As an ‘e-patient’ attendee of the Medicine X conference this year, I had plenty of opportunities to really connect with you other awesome patients. We ate together, chatted at breaks, and commiserated, and as I got to know you casually, I was simultaneously hearing your ‘official’ e-patient stories as one by one you took to the main stage to give ignite talks and appear on panels.
Your stories were raw and painful. You talked publicly in front of an exclusive in-attendance audience (and, because the talks were streaming online, a world-wide audience) about the parts of your lives that were most difficult; that you may hide from friends and co-workers. You were poised, eloquent, moving, articulate speakers, speaking not only about your difficult journeys but about how you’ve coped and taken charge of your situation. I appreciated the opportunity to listen and empathize; I found myself crying during most of your talks.
It is one thing to hear these stories from the stage; to hear the emotion in your voices and to cry with you. But it is another thing to witness up-close your swollen and painful legs; your inability to hold a cup at a coffee break, both cases of severe arthritis. To observe you struggle with multiple breathing crises related to your autoimmune disease (which we share.) To see you two seats over from me coughing and coughing and wondering whether I should go get someone. To read the discomfort on your face, as your prosthetic leg started pinching after hours on your feet.
What I realized is that I have been walking around in a protective box that has often kept me from really – really – empathizing with you. Probably many of us walk around in such boxes. I guess the walls of my box are there partly because of technology and physical distance – the things that keep me from seeing your day-to-day experiences. The walls are also protective and serve to help me maintain some sense of ‘normalcy;’ and anyway, it would be exhausting to constantly feel others’ pain.
But what I found during the conference is that the walls disappeared, and I was suddenly face-to-face with what it really means to live as you. Which cut into something under the surface, and peeled open some of the feelings I usually keep locked deep inside. My heart felt heavy and sad at times.
But another thing happened – a collective lifting up. It happened when you (literally at times) carried each other through your painful symptoms; it happened when you listened to each other’s stories and realized you are not ever alone again. You showed how you’ve innovated; hacked; crowdfunded; organized people both online and off; created something out of nothing except the force of your will and your desire to help another patient. You are powerful, proud, triumphant, and honest while being vulnerable. You made me believe that anything is possible, and you made me understand that I can’t wait around for someone else to do it, that thing, that ‘idea.’ In fact, some of you may not have much time left, so if I want to help you, I’d better hurry the hell up.
Walking away from the conference your emotions were probably a little haywire, if you were anything like me. The good and bad, hopeful and depressing were all swirling around in a confusing fog, and my body and mind were tired, and I found tears spilling down my cheeks at strange moments – on a train – looking out a window – walking down a sidewalk.
But overall, I found that the lightness canceled out the heaviness, and what was left was our strength and purpose and my favorite thing of all – our connected web of hearts, held in the balance by support and love.
yes, i stole that last image from this other post. eternal gratitude to Larry Chu (and staff and helpers and e-patient advisors and everyone)…but especially to Larry for his vision of putting patients at the center of a medical conference; truly revolutionary.