Monday, October 19, 2009

Do We "Domesticate" Death in the CF Community???

Last week I read an article that got me really thinking. It was splattered with ethical dilemmas and question arousing issues. Read THIS article first, read the blog, and then share your thoughts...

The CF community is faced with questions and situations that could never be explained or understood by others. For me, one of the most interesting is the concept of expecting and accepting death from a young age. This article mentioning trying to "domesticate" death and talking about it to the extent that you're almost too comfortable with it. If you're anything like Ronnie and I, it's not discussed very often, but it's understood and becomes a factor in many decisions. Ronnie has never pictured himself being an old man, but expects to live a long life...a result of years of knowing that CF shortens your life. While I teeter between expecting and hoping for the ideal, long life together, and envisioning losing him at a young age. I think for me, it's a coping method. I tend to get my head wrapped around something so much so that I am disappointed when it goes any other way, and want to make sure that that is not the case in this situation. And while Ronnie is healthy, we both fully grasp how fleeting that health could potentially be. We discussed early on in our relationship the possibly of death at an early age...a conversation not had by many couples in their 20s. A conversation we hope is completely hypothetical. A concept we understand could be a reality. What are your thoughts? Is it unhealthy to talk too much about death. Does talking about it enough make you too comfortable with it?

This article also uncovers the issue of remarrying. If your spouse dies, at any age, at what point, if any, is it ok to move on; to allow yourself to love again? I think the answer is different for everyone, but what is my answer? I'm not sure. I wouldn't say to Ronnie that I'd never remarry. That's a promise I don't know if I could or should make. How do you navigate a second relationship when you haven't let go of a first? Is there a way to remain in love with one person while loving another? All questions I don't think anyone has the "right" answer to, but I'd love to hear your thoughts.

The last interesting theme of the article is the moral dilemma of using frozen sperm from a deceased husband, after remarrying with two children. This is something I've never thought about. Interesting predicament. Just thought I'd open up conversation about it...but I have no thoughts of my own to add!

There sure is a lot of room for discussion with many of the issues this article unfolds. I'm sure the topics are ones you've thought about at one point or another. I'd love to hear your thoughts.
Pontificated by Mandi
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Katelyn · 806 weeks ago

I think the issue regarding death is a touch a go for many people. My opinion is that it should be discussed, however, for each person it is a different timing. Growing up it wasn't discussed because there was no need for it and my parents knew that I would come into my own and realize it. It was a difficult process and one that frequently has it's ups and downs.

I've only been in one, genuinely serious relationship and the topic of bringing up the severity of having CF and the nature of the disease was hard, but more so because it hurt. The man I was in a relationship with supported me but he hurt for me. He never said he was scared, but that there were moments when he wouldn't know what to do because it would creep up on him when he least expected it.

I think the attitude of the patient with CF has a lot to do with how interpersonal relationships form and grow concerning the issue of an early death. I don't think it should be an issue to dwell on, but avoiding it all together is, in my opinion, not a wise decision. I also think, however, that one's view on Chris, death, and heaven play an integral role in acceptance.

That was so much longer than I thought it would be. I wanted to let you know that the sperm bit totally threw me off! But I guess it's no different than eggs... right?
1 reply · active 806 weeks ago
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Laura · 806 weeks ago

Wow. That was a great article. Thank you so much for sharing that, Mandi. Since I started dating Mike, I feel like I've known the facts about CF lifespan... but it's never sunk in. I'm 22, he's 27, were both enjoying our lives. Death isn't something we are thinking about at these ages, even though we probably should discuss it more than we do. It just seems like something so distant, something we don't have to be concerned with yet. This article put a lot of things into perspective for me.

The sperm issue is interesting. I can understand her wanting to keep her husband's sperm, but I can also understand her wanting to part with it after she has remarried, had two children, etc. That is one of those decisions no one ever expects to have to make.
1 reply · active 806 weeks ago
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jdemott · 806 weeks ago

Heavy questions.

With a four-year-old child with CF, who has relatively good health, my wife and I have not given much serious though to his death, let alone the other considerations the article stirs up, many of which would not apply to us.

There is a contemporary Christian song by Jeremy Camp that we like, "Give Me Jesus." One day, when it was playing in the car, my wife mentioned that she would want the song played at our son's funeral. I think that was the most "serious" statement ever made about his mortality. It's not that we don't know it's out there, but we've certainly never made plans for it. Somehow, though, that comment seemed like a plan of sorts. We moved right past it, without giving it attention. However, the next time I heard the song, I got teary thinking about the prospect.

