Thinking about death & Fear

CFkitty

New member
Does anyone else here have more than a passing through about death? Like dreams, obsessive thoughts (yes, I've been in therapy) and a general fear that your current infection can go rogue?<br><br>I have a few CF friends who were moderately okay, had IVs once or twice a year, no huge progression, then BAM! they just went downhill and never came back.<br><br>Meds an therapy can help only so much, but when it's a very real possibility, and you've already knocking on the door once or twice, it's kind of hard not to let it get in your head.<br><br>What are your general thoughts of death? Of life on the other side? Are you afraid of not existing? My faith tells me that there's so much more on the "other side" but I'm pretty darn scared.<br><br>Thoughts?<br>
 

CFkitty

New member
Does anyone else here have more than a passing through about death? Like dreams, obsessive thoughts (yes, I've been in therapy) and a general fear that your current infection can go rogue?<br><br>I have a few CF friends who were moderately okay, had IVs once or twice a year, no huge progression, then BAM! they just went downhill and never came back.<br><br>Meds an therapy can help only so much, but when it's a very real possibility, and you've already knocking on the door once or twice, it's kind of hard not to let it get in your head.<br><br>What are your general thoughts of death? Of life on the other side? Are you afraid of not existing? My faith tells me that there's so much more on the "other side" but I'm pretty darn scared.<br><br>Thoughts?<br>
 

anien2

New member
life on the other side... that issue has been on people´s head since... ever. Actually many psichologists consider that it is the point when we quit being animals and become.... whatever we are now.
<br>
<br>That is the reason why religions appear at the very begining of human history, because we need answers for the things we dont understand. My personal opinion is that religions are tools to make us feel more confortable with all those things that can not be explained.
<br>
<br>Dont think too much about not existing once you are dead, if it happens you wont notice. At least you are worried and will try to get all the best from what you have, many people live like they were never going to die and die like they never lived, CFers at least keep in mind that our time alive is limited.
 

anien2

New member
life on the other side... that issue has been on people´s head since... ever. Actually many psichologists consider that it is the point when we quit being animals and become.... whatever we are now.
<br>
<br>That is the reason why religions appear at the very begining of human history, because we need answers for the things we dont understand. My personal opinion is that religions are tools to make us feel more confortable with all those things that can not be explained.
<br>
<br>Dont think too much about not existing once you are dead, if it happens you wont notice. At least you are worried and will try to get all the best from what you have, many people live like they were never going to die and die like they never lived, CFers at least keep in mind that our time alive is limited.
 

mamaScarlett

Active member
I have alot of thoughts on what you just posted. But one big one that stands out is that the vast majority of Cfers are not basically healthy and then bam, are gone within months. Just doesn't work that way. It was either headed that way for a long time and they or you weren't aware (or they were in denial), or alot more preventative work could have been put in. Not to take away from the loss of your friends, but thats reality. I put it that way, bc I once said the same thing to my doctor, and this is what she told me. And over time, that thought has brought me comfort, and even bigger, motivation.<br>To me, what gets me through moments where I struggle with this is my faith. Outside of that, I work my butt off and leave the rest. I appreciate the good in my life alot more than so many people I know, bc of my perspective.<br>I went through a time where all I thought about was death/fear, and not that I don't ever anymore, but it was just a time I had to get through. Over it now. Moved on and just working and enjoying life. I know the "facts" and statistics but I chose to ignore them to an extent bc I've already proved every statistic wrong. That doesn't mean I don't work hard each day for my health, I do. But I leave the rest. Thats not a life, to me.<br>Just my 2 cents. <br><img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
 

