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A New Experience for Me

July 4, 2010 14 Comments
Tombstone Humor

Tombstone Humor by ~MikeHungerford

I half-joked a little while ago about how mad I’d be if I add someone to my blogroll and they kick off – because I don’t handle death well. I know I don’t, but the reason is a bit strange and indecipherable exactly why.

Death has surrounded me, yet evaded me my whole life. It’s been in my immediate family with my sister, but I was too young to remember. It’s been in my surrounding family, but people I wasn’t really attached to. I’ve spent countless hours in the funeral home growing up as my grandparents’ siblings passed through.

Aside from that, there have only been two people close to me who have died. One in a car accident and one after 2-3 years fighting multiple myeloma. I think the accident was harder. He was 3 years younger than me and had just gotten engaged. The memorial service was literally gut-wrenching. Our church was packed with everyone, including full fireman detail since he was a volunteer fireman. There was no preparation for his death, he was in the prime of his life in perfect condition, and then he was gone.

Now that I’ve started this site, I’ve exposed myself to a high-risk population. Death was one reason I had insulated myself from CF people. I don’t like to lose things, especially people. I find it hard to make friends, so it’s a big investment of time and emotions for me to put myself out there. Beautiful showed me Conner’s site after they posted that they were bringing him home to “be comfortable until the end.” I didn’t want to go back to the site. You’ve seen my tribute to Conner. That sucked – it was a rough day for me, but not like it would be if I’d known him or the family or even if I’d been commenting back and forth with his family on the site.

This week I read about Jill. She was in the hospital with Stacey Bene, and Stacey just got discharged on Wednesday. Jill never left the hospital. This is too many, too close. I didn’t know Jill, but given another few weeks of blogging and Facebooking, I wonder if we would have met.

I wonder if I can do this, this getting to know CFers. I have purposefully avoided this situation my entire life, but now I’ve been considering even meeting some of these CF people. Shoot, Jess lives in Tampa somewhere. We’re probably like 20 minutes away from each other. Do I risk getting to know CFers?

Is it one thing to have friends and then find out they have something life-threatening and another thing to seek out friends who have something life-threatening? Do people really seek out AIDS or ALS patients to be friends with? Maybe it’s a brotherhood and sisterhood thing that I should be sticking to for the cause, but I’m still processing a bunch of emotions around making friends who die at a higher rate than the population average.

How do you feel about it, fibros and cysters? Do you even think about the future that way? Certainly our significant others thought about it but made a choice in favor of sticking with us, but it’s not like they were out cruising the bars looking for a CFer to befriend. Chime in, let’s have a talk.

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  • Cysticgal

    I have to say, that finding out about Jill was worse for me than finding out about Connor, because in the fall, I was in respiratory failure, sitting in my room, doing my nebs and no one knew what was about to happen to me, They almost intubated me, and I almost suffered the same fate, but didn't because my best friend was there to help articulate my wishes and another friend rushed my mother into town as I entered ICU. Finding out, though I knew it, — I guess I should say, being reminded that CF deaths can be sudden- it scares me. Makes me feel powerless, even though I know I'm not, but at my stage- you know, I'm the same as Jill right now. I'm blabbering. Not sure this is the response you were looking for but it's all I got!

  • http://www.cffatboy.com/ Jesse Petersen

    Thanks for dropping a comment, cyster. Yeah, that's what I'm looking for. I
    would be completely oblivious to Eva, Conner, and Jill if it wasn't for this
    site and the blog scouring we do now… that was what got me thinking.

  • http://twitter.com/cfstinabug Stina

    About 3 years ago, I met a CF girl in the hospital that I was at. We were both admitted during the same time. She however, was much worse off. Unfortunately she passed away 5 months later. I was absolutely devastated. She was 3 years younger than me. It took me probably about a year to process everything. I had major depression. The thing was that I had only had a handful of conversations with her. I think what was so hard about her passing was the realization that it could have been me. I had to spend some time grieving and accepting the reality of my OWN life. I love that quote that you have, “Death has surrounded me, yet evaded me my whole life.” There is so much truth in that for CFers. We're told our whole lives that we're going to die, but somehow we sit here blogging still. Yes, we have lost a few and with each loss, although heart-broken, I am more motivated than ever to kick CF's ASS and cure this damn disease! But I have to say, despite the surrounding death, there is so much life. I have found that the CF community has more life than most other people that I meet. CF keeps us humbled, and although it often limits us, it also provides unique opportunities for us. Although it is very difficult to watch fellow CFers pass away, I wouldn't give up my relationship with this community for the life of me. But, that's just me.

