Our Digital Footprint. When a Friend, and a Network, Dies

This poignant post comes from {grow} community member Jenn Whinnem …

Remember Friendster? The social network that predated even MySpace (or am I showing my age?)? At any rate, it shuts down at the end of May, and I’m having a hard time with this.

See, Friendster is my last connection to Curtis, a friend of mine who died nearly eight years ago. That’s why I haven’t been able to bring myself to delete my account, even though Friendster stopped being a truly viable social networking service in 2005 (I think).

I never met Curtis – he was someone I knew through a message board and chat room. This was how I amused myself while I attended a rural college nearly ten years ago. Many of the people I met online became friends in real life.

Curtis was in his early 20s and very, very into music. In fact, he ran the site rantcore.com (no longer available), and it was pretty well known in punk circles back during that different world that was the internet in early 2000’s.

Curtis and I bonded because we were sickies. I have cystic fibrosis and Curtis had something called demyelinating polyneuropathy. This meant his nerve sheaths were destroying themselves, and he was becoming weak enough that he had just started walking with a cane. He was in pain every day.

At one point, he confided in me that he had found a blog (a newish thing, at the time) by a guy with an advanced case of the disease. The post that got to him was the one where the guy purchased a car for the handicapped that would load his wheelchair into the car for him.

When you have a fatal disease, you have these moments where you realize: this is going to happen to me. You feel your mortality. This was one of those moments for Curtis as he realized what his disease was going to do to him. If he did attend one of his beloved punk shows, it would be in a wheelchair. That was, of course, if he could even breathe. Curtis and I talked a long time about what this would mean for him.

And yet, this never happened.

Curtis slipped in the shower and hit his head. He lived alone, so he bled to death. We found out because his girlfriend logged into chat one day to tell us he had died. A friend verified this with the county coroner.

I can’t tell you what this felt like, to grieve for someone I knew but had not met. I talked to Curtis everyday for almost a year. He sent me a .zip file of The Bangs to cheer me up once; I told him stories about my job taking care of the elderly. You can’t tell me that that’s not a friendship.

Curtis died November 25, 2003 – just a few months after Friendster started and we joined. Every year I get a little reminder about his birthday, and I log into Friendster, see his photos, read the funny comments people wrote about him. Friendster shutting down means I lose one more little piece of Curtis.

It’s something that many of us don’t like to think about, but I’m going to ask, because what I learned from Curtis is that it can sneak up on you way before you’re ready for it: what’s your digital legacy? How will we remember you after you die? What do we do when the comments are gone?

Jenn Whinnem is the Communications Officer for the Connecticut Health Foundation (www.cthealth.org). In this role, she is in charge of the web and social media for the foundation. You can find her on Twitter www.twitter.com/jennwhinnem.

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  • Wow, Jenn.  This was a very moving post.  I have an online friend from high school with whom I reconnected after 20+ years.  I feel eternally tied to him because he and I shared a best friend who died almost 6 years ago.  I told him that I would stalk him if he ever un-friended me on FB because he’s one of my remaining links to my friend Marc.  Those are real connections.  Friendster is yours.  I know how sad that must be for you.  

    I also appreciate you sharing  a little bit more of you with us each and every time you write.  You are creating a lovely digital footprint, Jenn.  I consider myself lucky that I have had the opportunity to meet you in real life and hope to continue to build our friendship over the years.  Thank you.

  • I often think of this from the other perspective – the person who passes. How will my digital footprint be managed by my family? How could they possibly do it? User names? Passwords? Blogs, Linkedin, podcasts, Facebook, Twitter and the vast number of little oddball networks and online groups. Do I list all these with detailed login information coupled with my request of what I’d like to happen when I die? Or do I just leave it alone and let it ride?

  • Thanks Erica – I’m glad you know what I mean. At the same time, doesn’t EVERYBODY know what this means, eventually? Doesn’t this happen to everyone? Not being rude, just thinking on one of my favorite rumination topics which is “everybody has something.” Which is not terribly profound. If I may ramble – being diagnosed with a childhood illness tends to label you in a way that some other diseases do not. So it was always this big hairy deal when I would share this with people. But as I’ve gotten older I’ve found out – nearly everybody has some kind of health problem, etc. I ain’t that special.