mamaScarlett

Active member
I have alot of thoughts on what you just posted. But one big one that stands out is that the vast majority of Cfers are not basically healthy and then bam, are gone within months. Just doesn't work that way. It was either headed that way for a long time and they or you weren't aware (or they were in denial), or alot more preventative work could have been put in. Not to take away from the loss of your friends, but thats reality. I put it that way, bc I once said the same thing to my doctor, and this is what she told me. And over time, that thought has brought me comfort, and even bigger, motivation.<br>To me, what gets me through moments where I struggle with this is my faith. Outside of that, I work my butt off and leave the rest. I appreciate the good in my life alot more than so many people I know, bc of my perspective.<br>I went through a time where all I thought about was death/fear, and not that I don't ever anymore, but it was just a time I had to get through. Over it now. Moved on and just working and enjoying life. I know the "facts" and statistics but I chose to ignore them to an extent bc I've already proved every statistic wrong. That doesn't mean I don't work hard each day for my health, I do. But I leave the rest. Thats not a life, to me.<br>Just my 2 cents. <br><img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
 

bigstar

New member
All people think about death. It is what sets us apart from animals (as it has been said). I think everyone has their own thoughts about death. But life is so fragile with or without CF. Who can be sure of how long they gonna live? Ok we all gonna die. One day. Eventually. Thats for sure, since we have been born already. I might die because of CF. Or due to a heart attack. Or i might get hit by a bus. Maybe the end of the world is near. My point is WHO KNOWS? We dont know how much time weve got left. Embrace life today. Live today. Because time is slipping away! Enjoy!
 

bigstar

New member
All people think about death. It is what sets us apart from animals (as it has been said). I think everyone has their own thoughts about death. But life is so fragile with or without CF. Who can be sure of how long they gonna live? Ok we all gonna die. One day. Eventually. Thats for sure, since we have been born already. I might die because of CF. Or due to a heart attack. Or i might get hit by a bus. Maybe the end of the world is near. My point is WHO KNOWS? We dont know how much time weve got left. Embrace life today. Live today. Because time is slipping away! Enjoy!
 
1

1BumLung

Guest
In some ways, a "fear" of death is probably what motivates us to live. But it can become quite a problem when it begins to occupy so much of your thought-life that it's a distraction and interferes with living. I've been thinking about death a bit more lately too. You don't mention the nature of your "faith," but I'm guessing that there may be components to it that address life on THIS side too. Look in to what you can know about life. How to live it. What are the greatest purposes for which one can live. And pursue those. I've found that serving others chases away the thoughts about death.<br>
 
1

1BumLung

Guest
In some ways, a "fear" of death is probably what motivates us to live. But it can become quite a problem when it begins to occupy so much of your thought-life that it's a distraction and interferes with living. I've been thinking about death a bit more lately too. You don't mention the nature of your "faith," but I'm guessing that there may be components to it that address life on THIS side too. Look in to what you can know about life. How to live it. What are the greatest purposes for which one can live. And pursue those. I've found that serving others chases away the thoughts about death.<br>
 

lilmac1177

New member
<font color="#0066ff" face="georgia">you're not alone, CFkitty (and i'm glad to know i'm not either)...</font><font color="#0066ff" style="background-color: rgb(238, 238, 238); "><font face="georgia">i'm also afraid. of the potential pain and suffering, of death itself, of "missing out" on my family and friends. i really like what anien2 said:</font></font><span style="background-color: rgb(238, 238, 238); "><font color="#000000"><i><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anien2</b></i> ...Dont think too much about not existing once you are dead...</end quote></i></font><span style="background-color: rgb(238, 238, 238); "><font color="#000000"><br></font><font color="#0066ff" face="georgia">i do know that sometimes it bothers me more than others. i believe a lot depends on how i'm doing with my depression/anxiety at the time.</font><i style="background-color: rgb(238, 238, 238); "><font color="#000000"><br></font></i><i style="background-color: rgb(238, 238, 238); "><font color="#000000"><br></font></i><i style="background-color: rgb(238, 238, 238); "><font color="#000000"><br></font></i><i style="background-color: rgb(238, 238, 238); "><font color="#000000"><br></font></i>
 

