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Grief in the Digital Era: Mourning A Virtual Friend

Many who have experienced it, say that the grief felt when we lose a loved one who we’ve lived with, or met many times, is different from that experienced when a virtual friend dies. So, how do we manage grief when one of our virtual friends passes away? I felt real grief after a forum friend stopped posting on the Breastcancer.org (BCO) Community Forum, where identities are masked by avatars and pen names. In a long-running thread titled, The IBC Lounge, her last post, in October 2019, announced:

“I've received the "nothing more they can do" speech. Referring to curative chemo. Well, we knew this already, but now what?”

Many inflammatory breast cancer (IBC) patients had been posting on the forum, and its previous iterations, for years. Every so often an avatar and accompanied postings would disappear. Mostly, we assumed the worst, although this need not even have been the case. Sometimes, rarely, a relative would post with the news that a forum member had passed.

Can you mourn someone you’ve never met, without knowing a real name, or even seeing a photograph of them? How many air-hugs is equal spending even five minutes with the real person? Can empathy translate into love for a person going through a treatment that you know has serious side effects and, often, a very poor prognosis? Finally, how on earth do you reach any semblance of closure when you just know this is a person you’re sure you’ll never hear from again? And how might this absence of identity be reformed, in your mind, if the real person behind the avatar was ever revealed?

Virtual relationships

There are more and more internet relationships formed these days, as social media becomes such a ubiquitous virtual meeting place. People of all ages, ethnicities, genders, and backgrounds share their interests, thoughts, hobbies, and friendships. Health matters on forums and social media sites like Twitter and Facebook have become a hive of online activity that knows no geographic boundaries. In a world where social media connects as much as 70 percent of the population in some countries, we can find ourselves with hundreds of acquaintances. In my area of patient advocate interest, breast cancer, virtual strangers spend much time in daily communication discussing the most intimate details of diagnosis and treatment and offering support. So, we build up a picture of our virtual friends that sustains us in our conversations. However, a death finds us grieving in a vacuum. Very often even our real-life friends and relatives have trouble empathizing with us, because they are unsure about how our feelings could possibly be manifested, and they are unable to offer genuine grief support.

A true friend

For me, and many others on this BCO forum thread, one member stood out. Using the screen name, Amarantha, and diagnosed with IBC in 2014, she joined the forum with an open and inquisitive mind, a cheerful disposition, and always retaining her dignity and humor. She was looking for patient experiences and recommendations as she negotiated the French Medical system. It was soon obvious that Amarantha was in all sorts of medical trouble, as treatment after treatment failed her, and she went through dreadful periods of pain and suffering, between the bouts of better health that followed the many different chemotherapy drugs she was receiving. This went on for five years. Incredibly, all this time, she would come back to the forum to keep us updated and, amazingly, have kind words and support others with their own medical dramas.

Since the dozens of Amarantha’s posts are still online at the BCO IBC Lounge, I read them all to inform this discussion, to confirm my constructed view of her, and to look for clues to her real identity. I really was not happy with the limited biographical detail I had on such an impressive person. After all, when text is all you have as a reminder of a friend, then it's only words my surviving forum friends and I have to remember Amarantha by.

Stage IV diagnosis

Over the years of her communications, forum members learned more and more about her and the distressing, but all too typical, a predicament she found herself after a stage IV diagnosis. Determined to keep the forum members up to date, she quickly indicated her good knowledge of the treatment details. Amarantha was such a good writer, so honest, thoughtful of others, and completely open about herself and her grueling treatment. She gave so much of herself, describing, without pity or rancor, her path through what can only be described as the treatment from Hell. A summary of her many posts can be found here. This was her last post in October 2019:

“I've received the "nothing more they can do" speech. Referring to curative chemo. Well, we knew this already, but now what?”

Did she die? All indications were that she did since her doctors told her they had no more treatments. In any case, Amarantha was as dead for me as she was alive. Along with many others, I responded to her posts, laughed at her jokes, empathized with her treatment, helped her as she bounced medical questions around, and we all provided a fraternity of like-minded patients doing nothing but our best to sort out the medical messes we were all in. Never once was there a desire for sympathy, never once bid she seek sympathy.

The revelation

Unbeknownst to me, several other of her BCO friends were curious about Amarantha’s fate. Searching her posts thoroughly, looking for clues as to her identity, I found one mention of her Christian name, and the website she wrote opera reviews for. Voilà, Paula G. was an American living in France, working as an Opera singer and, later, as an opera reviewer. Paula was fondly remembered: "Paula G. wrote as she lived, and as she sang, with joy and a huge smile."

And her husband, Alain, wrote:

"November 11, 2019. Paula passed away. She left very slowly, without opening her eyes, just stopping breathing, with a beautiful calm face. All of you who knew her know what we have lost: passionate about paleontology, IT expert, fierce, poet, journalist, photographer, wonderful singer, speaking five languages, became a fine medievalist, cheerful, gregarious, a lover of France who left the doctors and nurses a memory dazzled by her kindness and courage. Thank you to all who loved and encouraged her. Alain."

Her friends on BCO also loved her hugely. Amarantha, Paula, is no longer with us, and our grief is omnipresent. Although it may be diminished with time, we have her, now, evermore completely in our minds and hearts.

Editor's Note: Paula's last name has been removed from this post for privacy reasons.

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