Mixed Emotions—A Christmas Story

When I'm in the kitchen, nothing else exists. There's no stress, no deadlines, no illness, no worry. I commune with pot and spoon and liken my seasoning and stirring to an indoor form of gardening—cheaper than therapy and resulting in good things to eat.

Unlike therapy, when my soul calls out in the dark hours, cooking and gardening don't keep office hours. There's an old R.E.M. song that I can't help but sing when I'm out pulling weeds by the light of the moon, "Though all the feelings that broke through that door/ Just didn't seem to be too real/ The yard is nothing but a fence, the sun just hurts my eyes/ Somewhere it must be time for penitence... Gardening at night..." Brutal cold and whipping winds made gardening impossible Friday night, so instead, I set about baking. Three runs of scones came together as amalgamations of flour, sugar, and half and half. I used my grandmother's cookie cutters to give them shape—candied ginger and coconut diamonds, lemon and cranberry trees, and spicy fruited hearts.

Adorned with a dusting flour—it was after all all-purpose—I curled up on the couch while my scones cooled. The house was warm and smelled of sweetness as the Christmas tree twinkled and the dog on his bed twitched with muffled dreaming barks. It was about this time three years ago that an interventional radiologist was noodling around in my brain's vasculature, weaving a tiny basket of platinum wire into each of three aneurysms. I remember being in the neuro ICU and the nurses there enjoying having an interactive patient—apparently most in the neuro ICU aren't quite so awake and cognizant. I remember having a bit of headache for which they offered me some Tylenol, which didn't quite cut it, so they gave me Vicodin. I remember needing to pee, which given my mobility presented a bit of a quandary as nothing about my glass-walled room's toilet was private, thus a well-placed hovering mom helped to at least moderately preserve my dignity. I remember being given something to eat, which Mom helped feed a tiring me.

Days slipped past, and the next thing I remember is Christmas Eve. My husband and I held Christmas Eve dinner at our new home the first two years we were there. Per tradition from my father's Polish-Czech family, Christmas Eve was the time to gather for a multi-course meal including pea soup, pierogi, and kraut. We cracked walnuts to determine the disposition of the coming year, and all the women were dotted with honey on their forehead to keep them sweet all year long. Though we weren't overly fussy about it, the gathering was still a major to do that brought my family and my husband's family together with two tables for the adults in the dining room and one for the kids in the adjacent living room. I had broken out the inherited family silver, donned an apron, and pan-fried six dozen pierogi. I relished having been transferred the role of kitchen matriarch.

The third year—the aneurysm year—the role was stripped away, as I was allowed to do little post-surgery. There was no large family gathering. There was no formal dinner. My mother and father came over to our house to visit. I sat on the floor by our Christmas tree and scooted presents to Mom, Dad, and my husband. I'd asked for a simple gemstone bracelet, a request which my husband had obliged. There was a book and a CD and a few things from Mom and Dad. And though thankful simply to be alive, I was self-conscious when I noticed a feeling of deflation, of disappointment. What I wanted...what I'd hinted at to the point of being absolutely annoying... what even my friends had nagged my husband about... was a KitchenAid stand mixer. But there were the facts of the matter... the mixers were expensive, and we'd had a less than stellar financial year. And while the KitchenAid made my heart go pitter patter, I had told my husband that we needed to be reasonable, that I knew he would give me anything and everything in the world if he could. I didn't expect to be so disheartened when he actually listened to me.

My husband apologized that I didn't have more gifts to open and then walked away. I continued to sit on the floor and tried not to dwell on my feelings of missing Christmas magic—the surgery, the family dinner foregone, and the predicament of getting—and thereby not getting—exactly what I'd asked for. My mom crumpled up scattered wrapping paper. I heard a door open and close. The wooden floorboards squeaked as they always did as my husband walked back into the living room. He was carrying a big rectangle box and grinning. I blinked, shook my head, and smiled bemusedly. My husband put the box on the floor and said softly, "I think you know what this is." Still blinking, I cocked my head, looked at the wrapped box, and back up at him. He grinned again. I peeled off the paper to find what I'd been coveting—and it was shiny, and it was red. 

I was at once thrilled and embarrassed. "Travis...," I said in a small voice thankful yet admonishing. He raised his eyebrows slightly. "I got it on sale the day after Thanksgiving," he said. It turned out that my friend who had done the most cajoling on my behalf actually knew my husband's plan all along. The ruse was a team effort. And it worked. I wasn't allowed to do any cooking yet, so I could only admire my mixer from afar. Yet it was with my husband that I was truly impressed. My husband hadn't just given me a "thing." He had given me something to remember.

It's funny how life is so circular. This Christmas' candied ginger and coconut diamonds, lemon and cranberry trees, and spicy fruited hearts were made based on a recipe from a favorite holiday cookbook I was gifted years before I was married and mixed with the sturdy beater of the stand mixer that never leaves my kitchen counter. So many times that mixer has beaten back bad feelings as well as it beats eggs, but the best reward is the old-fashioned way of finding my way to my husband's heart through his stomach. 

This holiday season, I wish everyone joy. I wish everyone magic. I wish everyone a shiny red KitchenAid mixer. But most of all, I wish everyone love.

French Revolution

It was something I said that broke the rank and file of emotion. Something about reliability. Her head bowed over her breakfast bowl of oatmeal and berries. There was a pause, and then... tears. I sucked in my breath. Sunlight, missing for the past two days, streamed in the hotel restaurant's dining room. I snatched my napkin from off my lap and deposited it on my empty plate, rose and turned to unleash my purse strap from the back of my chair, lifting it over my head and down to rest on one shoulder, its weight at my hip, weapon-like. We marched single-file and tight-lipped past the black-clad waiters and waitresses who smiled as a reflex.

