kayleesgrandma
New member
What an interesting subject, and very well-thought out. I have my own brand of survivor's guilt--I worry that I may outlive my granddaughter....
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CF survivor guilt
- Thread starter Faust
- Start date
kayleesgrandma
New member
What an interesting subject, and very well-thought out. I have my own brand of survivor's guilt--I worry that I may outlive my granddaughter....
kayleesgrandma
New member
What an interesting subject, and very well-thought out. I have my own brand of survivor's guilt--I worry that I may outlive my granddaughter....
kayleesgrandma
New member
What an interesting subject, and very well-thought out. I have my own brand of survivor's guilt--I worry that I may outlive my granddaughter....
blkmsmommy
New member
i have a lot of guilt myself. i dont have cf but my baby girl does. she is in the hospital every 3 to 4 months for 14+ days at a time. she is not even 3 yet and already has a port and on some many diffrent meds. i wish it was me and not her. im only 21 myself. i am afraid ill outlive her and thats my biggest fear.
blkmsmommy
New member
i have a lot of guilt myself. i dont have cf but my baby girl does. she is in the hospital every 3 to 4 months for 14+ days at a time. she is not even 3 yet and already has a port and on some many diffrent meds. i wish it was me and not her. im only 21 myself. i am afraid ill outlive her and thats my biggest fear.
blkmsmommy
New member
i have a lot of guilt myself. i dont have cf but my baby girl does. she is in the hospital every 3 to 4 months for 14+ days at a time. she is not even 3 yet and already has a port and on some many diffrent meds. i wish it was me and not her. im only 21 myself. i am afraid ill outlive her and thats my biggest fear.
blkmsmommy
New member
i have a lot of guilt myself. i dont have cf but my baby girl does. she is in the hospital every 3 to 4 months for 14+ days at a time. she is not even 3 yet and already has a port and on some many diffrent meds. i wish it was me and not her. im only 21 myself. i am afraid ill outlive her and thats my biggest fear.
blkmsmommy
New member
i have a lot of guilt myself. i dont have cf but my baby girl does. she is in the hospital every 3 to 4 months for 14+ days at a time. she is not even 3 yet and already has a port and on some many diffrent meds. i wish it was me and not her. im only 21 myself. i am afraid ill outlive her and thats my biggest fear.
blkmsmommy
New member
i have a lot of guilt myself. i dont have cf but my baby girl does. she is in the hospital every 3 to 4 months for 14+ days at a time. she is not even 3 yet and already has a port and on some many diffrent meds. i wish it was me and not her. im only 21 myself. i am afraid ill outlive her and thats my biggest fear.
coltsfan715
New member
I totally agree with your post Sean. I have felt this way many times over the years as friends - both with CF and without - passed on. I went for many years refusing to allow another CFer into my life because the hurt and the guilt was just too much. All of my close friends with CF had passed before I was even 16. I lived my life with CF very much alone until I came to this site about 2 years ago.
Debbie is really the first CFer I have known to pass as an adult. I swear I had been thinking I have this mourning thing down from my childhood and teens and then I came on here yesterday and just sat here in complete and utter shock, anger, despair you name it I probably felt it. I walked around yesterday with periods of happiness but mostly I walked around with a complete lack of feeling. I was lost I didn't know what to think, I couldn't find a reason to smile I just couldn't find a reason for anything. Then even worse I felt guilty for feeling anything at all or doing anything at all.
I remember talking to Debbie when I was going through my transplant evaluation and we talked about her decision not to go for transplant and my decision to go for transplant. We never argued we just wanted to understand the different sides of the situation. I did not know how ill she was until that time - I had always thought for sure she was much healthier than me. Then I realized we were on the same page of this horror story called CF. We were fighting the same battles, but we were taking different roads.
