Ok let me start off by saying, I'm still trying to figure out how to frame this thread, to minimize the possible negative reactions to follow, and yet get my feelings out.
With the passing of Littledebbie at the age of 27 (28? her mysapce might not have been current age wise, like mine), reflection of the reality of her being gone has brought about something I have often struggled with in the past, and that is "CF survivor guilt". What is CF survivor guilt? Generally speaking, it's the troubling feeling where you feel bad/guilty that you have outlived either someone else with CF, outlived someone else without CF (though this isn't as often as the first definition), or you are doing much better health wise than someone else with CF who is younger.
A little history on me health wise (so people won't confuse my health status with others who are considered "mild"): I was diagnosed at around 6 months. Growing up, I was constantly hospitalized and medically labeled as "in respiratory distress". I have also had a couple bouts of double pneumonia where my mother has found herself kneeling in front of the hospital chapels altar many times (they thought I was a goner for sure). I was skin and bones growing up, and looked extremely unhealthy. I generally failed to thrive till I was around 16, and started to look more masculine. I couldnt go a full year of school without being hospitalized for CF (more like no more than 4 months), and I basically attained my education on the state run "homebound" tele-education course. As soon as I hit my late teens/early twenty's, I had severe bleeding problems, which I generally still do till this day (though not as bad, but they are recurrent). For several years, I was hospitalized 2+ weeks every 3 or 4 months, with the well known battery of constant antibiotics, you name it, I was on it. No one, including myself thought I would see 20, yet alone my current age of 36. So considering my past, I feel being labeled "mild" is incorrect.
That being said, growing up from my early teens to very late teens I was closely involved in our local CF summer camp (back before cepacia, and close group activities were encouraged). I would make very close friends with nearly every CF that came into the program. When I turned 16 they made me a counselor. If I had a nickel for every time I sat in a dark room with a younger CF who was scared of their uncertain future due to their bad health, trying to reassure them by saying "Look at me, i'm doing good now, and if I can do good, so can you", I'd be rich. We had some weird ones, but they were all lovable, and wonderful in their own way. Out of that original group of 45 or so CF's from Florida that participated in the camps (i'm talking about the regulars, not the countless others who only were there for one year), basically only 3 are still alive (myself included, and i'm not 100% sure of the other two because the others who made my infrastructure 'grapevine' of communication are now dead as well). 98% of whom I sat with and comforted, and told them they would be around to have a beer with me legally some day. For 99.7% of those children, I lied (not intentionally, but through hope). And that isn't including the same age close CF friends who laid awake with me at all hours doing the same thing, with the same results.
Two of my very best EXTREMELY close adult CF friends from that era, I recently buried, one totally unexpected, but due to CF. Aside from the CF related genocide I have lived through/tried to deal with, there is the topic of non CF extremely close people to me dieing before me (some way before me, including my very best friend of all time), Those number at least 8. The last very close one, a week before he unexpectedly died, I said (while drinking beers together) "I bet I outlive you", and was met with "Heh I doubt that", to which I said "Wanna bet beers on it?", and he said "Sure". Now whenever I have a beer I think of him and feel sorry for that exchange, even though it was totally innocent.
This all brings me to the main idea of this post, why me? Why am I still here, and other people who are younger, with or without CF, have passed? I wasn't the most compliant CF patient for at times large periods of time. I certainly wasn't the most pure of heart and deeds. I wasn't the most altruistic in intention. Why am I still here, and so many others aren't? I know when I hear of wonderful, beautiful young people dieing, then hear of other complete wastes of flesh still alive, I call them human cockroaches. Maybe i'm one of those and just don't know it? I have 3 different bacteria strains in my lungs (fairly weak to everything), I work full time in a job that is very physically demanding, and deal with the typical CF regimen in between (4 aresols x 2 day, 2 vest treatments a day, pills, supplements, insurance problems, and then all the other problems/responsibilities associated with being an adult).
Could it be possible that those of us mysteriously still alive, and some thriving, aren't being "awarded", but possibly being punished? Have we been kept here because we haven't learned something and others who have departed us at a younger age learned something that graduates them early? I know that is a metaphysical/spiritual way of looking at it, but the other way falls straight into chaos.
The older I get, and do fairly well, and see more people who I care about (with or without CF) pass away at a younger or equal age, the more I flat out feel guilty for still being here. And to be honest knowing that my health will continue to degrade at some rate over time (that's inevitable), knowing how increasingly grueling the battle will be to just stay functioning, I admittedly sometimes find myself envying those who passed before me, knowing they won't have to deal with that progressively harder regimen.
I've heard/read about survivor guilt when discussing say train or plane accident survivors when many/all of those died around them, but i've never really seen this subject broached when discussing a terminal illness that many people have. Thoughts? Opinions? I'm sure i'll get some text based tomatoes thrown at me for sharing this, and that is fine. But i'm interested if others with this disease have these feelings as well. When I saw debbie had passed, my first thoughts/feelings were (in order): shock/disbelief - emotional hurt - realization of never speaking to her again - anger - "Why her and not me?".