She cried. She cried the tears that are squeezed from the inner-most chambers of the heart. Her personal war story was one of many battles—diagnosis and remission, diagnosis and remission, diagnosis and remission, with life laying siege each time in between. Though her arena differed from our own, the language of the campaign was so much the same. Fear. Loss. Trust. Loss. Hope. Loss. Fatigue. Loss.

With survival comes a lamentation for the life that was lost. There lies such great grief in the hearts that lead our campaign of change. We patients, we involuntary band of brothers, were enlisted by this army as cannon fodder. But we were not taken down. Wounded yet emboldened by experience, we rose to build our own armies, wiped tears from our blood- and grease-covered faces, pounded our fists against our chests and cried out, "Action conquers fear." It is only from being torn apart that we are given the means to heal.

Each fortress of healthcare's status quo shows chinks in the wall through which we speak, at first a whisper, and then a yell—patients included, patient-centered, empowered, engaged, enabled. We scale walls. We break open doors. We recruit those inside. And thus our army grows.

We fight not to destroy but to reconstruct. My own weapons are words. I wield stories to cleave the heart in two and the head apart from its routine course of judgment. Each patient who tells his or story thus has chosen to take up his or her arms and fight. Like me. Like she. Like we.

Just Like Me

The radio announcer's voice, mellow and moderated, speaks of a study Stanford researchers are conducting regarding post traumatic stress disorder and coping mechanisms. A group of patients, veterans young and old, of wars long-past and current, have gathered in Menlo Park, California where they focus in on meditation expert Leah Weiss's directions, issued in a voice equally mellow and moderated, to slowly take three deep breaths—in through the nose, out through the mouth.

Weiss has been leading these guided meditations for more than a year now. She directs the men to think of a person they care about, a family member or a friend, and to bring that person close to them. "Allow yourself to feel the presence of this person," she says. This alone is an exercise in will. These soldiers, though no longer in combat, still bear the marks of their training—the heightened sense of alert that any person at any time may represent a threat. Thus, in the civilian world, making friendships and holding intimate relationships has become difficult. There is a self-imposed distance. Through meditation, the soldiers challenge themselves to close that gap. As they each visualize their chosen family member or friend, Weiss intones the soldiers' meditation mantra, "That person is just like me." Whomever that person may be, Weiss says, "Consider that, just like me, this person's had ups and downs in his or her life. Just like me, this person's had goals and dreams."

"Just like me." It's a phrase that we typically reserve for a select few. As a society, we like labels. We are drawn to parse data, divide friends from foes, black from white, rich from poor, educated to uneducated, increment by increment separating ourselves from others. Only when we have delineated the population, chosen who we feel to mirror our circumstances, experiences, interests and values, do we finally issue with great aplomb the discerning decree, "That person is just like me." But these veteran soldiers are learning how to think otherwise and bring empathy and compassion back to their sense of humanity. "The idea, of you saying, 'just like me,' that does a lot for me in a sense because I know how I'd like to be treated or how I want to feel," says one of the Vietnam vets.

His observation echoes The Golden Rule—do unto others as you would have them do unto you. It seems so simple. Yet time and again we forget, or worse, chose to do otherwise. It must not take the suffering of a trauma and the retraining of our subconscious to see that people of all kinds are "just like me" and that we are just (only) people. We will receive only what we are willing to give.

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.)

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!

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. 

The Ethics of Pharma-Patient Relationships

It was fortuitous timing this week when I received an email from Denise Sibler, head of Basil Strategies and coordinator of the Doctors 2.0 & You conference in Paris, asking my opinion on the issue of ethics in patient-pharma relations.

"I can't identify a time when I wasn't interested in the ethical issues of health care and one of them is the pharma-patient relationship," Sibler said. "With the rise of the ePatient, many interactions and relations become possible, so new questions have arisen."

I'd just come from HealthCamp Kansas City where myself and three other patients were fortunate to be able to participate in a conversation with members of Eli Lilly's Open Innovation Team. Team members were seeking input on how to improve the clinical trial process by crowdsourcing ideas. Their focus was not simply on R&D but on the patient experience. Overall, the patient group's suggestions echoed those I heard during a similar conversation with a representative from Pfizer while at HealthCamp DC in June regarding increasing patient participation in clinical trials—share the data and show patients their involvement matters. It is never unethical to have a conversation. Only through open dialogue can we begin to understand one another's view points, and that goes for the relationship between pharma and patients as well.

Patients enter trials not simply for themselves but to help others with their disease and advance scientific discoveries. Patients consequently should be allowed to learn along with researchers. What information about a patient is learned during the course of a trial should be shared with the patient—good or bad. If a trial succeeds, patients should be informed of the immediate results and continued to be kept aware of the long-term impacts of the trial. When a trial fails, patients should be informed as to the reasons why and how those reasons will play into future trials in terms of revamping, improving, or altogether abandoning a treatment or device.

The issue is, at its heart, one of transparency. Patients are not stupid. Anyone familiar with the scientific method knows that a hypothesis must be tested before a conclusion can be reached and there are inherent risks in the process. Testing a hypothesis results in a certain degree of failure; however, a conclusion always is reached, and therefore failure to prove a hypothesis is not a failure to learn. We incorporate our gained knowledge into the development of a new hypothesis, and go on to the next phase of testing.

