06 October 2012

"Tears can be easily misdiagnosed." A hurt blogger hurts back.

I don't remember how I met her—what hashtag or retweet sucked me in. I just remember the name—HurtBlogger. She'd named her condition Arthur (as in arthritis), liked the color orange, and didn't gloss over the grimy bits when it came to sharing what it was like to live as a chronic disease patient while still existing as a seemingly healthy, brilliant and funny young woman on the verge of getting married. We were cross-continent avatars, names without faces. And then, as all relationships are tend to do, it changed. I started looking for her tweets, keeping tabs on the arthritis flares, hospitalizations, and infusions.

It wasn't until I was standing in baggage claim at SFO on my way to Medicine X that I finally heard her voice. A tweet had come through asking, simply enough, if I would call her. Instantly, I suspected the problem—a family issue at home, once pressing, had become urgent. I tucked myself into a corner, dialed a strange number, and with a finger pressed into my ear waited. She was crying. Alone in a hotel room, she was torn and overwhelmed. There was no awkwardness between us as I did what little I could do. I told her not to worry about the conference, that whatever needed to happen would, that we would make it work. I asked her if she needed to go home. I said I would be there as soon as I could. 

The traffic from SFO to Palo Alto moved in starts and fits. Frustrated by my delay, I called for reinforcements, tapped into the ePatient band of brothers, asked one of my people already on site—a three-time breast cancer survivor—to become one of HurtBlogger's people until I could get there. There was no hesitation. The reply was, "Thank you for asking." Patients—people who the healthcare system has classified by diseases and treatments—are among the first to scratch out labels, push aside privacy curtains, and reach out to one another. We recognize in strangers what we have seen in ourselves—in our eyes, in our words, in our physical movements. We need not explain the enormity of the two-word phrase, "I'm tired." For that we are united, a band of warriors wearing the open-backed gown as our armor, carrying our resilience as our weapons.

A message came through. Mission accomplished. Situation improved. I arrived with just moments to spare before the evening's ePatient dinner. In the hotel lobby there were hugs all around as I was greeted by familiar faces and Twitter avatars become real live humans. Rather than walk or catch the first ride to the restaurant, I waited with a fellow rare disease patient. Diagnosed with cyroglobulinemia, she bundled herself against the cool Palo Alto air. By the time we arrived at dinner, conversation was in full swing. And so it was that I remained feeling a bit behind. Opportunities lost. Meetings missed. Acquaintances unmade. I could have, and should have, done so much more. 

One thing I didn't do was tweet HurtBlogger's speech. I couldn't. I was repeatedly swallowing my heart back into my chest. I didn't tell her I was proud of her. I sent it to her in a message. And I didn't stick around during the following break. I went to the bathroom, locked the stall door, and clutched my arms around my body as I heaved great racking sobs. I said to the ceiling tiles and to myself, "It just means so much." This thing, these things that we're doing, these experiences that we are sharing, these changes that we are demanding—they are the "it" that all means so much, almost too much because it is such that we must not fail. 

I allowed myself one minute and two tears. Any more would have made my eyes puffy and my emotions would be given away. I walked to the sink, washed my hands, and blew my nose. "Are you OK?" asked a fellow ePatient walking in the door. "Britt's speech made me cry too." I smiled widely from behind my paper towel, gave my nose one more rub, and walked out the door. 

In the next few hours as Medicine X drew to a close, I engaged in a closed door meeting to set in motion planning for next year's ePatient program at Medicine X; a quick conversation with Kevin Clauson in the wings to stir interest in banding together a patient, an academic, and a clinical innovation team; and an impromptu stage appearance with fellow ePatients about our experience at the world-class design firm IDEO. I hugged goodbyes, told @AngryT2Diabetic to stay out of trouble (though perhaps I should have said to stay in trouble), accepted a white gerber daisy as a parting gift, and walked alone, past the retro exterior of Stanford's medical school, past the emergency room, back into the real world. 

We must never measure our impact by only the things we see, though we may measure others' by what we are made to feel.

1 comment:

  1. I love this post. You've captured the gorgeous truth of online community among those of us with chronic illness. And how blessed am I to be led to read it while debating, "Home Depot or crash on the couch."

    ReplyDelete

"We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world." — Buddha