Sunday 25 November 2012

"I told you I was ill". What happens to your blog/community when you die? Day 25 #NHBPM

I had never truly thought about what would happen to my blog, or online life, should I die, until Australian author Sara Douglass died and her blog just disappeared from the web. I'd always enjoyed her books, and read her blog. Sara wrote a really powerful piece on death and dying on her blog. It was one of those pieces that resonates with all who read it and you simply never forget. It examined how society responds to the dying and to those with chronic illness. I never thought that piece would disappear but it did. In fact her entire blog just went and for me it is a great loss. (extracts can be found on this touching piece by Kim Foale, from Frogpondsrock).

This past year death took a dear friend in the Dysautonomia community very unexpectedly, and many other lives have been lost through complications or underlying disorders. All a shock in a disorder that our doctors continually assure us "wont kill you". The loss of Sara Douglass's blog and the now unavoidable reality of the potential mortality of my disorder has made me think more about what I would want to happen to this blog and it's Facebook page.

Should I write them into my will? Who would they naturally go to? Would they even want to take responsibility for either my blog or page? Should it stay up or go offline? So many questions that I really don't have good answers for.

My blog is my baby. It is a written record of my journey over the last few years. It is deeply personal and in a weird way it is me, or at least an extension of me. Thinking about what would happen to it after I'm gone is a little like deciding what I want to happen to my body after death. (For the record I am an organ donor and they can take anything they want, with the exception of my eyes. I just can't come at my eyes being removed. But the rest is up for grabs. What ever's left over can be fried up and my dust sprinkled somewhere. See, this I have thought of.)

Being a personal blog rather than a business makes it harder in some ways. Essentially I am leaving a piece of myself behind and I would like to have a say in what happens. But it's more than that. I know my blog has been a lifeline for many patients and their families. If it were to simply disappear from the web the support it has provided and will potentially continue to provide, would disappear with it.

I look at what I have written and wonder, will it become dated and therefore less useful to others? In many ways it is the content itself that makes that decision for me. From the beginning I made a conscious decision to not offer medical advice or advocate for a particular treatment. I don't talk about medical advances or treatments, except in how they directly effect me. Instead, what I write about is the experience of chronic illness. What it feels like to live with illness day in and day out. There are facts and clinical issues hidden in there but the emotional, social and psychological aspects of illness predominate. In that respect I think that it is possible for my blog to continue to be of use to others long after I'm dead. Whilst the way Dysautonomia is diagnosed and treated will change over time, the emotional response to illness is one which will always remain. The need to express that emotional response with honesty and without shame or embarrassment and thus normalise experiences will also remain. For that reason I would like this blog to remain online after I pass.

As to who would take responsibility, that is harder. My family know me best and I would like it to stay with them. But as to whether they would want to take that on, I don't know. It's not a conversation we have had, but one we will have to have.

I have an online life. Not just this blog, but it's Facebook page, my Twitter account and a number of Dysautonomia and Chronic Illness support groups I am involved with, not to mention my poorly neglected food blog, Google plus, YouTube etc.

Do I keep up my personal Facebook account or shut it down? Many say they like to keep it these up as a place for people to grieve and remember. So much to consider as life on the web effects not only me but others. Personally, if I fall off the perch I don't want grief, I want a life celebrated. I want those who care for me to sing over the top 70s and 80s songs and wear red high heels and dance. I want glitter and feather boas not doom and gloom. Life's to short to be sad.

In a sense that is what I want to direct my posthumous online life. If my blog or all the rest makes people happy. If it brings light and laughter into the world. If it can offer comfort and relief, then keep it going. That is the kind of legacy I'd want to leave. If not, then I hope my family would take the necessary steps to remove my online footprint.

For more information on things to consider regarding what will happen to your online life after death check out this and this.

Michelle :)

* "I told you I was ill" was what comedian Spike Milligan famously said he wanted on his tombstone.

This better be played at my funeral. I want people to dance. Margaritas with little umbrellas, all round.


  1. I would be so sad to have your blog disappear with you, in a way its a double loss...Im sentimental and I know that if that day should come, which makes me cry just thinking about it so dont you dare die on me, I know i would read thru your blog and giggle thru the tears. Its really the only way for us online forever friends to have a way to be a part of your life after your death...its an odd thing Ive discovered. When people I know thru fb and such and even spoke with on the phone suddenly pass, there is nowhere to go with that grief. People in your not cyber life have no clue how deeply we care for our family here on the web, so your grief is not understood by them. Most the time we have no contact with the family and live so far that going to a funeral is out of the picture. So there is just this big hole in our heart. I do go back to pages that still exist of those that i have lost, sometimes they even have farms on farmville and I will visit just as a way to remember. Your blog is has been such a part of my whole process of getting sick, such a guiding light, a kindred spirit found. Its made me laugh till I fell off my chair and cry tears of understanding and empathy. I hope its around forever. But dont you dare die on me, you hear???? Love you babe!

    1. No plans to die any time soon babe. Personally I'm hoping to get to be one of those old crazy ladies that doesn't give a crap what anyone thinks and pinches bums of cute orderlies as they go past :)

      But it is a topic that comes up more and more these days as we put so much online and so many legal aspects to think of. I think when Kathleen passed it really hit home. One day I was talking to her and the next she was gone. It was just so unexpected. It still seems strange. It's never a great topic to think about but it is one we all need to consider at some point. I think about the traditional money side of things (not that we have any) but not normally about what they call "digital assets". Lots of 'grown up' things I need to pull my finger out and really think about.

  2. oh god. would really rather bury my head than think about this one today. please Michelle, keep holding out for that orderly-bum-pinching-crazy-duck phase of your life. please please.


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