As for what is not ethical, my opinion is highly influenced by my personal needs. Historically there has been little market to motivate pharma to invest in developing drugs to treat rare diseases. Small patient populations don't haven't had the ROI of drug development for alzheimer's or diabetes. Changes are happening in this field. A May 2, 2012 report from Forbes states, "A great example is Genzyme’s Cerezyme for the treatment of Gaucher disease, a genetic disorder that impacts organ function. Cerezyme is extremely effective – but it is also extremely expensive with annual treatment costs as high as $300,000/patient. As a result of this high price, Cerezyme’s 2010 sales were over $700 million – a respectable number for any drug." Such changes don't give me any sense of hope for a treatment within my lifetime. How pharma could potentially address this disparity is by developing off-label uses for existing drugs with clinical trials involving similar diseases and targeting patients' chief symptomatic complaints—pain, nausea, headaches, etc. For many patients, being able to effectively treat a major symptom would do enough to improve their quality of life that the wait for a cure would become less torturous. Truly implementing off-label use would require overhaul within the insurance industry such that clearly beneficial off-label use is covered just the same as an antibiotic. The healthcare industry's continued failure to address the rare disease community's needs is no small matter, as rare diseases effect more than 30 million Americans.

Furthermore, pharma marketing absolutely must be revamped. While I am a firm believer in the engaged patient and participatory medicine, prescription drug interactions are not within the common patient's frame of knowledge. Marketing directly to the patient—at least in the manner in which it is done in the U.S.—and commanding that patients "ask your doctor about" prescription X, Y or Z is out of line and a sure sign of pharma's nature to prey on patients' desire for a cure to their disease. This methodology also is a disservice to healthcare providers who presumptively have more knowledge of the drug, its interactions, and the patient's condition when that healthcare provider determines that the drug is not appropriate for the patient and the patient subsequently blames the provider for a failure to provide care. The flip side of this is, of course, that marketing directly to providers may sway the providers' choice of medicines. While medicines come with a set list of possible side effects, each patient is an individual. A patient may have demonstrated adverse reactions to a drug, yet a provider unfamiliar with that patient may go against the patient's assertions that medicine x—though not new and shiny and expensive—really truly works better for him or her than medicine y.

We must ultimately remember that pharma and healthcare in general has turned the matter of life or death into a series of business decisions. Only when we put what is best for the patient—with respect and consideration for each patient as an individual—back at the forefront will we be able to actually effect change and engage in the true meaning of the word healthcare.

Examining this issue further is an extension of the Doctors 2.0 & You mission.

"Doctors 2.0 & You is a forum for exchange amongst healthcare's stakeholders internationally," Sibler said. The Doctors 2.0 & You manifesto was about all healthcare and fighting for better care in general. The next step is to drill down into specific issues."

In order to do so, Sibler will be working in conjunction with ePatients like myself in order to collect additional information about ethics in patient-pharma relations with the intent of issuing a report on the group's findings.

#HCSM Review - Sept. 19 Edition

The HCSM Review is a peer-reviewed blog carnival for everyone interested in health care social media. This edition is loosely based on the theme of motivation and how it plays into our roles as patients, providers and caregivers. 

Motivational Lessons
"I look back now and wonder how my working self would assess my own motivation and participation over the last few years. On a good day I'd be the perfect patient, self-motivated, engaged, determined. On a bad day I'd be the surly, non-compliant patient threatening to throw a cup (or worse) at my head. It's just luck of the draw." - Rusty Hoe, Living With Bob (Dysautonomia)

Lather Up: doctors resistant to patients’ requests for hand-washing

"As patients we need to learn to work with what is until doctors and nurses are more accustomed to working in partnership with patients." - Martine Ehrenclou

Blogging and the Experience of Cancer Survivorship
"The apparent randomness of a cancer diagnosis shakes your sense of identity to its very core and afterwards nothing will ever feel certain again. Friends and family may find it hard to comprehend why you are sad or depressed. Understandably your loved ones want you to put your cancer behind you, to get on with your life and move forward, but it isn’t so easy." - Marie Ennis O'Connor, Health Care Social Media Monitor

Other favorites from this week's blogosphere:

Patient Satisfaction: It Is Not Just About Marketing

"Patient satisfaction can be broken down simply into two main issues… expectations and perceptions. Patients enter your office with a perception of the care or interaction they desire. They then decide if you met those expectations." - Howard J. Luks

Efficiency, Value, And Unexpected Consequences
"I settled into my morning routine, but couldn't shake the feeling that something was wrong... I entered the exam room to find my first patient anxiously clenching the exam table. Before I could open the chart, he began to sputter." - Jordan Grumet

Voices of Shared Decision Making

"We need to focus on re-educating clinicians about how to partner with patients — how to elicit patient preferences, and how to anticipate when a decision is a preference-sensitive one. We also need to coach patients, to help them not only learn information relevant to their treatment choices but also to help them find ways of communicating their desires more effectively to their clinicians." - Peter Ubel

Mission: Peace For You

"When we feel love and kindness for others, it not only makes others feel loved and cared for, but it helps us also to develop inner happiness and peace." - The Dalai Lama

Look for next week's HCSM Review to be hosted by the venerable chancellor of SMUG (Social Media University Global), Lee Aase. 

#HCSM Review - Send In Your Submissions

What motivates you? What demotivates you?

On Wednesday, Sept. 19, The Afternoon Nap Society will host HCSM Review—the peer-reviewed blog carnival for everyone interested in health care social media. This edition will focus on the theme of motivation and how it play into our roles as patients, providers and caregivers.

