Head Up; Heart Strong #MedX
Images by Gilles Frydman
As I waited nervously back-stage to deliver my Ignite speech at the Stanford Medicine X conference last week, I watched the speaker before me on the monitor. His name was Matthew Dudley, a family medicine trained physician, who was sharing his story of acute myeloid leukemia (AML) and his stem cell transplant. His story was searingly honest and when he finished there wasn’t a dry eye in the building. I brushed my own tears away from my eyes and gave Matt a big hug as he came backstage. The only way I made it on the front stage was to repeat the following words from his speech
Head Up; Heart Strong
Head up; heart strong – these words have echoed through my head and heart on the long plane ride home and are still echoing now. I’ve been to many, many conferences in the past few years, but believe me this conference is like no other. I’ve been accused of becoming a Med X evangelist on Twitter, but it’s hard not to be when for the first time ever you witness patients accorded VIP status; patients being listened to and their self-care made a priority. I’ve never been at a conference where patients take center stage – I’m used to being the token patient when I speak as a patient advocate at conferences. And each and every one of these patients are articulate, impassioned, and powerful speakers – heads up and hearts strong, brave enough to be vulnerable. I learned that admitting our weaknesses can unite us; making ourselves vulnerable can be a powerful way to cut to the truth of our shared human experience.
There is so much I want to tell you about the people I met and the experiences I had, but the thoughts are crowding my mind such that I can’t get them all down fast enough. For now I will content myself with this brief post and will come back and add more impressions later.
I am indebted to Gilles Frydman, co-founder with Roni Zeiger of Smart Patients who took these pictures of myself and Matt sharing our stories with the following observation:
“This couple of photos of e-patients presenters at Stanford Medicine X reminded me of Susan Sontag’s quote:
To take a photograph is to participate in another person’s mortality, vulnerability, mutability. Precisely by slicing out this moment and freezing it, all photographs testify to time’s relentless melt.
The active presence of all the e-patients make Medicine X different on so many levels. I’m convinced that the repeated vision of forceful people telling their medical stories, and showing us, in parallel, how they looked at some of their most difficult moments, profoundly changes not just the content but also the entire dynamic of the conference.”
Matt blew my doors off. Doctor as patient is a powerful story theme, never gets old. I plan on asking Matt to share his story, and his voice, in my hospital medicine journo work in coming months, since he’s a hospitalist …
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As patients we have so much to offer when we tell our stories.. I was quite saddened that at the Lymphedema conference in NZ this year no patients were asked to speak … I think it is far more powerful for therapists and Drs to hear what it is like to have Lymphedema as I feel it gets minimized!!!
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Helen, not only is it sad, it’s downright wrong! How can we ever make changes unless patients are invited to the table? Have you heard of the “nothing about us, without us” motto? It was started by Dr Lucien Englen in Europe and he confers a “Patients Included” award to conferences that include patients. We have to demand our place at the table. I feel more sure of this than ever after attending Stanford Medicine X this year.
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Oh Marie what an incredible experience. I am so proud to know you I am so sorry I missed joining you at #MedX this year as I had hoped, but my journey at the present time has lead me in a different place. I can’t wait to hear more and will let you know my schedule to see if that’s possible, xoxo – Susan
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Susan, you’ve actually been on my mind a lot – I mentioned you to several people while I was there. We must re-connect soon. I miss you x
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dear Marie,
while reading about your reporting on the Stanford Medicine X conference, I so wished I could have been one of those patients. oh, to get to tell about the most awesome care Hugh and I received, care from every venue of the HC system, in a manner so consistent and one I could never have imagined from my early days as a clinician myself over 30 years ago. to provide the most productive and safe setting, clinicians need to value how much it means to employ therapeutic listening, anticipate patient’s needs, to support one’s caregiver, to demonstrate empathy, to advocate self-care with concrete steps to alleviate burn-out, to take the time to explain (translate) medical information so the layperson can understand it, to make eye contact, to validate fears, and anger, and confusion, and be sincerely open to questions being asked both by the patient and their caregiver – the list goes on and on. touching or holding a frail and shaking hand, and avoiding platitudes – just expressing compassion can mean so much. and clinicians need to know, to be reassured, that if we ask a question to which they don’t know the answer, it’s okay, and actually admirable, to say, “I don’t know – but I will do all I can to find out for you and let you know,”. doctors don’t need to be the gods of all things medical – they just need to know the language of caring and integrate it into their own expertise.
I know I have rambled on – but it’s just so exciting to see what the impact of including patients in these kinds of conferences can have on our well-being, even when in the most dire circumstances. thanks for listening, dear Marie, and thanks to all who participated in Stanford’s Medicine X.
much love,
Karen xoxox
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Head up, heart strong indeed. That is you to a T! Thank you for sharing the behind the scenes view — out front all we saw was your poise & brilliance.
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I’ve only just read this, but it is wonderful. Head up, Heart Strong. A powerful message to carry. And I’m so glad patients are being so well represented. ~Catherine
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