My sister Jessica passed away in January 2013 aged just 31, due to rejection complications from a double lung transplant.
That transplant was necessary because Jessica had cystic fibrosis (CF), a progressive genetic disease that impacts primarily the respiratory and digestive systems.
It’s a condition that affects approximately 70,000 people worldwide
Like my sister. And like me.
I am still alive, mostly due to a combination of luck with regards to severity, and the advent of life-changing medications.
But my sister’s life wasn’t defined by her condition, and this article isn’t about her death.
It’s about the evidence she left on the world, whether physical or digital.
And thanks to new Twitter rules, that digital evidence is disappearing.
Like a lot of people from our generation, we were big users of the app, although I used it more and continue to be ‘terminally online’, while Jessica, who was a year younger than me, used hers more sparingly.
But still she existed there, a virtual outline of her life for four years, the dotted lines of a person persisting beyond her mortal form.
When I saw Twitter owner Elon Musk’s post about the enacting of a plan to ‘purge’ inactive accounts, I immediately went to Jessica’s page to see. And it was gone.
All of it. With a note saying it had ‘Violated Twitter Rules,’ which quite frankly seemed impossible seeing as it was still up as of two days before with nothing new posted (for obvious reasons.)
When she passed away, I was devastated.
I was unable to function at work, ultimately leaving my job of 10 years.
Friends and loved ones were neglected as I was circling in my own grief rather than trying to find solace in others.
I eventually channelled this all into music, writing song after song to try to help understand why this happened, why she wasn’t here. I still do occasionally. Jessica is in a lot of what I do.
So yes, it hurt, but knowing there was some bit of her left I could occasionally look at, between Twitter and Facebook, gave me some form of comfort.
In 2019, when this very plan was first suggested by then-Twitter leadership, the outcry from relatives of late users, including me, was loud enough that they backed down and left things alone.
But in announcing this revived policy, Twitter also, notably, did not put a plan in place like Facebook has to create legacy pages, which makes sure the profiles remain online for people to view.
Elon Musk has said Twitter will ‘archive’ pages, but I’ve yet to see any evidence of when this will happen, or how it will work.
Frankly, I have little faith in him following up on his own promises.
From verification changes to revealing details of Twitter’s algorithm, he’s failed to keep his word thus far, instead focusing on posting memes, antagonising those he personally dislikes, and allowing some of the worst users to run rampant with hatred and abuse on the platform.
Seeing Jessica’s page disappear, I was furious.
In anger, I posted a tweet to Musk, essentially calling him to task for this. In the replies, I was confronted with a mixture of people consoling me, excoriating me, questioning my story’s validity, and making me relive the anger and sadness and grief over and over.
I thought I was just screaming into the void, but the void screamed back. As it got louder and louder, and each iteration just made the emotions increase, it became a feedback loop of anxiety and anger. I muted the post because it got to be too much.
I don’t know which was more upsetting to me, the absence of the profile, the suddenness of it, or the way people reacted to my understandable anger at the abrupt loss of this source of comfort.
Twitter, which has been a refuge for me in the past 15 years, where I have made a community of people who feel like friends I’ve met offline, has for me become a harsh wasteland of negativity and despair.
I have gone through many iterations of myself in that time, through severe illness, loss, grieving, joy, marriage, separation, transition, new starts, old beginnings. All documented through this online storybook.
But now that book is being ruined by Elon Musk – who has shown a remarkable absence of empathy and compassion for anyone or thing he can’t use somehow.
I doubt his response to those asking to restore the accounts of their much-missed relatives will be any different.
I have my memories of my sister. She exists in my mind, in a photograph of her vibrancy and zest for living.
Since she died, I’ve held tightly on to the bits of her that exist in a more tangible form so that the photograph in my mind’s eye disintegrates more slowly.
There just now happens to be one less avenue for this. And I’ll have to deal with that. But that doesn’t mean I’m not angry.
I hope when I’m gone from this plane of existence (later rather than sooner) that the photograph of me stays in focus as long as possible, through the memories of those who know and love me, and through the digital shadow I’ve left.
My sister’s shadow has grown dimmer, but she still shines bright in me. For now, and for as long as I can still remember.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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