Submitting a post is easy. Simply email a link to your post or posts (no more than two submissions per author) by midnight (ET) on Sept. 17. The more honest the post the better—this isn't about being a hero; it's about carrying on. For good measure, format your submission email as follows: 

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent link to post:
Your Name: Name, Username, Nickname, or Pseudonym
Description or brief excerpt:

Learn more about HCSM Review by visiting HealthWorks Collective. 

19 Days of Living with FMD - Day 2 - A Rare Disease in Focus

Eighteen days - that's how long FMD Chat, a fledgling nonprofit organization dedicated to those affected by the rare disease fibromuscular dysplasia, has left to raise $1,274 more dollars in order to reach its MedStartr goal of $5,000. Why do I care? Because I have fibromuscular dysplasia and FMD Chat is my organization. FMD Chat relies on social media to connect patients around the world with the peer-to-peer support that makes living with a rare disease less of an isolating experience.

What is MedStartr? MedStartr is a crowdfunding platform specifically designed for healthcare. It's like Kickstarter, but not. It has given FMD Chat access to a group of potential donors who would never otherwise know about or have interest in contributing to a small group of rare disease patients. However, many donors still remain "potential" donors and the small group of rare disease patients still need donors' support. If FMD Chat does not meet its $5,000 funding goal by Sept. 7, then the project fails and all the money raised goes back to the donors.

In order to help raise awareness of FMD Chat and its goal, I have taken up the tactics of public radio's listener support fund drives—nineteen days to meet our goal, nineteen posts to show you what it's been like, and what it continues to be like, to be me, a patient with FMD. Today, marks day two.

WARNING: it's going to get graphic. 

DON'T WANT TO SEE IT: help FMD Chat reach its goal before I get to the emergency surgery pics. 

Day 2

This is my neurologist's office.
I have been his patient since April 2008. 

At age 28, and after three days of an intense earache,

I suddenly was overcome by dizziness.

An ambulance was called.

I don't remember much of the next 24 hours.

Despite pronounced Horner's Syndrome,

the hospital doctors said that I had vertigo

and that it would go away as quickly as it had come on.

They were wrong. 

It was at home that I discovered I had 

lost my senses of pain and temperature on my right side.

Concluding that this was abnormal,

I made an appointment with my family practice doctor.

He too concluded that something was wrong

and referred me to the neurologist.

My neurologist, diagnosed an ischemic stroke.

More than four years later,

I still have deficits.

More than four years later,

I see my neurologist at least twice a year.

 

Back to Day 1

19 Days of Living with FMD - A Rare Disease in Focus

Sometimes it's hard to understand just what it means to be a patient. It's even harder to understand what it means to be a patient with a rare disease. So - I'm going to show you.

To put it very bluntly, fibromuscular dysplasia has tried to kill me many times before. I'm doing my best not to let it. FMD Chat is raising funds via MedStartr, so that the organization can grow to support more fibromuscular dysplasia patients like me around the world.

FMD has no cure, but at the very least we can care. We have 19 more days to raise $1,274 dollars, so for 19 days—or until we reach our goal—I'm going to show you what it's been like, and what it continues to be like, to be me, a patient with FMD.

WARNING: it's going to get graphic.

DON'T WANT TO SEE IT: help FMD Chat reach its goal before I get to the emergency surgery pics.

Day 1

This is my right kidney.
It is the only kidney I have.
My other kidney was removed when I was 29,
after my renal bypass failed.

Living & Giving Wholeheartedly

It's 3:30 a.m. I have not yet been asleep. There's too much to do. Too much to worry about. I am counting down the days until October when, as of right now, each day does not bear a color-coded task to be completed. Right now, the only things that have to be done in October are return from the Medicine X conference in California, meet my editorial deadline for the magazine of which I am editor, go to the dentist, and send the magazine to press. I should also probably celebrate my wedding anniversary.

The problem is that between now and then I will inevitably create at least a dozen more things for myself to do. I am responsible for at least half of my heavy load. Glutton for punishment, I fill my time with intensive responsibilities rather than enjoy the company of those I love and the things I like to do. The matter is complicated by the fact that I enjoy my self-imposed work. September will mark a year's time since I truly threw myself into the realm of healthcare and social media. It's been a whirlwind year marked by so much learning and inspiration and passion that I have admittedly somewhat lost myself. There is little to no time to spend in quiet reflection. Instead there are things to be done. Tasks to accomplish. Goals to achieve. And even before I have ticked one off my list, I've added another.

This stubborn drive is a hallmark of my character, for better and for worse. Increasingly, I am hearing the calls from friends and family to slow down, that they don't know how I do it all, that it doesn't all have to be done at once. In large, they are right. The sticking point is that I am keenly aware of working with a potentially limited clock. We all are working with a potentially limited clock. What bothers me is that my heightened awareness of this clock makes me push against it to complete the tasks that I have decided are important to me before time expires. I want to make a difference. I don't want fame or fortune. I simply want there to be some lasting indication that I was alive.