    So, blah blah, thank you for sharing your friend Erica. And I’m glad I’ve met you too.

  • This touched me to the core.  I had a dear friend; someone who was like a daughter to me, commit suicide last March.  Your post has brought up feelings that arise whenever I’m “reminded”…words, music, connection, photos, online…things I can’t erase, even once erased.  I don’t really have the words right now, other than thank you for sharing; you’ve hit a deep chord.  Kaarina

  • It’s funny you mention this Randy – about three weeks after Curtis passed, he popped up on AIM. I was terrified. Turns out his mother had logged onto his computer and had no idea AIM would auto-launch. At any rate, we had a lovely conversation and she thanked me for the card I sent, but it still spooked the hell out of me.

  • I am so sorry for your loss, Kaarina. You don’t need to have the words – thank YOU for sharing.

  • I experienced something similar on a board.  A board for Disney lovers and Disney Vacation Club Members, actually.  There was a great middle aged, father figure type who loved all things Disney that we all got to know, love, laugh with & and at.  Then one day his daily posts stopped, within a few days his beloved wife logged onto his account to tell us he had suddenly passed!  She felt she knew us all from their conversations as we felt we knew her as well.  We mourned with her and for her.

    Yearly, someone on the board will bump the in loving memory thread up and we all honor his memory.  

    Good post to make you think.  Thank you, Jenn for sharing Curtis with us all!

  • Jennifer, thanks for sharing your friend and this experience. My friend Jayme ( @soulati:twitter ) and I have talked about – how would I know if something happened to you? We’re going to create a service that will notify everyone if you go. If someone already did this they stole our idea and I’m going to get them.

     My aunt is a vacation club member – it’s pretty amazing to go to Disney with her!

  • Such a powerful article.  My friend’s father was deep in to social media and blogging.  When he passed away, my friend took care of closing those accounts.  The one account he could not get access to was LinkedIn and on occasion they’ll email my friend asking him if he knows his deceased father and wants to connect with him.  His blogging sites however are now managed by my friend and he has kept the blog posts because whenever he misses his Dad he says reading them is like he is right there talking to him.

  • In your usual, amazingly poignant and incredibly impressive delivery, Jenn, you pose the questions most of us have no answers for. You share a situation I think about every day — not people passing from my life, but those with whom I’ve made a Twitter connection who have begun to make a tremendous impact in my professional and person live.

    When someone decides to take a back seat and is invisible even for a week, I notice, and I wonder…do I know them well enough to pry and check in and ensure they’re OK? If they weren’t, what the heck would I do; sound an alarm, and then what?

    For those in my new network, can you please put me on the list? One of my dearest friends and colleagues also a past president of the Publicity Club of Chicago (Jeff Bierig) died; I found out via social media and I was very upset. Social media creates a boundary for those who don’t want too much new friendship; but for we who thrive on that it becomes a balancing act to determine how we politely show we care.

  • When my sister passed, I called everyone in her cell phone directory and had no idea who they were. Some knew; some didn’t. It was tough; I can only imagine how spooky this was for you as well as how it provided you with closure and acknowledgment. You also likely had the chance to help Curtis’s mom with your stories about how close you’d been to him.

  • As for me, I never remember you have anything wrong with you. As far as I’m concerned you don’t. You manage yourself impressively well and act pretty normal considering you’re such a freak. (Hey, Jenn told me she was, I didn’t call her that.)

  • If you need help creating the service (an app would be cool) we would love to help! Its a great idea!

    I am so spoiled by DVC, my hubby calls me a Disney Snob! LOL! 🙂

  • I love that your friend kept the blog, Corey. I wish someone had kept rantcore up – it’s not even available on the wayback machine.

    Thank you for reading, Corey!

  • Thanks for your comments, Jayme, that’s so nice of you. You are on my list of course! 

  • Jenn, I have thought about this digital legacy many times.
    Also, if we have a blog, how do we end it if we have already passed? I got that
    answer from a blogger in Vancouver named Derek Miller. He died in May after a
    bout with metastatic colorectal cancer. He wrote his last post in advance of
    his impending death, and told his wife and friends to punish it when he died.
    Jenn, your post reminded me of him. If you want a tear-jerking story of strength,
    his last post can be found at http://www.penmachine.com/

  • Jayme, one of the things I’m constantly doing is “checking in” on my connections just to let them know I’m thinking about them when I do and they’re not around. I don’t think the level of previous acquaintance at first doesn’t matter so much, because if you show you care, that level of acquaintance–and even fondness–shoots through the ceiling. 

