don't make it to that 50th Wedding Anniversary. If I do make it, AWESOME! But, I just think I am more motivated to travel, spend time with family/friends, etc. than most of my non-cf friends or those who haven't faced down a life-shortening disease. I feel this is a blessing. Its not too great for me to look at everything in terms of death, yet I feel I must do this to motivate myself to do things I want to do NOW. If I didn't live as though my life MAY be cut short, I would certainly put a lot of things off. I think people without CF do this a lot (at least those I know do).
As far as dwelling on dying... yes, I WILL have those days too. Usually they come up on me after realizing I may not have biological children or be around for them to grow up, etc.... Or, when others are busy talking about their 401Ks and mutual funds and I wonder, "Why would I even bother". I admit, it can get pretty negative in my brain. I don't apologize for those feelings, nor do I dwell on them. I feel them and then I either move on or choose to feel them some more depending on the day and mood I'm in.
So, basically, death IS an inevitable facet of everyone's life. Death will come to us all, and I personally think it is our responsibility (CF or not) to do something with that knowledge. And, it is ok to dwell on our own extistential dilemmas every now and again too (CF or not).
Peace,
R
Renegade
Guest
Steve,
I would like to thank you for you forum summary. I really like this site except for the way some people talk about death constantly. That's why I call their group
"The Death posse" It's almost all they talk about. I'm 40 and If I spent half as much time thinking or talking about death as much as they do I'd probabaly be gone already. You're the only other male that has said something about this issue and I appreciate it. Good Luck. And keep fighting.
Renegade (Ricky 40y / CF - Cepacia since 1996.)
I would like to thank you for you forum summary. I really like this site except for the way some people talk about death constantly. That's why I call their group
"The Death posse" It's almost all they talk about. I'm 40 and If I spent half as much time thinking or talking about death as much as they do I'd probabaly be gone already. You're the only other male that has said something about this issue and I appreciate it. Good Luck. And keep fighting.
Renegade (Ricky 40y / CF - Cepacia since 1996.)