Recently, the arts-based healthcare advocate Regina Holliday told me that people are inspired by—and more willing to get behind—that which we present as our life's work. She is one who would know. She wears her heart on her sleeve in all the right ways. I tend to be a bit more quiet. I am an advocate of opportunity, plugging doggedly away for a cause that the overwhelming majority of the world couldn't give a damn less about. We in the rare disease club are, as individual diseases, fractions of populations. The rareness of our diseases not only isolates us as patients in need of care, it isolates us from the support networks that drive awareness and research of the more common diseases. Frankly, I can not imagine a world in which I will never have to spell fibromuscular dysplasia and explain it as a rare vascular disease for which there is no cure. Because I can not imagine that world, I am trying to create a world in which fibromuscular dysplasia patients like me do not feel so alone. My philosophy for creating an organization dedicated to fibromuscular dysplasia is based on my own desire to be treated with compassion and dignity, to encourage camaraderie among patients, to provide resources for caregivers, to foster interest within the medical community. I want to create the kind of environment that addresses the diagnosis from a whole patient perspective, that provides the type of care that I, as a child, teenager, young woman, and now spouse, have needed.

Nothing about advocacy is easy. To do it wholeheartedly means to give up much of oneself. What drives me onward is what I get back. It never ceases to amaze me how much our little community of patients cares about one another. Participants notice when someone has been absent for awhile. They reach out. These small communications are so important. They represent never having to be alone. They represent empathy in its truest form. I never thought that I could care so much about people whom I have never actually met. These people, these patients, these participants, are part of my heart.

So I push. I take on more than I should. I neglect the kitchen sink full of dishes and use Google translate to write an email in Italian to reach out to a rare disease group half a world away. I plan another fundraiser, contact another doctor, tweet out another link. It is all consuming. It is exhausting. It is what I both dread and desperately need. And I need you. I need for you to care. There are so many passions and tremendous causes angling for attention, and it is oh so easy to tune out the many pleas while going about one's daily routine. One says no, looks away, moves on, and assumes that someone else will step up and step in. In order to effect change—any kind of change—we must each learn to care, to engage, to give of ourselves. Whether you give to my cause or to any other, give yourself, give your heart, give your time, give your talent. Give without expectation of what you will get, but with an openness to the possibility of receiving more than you expected.

Help FMD Chat reach its $5,000 goal by Sept. 7.

Lament for the Fifth Cranial Nerve

My right side

is my dead side, 

where the nerves fried, 

but I tried 

to piece it back together.

My left side

was my bad side,

would just abide,

but my pride

forced me to be its master.

My inside

is where I hide

and confide

that i lied,

it long stopped getting better.

Posted on the occasion of a friend having also become a young stroke survivor. 
Learn more about the signs of stroke. 

Metaphors of Depression - or - Help. I'm in a hole.

I'm in a hole. I'm in a hole, and I've been in a hole.

A hole is dark. A hole is deep. And given enough time spent in a hole, one begins to find the hole comfortable or, at least, comfortably familiar, which makes crawling out of the hole less appealing. Eyes adjust to the dimness; skin adapts to the dankness. To crawl out of the hole is to be blinded by the light, it is to be overwhelmed.

Living outside the hole is less difficult than crawling out of the hole; yet no part of living in proximity to a hole is easy. One is constantly aware of the hole's holeness. The hole is always there. What varies is how much energy one must expend on not falling in the hole. At times one may simply know that the hole exists. At other times one may walk directly to the rim and say, "Look there's a hole; I will not fall into it." Yet again, one may stumble, crashing in up to one's shoulders, clawing handfuls of dirt and sticks and stones for traction and still be able to find a toe hold and climb out. Spent, emotionally and physically exhausted, one carries on, knowing that next time... next time... it may have rained and the soil that surrounds the hole will have turned into slick mud that, given a foot's sudden slip, will cause one to slide swiftly in, tumbling and turning along the way down, to land with a thud, breathless, sweating, and sore on the hole's floor.

I am in a hole.

The problem with being in a hole is that I am not allowed to be in a hole. And so I, like so many others living in holes, pretend that we are not. We rub sticks together to light a spark. We use our hands to cup silted water from underneath rocks into our mouths. We eat bugs. And we survive. Just barely, we survive. We work, we lead, we live—all from within our hole. Being in a hole, of course, makes it harder, as does continually maintaining the ruse—for ourselves and for others—of not being in a hole.

It is a matter of expectation that forces us to live in this way, this hole dwelling. We expect so much of ourselves, and we bend to the expectations of others. We take on too much because we feel that we should. We never say no because we feel that we shouldn't. And when our burden of expectation grows too great, we still stubbornly refuse to ask for the one thing that we need—help.

Help. It carries both the foulness and usefulness of its other four-lettered cousins. It can be used as a noun, a verb, an adjective, an adverb. It is a command. It is a request. Yet, for all its uses, help is so seemingly impossible a word to utter. To say it exposes a weakness, an inability to do something on one's own. To ask for it is the opposite of self-sufficiency, the opposite of strength, the opposite of leadership. Or at least that's how it feels for me.

Disguise receiving help as delegating duties and perhaps I would be more apt to take it. As it is, I am stubborn. Often I react poorly to offers of help, putting them off for the fear of seeming incapable on my own or, at other times, preferring to exercise control and failing to trust that others will live up to my standards. I know enough to recognize that this methodology is neither extremely efficient or effective. Yet, I also know enough to realize that in this modern, insulated, self-centered world, there are too few out there who are truly willing to offer—no strings attached—help. We've even developed the terminology "professional help" for the group of workers who are paid to do the things that others will not help us do be it care for our loved ones, clean our home, or listen to our weeping heads and hearts.

We must do better. We must reimagine help. We must give what we wish to receive and open ourselves to the possibility of receiving it.

I am in a hole. I am in a hole, but I am willing to bet that someone has a ladder. Once that ladder arrives, it is up to me to climb out. After that, I'll be looking for shovels and strong shoulders to help me fill in the hole so that next time my fall isn't as deep.