lilmac1177

New member
<font color="#0066ff" face="georgia">you're not alone, CFkitty (and i'm glad to know i'm not either)...</font><font color="#0066ff" style="background-color: rgb(238, 238, 238); "><font face="georgia">i'm also afraid. of the potential pain and suffering, of death itself, of "missing out" on my family and friends. i really like what anien2 said:</font></font><span style="background-color: rgb(238, 238, 238); "><font color="#000000"><i><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anien2</b></i> ...Dont think too much about not existing once you are dead...</end quote></i></font><span style="background-color: rgb(238, 238, 238); "><font color="#000000"><br></font><font color="#0066ff" face="georgia">i do know that sometimes it bothers me more than others. i believe a lot depends on how i'm doing with my depression/anxiety at the time.</font><i style="background-color: rgb(238, 238, 238); "><font color="#000000"><br></font></i><i style="background-color: rgb(238, 238, 238); "><font color="#000000"><br></font></i><i style="background-color: rgb(238, 238, 238); "><font color="#000000"><br></font></i><i style="background-color: rgb(238, 238, 238); "><font color="#000000"><br></font></i>
 
A

Allansarmy

Guest
I thought you might want to see what it is like coming from a Dad of a CF boy age 15.
<br><br>First let me tell you about my sister-n-law, a very special person that I was honored to have known.<br>
<br>My wife's sister had CF passing at the age of 27 and having lived 5 years with a double lung transplant. The point I am making with her is that she 'lived'. She lived everyday as if it were her last. She laughed everyday, even when she was on her last day she found something to laugh at. Laughter is contagious, she made those around her not want to feel sorry for her. She always hated that, unless it was her birthday, she would tell you everything she wanted a month ahead of time written out for all to see lol. She was not shy when it came to gifts she always said. She always said, "everyday you have to find something to be thankful for". One day I went to her house and found sticky notes all over the wall and the bathroom mirror, one of them read "Thank you God for toilet paper". She shrugged <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>Funny story coming your way -----
<br>
<br>Her name was Elisa pronounced "Ee-Lisa", but when she went to church the pastor Always pronounced her name wrong. One day, when she was very weak about 78 pounds and on Oxygen and in a wheel chair, we wheeled her down to the alter. About 20 people gathered around her reaching their arms out in prayer "some speaking in tongues", the tension was very serious and people were weeping to see their most dedicated church goer in dire stress and within her last week to live on this earth. The pastor kept calling her name out "ALICIA" he would say over and over again. She grabbed my arm.... leaned me down by her mouth to my ear.... NO WONDER I AM NOT GETTING BETTER, she said, THEY KEEP PRAYING FOR SOME GIRL NAMED ALICIA!. Tears ran down my face, not from sadness lol.
<br>
<br>I was very close to Elisa, and think about her often. My son who is 15 still remembers her and he acts a lot like her. He is stubborn, bullheaded, but most of all he has faith. He told me once that he fears dying before he reaches 30. For some reason, 30 is the magic number for him. Some of you are over 30. So the only advice I will can give from a Dad that also has several friends with CF, shoot for goals that are within reach and live life everyday no matter what. Are you allowed to have downer days where you feel depressed, yes you are, even healthy people get this way.
<br>
<br>Keep your head high and try not to dwell on whats to come. We all pass from this earth, don't spend your days doubting, and wonder what could have been.
<br>
<br>Wish all of you the best of luck in 2012!
 