What has hit me so very hard is the quickness with which she was taken from us. She was seemingly doing well in recent months or weeks. I thought things were looking up. Then this "little bump" came along and I thought nothing of it more than she will get meds and recover in time. I dealt with sickness and pushed off treatment last year in May. I just "knew" I could. I knew I could push it off and that I would be okay. Every hospital stay I just knew I would be in for meds and be home and better within a few days. Yes it got harder but I always did get at least a little better. I wrote off my family and friends when they would get too concerned when I got sick - I would say everything will be fine. I never paid attention to how sick I was getting. I think that is what I am grappling with now - there was nothing preventing me from being Debbie. Nothing preventing me from getting a little under the weather and NOT recovering from it.
I was fortunate and I made it to transplant and I have done fine, but damn I think why was it that I, in my naivety, was I always so fortunate. I am thankful that I have been, but bothered that this end had to come so soon for Debbie. Also to add - I had extreme guilt when I had my transplant - like I had betrayed the CF community in a sense and was hesitant to come back to the boards right away. I thought it would be a situation where because I might not be struggling with the same CF lung issues I would not be welcome or wanted. I know that is not the case now, but initially it was the guilt that I had over the whole thing.
I have for many years felt that I had to carry on for "them" for all my friends that are no longer here to carry on. I am the only one left in the local area with memories of the way things were. The doctors are new, the nurses are new, the patients are new. No one in the CF community can remember them anymore, no one but me. I mention them and the names that EVERYONE used to know, the stories that everyone could recall just fade off into the distance and fall on deaf ears. I find I stand alone struggling to remember also and that bothers me. I think that is the guilt that I feel more than anything - the responsibility of wanting to make sure they are not forgotten. To make sure that the way things were is not forgotten. Then I say to myself - whenever I think I can't do it anymore - I have to keep doing it .... there is no one left to remember if it isn't me. When a memory dies with you it makes the need to keep going seem that much greater. I guess that is the way I see it.
Thank you for this post Sean. I don't think you will get many, if any, tomatoes thrown at you at all for this post. Unless of course they are from LittleDebbie herself and in that case I don't think they will be tomatoes but maybe tomato colored stilettos. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Take Care,
Lindsey
Debbie is really the first CFer I have known to pass as an adult. I swear I had been thinking I have this mourning thing down from my childhood and teens and then I came on here yesterday and just sat here in complete and utter shock, anger, despair you name it I probably felt it. I walked around yesterday with periods of happiness but mostly I walked around with a complete lack of feeling. I was lost I didn't know what to think, I couldn't find a reason to smile I just couldn't find a reason for anything. Then even worse I felt guilty for feeling anything at all or doing anything at all.
I remember talking to Debbie when I was going through my transplant evaluation and we talked about her decision not to go for transplant and my decision to go for transplant. We never argued we just wanted to understand the different sides of the situation. I did not know how ill she was until that time - I had always thought for sure she was much healthier than me. Then I realized we were on the same page of this horror story called CF. We were fighting the same battles, but we were taking different roads.
What has hit me so very hard is the quickness with which she was taken from us. She was seemingly doing well in recent months or weeks. I thought things were looking up. Then this "little bump" came along and I thought nothing of it more than she will get meds and recover in time. I dealt with sickness and pushed off treatment last year in May. I just "knew" I could. I knew I could push it off and that I would be okay. Every hospital stay I just knew I would be in for meds and be home and better within a few days. Yes it got harder but I always did get at least a little better. I wrote off my family and friends when they would get too concerned when I got sick - I would say everything will be fine. I never paid attention to how sick I was getting. I think that is what I am grappling with now - there was nothing preventing me from being Debbie. Nothing preventing me from getting a little under the weather and NOT recovering from it.
I was fortunate and I made it to transplant and I have done fine, but damn I think why was it that I, in my naivety, was I always so fortunate. I am thankful that I have been, but bothered that this end had to come so soon for Debbie. Also to add - I had extreme guilt when I had my transplant - like I had betrayed the CF community in a sense and was hesitant to come back to the boards right away. I thought it would be a situation where because I might not be struggling with the same CF lung issues I would not be welcome or wanted. I know that is not the case now, but initially it was the guilt that I had over the whole thing.