    I’ve found out about hard times, business changes, illnesses, family issues, and more, not by saying, “I’m hoping you’re still alive,” but by just dropping a note saying, “I haven’t seen you in a while, and I miss (whatever it is I miss about them). Just wanted to let you know I was thinking about you.” That seems to do it. I’m not able to do this for everyone, and I don’t do it on any regular basis, but when someone I value disappears as you said, I notice, and don’t hesitate, by e-mail or direct message, to drop them a note. 

    And when I do hear of hard times, if I can support them in any way, I do, even with just a kind word and a “how’s it going lately?” note. People like feeling that you have the patience to revisit the issue that’s all they can think about more than once. After the storms I was relieved to see people I remembered as being in those areas tweeting and updating again. 

  • Yes, Jenn, everybody does know, everybody does have something, and it’s something we’ve all got to deal with on a deeper level, for our own sakes and the sakes of the ones we love. 

    Not a single one of has the next moment in time yet, but we’ve all got the things we’ve done, the people we’ve passed by, the choices we’ve made to that have put us in the spots we’re sitting in now. For every situation out of our control there are myriad options yet open to us, as you demonstrate every day.

  • Jenn, this is very poignant indeed.

    I have a similar experience in Facebook. A dear friend passed a couple years ago. Every year on his birthday, a throng of people remember and honor the day in his memory. He will live on in our hearts and souls.

  • You’re absolutely right, Shakirah. Thanks for stopping by.

  • Oh man. I don’t know if I could do that. I feel like there’s a blog post in that – should you write your last blog post now? Sort of like writing your own obit.

    Thank you for weighing in Johnny – gonna go read that now.

  • Wow that would be nuts.

  • I’m speechless Johnny.  What a post.  No words necessary.

  • It’s a nice digital reminder of your friend, isn’t it? Thank you for sharing your friend here, Jeff.

  • What an outstanding post! Not just because it tackles something that we all have to grapple with as we shape and craft our own digital footprint, but because you’re such a spankingly good writer. Every time I read something by you I want to read more. 

    As a PS there was something here that made me think of a poem by Leon Stokesbury called Evening’s End. 

  • Jon, check’s in the mail 😉 Thanks for your compliments.

    Thanks too for sending the poem to me – you might remember I’m a big poetry geek. I love the first page of it – I have to try to find the rest of it. I LOVE this style of writing. THANK YOU!

  • Man, CF is like the LAST thing that makes me the freak that I am! ha ha

  • Dude, that was the last thing I was implying! I think you told me you were freakish and unique before you shared your health history. No matter; LOVE.

  • OK, so Jon is really trying to be complementary of you, Jenn; however, all I could do was laugh my fool head off when I read “spankingly.” (And it’s not even recognized as a word, heh.) I think this goes hand in hand with freakism somehow?

  • Great topic, Jenn. One I’ve done some research on and one there is no standard for…yet. The other fascinating part of this topic is the digital death policies of the platforms where our social accounts live and what they required to do with our information and conversations when we die. How might their policies effect their brand? This is a huge issue that we should be discussing more.

    Not to push my own posts, but fyi; (http://justincaseyouwerewondering.com/2011/05/16/why-you-and-your-company-need-to-think-about-digital-death/). And here is a very informative podcast on the topic from SXSW: (http://schedule.sxsw.com/events/event_IAP6048). Cheers.

  • What an idiot I am – I read it as SPARKLINGLY. ha!

  • Wow Jenn, What an amazing post. Thanks for writing this and damn you for making me cry at work 😉

    I also still have my Friendster account and am sad to see it go even if I don’t use it much. I think that the online friendships that we make can be incredibly influential and long lasting. I have online friends that I have kept in touch with for 15 years; friends that I made on a now defunct BBS (totally aging myself). I think the connection you had with Curtis was lovely and is not diminished by the fact that you didn’t meet in person.

    I do think that social media can play a part in the grieving process, someone’s Facebook page can become a memorial wall of sorts, a place where a community can share the pain of someone’s passing and offer comfort to one another.

