Medical angels and enemies

When I realized I was facing a serious health challenge that was going to put me in the hands of doctors and nurses for the coming months, one of my strongest reactions was anger. I was, once again, going to be at the mercy of people who saw me as a piece of meat on an assembly line. Traumatic experiences in medical care, involving severe pain and callous degradation, bubbled to the surface and left me breathless with resentment and fear. They sit deep in my tissues. For years after a particularly painful—and unnecessary—procedure, I could not lie on my back because it evoked the pain of the original event.

Given the angelic nature attributed to the profession, medical personnel are often surprised to be met with distrust and anger. Allow me to forego rationality and put it bluntly:

You (insert any medical profession) could have prevented (or detected earlier) this (insert medical problem). By ignoring or trivializing my symptoms, you missed important signs of impending illness.

You identified this (insert diagnosis) in me and now see me as a (diagnosis).

You will administer the (insert treatment) that entails an endless list of side effects and usually includes pain, discomfort, sick leave, etc, etc.

You are the ‘we’, I am the ‘them’. Subject, object. Reverse the perspective, and you are the enemy.

There’s a myth that people go into the medical field because they want to ‘help’ people. But many go into it so they can be experts and tell people what to do. This is so much easier than working together with someone to help her regain health. Working together involves listening, really hearing and processing, what is being said (or not said). There’s no training for that in medical schools.

While some people are born with compassion, most of us need to learn it through experience. It’s ironic that medical school is so demanding that only very healthy people even attempt it. I find myself wishing every practitioner would be afflicted with some vague and chronic condition entailing pain and fatigue. Or at least one life-threatening medical event. There is much to be learned.

So now, again, I step onto the conveyer belt of medical care. I will try to find the compassionate care providers (they are out there!). When I meet the enemy, I will gird my loins, which is not easy with a colostomy, and do whatever I can to protect myself.

Suggestions from my readers are gratefully accepted.

Giving thanks on my very worst Thanksgiving

Thanksgiving is my favorite American holiday. I’ve had many wonderful Thanksgivings, in the U.S. and abroad, with family and friends, and always with good food. My plans for 2011 were promising. The weekend before was the GSA conference in Boston, then I had a train ticket to Exeter, New Hampshire to spend Thanksgiving weekend with my aunt and uncle.

I missed most of the conference and Thanksgiving Day found me in a hospital bed feasting on chicken bullion and cranberry juice. I had just upgraded to clear liquids after surgery for bowel obstruction two days earlier. I had woken up to a long incision, a colostomy, and a frightening diagnosis.

I’m still recoiling from the shock, struggling to get my strength back, and learning to live with a new body part. And trying not to dwell on the treatments that lie down the road.

Amidst the trauma, the cornucopia of generosity that my illness generated has been overwhelming.

As soon as it was clear that I was going to need surgery, my best friend flew up from North Carolina. My daughter arrived the next day from Seattle. When I was to be discharged, my sister flew down from Alaska and my husband from Stockholm. A cousin drove us up to New Hampshire, where I stayed with my aunt and uncle.

Then there was the hospital staff who gave the phrase “patient-centered care” real meaning. (If you need surgery in the Boston area, check out the New England Baptist Hospital.)

Back in Sweden, I’m getting stronger each day. Friends and colleagues in Sweden have rallied with cards, flowers and chocolate. Work, and life in general, is on hold, probably for the next six months. My focus will be on healing. My calendar is now booked with appointments for various examinations and procedures at Stockholm hospitals.

The strongest medicine, however, will be my deep gratitude for the love and support that my illness has elicited from family and friends.

Confessions of a former Google geek

From the first time my daughter introduced me to the beta version of g-mail I was hooked. The clean work surface, the subtle advertising on the sidebar and no flashing or scrolling banners. Okay, so they ‘read’ my letters to target advertisements. I could live with that.

The Google search engine quickly surpassed AltaVista. Then Google Scholar provided an academic search engine that included not only journal articles but also books and reports from governments and international agencies. I became an avid Google fan.

At the same time, critique of Google was emerging. People wrote that they were too big, too powerful and that the risk of abusing that power was great. I tended to discount such criticism as paranoiac rambling.