I have for many years felt that I had to carry on for "them" for all my friends that are no longer here to carry on. I am the only one left in the local area with memories of the way things were. The doctors are new, the nurses are new, the patients are new. No one in the CF community can remember them anymore, no one but me. I mention them and the names that EVERYONE used to know, the stories that everyone could recall just fade off into the distance and fall on deaf ears. I find I stand alone struggling to remember also and that bothers me. I think that is the guilt that I feel more than anything - the responsibility of wanting to make sure they are not forgotten. To make sure that the way things were is not forgotten. Then I say to myself - whenever I think I can't do it anymore - I have to keep doing it .... there is no one left to remember if it isn't me. When a memory dies with you it makes the need to keep going seem that much greater. I guess that is the way I see it.
Thank you for this post Sean. I don't think you will get many, if any, tomatoes thrown at you at all for this post. Unless of course they are from LittleDebbie herself and in that case I don't think they will be tomatoes but maybe tomato colored stilettos. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Take Care,
Lindsey
coltsfan715
New member
I totally agree with your post Sean. I have felt this way many times over the years as friends - both with CF and without - passed on. I went for many years refusing to allow another CFer into my life because the hurt and the guilt was just too much. All of my close friends with CF had passed before I was even 16. I lived my life with CF very much alone until I came to this site about 2 years ago.
Debbie is really the first CFer I have known to pass as an adult. I swear I had been thinking I have this mourning thing down from my childhood and teens and then I came on here yesterday and just sat here in complete and utter shock, anger, despair you name it I probably felt it. I walked around yesterday with periods of happiness but mostly I walked around with a complete lack of feeling. I was lost I didn't know what to think, I couldn't find a reason to smile I just couldn't find a reason for anything. Then even worse I felt guilty for feeling anything at all or doing anything at all.
I remember talking to Debbie when I was going through my transplant evaluation and we talked about her decision not to go for transplant and my decision to go for transplant. We never argued we just wanted to understand the different sides of the situation. I did not know how ill she was until that time - I had always thought for sure she was much healthier than me. Then I realized we were on the same page of this horror story called CF. We were fighting the same battles, but we were taking different roads.
What has hit me so very hard is the quickness with which she was taken from us. She was seemingly doing well in recent months or weeks. I thought things were looking up. Then this "little bump" came along and I thought nothing of it more than she will get meds and recover in time. I dealt with sickness and pushed off treatment last year in May. I just "knew" I could. I knew I could push it off and that I would be okay. Every hospital stay I just knew I would be in for meds and be home and better within a few days. Yes it got harder but I always did get at least a little better. I wrote off my family and friends when they would get too concerned when I got sick - I would say everything will be fine. I never paid attention to how sick I was getting. I think that is what I am grappling with now - there was nothing preventing me from being Debbie. Nothing preventing me from getting a little under the weather and NOT recovering from it.
I was fortunate and I made it to transplant and I have done fine, but damn I think why was it that I, in my naivety, was I always so fortunate. I am thankful that I have been, but bothered that this end had to come so soon for Debbie. Also to add - I had extreme guilt when I had my transplant - like I had betrayed the CF community in a sense and was hesitant to come back to the boards right away. I thought it would be a situation where because I might not be struggling with the same CF lung issues I would not be welcome or wanted. I know that is not the case now, but initially it was the guilt that I had over the whole thing.
I have for many years felt that I had to carry on for "them" for all my friends that are no longer here to carry on. I am the only one left in the local area with memories of the way things were. The doctors are new, the nurses are new, the patients are new. No one in the CF community can remember them anymore, no one but me. I mention them and the names that EVERYONE used to know, the stories that everyone could recall just fade off into the distance and fall on deaf ears. I find I stand alone struggling to remember also and that bothers me. I think that is the guilt that I feel more than anything - the responsibility of wanting to make sure they are not forgotten. To make sure that the way things were is not forgotten. Then I say to myself - whenever I think I can't do it anymore - I have to keep doing it .... there is no one left to remember if it isn't me. When a memory dies with you it makes the need to keep going seem that much greater. I guess that is the way I see it.