  • Justin – your first link didn’t work! Please share again!

  • Elyse – you did see the part where I was amusing myself on a message board ten years ago right?? I think you and I are about the same age. We grew up on Web 1.0! We made online friends way before it was cool!

    Glad you’re in my circle!

  • Awww….I think of this all the time. I wonder about the people I’ve met on twitter and wonder if I’d know if they died, if they were sick. Or if they needed a friend IRL how would I be able to cross the divide and be there.  We take tweets and avatars for granted sometimes – they’ll always be there right? Really great story, thanks for being transparent enough to share.

  • Beautiful, touching post, Jenn. Thank you for sharing this. I know two people now who had Facebook pages and passed away. Their pages became online memorial sites. I’d hate to see them go away. I know you will miss having that Friendster page to go to. It’s wonderful, though, that here it is, eight years later, and you are still keeping Curtis’ memory alive through this post.

  • I think this is what motivated @businessesgrow:disqus  to try to talk on the phone with members of the {grow} community – that realization that we are all real people behind the avatars. It can be easy to forget!

    Always glad to talk about Curtis! Thanks for reading.

  • Jenn, I’m so glad you are in my circle too! Ha ha yes, I did see that. We were into social media before it was social media. LOL. Something about BBS came up at work and one of my young co-workers said. “What is that”. I thought. “Oh no, here we go. Now they think I am the old web lady.” 🙂

  • Aw, thanks Neicole, that’s so nice of you. Now Curtis lives through {grow}. I can’t tell you how funny he would find that.

  • Anonymous

    Jenn,

    I am very touched by your story of your friend Curtis. I’m reminded of a good friend and client I’d known for 20 years that died a couple of years ago. I would only hear from him two or three times a year but each project would start with a friendly phone call followed up by short but usually funny and pleasant emails throughout the days we’d be working on the job for him.

    Over those years I knew him, he dealt with three different kinds of cancer and battled his way through until the fourth finally ended his life. I kept his emails in my active outlook until just recently because for some reason. It was almost like getting one of his unexpected calls to scroll past his emails.

    Well I hope you can somehow save some memories of your friend before they close down friendster and thanks for reminding us how special the digital connections can be for linking us to special people in our far too busy lives.

    It was a pleasure to meet you at the Social Slam event in Knoxville!

  • Thank you Billy, and thank you for sharing your friend too. I’ve gotten such nice stories from everybody today too.

    It was great meeting you too!

  • Wow okay that was a lot of “too” from me.

  • Very moving story. I’ve only lurked on this blog before. But moved to leave a note today as I think of all the blogs I’ve read an the comments that I assume will be there every time I skip across to this page.

  • Glad you came out od stealth mode Stacy!  Thanks for participating. I know it takes time and I don’t take that for granted. Much appreciated!

  • Hi Johnny thank you for remembering Derek Miller.
    I’ve read his post 2 weeks ago, I was speechless.
    It reminds us how much we are human behind our screens and how much internet brought us proximity like any other media before.

  • Anonymous

    Touching story! Thanks a lot for sharing. This story helps to remind us that we should enjoy every day.

  • Always glad to pull a lurker out of the woodwork! We’re glad you’re here.

  • Thanks Claude. It’s funny how often we forget this, isn’t it? Thank you for reading about Curtis.

  • Jenn,
    what a truly moving post. There is so much chatter about whether online friends
    are “real friends”; I think your post really just put the whole debate to rest.
    Sorry about your friend and the loss of connection to him. I hope you can find
    other ways to preserve it.

  • Incredible. Thank you for sharing this Johnny.

  • This post is touching on so many levels: the camaraderie of sickies, the closeness possible in online friendships, what happens to our online identities when we go… One thing I find strangely beautiful is that Curtis’ accident means he didn’t have to deteriorate — I believe a higher power might have had something to do with that!

    One thing I’ve realized recently is, the longer we live the more loss we experience. Each one takes a little bit out of us, but it’s most certainly better to have loved and lost. Thank you for sharing!

  • Thanks Adam, that’s so kind of you. I know I saw something about extracting info from Friendster, I just have to get on it to do it. He wrote a funny comment for me on there and I definitely want to keep it.