The censuring scandal in China made me think. Google, like the other big IT companies, made compromises with the Chinese government. Google pulled out and I thought, see, they’re different. The family of one of their founders emigrated from Soviet and had experience with a totalitarian regime. So they do have a different mindset, I thought.

Then Google held my g-mail account hostage.

Without warning, they froze my account and threatened to delete it in 29 days unless I either gave them credit card information or sent a copy of a government-certified identification card. There’s an important lesson here for anyone who has a Google account, so I’ll describe the sequence of events.

I open my computer and log in to g-mail. A window pops up and asks for my birth date. The reason? To target advertisements to my age group. I don’t want to give my birth date, but there is no way to get past the window, it blocks me from my account. So I write in random numbers. No go. It must have a real date. So I write in the first thing that comes into my head, which happens to include the year 2000. Mistake! I am now told that I am too young to have an account. Google will now delete my account in 29 days unless I prove to them that I am at least 13 (or 18) years old. The only way to do this is by providing credit card information, with a fee of 30 cents, or to send a copy of a government-issued ID with my birth date on it.

At this point I suspect phishing or fraud. I enlist the assistance of my daughter and computer support at my workplace. On the Google support forum I see that I am not alone. Children, and adults who mistakenly wrote in a wrong date, have had their accounts deleted without warning. Google’s responses to their posts are to the effect, “them’s the rules”. Awareness dawns: this is no fraud; this is the Google giant throwing its weight around.

I give in. I decide to give them my credit card details and pay the 30 cents. Perhaps I can at least avoid giving them my DOB. No. In the process of bailing out my account, I must “agree” to this friendly reminder from Big Brother Google:

“I understand that if Google discovers any of my statements to be inaccurate, it may disable and delete the listed Google account without notice.”

So if they notice that the DOB on my Facebook differs from my g-mail? Click. Delete. There goes my address book, e-mails from the past seven years, and access to my writers group site. Poof.

Google is back in China, now based in Hong Kong.

Not only does Google read my mail, now they also have my credit card details and DOB. Does this make me uneasy? You bet it does. And the way they went about it really made me uneasy.

A friend reminds me that their “service” is free. I disagree. I pay a price every time I log in. They take information from my personal and business correspondence. I knew that was the case from the beginning and accepted it. What I didn’t know was that they would, without warning, lock me out of my account until I coughed up more information than I wanted to give.

Anyone know how to start a class action against Google?

Lesson: If Google asks for your DOB, write in a date that makes you over 18. And remember, Google can, and may very well, disable and delete your account without notice at any time.

Twisting words. Research in the media.

This week I had the unpleasant experience of having my words, and intentions, grossly twisted by an editor. In response to an op-ed I co-authored in the major Swedish newspaper, an editorial appears in a competing newspaper. To spout her own political views, the author ascribes to us conclusions and opinions  that were false and offensive.

Judge for yourself. The last paragraph of our article: “The quality of eldercare must be improved. However, it is obvious that the economic market-driven model that works for toothpaste and restaurants cannot work in the same way for eldercare services. Even the oldest and frailest people should have freedom of choice (of provider). But we remain critical of the current belief that increasing freedom of choice will automatically improve quality.”

The editor titles her piece, “No age limit on choice!” (Well, yes, didn’t we say that?) She writes that our conclusion is that older people should not be allowed to choose their care providers, and that we consider frail elderly people second-rate citizens. (What did Freud say about projection? No, I won’t go there.)

Our first reaction is to ignore it. Why attempt a rational debate with someone who writes something so totally off the wall? Then we read the online comments. Perhaps it’s the comment referring to us as fascists that spurs us into action.

In the U.S., I would contact the university lawyers. In smearing our names and work, she smears our academic institution, and research in general. In Sweden, there’s not much to do except write a reply and hope the chief editor will take it in.

We send in a reply the very same day. The chief editor writes back that replies are limited to 950 characters including spaces (by comparison, this blogpost has three times that). The following day, the editor writes again, giving the example of a 96-year-old woman who moves to Thailand to join her son. This, she writes, contradicts the conclusions of researchers who hold that elderly people cannot make wise choices concerning care.

We slash our reply further and this time it is published. The editor wrote no commentary on our reply, as is customary in Swedish newspapers. Either she has found new targets, or she is gathering steam for a stronger attack.

