30 October 2012

Six Degrees of Separation From Caring

I was in a Wal-Mart parking lot in Goose Creek, S.C. when my cell phone rang. It was my roommate from my sophomore year in college, Natalie. We hadn't seen much of one another over the past three years as her study abroad and my graduation a year before her had put literal and figurative distance between us. It stuck me as a bit odd that she was calling out of the blue and even more odd that she was crying.

"I don't know how to tell you this... Gianni was in Bali," she said. 

The statement seemed incomplete. Gianni was my ex-boyfriend. He was from Switzerland. We met at the start of the year, as Natalie, a freshman, was dating Gianni's best friend Gian who was the son of one of her father's business contacts. Gian came from Switzerland to visit Natalie. Gianni, working in Chicago, came down to see Gian. Gianni and I found ourselves often shut out of the dorm room, so spent hours sitting out on the stairwell talking. Just before he left, we traded numbers, but he was due to return to Switzerland in only two weeks time. I didn't think much about any possibilities; however, we talked for hours by phone for each of the five nights following. On the sixth night he called and said, "I've just booked a ticket from Chicago to come see you. I hope that's okay." Four of his last five days in America were spent with me.

Gifted with Frequent Flyer miles and a mother with a romantic heart, I travelled to Switzerland that Christmas break. Natalie was supposed to go with me, but she and Gian hadn't lasted. I flew into Milan, spent the night at Gianni's family's vacation home in Northern Italy before winding through the Alps to his tiny village where I learned to snowboard, ate real fondue, and unwrapped presents around a tree lit with candles. Gianni's family spoke Romansch, one of four national language in Switzerland, derived from Latin and French, yet still not close enough to French to allow me to have any clue of what was being said around me. Thankfully, Gianni spoke seven languages to varying degrees, though his English—honed in Chicago—born a mid-western Yankee accent, while his brother, who studied in Australia, sounded decidedly different. Gianni's sister was kind and knew enough English to help me when I appeared completely lost, but Gianni's cousin—whose English was better than my German—refused to speak to me in anything other than French, which we both had only a moderate command of but nonetheless used to discuss Gaudi architecture while in a snowboarders bar in Davos. It was all very international and chic. Gianni's friends told me that they'd never seen him be as serious about a girl as he was with me. We rang in the year 2000 at a giant bash in Tschierv, hung out in St. Moritz watching fireworks over the lake, wound down the trip with Gianni's return to work with a economics group associated with the University of St. Gallen, and I flew out of Zurich under the watchful eye of guards armed with AK-47s.

Unfortunately, I proved not to be much good at a Transatlantic relationship. There was much back and forth, too many words taken out of context via online chats, and not enough time together. Gianni went to India for work—we were living entirely separate lives. He was able to visit in May for a family beach trip, but by June we were no longer together. It had been a good run. I had a grand story to tell. Gianni, I knew, would continue to travel the world, there was even talk of going back to India. 

When Natalie called two years later, nothing made sense. "Gianni was in Bali," she said. I blinked at the rows of cars lining the asphalt parking lot and was silent. "OK... I don't know what that means," I replied. Natalie's voice cracked, "Haven't you seen the news?" I hadn't. My association with Bali was that it was a pretty nice place to be. Natalie explained there had been a bombing at a nightclub. There were many casualties. Gianni had been there with a friend. The friend escaped but rescuers couldn't even find Gianni's body. There was nothing to confirm his death other than the circumstances of time, and place, and the fact that there was nothing left to bury. 

The bombing, which occurred on Oct. 12, 2002, was the deadliest act of terrorism in Indonesia's history, killing 202 and injuring another 240. Members of the Jemaah Islamiyah group, a violent Islamic group, were convicted in the killings that included a car bomb, a suicide bomber with a backpack bomb, and a smaller bomb outside the U.S. consulate in Denpasar. It has been reported that via tape recording, Osama Bin Laden stated the attacks were the direct result for support of the United States' war on terror and Australia's role in liberating East Timor.  

At first, I had no emotion. I was hollow. I was confused. And then, I was guilty. If we hadn't broken up, Gianni wouldn't have been in Bali. At least, that's what I told myself. My self-blame was a delusion of control. As if I could have prognosticated two years into the future... As if in that two years' time we would have remained a couple... As the militant hatred of a terrorist leader never existed... As if the flutter of a butterfly's wings had no effect...

I followed the story for years—through the naming of victims, through the funerals, through the investigations and arrests, to the eventual death sentences for three of the group's leaders. It was all I could do. The Swiss government had given Gianni a state funeral, even though there wasn't a body. I didn't go. I didn't call. I didn't send a card. I was just the ex-girlfriend. I didn't want to intrude. But at the same time I wondered if they would blame me too—that silly American girl... if only she hadn't broken up with him, none of this would have happened. My acceptance of blame was the closest I could come to willing the situation to change.