For topics this serious and potentially overwhelming, I think the amount of attention given to them should be commensurate with the applicability. For now, regarding my son's mortality, I hope that discussing it much is not needed anytime soon.
1 reply · active 806 weeks ago
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Joshland Writer · 806 weeks ago

All of these decisions are based on each individual relationships, so who am I to comment on someone else's decisions. I can comment on my own though...

Regardless of the illness...CF, Cancer, etc...too many spouses are left alone and feeling guilty about finding love after they've lost their one and only. We don't talk of death very often in our house. When the topic does come up, we've decided we would want the other to be happy and live their life. I know I would always be her first love, so she shouldn't feel guilty for loving me while finding happiness with someone new after I'm gone. It would be no different if something were to happen to her and I was left alone. She would want me to do be happy as well.

Kids are a different story. We waffle back and forth about having them. We feel we'd make good parents, but there are so many variables to think about that sometimes it's a little overwhelming. My biggest concern is knowing that my life will be shorter than the average parent's life. The fact that I might pass away in the midst of my child growing up might not be fair to them. I didn't have a dad around for a large part of my life, so I know what they might miss out on and that breaks my heart. On the other hand, we'd would love to have a little one running around that would benefit from the love of two parents for however long I am here. And, if I were to die early, my wife has said that a little one would be a wonderful gift she would have from our relationship. Whatever our decision, it will be the right one for us.

I don't think it matters what way you create your family...adoption, in vitro, foster family, or artificial insemination...as long as they are made with smart decisions and a lot of love, then everything will work out.

As far as having a child with my sperm after I die...As long as that child was a part of my family as well as my wife's new family I would have no issues with it. I have no doubt that my wife and her new spouse would love that child unconditionally. She would make a good decision based on the situation.
1 reply · active 806 weeks ago
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Rob · 806 weeks ago

My name is Rob and i am married to Nicole, who has posted a guest blog on here called "how i increased my lung function". I wanted to post my perspective on the death issue. I cant say that Nicole and I have talked about it much although it has been mentioned a few times, of course if you are married or dating someone with CF than you must have the conversation at some point. If any of you have read my wifes blog you will know that I am in the Army currently serving in Iraq. Death for me unfortunately has become common place as I have lost more close friends than some one my age should and so for me it has become a bit domesticated. When i think about my wife dieing I oddly dont find it hard to grasp because of the all death I have seen in my life so far. Now some of you might think that is horrible of me, but understand that losing people the way I have lost them during war time takes a bit of the sorrow out of it. In combat when someone dies you dont have too much time to grieve because the mission must continue and so life continues imedietly as well. .
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Rob · 806 weeks ago

This is not to say they arent missed dearly, but you cant sit around and think too much about it because of the situation you are in and so yAlthough I realize that losing my wife is not the same I have nothing else to go off of except what I have experienced with death so far. When I think about losing my wife it upsets me that I dont feel as upset about it right now as I think I should because of the amount of death I have seen so far. I know that I will miss my wife whom I love more than anything else in this world but for me death has become to common. I guess to sum it all up, thinking about my wife dieing upsets me more than I can explain so I relate it to how I have felt already and try to believe that I will just get on with life right away. Although I know that wont be the case.
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niki36 · 806 weeks ago

So, I read this post this morning and was pretty much left speechless. It took me a while to think of how I felt and put it in to words. I showed the article to Rob, and he left his post above. I understand how he feels about death in the military being common..just as all of us who have lost so many CF friends know. We hear about it, feel sad, say a prayer, and move on with our day. Of course we think about them and miss them, but it is different then most people our age treat death. On the other hand, in my opinion it is far different then feelings towards our spouse or significant other. Being a CFer with a husband deployed, we are both in the situation of "what if something happens and we lose that person at a young age?" I don't like to think or talk about losing my husband, although I have to say, regarding the frozen sperm issue..if something DID happen, I would want to still have his child and keep a part of him with me. I do, however, want to talk to him about my future and what could happen, but he usually brushes it off and says that it won't happen to me. His denial frustrates me because I've dealt with the idea my whole life and I don't try to avoid it. I do my best to stay healthy and I have a positive attitude, but it is not a naive one. I think the thought of it upsets Rob so much that he can't talk to me about it. For us, it is hard to find a compromise between acknowledging reality and ignoring it and wishing for the best. I think for a lot of couples in this situation, it is a very difficult topic, but I do feel it is important for both people to get their feelings out. Nobody wants to be in the position after it is too late to talk, about what the other person would want or how they felt.