Researchers are often criticized for not spreading the results of their work to the general public. For one thing, we’re too busy writing grant applications. (The academic career path ensures that no researcher is permanently employed for the first ten years after getting a Ph.D.) For the other, we—and everyone—are defenseless in the face of this kind of public defamation.

Ubiquitous noise

I’m recently back from a trip to the United States. While I often miss things about life ‘across the pond’ (the good food, the easy conversations with strangers, my family . . .), one thing I do not miss is the noise. Everywhere. All the time.

Someone must have done a study once to show that people buy more and eat more if they are exposed to music. In any case, every store and restaurant has piped music. Now I’m not totally opposed to music in the background. I even have a high tolerance for muzak, except on the telephone when I’m put on hold. But many places don’t understand the concept of background in background music. They play loud, in-your-face, can’t-ignore-it, can’t-talk-over-it noise. At one restaurant I went to the ladies’ room in the hopes of escaping the onslaught. But no, four speakers blasted above the toilet stalls.

Perhaps I’m over sensitive. I have poor hearing. What is strange with hearing loss is that it’s not just that sounds are muted. Sounds are distorted. It’s difficult to ‘sort’ the sounds that you do hear. Since one ear is worse, I don’t hear in stereo and cannot localize sounds. They come at me from all directions. And some sounds become downright painful.

But I’m not alone. Looking around restaurants, I see many patrons straining to carry on a conversation. People lean over their plates and raise their voices, adding to the cacophony. Why do you go to a restaurant? I go 1) to be social with the people I’m with and 2) to eat. In that order. I don’t go to a restaurant to listen to music. I’m willing to bet that’s the same for most people. But the restaurateurs haven’t cottoned on to that yet.

On our last day in Seattle we headed for a café our daughter had recommended. It had a French name and the menu was in French, with English explanations under each item. They were obviously trying to cater to French ex-pats or Americans who longed for Paris. They got the small, dark wood tables right. The service was slow and not very friendly, just like Paris. And the coffee was good. But the large screen televisions over the bar and the piped music didn’t let us forget we were in the U. S. of A.

Undress Me in the Temple of Heaven (Or Wherever I’m a Stranger)

Take two Ivy League graduates who don’t know each other very well and who have more hubris than common sense and plop them into a Shanghai hotel with cockroaches and cold running water. Have them interrogated by Chinese officials and chased by doctors with rusty syringes. Put them on long train and boat rides with crowds of people who speak only Chinese, sometimes a local dialect not found in the guidebooks. Present them with communal toilets consisting of a wooden plank over a hole in the ground. Add some fevers, food poisonings and the barely breathable air of Beijing. It’s no wonder that they begin first to quarrel, then to unravel. That’s the gist of Susan Jane Gilman’s page-turner memoir of her trip to China in 1986.

My own travels pale in comparison. China was not an option when I was young. But I had a few scary moments and challenging toilets when I hitchhiked with a girlfriend in Spain and Morocco in the early seventies. And I can easily relate to the tensions of being together with a new friend all day every day under stressful conditions. But fortunately we had (some) more common sense and less bravado than Gilman and her travelling companion.

Hitchhiking in Spain, we were picked up by a young man who stopped at scenic spots along Costa del Sol. The coast was barely developed then and the views were magnificent. We were so grateful, until he pulled over at a remote spot with no view, turned around and asked in high school English, “Would you like to do something with me?” There was nothing to do but get out of the car and walk to the next village.

In Morocco, we exchanged our thumbs for cheap bus tickets. On the way to Fez, the bus stopped in the middle of a large dusty field. The men went off to one side of the road, the women filed behind an adobe shed on the other. We decided we could wait. We spent the night at a private home in Fez. When we made our needs known to our hosts, they gave us a stub of a candle and showed us down to a dark, empty cellar. We searched until we found a small hole, smaller than a billiard pocket. We took turns holding the candle while the other squatted and aimed. At least there were no gawking onlookers like in Gilman’s China.