  • Kellye, thanks for your comment – you know, a friend and I were talking about Curtis recently (because of Friendster dying) and we were wondering aloud about exactly the point you raise, is it good that he didn’t deteriorate? Life being as grey as it is, we couldn’t decide. Of course, we trust that everything worked out the way it was supposed to – higher power, as you say.

    One thing my friend shared was that Curtis had really wanted him to play this one video game. Then he died. So my friend had to go out and get the game immediately and play it until the end. Afterward he thought, why do we feel like we owe the dead? “It’s not like Curtis was nodding his spectral approval every time I leveled up.” I laughed pretty hard over that, but it was so true. Thank you for your kind and insightful comments.

  • Not sure about snob, but WDW addict is probably accurate.

  • Took me a day and another to read and review the comments, gather some thoughts. I don’t have connections like this but a few of my friends, we do miss one or two who left us before this digital, social age… not sure what that would be like. Per the post @JohnnyRusso:disqus shared, not sure I could ever write a last post. But it is something to think about, the digital legacy I’d leave behind, final tweets and all (trying to a avoid silly jokes here). The connections I have made via blogs and Twitter are amazing, and some of them are such special friendships. Online or not, they are REAL which is one reason I don’t like the IRL acronym. Just because we haven’t met in person, people like you Jenn are very real to me. FWIW.

  • A poignant story Jenn, thanks for sharing it.

    I was pondering this question last week. I didn’t arrive at any conclusion though. 
    You never get used to death. People started dying around me from the age of 12, at school. I remember being surprised when I turned 30. I think I’ll be just as surprised when I turn 50. 

    I’d like to leave something behind that speaks to my having been here. I should really make up my mind as to what I want that to be. 

  • I appreciate you taking the time to think about my story, Davina, that’s so nice of you. You are real to me too. Perhaps this is the highest praise we can give each other right now!

  • I’m late to the party because… well, I’m late to the party! I’m only just beginning to know you, Jenn, so I suppose I’m grateful I didn’t have to find out about your illness after a longer acquaintance, thanks to @businessesgrow:disqus . But I did have a bit of backtracking to do, and let me just say I’m glad that whatever careers you decided against (from your post on @soulati:disqus ‘s blog), I’m so glad you decided to be a writer. You were born for it!

    But you also asked a question about digital legacies. I’m thinking about the fact that with every new account or interaction we open, we’ll be known for one thing by some, and for something else by others. Some of us may have quite a hodgepodge of crowds because of our wide variety of interests! So in terms of digital footprints, I think I would rest well knowing I didn’t leave anything behind I’d be ashamed for people of one circle to find out from people in another circle if I were still around.

    In any case, I think you and Mark were determined to make us think outside our tiny little circular routines this week–and well you’ve done!

  • Hi Shakirah! I’m glad you came to the party! I’m glad you liked my musings on the jobs I’ll never have.

    For me Shakirah no matter what will happen when I think of you I will think “bright morning, all” which is just such a beautiful way to start a day.

  • Anonymous

    Jenn/Mark, 

    After finishing reading this post, I flashed back to November of 2001 when both my parents picked me up from school (very unusual for them to do).  With tears in their eyes, they looked at me, and said “Aaron…it’s Ben…” I knew then that my best friend had died. Ben had aplastic anemia, which can be cured through a bone marrow transfusion, but was adopted from South Korea and didn’t know who his real parents were.  I recently connected with Diana and Tim, Ben’s adopted parents, on Facebook, who continue to preserve his legacy by blogging and posting pics up of him on their accounts.

    I also thought about Joanna–a college friend who died last year in a tragic accident.  Her husband continues to update her Facebook account as a means of preserving her memory and working through the grief.

    Admittedly, for me, it’s brought up some feelings that I’ve worked hard to stifle, especially with Ben.  I miss him a lot.  I catch myself wondering at times what would my life have been like if he’d lived through the disease.  Would he have been at my wedding? Would we reminisce about all the Starfox games we played?  It’s difficult to say.  

    But to bring this all to a point–I don’t know what my digital legacy will be, but this has definitely made me think about it and what I can do in the event that something tragic happens.

  • I’m so sorry you lost Ben and Joanna, Aaron. I would have to say, though – don’t stifle – blog. Like me! It sounds flippant, but I don’t mean it that way. Remembering the friends we’ve lost is a great way to keep them alive in our hearts.

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