Xeni Jardin

Editorial
December 9, 2022 - By Deb Linton rss

Xeni Jardin, one of the most prolific bloggers on the web and Boing Boing‘s star personality for art, culture and politics, has just been diagnosed with breast cancer.

Earlier today Xeni posted an incredible and haunting piece that captures her diagnostic process. Chronicling her initial Yelp search for a mammography center, to her nervous use of twitter in a waiting room, Xeni shares her patient experience through the eyes of a true digital-citizen.

Her account of the medical and non-medical electronic tools around her is particularly interesting. Unceremonious pictures of her ultrasound printouts and GE scanning device are coupled with an emotional description of her attempt to dial a loved one  on her iPhone mid-bioposy. But (like all great Xeni pieces) the story doesn’t get lost or hid behind empty technical jargon despite her appreciation of the technology around her.

So is Xeni’s work an “e-patient” post? It’s difficult to say.

Xeni is the quintessential example of growing group of people that are “e” (empowered / electronic) by default. We often hear of patients turning to technology for the first time as a result of a catastrophic diagnosis. But there are many people, like Xeni, who already use the internet as a key piece of their everyday life.

In a chapter titled Sharing Anchors Community, Clay Shirky writes about the temporary identities assumed by those who regularly share information online explaining how latent groups can have a significant impact where a formalized groups might struggle. In this case, Xeni may not (yet) have assumed the identity of an e-patient. But her post highlights the potential support a latent group of digital-citizens like her might offer the more established e-Patient Movement.

We thank Xeni for publicly sharing this raw and painful process, challenging us to think outside the box and continuing to be a digital leader even in her darkest moments. Our thoughts are with you, Madam Boing.

 

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  • e-Patient Dave

    Thanks for posting Xeni’s and your posts to the SPM listserv.

    I’m in the middle of reading the history of cancer, the Pulitzer book “Emperor of All Maladies.” It’s a brutal story of medicine’s attempts to cope with cancer, starting with raw ignorance (but a sense that they had to do something and progressing into opinionated academic fist-fights (approx 25 years ago) as brutal surgery morphed into increasingly less-brutal chemo. I’m halfway through the book but already it seems to capture all of medicine’s strengths and insanities.

    And much of it, so far, is about breast cancer.

    You’re right, Xeni’s post is pretty potent. She captures the other-worldly experience of discovering you’ve entered this altered reality, absolutely by surprise and unwanted. I imagine she hasn’t seen Susan Sontag’s view, which is pretty similar:

    “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” - Illness As Metaphor (1978)

    As for whether Xeni spoke as an e-patient: IMO, she did that when she shopped for a provider that her peers rated highly. In the clinic itself there wasn’t much chance to be or not be. But I’d bet my bottom dollar that as she considers treatment options, she will connect with her social network and learn everything she effing can, and choose powerfully. That’s the essence of E.

  • http://twitter.com/#!/confluently Carla Berg

    This post was a wonderful umbrella for the root piece at Boing Boing, Deb. Thanks for sharing it on the (@s4pm) mail list. You gave me several things to think about on top of the root experience that Xani shared as one patient.

    I guess that is the point of “e” health to me -that all levels of sharing will be there to be seen when and if we wish. From the root experience through the eyes of one patient, to the collective awareness of a support group or community; from the raw diagnostic data between you and your clinicians to the larger awareness of trends (or tips) that arise from many patients coming together.

    The icing on that many layer cake, to me, is the piece of perspective like yours above that looks at all these layers together while giving links to the others.

    Me, I am just the happy cake consumer for now appreciating all the above ;->

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