From the Patient's Point of View

It is so wonderfully weird to be written about rather than to be the one doing the writing...

I've been in the news lately.

It's a matter of split personality—there's AfternoonNapper, and then there's me. Is she me? Am I her? Can a me be a we?

So many of us are dueling our dichotomy. Our halves are split and split and split again. I am a patient. I am a leader. I am a writer. I am a reader. I am a wife. I am a persona. Regardless, I am continually happy to be able to say — I am — and these two words increasingly become a so much more powerful battle cry compared to the projections of I will or the impermanence of I was.

The Problem of Being a "Patient"

There is a woman who graduated in the top 10 percent of her high school class and was accepted into the University of North Carolina at Chapel Hill. While still in college, she began her journalism career as a state employee in the public relations department of one of the University of North Carolina's 16 public institutions. Her early duties included writing press releases and assisting in annual report development for one of the university's partner institutions, which was charged with improving teachers' skills across the state.

As a junior in college, the woman joined her university's award-winning newspaper, quickly rising through the ranks from a staff reporter to desk editor. She partnered with other journalism students to facilitate a program in the local middle school, teaching children writing and technology skills to produce a student newspaper. When chosen to serve as the college newspaper's managing editor, the woman elected to stay on an extra summer school semester in order to fulfill her duties. 

After graduating, the woman took a job out of state. The job immediately thrust the young reporter into covering a murder trial in which the accused allegedly stabbed his girlfriend in the face and neck 27 times and subsequently blamed the attack on four young black males. The story was only the first in a long line of violent crimes including other murders, bank robberies, and fatal accidents the woman would write about over the course of the year. 

The woman took another reporting job that would allow her to move back to her home state. She spent the next four years writing in-depth enterprise and news feature stories for a two county area, as well as managing the newspaper's four-county arts and entertainment section. She was promoted to the position of special sections editor, overseeing all editorial and design work for the company's contracted publications. 

When the news company purchased a national magazine, the woman was made associate editor. During her time as associate editor the magazine, the woman went to graduate school, earning her master's degree and teaching at the same time. She was named the magazine's managing editor while still completing her degree and teaching, successfully balancing her responsibilities—in addition to those of being a wife—such that the magazine repeatedly won the title of best niche publication in the state's press association awards, the master's degree was completed on time, and her students overwhelming passed competency exams and developed a greater appreciation for the English language. Today, the bimonthly magazine draws its largest subscriber base from across the Southeast, and in addition to managing the print magazine, the woman also oversees all social media and sponsorships. 

In her spare time, the woman began a community service to assist a segment of the population. The service became internationally successful, and in order to provide service to additional people around the world, the woman partnered with well-known organizations in the United States and Europe. These partnerships and the woman's plans to grow her services led her to incorporate as a nonprofit and pursue IRS recognition as a 501c3 to allow donations to her organization to be tax deductible. She enlisted a group of advisors including a woman with an undergraduate degree in social services and graduate degree in human resources who also oversees her company's financial records; a woman with an undergraduate degree in communications and a graduate degree in liberal studies who also has worked as a pharmaceutical representative and is in charge of regional marketing for a large insurance company; a man with an undergraduate degree in business and graduate degree in accounting; and a man with an undergraduate degree in economics, law degree, and more than 25 years as chief legal counsel. 

How do you feel about that woman? 

Now... pretend that woman is a patient. 

Why must the "patient" label strip one of his or her accomplishments as an individual? 

Now... pretend that woman, who is a patient, is me. 

Patients will be the ones to change the system because patients are—before all else—people.

Support FMD Chat's bid for crowdfunding via MedStartr.It's all or nothing.

Can You See Me: Invisible Disabilities and Discrimination

Margaret* is a kind woman. She is creative, loves animals and helps raise awareness of the diseases that affect her and the people she loves. In addition to sharing my diagnosis of fibromuscular dysplasia, Margaret also has pulmonary hypertension and diabetes. Her pulmonary hypertension specialist worked with her to file — and have approved — the state's official paperwork so that she could obtain a permanent handicap parking permit. 

But when Margaret went to the post office on Thursday, she experienced something that those with invisible disabilities unfortunately are all to accustomed to — discrimination. At the post office, an employee remarked that if Margaret was handicapped, she needed to use a cane. 

"I felt a mixture of emotions," Margaret said. "I was sad that someone would say that to me and make me question getting the permit in the first place. It was a hard thing for me to do to come to the decision that I needed to apply."

In Margaret's state, the qualification for obtaining a handicap parking permit fall under definition of a disabled individual. A person who has a cardiac condition with functional limitations according to American Heart Association standards is the very first item on the list of qualifications followed by those with respiratory conditions. Neither cardiac conditions nor respiratory conditions are visible — however they are no less real.

"I was sad that in some peoples' minds, one can only be be disabled if it is seen," Margaret said.

Only two of six of the state's qualifications for a handicap parking permit are those that can be readily seen and most commonly associated with disability — a person who has lost an arm or leg and does not have or cannot use an artificial limb; a person who cannot walk without the aid of another person, a walker, cane, crutches, braces, prosthetic device or a wheelchair because of the disability.

What are those with invisible disabilities to do?

Bringing about more awareness of the term invisible disability is a start, and doing this must address the public's habit of making sweeping assumptions. A person looks at another person and, based on outward appearances alone, makes a judgement. Chronic illness patients are all too familiar with variations on the frustration refrain, "But you don't look sick." Perhaps we don't. Perhaps our outside has not deteriorated like our inside. Perhaps we're out and about because it is a good day and we don't look or feel as sick as we are. The fact of the matter is that no one knows another person's full story, and no one can ascertain the full story based on appearances alone. 