Thank you for this post Sean. I don't think you will get many, if any, tomatoes thrown at you at all for this post. Unless of course they are from LittleDebbie herself and in that case I don't think they will be tomatoes but maybe tomato colored stilettos. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Take Care,
Lindsey
Debbie is really the first CFer I have known to pass as an adult. I swear I had been thinking I have this mourning thing down from my childhood and teens and then I came on here yesterday and just sat here in complete and utter shock, anger, despair you name it I probably felt it. I walked around yesterday with periods of happiness but mostly I walked around with a complete lack of feeling. I was lost I didn't know what to think, I couldn't find a reason to smile I just couldn't find a reason for anything. Then even worse I felt guilty for feeling anything at all or doing anything at all.
I remember talking to Debbie when I was going through my transplant evaluation and we talked about her decision not to go for transplant and my decision to go for transplant. We never argued we just wanted to understand the different sides of the situation. I did not know how ill she was until that time - I had always thought for sure she was much healthier than me. Then I realized we were on the same page of this horror story called CF. We were fighting the same battles, but we were taking different roads.
What has hit me so very hard is the quickness with which she was taken from us. She was seemingly doing well in recent months or weeks. I thought things were looking up. Then this "little bump" came along and I thought nothing of it more than she will get meds and recover in time. I dealt with sickness and pushed off treatment last year in May. I just "knew" I could. I knew I could push it off and that I would be okay. Every hospital stay I just knew I would be in for meds and be home and better within a few days. Yes it got harder but I always did get at least a little better. I wrote off my family and friends when they would get too concerned when I got sick - I would say everything will be fine. I never paid attention to how sick I was getting. I think that is what I am grappling with now - there was nothing preventing me from being Debbie. Nothing preventing me from getting a little under the weather and NOT recovering from it.
I was fortunate and I made it to transplant and I have done fine, but damn I think why was it that I, in my naivety, was I always so fortunate. I am thankful that I have been, but bothered that this end had to come so soon for Debbie. Also to add - I had extreme guilt when I had my transplant - like I had betrayed the CF community in a sense and was hesitant to come back to the boards right away. I thought it would be a situation where because I might not be struggling with the same CF lung issues I would not be welcome or wanted. I know that is not the case now, but initially it was the guilt that I had over the whole thing.
I have for many years felt that I had to carry on for "them" for all my friends that are no longer here to carry on. I am the only one left in the local area with memories of the way things were. The doctors are new, the nurses are new, the patients are new. No one in the CF community can remember them anymore, no one but me. I mention them and the names that EVERYONE used to know, the stories that everyone could recall just fade off into the distance and fall on deaf ears. I find I stand alone struggling to remember also and that bothers me. I think that is the guilt that I feel more than anything - the responsibility of wanting to make sure they are not forgotten. To make sure that the way things were is not forgotten. Then I say to myself - whenever I think I can't do it anymore - I have to keep doing it .... there is no one left to remember if it isn't me. When a memory dies with you it makes the need to keep going seem that much greater. I guess that is the way I see it.
Thank you for this post Sean. I don't think you will get many, if any, tomatoes thrown at you at all for this post. Unless of course they are from LittleDebbie herself and in that case I don't think they will be tomatoes but maybe tomato colored stilettos. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Take Care,
Lindsey
coltsfan715
New member
I totally agree with your post Sean. I have felt this way many times over the years as friends - both with CF and without - passed on. I went for many years refusing to allow another CFer into my life because the hurt and the guilt was just too much. All of my close friends with CF had passed before I was even 16. I lived my life with CF very much alone until I came to this site about 2 years ago.
Debbie is really the first CFer I have known to pass as an adult. I swear I had been thinking I have this mourning thing down from my childhood and teens and then I came on here yesterday and just sat here in complete and utter shock, anger, despair you name it I probably felt it. I walked around yesterday with periods of happiness but mostly I walked around with a complete lack of feeling. I was lost I didn't know what to think, I couldn't find a reason to smile I just couldn't find a reason for anything. Then even worse I felt guilty for feeling anything at all or doing anything at all.