~nicole
1 reply · active 806 weeks ago
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Lindsey Ford · 806 weeks ago

Thank you Erin!! Mandi, although I appreciate your article I think you and your boyfriend need to not dwell on death. There are different severities of CF, and with todays medicine you can not stamp people with CF as having a shortened life span anymore. Growing up it was always known to believe that the life expectancy was 30yrs. I will be 30 yrs old in February (Yikes) and have all intentions on reaching it, as well as, the next average of 37.5 yrs. I believe there will be a cure in my lifetime, and I do not think it is just wishful thinking. I appreciate your efforts on the conversation of CF death, but I do, however, believe your conversation topic has been done and beaten to death (no pun). Instead we need to have more conversations and education of control, importance of medication, and how far we have come. As a mother with CF I got angry about your article. I felt that you had stamped my lifespan because I have CF. I got angry for personal reasons and for parents who have children with CF. I try to live my life to the fullest everyday with my son and husband, and not let my disease consume me with conversations about my death or shortened life.
2 replies · active 806 weeks ago
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harmstrong · 806 weeks ago

wow tough article to read...i'd say one of the hardest part about having CF is not the dying young part...i mean obviously that sucks majorly...but it's soo tough knowing your going to leave all the people who love you so much behind....i try to put myself in their shoes and think about what it would be like if my boyfriend had CF or put myself in my mom's shoes and my daughter had CF...what it's like for them...i think it would be just the most awful thing....thats kind of what i worry about...not the whole "dying young" thing about myself... this article was very sad to read.
but hey you could be killed walking down the street, so i try not to dwell on it!
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Kirsten Black · 806 weeks ago

I do not have CF, but have worked with the CF community for ten years - first as a camp counselor and then as an employee of the CF Foundation. Many of my friends knew the negative outcomes of the disease because I would share my losses. A few years ago, a friend of mine went into the hospital with end-stage CF and many of his friends from camp came by to say their goodbyes. Those who didn't make it the hospital were there at the funeral - as usual. A friend outside of the CF community said that experience made her realize how different the view of death for those with CF is. It was still scary and sad, of course, but she said that she saw that many of my "kids" (as I called the campers I watched grow up) grew up socializing at funerals like the elderly do.

That experience, and others, are spurring my desire to focus on grief/grieving in CF patients who've experienced a loss of a sibling of friend to the disease and its effect on their adherence to treatment regimens. I'm going back to school to get a master's in child life and this is definitely an area of interest for future studies.
1 reply · active 806 weeks ago
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deb · 806 weeks ago

i try to stay optimistic and i certainly don't dwell on my son dying. BUT, i know that 16 years ago, all the drs were saying we were probably 5 years away from a cure. sure, it could happen, but it also might not. of course, like your mom, ronnie, i don't discuss death with my son at all. but there have been kids that have said things and we certainly discuss his challenges and possibilities and how hard he has to fight to stay as healthy as he can so WHEN a cure is found, he will be able to take full advantage of it. all of this said, the facts remain as they are today. there is no cure and the chances of me outliving him are good. how it has affected me as his mother can't be contained in a comment section of someone's blog. but... this isn't about me (surprise!)

here is what i see in my son and i think it relates to his diagnosis. he is a thrill seeker. he is a dare devil. i have heard him talk to his girlfriend about how he would LOVE to go into combat (if only he were allowed), or be a street cop or something with a high degree of danger. he says he wouldn't be afraid, and i believe him. i often think that he would rather die doing something noble than suffer and be incapacitated.

oh, and mandi, you and ronnie need to get this remarriage thing set in STONE! you do NOT want him coming back to haunt you... you know he will be in your face, girl!

finally, love the new comment section~
2 replies · active 806 weeks ago
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Amanda's avatar

Amanda · 802 weeks ago

great post mandi. i am a 32 cfer, married, with 3 kids. i think about death a lot, but probably not in the way others think about it. i'm not scared of dying at all; i know where i will go and that i have a heavenly father that i can't wait to wrap my arms around. but my main concern is my children and my husband. i worry that my babies won't have enough good memories of us. so i'm constantly telling them how much i love them, telling them the story of their birth, and trying to spend quality time with them.
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Amanda · 802 weeks ago

very often, i don't have the energy to get out and do things physically with them, but we do what we can. And when i'm doing good (not on iv's) we are constantly on th go. my husband, poor thing, is mostly in denial. he refuses to think of me passing away and not growing old with him. he and i started dating when i was 14, so he's been with me through all my ups and downs, and has not waivered one bit in his love for me. so, i do worry very much about him after i am gone. it breaks my heart to think of him going into a hole and not enjoying his life. i know that once i'm gone, he will have a grieving period. but i don't want it to last long. i do want him to find love again, and i do want him to smile and laugh and enjoy every single day he is given. but i do not want to be forgotten either. i want him and my babies to have wonderful funny happy memories to share.

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