A

Allansarmy

Guest
I thought you might want to see what it is like coming from a Dad of a CF boy age 15.
<br><br>First let me tell you about my sister-n-law, a very special person that I was honored to have known.<br>
<br>My wife's sister had CF passing at the age of 27 and having lived 5 years with a double lung transplant. The point I am making with her is that she 'lived'. She lived everyday as if it were her last. She laughed everyday, even when she was on her last day she found something to laugh at. Laughter is contagious, she made those around her not want to feel sorry for her. She always hated that, unless it was her birthday, she would tell you everything she wanted a month ahead of time written out for all to see lol. She was not shy when it came to gifts she always said. She always said, "everyday you have to find something to be thankful for". One day I went to her house and found sticky notes all over the wall and the bathroom mirror, one of them read "Thank you God for toilet paper". She shrugged <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>Funny story coming your way -----
<br>
<br>Her name was Elisa pronounced "Ee-Lisa", but when she went to church the pastor Always pronounced her name wrong. One day, when she was very weak about 78 pounds and on Oxygen and in a wheel chair, we wheeled her down to the alter. About 20 people gathered around her reaching their arms out in prayer "some speaking in tongues", the tension was very serious and people were weeping to see their most dedicated church goer in dire stress and within her last week to live on this earth. The pastor kept calling her name out "ALICIA" he would say over and over again. She grabbed my arm.... leaned me down by her mouth to my ear.... NO WONDER I AM NOT GETTING BETTER, she said, THEY KEEP PRAYING FOR SOME GIRL NAMED ALICIA!. Tears ran down my face, not from sadness lol.
<br>
<br>I was very close to Elisa, and think about her often. My son who is 15 still remembers her and he acts a lot like her. He is stubborn, bullheaded, but most of all he has faith. He told me once that he fears dying before he reaches 30. For some reason, 30 is the magic number for him. Some of you are over 30. So the only advice I will can give from a Dad that also has several friends with CF, shoot for goals that are within reach and live life everyday no matter what. Are you allowed to have downer days where you feel depressed, yes you are, even healthy people get this way.
<br>
<br>Keep your head high and try not to dwell on whats to come. We all pass from this earth, don't spend your days doubting, and wonder what could have been.
<br>
<br>Wish all of you the best of luck in 2012!
 

athanasia

New member
I, too, have had many thoughts about death. When I was in high school (the only one in my school with CF), people knew I was sick and would ask about it. I worked my tail off to keep up in class when I was sick and the ones who asked me about CF knew that and would then ask 'wouldn't you be really angry if you work this hard in school and die before you graduate?' That question caught me off guard because I hadn't thought about that before. I mean I never planned what I wanted to be when I grow up (other than a mommy) because I figured I wouldn't be alive for a career but never thought about dying before I finished high school. Also, during high school, every one of my CF friends died. I went to at least 3 funerals of my friends around my age every year of high school. That also hit me hard but it made me more determined to pack more life into everyday.

I graduated high school, on time with my peers I might add, and started college when my high school bf didn't want to get married and have kids right away. I got mono from him during my first semester and got really, really sick. This was the first time they mentioned transplant to me. That scared the daylights out of me and I almost went and got artificially inseminated because that is all I really wanted before I died. But I waited and talked to doctors who told me it would be possible after. I went on to finish my associates degree and work at Disney World and participate in some amazing programs as my health got back up to what is was over the next few years.

5 years later, it all caught up with me. I was living well and happy (don't let anyone every tell ya that attitude doesn't play a factor because it does, my healthiest times are when I am mentally and emotionally happy) but I wasn't listening to my body to slow down and rest. I was so busy trying to pack everything into everyday. I had a lung collapse and everything dropped and I got bad fast. From April through September I was in and out of the hospital and on oxygen, losing weight and not being able to do daily functions like getting dressed. It was time for transplant. Of course, I thought about death A LOT during this time. I worried that I had wasted my time or something. But a funny thing happened.

Our church had just gotten a new minister and he came to visit me at the hospital. I had never met him before. We talked about me always asking God to heal me but it never happened. He then told me that He heals in several ways. There is the physical act of healing where He cures. Then there is also the healing where He heals others through the sick by showing them strength in others though bad times. Then there is the healing where He shows you your strength by guiding you through times that are bad. This changed everything for me. I realized right then which one He had provided for me and that He was answering my prayers. I felt a sense of calm and utter joy for the rest of months leading up to my transplant because I realized I was able to do so much in my 24 years already and that I was blessed beyond belief to have such amazing people in my life, and to have loved and been loved in return and have understood things that some people never will. I realized that if my life ended now, I was a success at living. I also realized I had done everything in my power to stay healthy enough while I wait and it was now up to Him what happens next but no matter what, it will be good because it is His plan. I spend the days enjoying every moment, every person, and every breath I had and it was the best feeling I had ever experienced. I wish that feeling for everyone (preferably without having to go through what I was going through physically at that time) because it was the moment I understood everything without even knowing it.