I remember talking to Debbie when I was going through my transplant evaluation and we talked about her decision not to go for transplant and my decision to go for transplant. We never argued we just wanted to understand the different sides of the situation. I did not know how ill she was until that time - I had always thought for sure she was much healthier than me. Then I realized we were on the same page of this horror story called CF. We were fighting the same battles, but we were taking different roads.
What has hit me so very hard is the quickness with which she was taken from us. She was seemingly doing well in recent months or weeks. I thought things were looking up. Then this "little bump" came along and I thought nothing of it more than she will get meds and recover in time. I dealt with sickness and pushed off treatment last year in May. I just "knew" I could. I knew I could push it off and that I would be okay. Every hospital stay I just knew I would be in for meds and be home and better within a few days. Yes it got harder but I always did get at least a little better. I wrote off my family and friends when they would get too concerned when I got sick - I would say everything will be fine. I never paid attention to how sick I was getting. I think that is what I am grappling with now - there was nothing preventing me from being Debbie. Nothing preventing me from getting a little under the weather and NOT recovering from it.
I was fortunate and I made it to transplant and I have done fine, but damn I think why was it that I, in my naivety, was I always so fortunate. I am thankful that I have been, but bothered that this end had to come so soon for Debbie. Also to add - I had extreme guilt when I had my transplant - like I had betrayed the CF community in a sense and was hesitant to come back to the boards right away. I thought it would be a situation where because I might not be struggling with the same CF lung issues I would not be welcome or wanted. I know that is not the case now, but initially it was the guilt that I had over the whole thing.
I have for many years felt that I had to carry on for "them" for all my friends that are no longer here to carry on. I am the only one left in the local area with memories of the way things were. The doctors are new, the nurses are new, the patients are new. No one in the CF community can remember them anymore, no one but me. I mention them and the names that EVERYONE used to know, the stories that everyone could recall just fade off into the distance and fall on deaf ears. I find I stand alone struggling to remember also and that bothers me. I think that is the guilt that I feel more than anything - the responsibility of wanting to make sure they are not forgotten. To make sure that the way things were is not forgotten. Then I say to myself - whenever I think I can't do it anymore - I have to keep doing it .... there is no one left to remember if it isn't me. When a memory dies with you it makes the need to keep going seem that much greater. I guess that is the way I see it.
Thank you for this post Sean. I don't think you will get many, if any, tomatoes thrown at you at all for this post. Unless of course they are from LittleDebbie herself and in that case I don't think they will be tomatoes but maybe tomato colored stilettos. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Take Care,
Lindsey
Debbie is really the first CFer I have known to pass as an adult. I swear I had been thinking I have this mourning thing down from my childhood and teens and then I came on here yesterday and just sat here in complete and utter shock, anger, despair you name it I probably felt it. I walked around yesterday with periods of happiness but mostly I walked around with a complete lack of feeling. I was lost I didn't know what to think, I couldn't find a reason to smile I just couldn't find a reason for anything. Then even worse I felt guilty for feeling anything at all or doing anything at all.
I remember talking to Debbie when I was going through my transplant evaluation and we talked about her decision not to go for transplant and my decision to go for transplant. We never argued we just wanted to understand the different sides of the situation. I did not know how ill she was until that time - I had always thought for sure she was much healthier than me. Then I realized we were on the same page of this horror story called CF. We were fighting the same battles, but we were taking different roads.
What has hit me so very hard is the quickness with which she was taken from us. She was seemingly doing well in recent months or weeks. I thought things were looking up. Then this "little bump" came along and I thought nothing of it more than she will get meds and recover in time. I dealt with sickness and pushed off treatment last year in May. I just "knew" I could. I knew I could push it off and that I would be okay. Every hospital stay I just knew I would be in for meds and be home and better within a few days. Yes it got harder but I always did get at least a little better. I wrote off my family and friends when they would get too concerned when I got sick - I would say everything will be fine. I never paid attention to how sick I was getting. I think that is what I am grappling with now - there was nothing preventing me from being Debbie. Nothing preventing me from getting a little under the weather and NOT recovering from it.