  • http://www.cffatboy.com/ Jesse Petersen

    Well said. Good food for thought there, Stina. Maybe we'll see if Jess makes her way around here and we'll set up a Panera day with Beautiful after all.

  • Staceyb123

    I have to say I've been thinking about this a lot too, but I think I have come to terms with the fact that the support I get from the community outweighs the sadness. I feel like I am surrounded by a group of people who truly “get” me in a way that my other “friends” don't. That has meant the world to me. The one's who don't make it have made me want to work harder, forget my treatments less and made me live more vivaciously. Honestly, even though sometimes I have to take a break from reading about it, I feel blessed to be connected with so many other kindred spirits! Thanks for linking to my blog ;-)

  • http://www.cffatboy.com/ Jesse Petersen

    You make some great points, Stacey. Perhaps friends with breaks is a good solution. I'll admit that the first time Unknown started leaving comments, I knew he “got” me like no one I'd encountered before blogging about my CF.

    I've been blogging for 4-5 years and had done fewer than 10 posts out of 1,800 on CF, so this site is completely a new leaf for me and this post was “here's to hoping it doesn't come back to bite me.”

    Glad to have you around. Stick around. For a long time, m'kay?

  • Juli

    I think about this a lot, more than I would like to…..what if i suddenly went online and someone wasnt there…..i worry about my CF friends more than I worry about others….when I dont see them online for a while it gets worse….how would we know? who would tell us what happened? what went wrong? is it even our right as “online” friends to even be privy to such personal, private information….and if its not within our rights, how do you ever have closure? you're not alone in your thoughts. I do believe, however, that the benefits outweigh the risks. having the understanding, in my opinion, is an immeasurable advantage….we fight, we love, we rise, and we fall as one…..and im proud to be a part of it. much love! ~j

  • http://www.cffatboy.com/ Jesse Petersen

    Ah, more good points. Beautiful and I have discussed it a bit before, and
    she has my passwords to get on Facebook and my blogs if anything should
    happen that I can't be there to update. I don't see a difference between an
    online friend who comes into your “house” every day to read what is going on
    and a RL friend who calls or e-mails when they didn't see you at school or
    work, so yeah, I think we do become privy to that info.

  • Jerry

    This is a great post and the replies are wonderful.

    Perhaps I'm less qualified to comment than a CF patient would be, but as a CF dad, I've seen more than my share of untimely deaths, including Jesse's older sister. I have to say that I think you're all showing great wisdom in grouping like this for mutual support and even the occasional swift kick for counter-productive attitudes.

    I think your situation is similar to combat soldiers – another group more at risk of sudden death than the general population. It's amazing how quickly they form bonds and how strong those bonds are. It seems that the more dangerous their tasking, the closer they become. And when they lose friends, it seems to be extra devastating. But they almost always make new friends. I think that's because our need for communion with people like us is greater (or should be greater) than our fear of loss.

    Your transparency and vulnerability with each other is awesome. It just may be that the encouragement you're offering each other could save lives if it moves someone to take better care of themselves until there is a cure. Keep it up!

  • http://www.cffatboy.com/ Jesse Petersen

    True… Ronnie did show that there is enough about the CF life to keep a site going. It's not that hard to keep it not boring, even not pre/post transplant.

  • Cysticgal

    Also, who says we just have to be ALL CF on our blogs? I love that I'm getting to know so many CFers with so many varied professional, personal lives. A year ago, I never knew I'd know this web hero guru CFFatBoy, for example!!

  • http://www.cffatboy.com/ Jesse Petersen

    Very true, CG, but I'm 90% CFer on this site *because* I have so many other
    sites since I do this for a living. I see no reason for others to vary their
    posts to include their dogs, non-CF kids, or their cars.

  • Jerry

    CG, it has been amazing and wonderful for me to see Jesse come out of his shell. He has revealed stuff here that he just never talked about before. His mom and I used to wonder a lot about what was going on in his head, and now we are learning that it was much as we suspected. What a thrill to see Jesse shaking off the anger and resentment and using his skills and his situation to not only improve his own health, but but help others with the same issues. This is just glorious for me to witness.