My health decreased to me being on a vent and in a coma. The next day, I got my lungs and woke up to have the best recovery my transplant team had ever seen. They told me later that I was so sick, they almost couldn't do it but they took the chance because they figured I would die if they didn't. That was over 4 years ago and I am doing so amazing! I have graduated with 2 bachelor's degrees and am now going to grad school, met the love of my life, we are getting married in Oct and working with the docs to eventually have a baby.

My point to my ramblings is that I still think about death, especially now that I have so much to lose. But every time I do, I think about all of the blessings that I have been given, the miracles that I have not only witnessed but have been a part of, and all the times that He could have taken me away if He wanted but hasn't. It then makes me think that I could let fear control me and miss out or I can let it drive me to make sure that I do everything on my list first. Take in every breath, every moment, and enjoy every person in your life as you have them. Don't worry about the next one or what may happen. I prey you find that peaceful feeling (again, without extreme issues leading you to it) and let it wash over you. No one knows how many breaths we are going to get in this life but I have learned that each one, no matter how much effort it takes me to get it, is the greatest breath yet.

Sorry for such a long reply, I just hope it helps.
 

athanasia

New member
I, too, have had many thoughts about death. When I was in high school (the only one in my school with CF), people knew I was sick and would ask about it. I worked my tail off to keep up in class when I was sick and the ones who asked me about CF knew that and would then ask 'wouldn't you be really angry if you work this hard in school and die before you graduate?' That question caught me off guard because I hadn't thought about that before. I mean I never planned what I wanted to be when I grow up (other than a mommy) because I figured I wouldn't be alive for a career but never thought about dying before I finished high school. Also, during high school, every one of my CF friends died. I went to at least 3 funerals of my friends around my age every year of high school. That also hit me hard but it made me more determined to pack more life into everyday.

I graduated high school, on time with my peers I might add, and started college when my high school bf didn't want to get married and have kids right away. I got mono from him during my first semester and got really, really sick. This was the first time they mentioned transplant to me. That scared the daylights out of me and I almost went and got artificially inseminated because that is all I really wanted before I died. But I waited and talked to doctors who told me it would be possible after. I went on to finish my associates degree and work at Disney World and participate in some amazing programs as my health got back up to what is was over the next few years.

5 years later, it all caught up with me. I was living well and happy (don't let anyone every tell ya that attitude doesn't play a factor because it does, my healthiest times are when I am mentally and emotionally happy) but I wasn't listening to my body to slow down and rest. I was so busy trying to pack everything into everyday. I had a lung collapse and everything dropped and I got bad fast. From April through September I was in and out of the hospital and on oxygen, losing weight and not being able to do daily functions like getting dressed. It was time for transplant. Of course, I thought about death A LOT during this time. I worried that I had wasted my time or something. But a funny thing happened.

Our church had just gotten a new minister and he came to visit me at the hospital. I had never met him before. We talked about me always asking God to heal me but it never happened. He then told me that He heals in several ways. There is the physical act of healing where He cures. Then there is also the healing where He heals others through the sick by showing them strength in others though bad times. Then there is the healing where He shows you your strength by guiding you through times that are bad. This changed everything for me. I realized right then which one He had provided for me and that He was answering my prayers. I felt a sense of calm and utter joy for the rest of months leading up to my transplant because I realized I was able to do so much in my 24 years already and that I was blessed beyond belief to have such amazing people in my life, and to have loved and been loved in return and have understood things that some people never will. I realized that if my life ended now, I was a success at living. I also realized I had done everything in my power to stay healthy enough while I wait and it was now up to Him what happens next but no matter what, it will be good because it is His plan. I spend the days enjoying every moment, every person, and every breath I had and it was the best feeling I had ever experienced. I wish that feeling for everyone (preferably without having to go through what I was going through physically at that time) because it was the moment I understood everything without even knowing it.