With the passing of Littledebbie at the age of 27 (28? her mysapce might not have been current age wise, like mine), reflection of the reality of her being gone has brought about something I have often struggled with in the past, and that is "CF survivor guilt". What is CF survivor guilt? Generally speaking, it's the troubling feeling where you feel bad/guilty that you have outlived either someone else with CF, outlived someone else without CF (though this isn't as often as the first definition), or you are doing much better health wise than someone else with CF who is younger.
A little history on me health wise (so people won't confuse my health status with others who are considered "mild"): I was diagnosed at around 6 months. Growing up, I was constantly hospitalized and medically labeled as "in respiratory distress". I have also had a couple bouts of double pneumonia where my mother has found herself kneeling in front of the hospital chapels altar many times (they thought I was a goner for sure). I was skin and bones growing up, and looked extremely unhealthy. I generally failed to thrive till I was around 16, and started to look more masculine. I couldnt go a full year of school without being hospitalized for CF (more like no more than 4 months), and I basically attained my education on the state run "homebound" tele-education course. As soon as I hit my late teens/early twenty's, I had severe bleeding problems, which I generally still do till this day (though not as bad, but they are recurrent). For several years, I was hospitalized 2+ weeks every 3 or 4 months, with the well known battery of constant antibiotics, you name it, I was on it. No one, including myself thought I would see 20, yet alone my current age of 36. So considering my past, I feel being labeled "mild" is incorrect.
That being said, growing up from my early teens to very late teens I was closely involved in our local CF summer camp (back before cepacia, and close group activities were encouraged). I would make very close friends with nearly every CF that came into the program. When I turned 16 they made me a counselor. If I had a nickel for every time I sat in a dark room with a younger CF who was scared of their uncertain future due to their bad health, trying to reassure them by saying "Look at me, i'm doing good now, and if I can do good, so can you", I'd be rich. We had some weird ones, but they were all lovable, and wonderful in their own way. Out of that original group of 45 or so CF's from Florida that participated in the camps (i'm talking about the regulars, not the countless others who only were there for one year), basically only 3 are still alive (myself included, and i'm not 100% sure of the other two because the others who made my infrastructure 'grapevine' of communication are now dead as well). 98% of whom I sat with and comforted, and told them they would be around to have a beer with me legally some day. For 99.7% of those children, I lied (not intentionally, but through hope). And that isn't including the same age close CF friends who laid awake with me at all hours doing the same thing, with the same results.
Two of my very best EXTREMELY close adult CF friends from that era, I recently buried, one totally unexpected, but due to CF. Aside from the CF related genocide I have lived through/tried to deal with, there is the topic of non CF extremely close people to me dieing before me (some way before me, including my very best friend of all time), Those number at least 8. The last very close one, a week before he unexpectedly died, I said (while drinking beers together) "I bet I outlive you", and was met with "Heh I doubt that", to which I said "Wanna bet beers on it?", and he said "Sure". Now whenever I have a beer I think of him and feel sorry for that exchange, even though it was totally innocent.
This all brings me to the main idea of this post, why me? Why am I still here, and other people who are younger, with or without CF, have passed? I wasn't the most compliant CF patient for at times large periods of time. I certainly wasn't the most pure of heart and deeds. I wasn't the most altruistic in intention. Why am I still here, and so many others aren't? I know when I hear of wonderful, beautiful young people dieing, then hear of other complete wastes of flesh still alive, I call them human cockroaches. Maybe i'm one of those and just don't know it? I have 3 different bacteria strains in my lungs (fairly weak to everything), I work full time in a job that is very physically demanding, and deal with the typical CF regimen in between (4 aresols x 2 day, 2 vest treatments a day, pills, supplements, insurance problems, and then all the other problems/responsibilities associated with being an adult).
Could it be possible that those of us mysteriously still alive, and some thriving, aren't being "awarded", but possibly being punished? Have we been kept here because we haven't learned something and others who have departed us at a younger age learned something that graduates them early? I know that is a metaphysical/spiritual way of looking at it, but the other way falls straight into chaos.
The older I get, and do fairly well, and see more people who I care about (with or without CF) pass away at a younger or equal age, the more I flat out feel guilty for still being here. And to be honest knowing that my health will continue to degrade at some rate over time (that's inevitable), knowing how increasingly grueling the battle will be to just stay functioning, I admittedly sometimes find myself envying those who passed before me, knowing they won't have to deal with that progressively harder regimen.
I've heard/read about survivor guilt when discussing say train or plane accident survivors when many/all of those died around them, but i've never really seen this subject broached when discussing a terminal illness that many people have. Thoughts? Opinions? I'm sure i'll get some text based tomatoes thrown at me for sharing this, and that is fine. But i'm interested if others with this disease have these feelings as well. When I saw debbie had passed, my first thoughts/feelings were (in order): shock/disbelief - emotional hurt - realization of never speaking to her again - anger - "Why her and not me?".