When I was 25, I had triple bypass surgery. To explain the need for the surgery was enough of an endeavor — no, it wasn't heart surgery... no, it wasn't gastric bypass... yes, the doctors think I have a vascular disease... no, it's not due to a bad diet... no, it's not contagious. Even in the hospital, I was an anomaly in the vascular ward. Outside the hospital, when I finally was recovered enough to leave the house, my gauntness, slowness and bruised arms drew concerned and suspicious looks. Out to a restaurant for dinner one evening, my parents ensured I got a seat while we waited, which I did not give up when an elderly lady came in — an action that mortified my own sense of decency and, I'm sure, the others around me. But I felt as if had no choice. My need, though invisible, was great. 

I found myself in similar situations after having a stroke at age 28. I'd come home from the hospital with a walker. My foolish pride led me to leave the walker behind and instead cling to my husband's arm for balance when I had to go out in public. I was slow as molasses getting from one place to another. I went out of my way for ramps and railings to sturdy myself. It was the first time that I ever truly contemplated the Americans with Disabilities Act and realized how much more needs to be done to provide adequate accommodations. 

The vast majority of my stroke's effects were invisible, save for the drooping of my left eyelid — a physical feature those who are unfamiliar with stroke would fail to associate with its cause. My dogged persistence to appear "normal" made things harder than they had to be. Expending so much effort trying to keep up and keep my disability not only invisible but a non-issue was exhausting to the point of tears. 

That exhaustion is the risk that those with invisible disabilities face. If others do not see our disabilities as real, there is a tendency to play into the illusion. We don't want to seem a burden. We push ourselves too hard. We feel embarrassed to make use of our accommodations. And all our effort pretending — for others' benefit — that our invisible disability really isn't even there leaves us alone and suffering later when the job is done or the party is over and we overdid it because no one sees how we feel. 

Those of us with invisible disabilities must stand up for ourselves. If we can not be seen, we must at least be heard. We must speak out against discrimination and educate the public about the damage done by assumptions based on how we look. It's not about how we look. It's about who we are. And we are in this together. 

(* Indicates name has been changed.)

Cardiac Perfusion

Alex dialed the number. "Hey, Dad. I've got a real heavy patient load today, so I wanted to go ahead and call because I didn't know when else I'd be able to reach you."

The Seimens whirred softly in the background, its automatic imaging sequence well underway. The patient, tucked under warmed blankets, smiled.

"Yeah... yeah... okay...," Alex nodded into the phone. "Do you know when you and Mom will be here? Will it be tomorrow or Tuesday?"

The patient kept infinitely still, breathing regularly but so as not to disturb her position.

"Okay. I'll see you then, Dad. Bye," Alex said, putting down the phone.

The Seimens continued to scan the patient's heart. Perfusion—a test to see how much blood the heart is holding at rest and after stress. What about the heart that scans the patient heart? That heart under stress, how much can it hold?

"Pshew! Wow. You didn't move a muscle did you? Great pics!" Alex said.

The patient rose from the table and settled into her wheelchair. Alex folded one blanket in half and spread it across the patient's lap. Then he trekked across the unit to the closet where the blanket warmer was kept.

"Lean forward just a little," Alex said to the patient. He draped the warm blanket across the patient's shoulders. "We'll get you finished up down here and back upstairs to get something to eat."

The patient was wheeled into another room. A chemical stress test was induced. The patient was returned to her room in the observation ward. She was, after eleven hours, allowed to eat. The patient rested. Her father and mother and husband arrived. The cardiologist came. He spoke of ifs and thens. The patient was summoned for her second set of scans.

"Did you get something to eat?" Alex asked as soon as he saw the patient's face.

The patient smiled. She settled down on the table with her arms resting above her head. Again, warm blankets were tucked around her. Again, the Seimens began to whir. Otherwise, it was quiet. The patient was relaxed.

"How much longer does this thing have?" she asked in a low voice.

"Six and a half minutes," Alex said with concern in his voice. "Why?"

"I'm falling asleep," the patient said.

"Oh, yeah, if you fall asleep, you might jump when you wake up. I could sing to you, but they'd probably fire me for torture," Alex said.

"Tell me about your dad." That's what the patient should have said. Alex's Father's Day was spent with a surrogate family, a family of wounded hearts in need, hearts made perfuse, at rest and after stress, with his care.


(With thanks to my own father who spent his Father's Day reading the newspaper in a big, green recliner by a hospital bed—instead of reading the newspaper in a big, green recliner at home—and took a raincheck on the family cookout and promised blueberry and goat cheese pie.)

Let Me Hear You

Through the open window of my fourth flour Paris hotel room, the sounds of the city never ceased. In the wee hours of the dawn, delivery trucks opened and slammed their doors, engines rumbling about from stop to stop. The policeman with his incessant whistling cued the morning commute, commanding traffic in time with the busy intersection's stoplights. Gangs of Paris metro riders swelled from the underground, crowding the sidewalks with voices. The cook at the crepe stand called customers' orders back to them as he poured batter onto his hot griddle. Two dings sounded as the tram approached and the clicking of high heels clipped along more rapidly in order to board. 

Each noise verbal or non-verbal was a communication, an indication of moving, of doing. To listen to it all at once was cacophonic, like the tuning of a symphony or the static from a radio. Yet a keen ear dialed in each sound as its own. Discordance transformed into dialogue, revealing a constantly changing conversation that charged the city's occupants to participate, to integrate their lives with millions of others. 

