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On Death in the Online Community & A Guest Post

When planning Tough Stuff Month, we couldn’t help but think of the ultimate tough topic: death – and hoped that members of our network would feel comfortable sharing their stories and experiences with each other here. After all, Health Activists aren’t afraid to discuss difficult things.

Leading online communities and connecting with people virtually is something we know better than most. And, as members of health communities in particular – discussions of life and death are a bit more prominent than they are other places. One such discussion is: What is it like to lose someone you “know,” who is in your community — but is someone you don’t necessarily know (in real life)? It can still a traumatic, inexplicable, and painful experience. How do we talk about this? And, even more challenging – how can we plan for it?

This is still relatively uncharted territory – but never more important than now. Every day, more people experience life virtually – sharing their milestones with others via social networks and online connections. It’s inevitable that, with each new birth shared online, the other end of the life cycle will begin to appear there as well. Are we ready for it?

Anyone can discuss this on a rhetorical, philosophical level – but we, as Health Activists, can actually talk about it as it directly affects us. This is something we all have or will experience as leaders of online communities – and yet – talking about it is hard. The “second life” we lead — will it be relatively immortal or will it die its own death? It’s a strange, existential conversation. It’s something that concerns me deeply but, even when I’ve tried discussing it with others, it wasn’t received as I wanted it to be. It can come across trite or even silly – when it’s anything but.

This won’t be the last time we discuss the issues of death and dying – because October has just begun – but this is our first foray into the topic. We’ll be hosting a Roundtable specifically dedicated to the topic of losing someone in your online community – and what to do with your own online presence if something happens to you – because these are the sorts of discussions that Health Activists need to have with themselves and with each other.

To help us start this conversation, here is a post that aims to capture the difficult experience of losing someone in your online community as written by Chris Dean. This post was originally published on Chris’s blog Life Your Way on August 25, 2012 and sent to me with a note from Chris: “[This post] was the first death our community had experienced and it hit us all hard. I would be honored if you would re-post it. After all, it’s about honoring the woman we knew as Lexie. I’ve attached a picture her best friend sent us with permission to use.” Thanks, Chris. Here it is. –Amanda




These Things Happen

by Chris Dean



At 2:00 AM this morning I awakened to the text alert on my phone simply BLOWING UP! Earlier in the evening, I’d fallen asleep on the couch while watching TV with the offspring. I rolled out of my nest trying to remember where I’d left the phone so I could shut the stupid thing off. Then I saw the message.

Lexie (AKA @OneBloggerGirl), a woman I had met through Twitter and the shared hashtag #scleroderma, passed away on August 7th. She was 29 years old.

I was speechless. Stunned. Numb.

Then the text from Karen (@KarenOVasquez), a mutual friend, arrived telling me to NOT get on-line until I had called her, but it was too late. I already knew.

At 2:20 I put the coffee on and turned on the computer. By then Karen had already posted a short tribute, “A Tremor InThe Force.” I read it while the coffee was brewing. I followed the embedded link to Lexie’s blog, A Girl at a Crossroad. I re-read her “About Me” section and the posts. There were, after all, only four.

“Hello World!” May 12, 2012: “…One of my missions in life is to rid myself of such negative energy. It’s draining! Life is supposed to be joyous… a celebration even in times of misery and hardship! I want to make an impression, even if it is a small one…”

Then I grabbed a cup and called Karen. The first few minutes of the call were filled with awkward silence while both of us fumbled for the language to express something…anything…we were feeling. After a few false starts, she simply stated, “I’m angry!
I answered, “It’s not fair!

Slowly at first, we began putting together the pieces of the woman we knew. She was diagnoses in 2011 with Scleroderma and MCTD (Mixed Connective Tissue Disorder). Thanks to the wonders of her misdirected immune system she had pulmonary hypertension and pulmonary fibrosis, leaving her needing oxygen 24/7 and a double lung transplant.

Living In Fear…Praying For Strength May 15, 2012: “…It feels so good to be honest and to just let it be known that I am tired. Even though I’m tired, THERE IS NO WAY I AM EVER GOING TO GIVE UP! I have too much to live for. I’m not a girl who has had a lot of luck in life, but I am fortunate in many ways and I am truly blessed. I know who my friends are as well as what it means to be a friend… I have loving family members who extend the support and cheer me up when I need to smile… I am loved…”

Sometimes, our bodies just have no sense of humor. But Lexie did. She worked hard to find the humor (even if we sometimes did get a little dark) in whatever situation she was in. She was a self-proclaimed Nerd and her blog bio talked of her love of animals and horseback riding.

The last time we heard from her was August 4th, three days before she slipped away from us. She was cracking jokes about her Doc’s pants and the fact that she’d been in The Fortress of Solitude (our term for the Hospital) for over a month. Her Doc was telling her she might get to go home on the 10th or 13th. But she also said that there was no laughter in his eyes that day, only concern.

Her final Tweet to us was, “LOL! Thanks! The love keeps me strong!