I was fortunate and I made it to transplant and I have done fine, but damn I think why was it that I, in my naivety, was I always so fortunate. I am thankful that I have been, but bothered that this end had to come so soon for Debbie. Also to add - I had extreme guilt when I had my transplant - like I had betrayed the CF community in a sense and was hesitant to come back to the boards right away. I thought it would be a situation where because I might not be struggling with the same CF lung issues I would not be welcome or wanted. I know that is not the case now, but initially it was the guilt that I had over the whole thing.
I have for many years felt that I had to carry on for "them" for all my friends that are no longer here to carry on. I am the only one left in the local area with memories of the way things were. The doctors are new, the nurses are new, the patients are new. No one in the CF community can remember them anymore, no one but me. I mention them and the names that EVERYONE used to know, the stories that everyone could recall just fade off into the distance and fall on deaf ears. I find I stand alone struggling to remember also and that bothers me. I think that is the guilt that I feel more than anything - the responsibility of wanting to make sure they are not forgotten. To make sure that the way things were is not forgotten. Then I say to myself - whenever I think I can't do it anymore - I have to keep doing it .... there is no one left to remember if it isn't me. When a memory dies with you it makes the need to keep going seem that much greater. I guess that is the way I see it.
Thank you for this post Sean. I don't think you will get many, if any, tomatoes thrown at you at all for this post. Unless of course they are from LittleDebbie herself and in that case I don't think they will be tomatoes but maybe tomato colored stilettos. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Take Care,
Lindsey
coltsfan715
New member
I totally agree with your post Sean. I have felt this way many times over the years as friends - both with CF and without - passed on. I went for many years refusing to allow another CFer into my life because the hurt and the guilt was just too much. All of my close friends with CF had passed before I was even 16. I lived my life with CF very much alone until I came to this site about 2 years ago.
Debbie is really the first CFer I have known to pass as an adult. I swear I had been thinking I have this mourning thing down from my childhood and teens and then I came on here yesterday and just sat here in complete and utter shock, anger, despair you name it I probably felt it. I walked around yesterday with periods of happiness but mostly I walked around with a complete lack of feeling. I was lost I didn't know what to think, I couldn't find a reason to smile I just couldn't find a reason for anything. Then even worse I felt guilty for feeling anything at all or doing anything at all.
I remember talking to Debbie when I was going through my transplant evaluation and we talked about her decision not to go for transplant and my decision to go for transplant. We never argued we just wanted to understand the different sides of the situation. I did not know how ill she was until that time - I had always thought for sure she was much healthier than me. Then I realized we were on the same page of this horror story called CF. We were fighting the same battles, but we were taking different roads.
What has hit me so very hard is the quickness with which she was taken from us. She was seemingly doing well in recent months or weeks. I thought things were looking up. Then this "little bump" came along and I thought nothing of it more than she will get meds and recover in time. I dealt with sickness and pushed off treatment last year in May. I just "knew" I could. I knew I could push it off and that I would be okay. Every hospital stay I just knew I would be in for meds and be home and better within a few days. Yes it got harder but I always did get at least a little better. I wrote off my family and friends when they would get too concerned when I got sick - I would say everything will be fine. I never paid attention to how sick I was getting. I think that is what I am grappling with now - there was nothing preventing me from being Debbie. Nothing preventing me from getting a little under the weather and NOT recovering from it.
I was fortunate and I made it to transplant and I have done fine, but damn I think why was it that I, in my naivety, was I always so fortunate. I am thankful that I have been, but bothered that this end had to come so soon for Debbie. Also to add - I had extreme guilt when I had my transplant - like I had betrayed the CF community in a sense and was hesitant to come back to the boards right away. I thought it would be a situation where because I might not be struggling with the same CF lung issues I would not be welcome or wanted. I know that is not the case now, but initially it was the guilt that I had over the whole thing.