My health decreased to me being on a vent and in a coma. The next day, I got my lungs and woke up to have the best recovery my transplant team had ever seen. They told me later that I was so sick, they almost couldn't do it but they took the chance because they figured I would die if they didn't. That was over 4 years ago and I am doing so amazing! I have graduated with 2 bachelor's degrees and am now going to grad school, met the love of my life, we are getting married in Oct and working with the docs to eventually have a baby.

My point to my ramblings is that I still think about death, especially now that I have so much to lose. But every time I do, I think about all of the blessings that I have been given, the miracles that I have not only witnessed but have been a part of, and all the times that He could have taken me away if He wanted but hasn't. It then makes me think that I could let fear control me and miss out or I can let it drive me to make sure that I do everything on my list first. Take in every breath, every moment, and enjoy every person in your life as you have them. Don't worry about the next one or what may happen. I prey you find that peaceful feeling (again, without extreme issues leading you to it) and let it wash over you. No one knows how many breaths we are going to get in this life but I have learned that each one, no matter how much effort it takes me to get it, is the greatest breath yet.

Sorry for such a long reply, I just hope it helps.
 

Printer

Active member
OK let me take a different approach here. I will be 72 in January and I have CF. One thing that I'm sure of is that I AM GOING TO DIE SOMETIME. My dad died of "lung disease" (probably CF). My mom died of cancer. My brother died of cancer. My sister died of cancer. One uncle was killed by being hit by a bus. Another uncle had a blood clot to the brain and fell from a forty foot ladder.

I don't know how I will die. Given family history, cancer would be the best bet and an accident comes in second. I do the best that I can to get all of the best medical advice that is available to me and I follow most of it.

Death will come when it will come. I have no idea of how and when. In the mean time I try to live my life as best as I can and enjoy the years that I have left as much as possible.

The only thing that I know for sure is that worrying about my demise will do nobody any good. I would rather worry about the Red Sox getting another starting pitcher.

Bill
 

Printer

Active member
OK let me take a different approach here. I will be 72 in January and I have CF. One thing that I'm sure of is that I AM GOING TO DIE SOMETIME. My dad died of "lung disease" (probably CF). My mom died of cancer. My brother died of cancer. My sister died of cancer. One uncle was killed by being hit by a bus. Another uncle had a blood clot to the brain and fell from a forty foot ladder.

I don't know how I will die. Given family history, cancer would be the best bet and an accident comes in second. I do the best that I can to get all of the best medical advice that is available to me and I follow most of it.

Death will come when it will come. I have no idea of how and when. In the mean time I try to live my life as best as I can and enjoy the years that I have left as much as possible.

The only thing that I know for sure is that worrying about my demise will do nobody any good. I would rather worry about the Red Sox getting another starting pitcher.

Bill
 

Jet

Member
I used to be afraid. I lost my older brother to CF when we were kids. He was only 13. I was in fear of my 13th birthday but never spoke to anyone about it. Somehow I had convinced myself that it would all end in my teens. At some point in high school I changed my approach. I stopped worrying about it and instead focused on milestones. Every time I pass a milestone, and luckily there have been many, he pops into my head. High School graduation, completing college, my first job, getting married, the birth of my children, turning 40 he's been there. I'm sure next year he'll be there for the big 50. The older I've gotten I've realized that everyone loses loved ones for a variety of reasons, car accidents, breast cancer. Some are older some are younger than I am. I've tried to live my life for the 2 of us knowing that I've been blessed for the time I've been given. Time that he didn't have.
 

Jet

Member
I used to be afraid. I lost my older brother to CF when we were kids. He was only 13. I was in fear of my 13th birthday but never spoke to anyone about it. Somehow I had convinced myself that it would all end in my teens. At some point in high school I changed my approach. I stopped worrying about it and instead focused on milestones. Every time I pass a milestone, and luckily there have been many, he pops into my head. High School graduation, completing college, my first job, getting married, the birth of my children, turning 40 he's been there. I'm sure next year he'll be there for the big 50. The older I've gotten I've realized that everyone loses loved ones for a variety of reasons, car accidents, breast cancer. Some are older some are younger than I am. I've tried to live my life for the 2 of us knowing that I've been blessed for the time I've been given. Time that he didn't have.
 
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