Karen and I talked for over two hours, trying to make sense out of the senseless, alternating between laughing and silent tears. Together, we tried to picture what she must have looked like. You see, Lexie never bothered to post a profile picture anywhere that we could find. The gold Twitter egg was the only visual we had to go with the woman. The, “…bitch with a heart of gold! In need of a double lung transplant…” as her Twitter bio proclaims.

“Due at The Fortress Of Solitude” May 25, 2012: “…I love the people in my life, and I know they love me wholeheartedly AND unconditionally! This is a journey I’m not meant to take alone, and it’s a journey that is by no means simple or easy. It’s going to be a tough climb, but I’m glad to do it. Now… ON TO THE FORTRESS OF SOLITUDE! Wish me well, you guys!…”

We also discussed the joys as well as the pain of being active in the Chronic Illness Community. It used to be when a friend went MIA for a week or two; you figured it was vacation, busy with kids, school, work, and life in general. In this alternate world, you wait and worry. There are “other” things that could bring about their prolonged silence. Then worry gives way to fear…Then at 2:00 AM the phone begins its Banshee’s keen.

We’ve all heard the fumbled words meant to soothe an aching soul, “Life is so short,” “Taken too soon,” and “These things happen.” And sometimes, they do. Even when it’s not fair.

Since I hung up the phone at 4:30, I’ve read her blog several times, trying to find some clue, some word of comfort. Some connection my brain could grab ahold of to make this come into focus. I have found repeated smiles at her spirit. I have found comfort in her strength and the way she chose to face her life.

A Recap of the Adventures at the Fortress June 26, 2012: “…so how do I alleviate the situation? Jokes! A sense of humor makes any situation comfortable…”

But there are no answers. Maybe someday with all the on-going research into auto immune diseases. Maybe someday in the future, but August 7th is done and gone. For Lexie and too damn many others there will be no answers.

As I went over her “About Me” again, one line jumped out at me and brought the tears back. But as I read it over and over and over, a smile started small and then burst across my face, kinda like the Sun shining during a storm. I’ll end with that quote and the knowledge that she gets her wish. Her voice will always be around to remind us all that life is indeed precious and all too short. And sometimes these things do happen. Rest well, my friend!

“…Blogging is a great way for your voice to be heard without it being meaningless. I get to share my adventures with the world, important information about serious issues, and should anything happen… at least my voice is around to not only bring some awareness, but I get to share my opinion on a lot of things… I promise you all, we’re going to have a blogging-good time…”

For more information on Scleroderma and current research or to find out how you can make a difference, visit the Scleroderma Foundation or The Scleroderma Research Foundation.

 

Lexie

* Lexie’s best friend Claire, the amazingly kind woman who let us know of her passing, was wonderfully kind enough to send us a picture of Lexie. Her smile and beauty are everything I pictured them to be. Thank you for this wonderful gift!




  • Thank you for posting this. I run a large Celiac support group in NYC. I’ve had three of my group members pass away since I became organizer 7 years ago. It was very hard for me to deal with but interesting to see how others from our group responded to these deaths. Since I knew all of these members in person, I grieved in one way. My members knew these people virtually, so they grieved in another. This was really eye-opening to me. It is amazing how strangers in real life can become so intimate online. It is never easy to lose someone, especially in such a tight-knit community.

  • being PCWD parent of a child with diabetes (Type 1) and finding my sanity these past 13yrs via the DOC (Diabetes Online Community) on fb we post blue candles so when you pop on and see them it hits you. I wish details were shared, I know, it’s not appropriate to ask a grieving family, yet somehow I feel at the right time share your journey in detail, tell us those in your DOC and the world, society needs to know on so many levels and as a PCWD I can’t imagine your pain, yet I fear your reality and if your story can teach the world the need for better tools, information, better medical care, or even if it convinces someone that for a child with Type 1 diabetes its so much more than not eating sugar I pray someday we can improve how we get these stories out. This disease is so customary everyone is different but the most important things I have learned about life with D is from those living with it, I take some from this and something from that and build what works for my family and maybe these lives will not be lost in vain. 
    We see the blue candles far to often, and we don’t have the privilege
    to learn from the story. Which unfortunately is still part of the story of living with type 1 diabetes in 2012 losing some way to soon…

  • There are several of us who have had the discussion about how our on-line presence would be handled if something were to happen. We all have friends or family that have agreed to be the ones who log on and leave the messages.
    Yes, it’s a hard reality. But it’s a reality all people everywhere must face one day. Maybe it’s just that we tend to be so much more aware of hoe fragile health and life can be? Maybe we just spemd so much more time contemplating it.
    I don know that Lexie’s best friend, Claire, was a little surprised by the number of people who reached out to her and offered her comfort. Honestly, none of us were sure how to handle that part of it either. Would this young woman want a connection to any of us, since she knew we all lived with the beastie that took her best friend.
    We offered her all the love and support we had, then we stepped back and gave her her breathing room. After a few weeks, Claire began contacting us with her wishe to help raise awareness and make a difference so no one else would have to go through this.
    So many times, I just wish there was a rule book that offered a guide on how to deal with so much of this…
    Thank you again for sharing this! Maybe it’s a little selfish, but shring her story with others eases a small bit of my pain as well.

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