There were, of course in America, no yellow ribbons. There were no candle light vigils or memorial services. Six degrees of separation seemed to fail me, and I felt exceedingly alone in my mourning for this act of terror halfway around the world. The deaths were unimportant. They did not effect us — the U.S. of us — and therefore they did not exist. The headlines came and went with little to do. And people moved on. And people forgot. 

Such is our way in times of crisis. We who are not directly affected may turn a blind eye. We may keep going. We may carry on while others are burdened and broken. The fact of the matter is that we can not be everything to everyone all the time. We can not individually reach out our hand to every other hand in need. But where is the line? When do we get involved and when do we determine that it is not our burden to carry? How will our decisions affect the decisions of those in the future when we find ourselves to be the ones in need? We are our brother's keeper only to the extent we wish our brother to keep us. 

I can't help but still look for Gianni. In large crowds, in foreign cities, on public transportation, I imagine that I will see his face, and that after all these years, he will have only been suffering from amnesia. Unsure of his own identity, he will need only to be recognized, and that I will be able to do the one thing that no one else has been able to do... give his mother back her eldest son.


(Written with thoughts of Aldon Hynes and family who lost one of their own in Hurricane Sandy.)

22 October 2012

Bucket List Redux

It's been sixteen months since I began putting together my bucket list. It's a list that I harbor in the back of my mind, sometimes as a source of inspiration, sometimes as a nagging burden, as I ask myself, "What am I doing today to cross something off my list?"

All too often the answer comes back as, "Nothing." I can't help but feel that I am dawdling, that I've grown complacent in my sense of time and purpose. However, looking back on my list, there are so many things that I have done within the sixteen months since first putting the list together that I never would have thought to put on the list—but in retrospect could have, had I known they were even possible.

I am reminded of Errol Morris' New York Time's column, "The Anosognosic’s Dilemma: Something’s Wrong but You’ll Never Know What It Is," which references Donald Rumsfeld's rather infamous quote from a 2002 NATO press conference, “There are known unknowns. That is to say, there are things we now know we don’t know. But there are also unknown unknowns. These are the things we do not know we don’t know.” Give Rumsfeld all the grief you will, his statement is factual, astute, and characterized by the type of self-aware honesty that too few of us hold—there are things we know, there are things that we know we don't know, and there are things that are so far outside our frame of reference that we don't even know that we don't know them.

Sixteen months ago, I was a writer who also had an extensive history as a patient. I knew I had some knowledge to share. I knew I wanted to help others navigate the patient experience. I didn't know what an ePatient was, let alone that I was one. I didn't know that there was an entire world of social media dedicated to healthcare. I didn't know that my ideas, my opinions, my words would take me 5,596.5 miles from Palo Alto to Paris, to HealthCamp DC the Kaiser Permanente Center for Total Health in Washington, D.C., to Kansas City, M.O. and Cerner's riverside educational facility for Regina Holliday's Partnership With Patients Summit. I didn't know I would find others who care deeply about talking about advance planning and facing our fears of death with a whole heart and an open heart. I didn't know I would meet people who would be more than mentors—but friends. I didn't know that what would be the most significant part of my life's work had yet to reveal itself.

In retrospect, my bucket list thereby seems naive. What should I make of the fact that I have accomplished so many great things that were not on the list and yet many of things that are on the list still need to be done—while others need be removed for they are no longer something I desire? Indeed the list is of my own creation, and I am the only one to whom I am beholden. Yet I can not help but think that we can not successfully force our hearts to be linear creatures. We must balance that which we (think we) know that we want with that which we do not yet know that we want. We must live with passion and pursue happiness in a way that gives meaning to our life.