I have for many years felt that I had to carry on for "them" for all my friends that are no longer here to carry on. I am the only one left in the local area with memories of the way things were. The doctors are new, the nurses are new, the patients are new. No one in the CF community can remember them anymore, no one but me. I mention them and the names that EVERYONE used to know, the stories that everyone could recall just fade off into the distance and fall on deaf ears. I find I stand alone struggling to remember also and that bothers me. I think that is the guilt that I feel more than anything - the responsibility of wanting to make sure they are not forgotten. To make sure that the way things were is not forgotten. Then I say to myself - whenever I think I can't do it anymore - I have to keep doing it .... there is no one left to remember if it isn't me. When a memory dies with you it makes the need to keep going seem that much greater. I guess that is the way I see it.
Thank you for this post Sean. I don't think you will get many, if any, tomatoes thrown at you at all for this post. Unless of course they are from LittleDebbie herself and in that case I don't think they will be tomatoes but maybe tomato colored stilettos. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Take Care,
Lindsey
Debbie is really the first CFer I have known to pass as an adult. I swear I had been thinking I have this mourning thing down from my childhood and teens and then I came on here yesterday and just sat here in complete and utter shock, anger, despair you name it I probably felt it. I walked around yesterday with periods of happiness but mostly I walked around with a complete lack of feeling. I was lost I didn't know what to think, I couldn't find a reason to smile I just couldn't find a reason for anything. Then even worse I felt guilty for feeling anything at all or doing anything at all.
I remember talking to Debbie when I was going through my transplant evaluation and we talked about her decision not to go for transplant and my decision to go for transplant. We never argued we just wanted to understand the different sides of the situation. I did not know how ill she was until that time - I had always thought for sure she was much healthier than me. Then I realized we were on the same page of this horror story called CF. We were fighting the same battles, but we were taking different roads.
What has hit me so very hard is the quickness with which she was taken from us. She was seemingly doing well in recent months or weeks. I thought things were looking up. Then this "little bump" came along and I thought nothing of it more than she will get meds and recover in time. I dealt with sickness and pushed off treatment last year in May. I just "knew" I could. I knew I could push it off and that I would be okay. Every hospital stay I just knew I would be in for meds and be home and better within a few days. Yes it got harder but I always did get at least a little better. I wrote off my family and friends when they would get too concerned when I got sick - I would say everything will be fine. I never paid attention to how sick I was getting. I think that is what I am grappling with now - there was nothing preventing me from being Debbie. Nothing preventing me from getting a little under the weather and NOT recovering from it.
I was fortunate and I made it to transplant and I have done fine, but damn I think why was it that I, in my naivety, was I always so fortunate. I am thankful that I have been, but bothered that this end had to come so soon for Debbie. Also to add - I had extreme guilt when I had my transplant - like I had betrayed the CF community in a sense and was hesitant to come back to the boards right away. I thought it would be a situation where because I might not be struggling with the same CF lung issues I would not be welcome or wanted. I know that is not the case now, but initially it was the guilt that I had over the whole thing.
I have for many years felt that I had to carry on for "them" for all my friends that are no longer here to carry on. I am the only one left in the local area with memories of the way things were. The doctors are new, the nurses are new, the patients are new. No one in the CF community can remember them anymore, no one but me. I mention them and the names that EVERYONE used to know, the stories that everyone could recall just fade off into the distance and fall on deaf ears. I find I stand alone struggling to remember also and that bothers me. I think that is the guilt that I feel more than anything - the responsibility of wanting to make sure they are not forgotten. To make sure that the way things were is not forgotten. Then I say to myself - whenever I think I can't do it anymore - I have to keep doing it .... there is no one left to remember if it isn't me. When a memory dies with you it makes the need to keep going seem that much greater. I guess that is the way I see it.
Thank you for this post Sean. I don't think you will get many, if any, tomatoes thrown at you at all for this post. Unless of course they are from LittleDebbie herself and in that case I don't think they will be tomatoes but maybe tomato colored stilettos. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Take Care,
Lindsey