Noise is what lets us know we are not alone. 

ePatients are healthcare's noisemakers. We share. We disclose. We reflect and analyze. We reach out with the hope that what is within will connect. We give voice, which in turn grows our chorus. Listen. Listen to what we are singing. Our chorus sings a mighty song in an inverted key — we have shifted, we can rearrange, we will bring about change.

Listen. Listen and join in our song. Be it in harmony, be it in discord, sing. It is the sounding of the voices that is important. Our voices charge healthcare system occupants to participate, to integrate, to consider the lives of millions of others.  

Getting Out More Than You Put In

It's a matter of return on investment. We give. We give our time, our energy, our talents. what do we get in return? What do we get out of what we put in? In love, in life, in our family, in our work, in our passions. There are the lucky ones for whom work — which brings the most concrete return on investment — also brings the esoteric returns: happiness, satisfaction, pride, accomplishment. And yet there are those for whom their passion brings these things while failing to bring in the necessary financial returns to continue doing them. How does one balance what one needs to do with what one loves to do?

A fellow health activist posed a question on Wego's forum — how could she translate her passion for being a health advocate and helping others into a paying gig? I had no answer for her, short of being hired on to a pre-existing health advocacy organization or starting her own organization. Either way, she would need to be willing to work another job for income or do without income until the organization was well established enough to both generate finances enough to cover necessary advocacy expenses and pay a salary. Neither option is an easy go, and, of course, neither option comes with a guarantee of success.

Why does it have to be so hard for those who are willing to help to be able to help? Good help is hard to find, yet there is a talented bank of health advocates that is underutilized, or worse taken advantage of, simply because these advocates are patients. Patients who are health advocates most often do not come with degrees in social work, psychology, nursing, or adult education that are typically required of professional healthcare advocates. This lack of training is not an indication of a lack of ability; rather it is a result of the fact that many patients come into advocacy later in life. Patient advocates are motivated by their personal experiences. What they have to offer is a special insight into the disease process that can not be taught by any degree program. Their skills, cliche as it may be, come from the school of life and are therefore uniquely genuine. What technical skills are required of professional advocates — HIPPA compliance, conflict resolution, team building, medical coding, active listening, redirection, and so forth — can be taught from the book. No one can teach how to be a patient. Having been a patient doesn't even necessarily mean that one is able to completely understand another patient's experience. Yet having been a patient, having dealt with a disease, endows one with a degree of compassion and empathy that simply is not felt by those who have not suffered the disease at all.

Our healthcare system must make better use of this wealth of untapped resources. Bring these passionate advocates into the medical office. Put them to work. Allow a human connection back into medicine. We connect and communicate with stories, and as we are permitted to tell our story to another, we are suddenly made to feel less afraid, less alone because in that moment comes recognition of a shared narrative, in that moment "I" becomes "me too," which is at least double the return on investment.

Keep Calm and ePatient On

This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: create your own "keep calm and carry on" poster. 

Patient Privacy in the Age of Social Media

Every Sunday night, healthcare Tweeps from around the world come together for the #hcsm (healthcare and social media) chat. The chat moves at lightning pace — and often overwhelms those new to the conversations. However, the #hcsm chat is the place to jump in with both feet. This Sunday, the first topic addressed dealt with patient privacy and social media. I've excerpted my own comments and those directly in return. 

What does patient privacy mean in age of social media? And, does that mean patients have a right to broadcast their care?

@AfternoonNapper Pt privacy=I can share about my health & care. What I share makes me fair game to be contacted by like-patients.#hcsm

@AfternoonNapper Broadcasting care - good & bad - falls under the realm of free speech; therefore pts have the right whether HCPs like it or not.#hcsm

@AfternoonNapper However, what is of interest is where the line of slander/libel can be drawn in re: the "print" of SoMe re: docs/facilities. #hcsm

@RyanMadanickMD >> @AfternoonNapper T1 do you think that there are HCPs who don't agree or don't like it? #hcsm

@AfternoonNapper >> @RyanMadanickMD Absolutely. If an HCP is criticized via SoMe, that has greater reach than simple word-of-mouth per usual. #hcsm

@TaborF You can choose to share your personal information, but can't always control what others will do with it once it's out there #hcsm

@AfternoonNapper >> @TaborF Spot on. And THAT's a huge part of the problem. #hcsm

@AfternoonNapper Frankly, doctors are the least of my worries re: disclosure of private info. Worry more about facilities, other patients, nosy ppl. #hcsm

@crgonzalez >> @AfternoonNapper And what about the terms of use from FB which tried to "own" all the content shared on its platform. Remember that?#hcsm

@AfternoonNapper >> @crgonzalez Another great point and one that would be a fascinating legal battle when it comes to healthcare/HIPPA/etc. #hcsm

@schwartzbrown Seems as if people feel they need to protect "patients" from themselves. #hcsm

@AfternoonNapper >> @schwartzbrown Patients do need some protection from themselves re: SoMe simply due to confusing legalities/policies. #hcsm

@AfternoonNapper Just because my patient group is largely on FB, that doesn't mean that all our participants know the nitty gritty of FB rules. #hcsm


To keep the conversation going — what do you think about patient privacy in relation to social media (Twitter, Facebook, discussion forums, etc)? There are commonly referred to risks. Do you feel that you fully understand the risks? Do the pros outweigh the cons? Have you directly experienced discrimination as a result of health disclosures on the internet? What can patients and group leaders do to address privacy concerns?


This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: write about the best conversation had during the week.