The Bucket List Redux

1. Pet a tiger

2. Get more than a magazine article published — preferably a book

3. Write a book

4. Take Travis to London

5. Go horseback riding in Big Sky country

6. Visit Scandinavia — horseback ride through Sweden and Copenhagen, Denmark

7. Visit Athens, Greece

8. Have a ROCKIN’ wedding anniversary/recommitment — 2013

9. Learn to Latin dance — and do it well

10. Learn how to make really awesome Asian dumplings

11. Eat fresh lobster in Maine

12. Effectively tell someone off/stand up for someone in public and in the moment

13. Drive the entire length of the Blue Ridge Parkway

14. Snorkel at Stingray City in Grand Caymans

15. Cruise in and explore the Caribbean — 2013

16. Go to the National Cherry Festival in Traverse City, Michigan (July)

17. Go to Whiting, Indiana’s Pierogi Festival (July) — 2013

18. Have an extreme spa day – 2+ hour massage, mani, pedi, facial, body scrub

19. Pay for something random for a random deserving person

20. Learn to play the hammered dulcimer

21. Wear an expensive beaded dress for a fancy dinner date and evening out

22. Raise awareness of whatever disease I am finally diagnosed with — DONE/DOING

23. Participate in research to help with the diagnosis of my disease — DONE/DOING

24. Help teach other patients to be proactive and involved in their healthcare — DONE/DOING

25. Ensure our financial security by living debt-free and investing well

26. Finish my master’s degree at UNC-Greensboro — DONE

27. STRICKEN FROM LIST

28. Be the subject of/inspiration for a piece of artwork — DONE

29. Landscape the backyard to be more of a place for ourselves and guests to enjoy

30. See the Grand Canyon — DONE

31. Develop a running list of National Parks visited and continue to add to that list including Yosemite, Yellowstone, Bryce Canyon, Zion, Arches

32. See Beck in concert

... more to come!

13 October 2012

Lungs Like a Sponge - or - Lower Lobe Overthrown

Post-surgery, there was fluid on my lungs. They'd already threatened me with the administration of Lasix, a diuretic drug that for some reason greatly disagreed with my stomach, if I didn't make more use of my spirometer.

I hated spirometers. I'd hated them since four years prior when an eight-hour surgery led to fluid collection on my left lung. Every hour I was to suck deeply on the spirometer's mouthpiece for ten breaths, which measured my total lung capacity and tore at the limits of my swollen belly stitched together along the length of a fifteen-inch incision that traced the curves of my rib cage. Every hour I complained bitterly. Every hour my father told me to—rather appropriately—suck it up. I challenged him he could only continue to admonish me if he knew exactly what he was talking about and demanded that he perform the requisite ten breaths. A healthy lot, he consented, only going slightly cross-eyed and light-headed after the seventh or so breath. "That's hard," he said. "I know," I replied. We agreed to play spirometer gin—loser had to take ten breaths. Unfortunately, he was better at cards than me. 

Back in the hospital for a nephrectomy and once again with juicy lungs, the spirometer again became my nemesis. I could feel the wetness and hear the telltale rattle. I tried to cough but was unable to get much force behind it unless my belly was braced with a pillow, making it a two-person job. My husband held the pillow while I hacked and horked as much as possible into a wad of tissues. The sputum was pink. 

Eyes wide, I held out my hands offering the spattered tissues up as some kind of horrible prize. "Is that blood?" my husband asked. Terrified, I rang for the nurse. "Yes, may I help you?" asked the voice over the intercom. "I'm coughing up blood," I stated, my voice about an octave higher than normal. The nurse hurried in, looked at the tissues, and within moments a portable x-ray machine was perched over my bed, films shoved behind my back for exposure. The two technicians skuttled off with their machine and their images. The husband and I blinked nervously. The nurse appeared in the doorway. "Wait a minute. Didn't you eat a cherry popsicle an hour ago?" she asked. My face was blank. "Oh my gosh," I said. "Oh my gosh. Yes, I did. I am so sorry." Thankfully the nurse smiled, she appeared relieved rather than angry. "I'm so glad you thought of that," I said. Who knows what we would have thought had I eaten a grape one. 

Last week the month's extensive travel gave way to exhaustion immediately upon arriving home from the airport on Thursday. I slept solid until Saturday, joined my parents for pizza, and returned home to bed. Sunday brought a 102 degree fever with chills and chest congestion. Nevertheless, I failed to think it was much more than my run of the mill cold progression. I thought that surely I could hork out the brown and green evil that was in my lungs on my own. By Tuesday afternoon, I called my GP's office and left a miserable sounding message asking for advice. My doctor's assistant called back, took some more information, consulted with the doctor, and recommended I go to urgent care or the ER for a chest xray.  

It was sound advice that I didn't follow for another two days. To go would have meant a) leaving the house, b) choosing between the local urgent care in which I had only the mildest confidence or the region's major ER twenty minutes away, c) most likely getting a prescription for antibiotics, which I didn't want after having been on four courses in the past month already, or d) an expensive and time-consuming admission. Truthfully, none of my "logic" bore merit, and despite coughing up yellow sputum laced with red—I'd been drinking Crystal Light I said—I waited until I was exhausted and gasping for breath upon just the slightest exertion to go to urgent care. They took a chest xray. It revealed pneumonia of the right lower lobe. 

I'm back on antibiotics—and will be for the next eight days. My body is sore from coughing, and I wheeze like a kazoo. They say that even healthy people may feel a general malaise for up to a month, and so for now, I'm doing what I can to hold our home's large pieces of furniture in place by lying motionless on them for hours. The cats think this is fantastic. My spirometer is in the hall closet. Perhaps I should go use it. 

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.