We befriended an American man who offered to drive us to Ceuta to get the boat back to Spain. We stopped in a small town on market day. My friend and I explored the stalls selling spices and fruits. But our new friend found something more interesting: a gambling stall. After only minutes, we began to hear loud voices. Our new friend was in the midst of an angry group of men. They realized my girlfriend and I were with him, and surrounded us as well. Three lone foreigners in a mass of angry men in a small town somewhere in Northern Morocco. Suddenly, like a guardian angel, a tall, dark-skinned Berber woman appeared, the only woman in the marketplace. Dressed in pristine white robes, she flashed a gold tooth as she yelled at the men. This woman commanded respect. She waved toward our car, and the crowd, disgruntled, let us climb in. “But I was having a lucky streak! I didn’t get my winnings,” our male friend protested. Inspired by our guardian angel, my girlfriend and I shouted, “Drive!”

Susan Jane Gilmore wrote her memoir from the distance of twenty years, many of them spent in foreign countries. From this perspective, she understands how foreigners are infantilized, especially in a culture as different as China. She and her companion weren’t just undressed, they were stripped: of their language, social competence, and about everything that constituted their identities. You don’t have to go to remote China to experience that, just ask the nearest foreigner in whatever country you live in. With the wisdom and humility of hindsight, Gilmore describes the process in fascinating, and frightening, detail.

You can find Gilman’s book on Amazon and vist her website (www.susanjanegilman.net) and blog (susanjanegilman.blogspot.com).

The search for discipline

The members of the Stockholm Writers Group have various strategies to encourage and coerce each other to write. The strategy of deadlines is the backbone of the group. You have until midnight Saturday night to post your manuscript when it’s your turn to be critiqued on Wednesday. Then there’s the buddy system. We pair up to support a ‘buddy’ writer. This takes different forms, from breakfast meetings to what can only be described as Internet harassment by e-mail and Skype.

The most effective strategy has been March madness. We challenge each other, and ourselves, to write at least 15 minutes every day during the month of March. Writing 30 minutes every other day, or 3 hours on a weekend, doesn’t count. Fifteen minutes every single day.

The competitive aspect is one part of its success as a strategy. The ‘do-able-ness’ of fifteen minutes also helps. Many of us wait for that elusive block of time we think we need to work on our manuscript. But we are surprised at how much can be done in a quarter of an hour. Or we wait for the creative muse to arrive on our doorstep swathed in sunlight, to step lithely in, place the pen in our hands and guide it across the page. Hogwash. It’s blood, sweat and tears. Or, at least, lots of ink-stained fingers and crumpled papers, or mouse-arm as the case may be.

The regularity of the March madness strategy is perhaps its greatest strength. When I visit my characters everyday, I carry them with me throughout the day. My writing challenges simmer on a back burner, in a big pot of characters, setting and plot. They mingle and stew as I go about my day. When I sit down for my minutes of madness, I don’t need to read over my last entries to see where my characters are in the plot. I just lift the lid, inhale, and I’m ready to carry on where I left off. More often than not, the quarter hour morphs into an hour.

My writing buddy and I exchange Internet chats. We refer to our periods of ‘madness’. It must be madness: putting so much effort into an endeavor with a distant and unlikely payoff. And it’s also our escape: an escape from our day jobs, our everyday lives. Don’t get me wrong, it’s not that we have boring jobs or wretched lives, quite the contrary. Writing is a form of meditation, it takes us both into ourselves and outside ourselves. Things happen when I write, ideas appear and connect in a way that they don’t if I just sit and think. Some people call it therapy and I agree that, like therapy, it is both painful and healing at times.

Like meditation or therapy, writing demands discipline and regularity. With a smug sense of accomplishment, I e-mailed my fellow writers that I had written at least fifteen minutes each day of March. One of them writes back, “Me, too! Who wants to join me on to Midsummer? Aprayjune Madness!”

My smugness dissolves and I reply, “Blast you! Are you trying to make writers out of us? I’m in.”

The joys of technology?

If you are reading this blog, I’ll assume you have some technological savvy. At least enough to get on Internet. But are you interested in technology?

Today a (younger, male, computer geek) friend visited me the first time since I set up a Bose speaker in my kitchen, with an Apple airport express, so that I can listen to good music and Internet radio. He was impressed.

“You must be really interested in technology,” he said.

“No, I’m not,” I replied. “But I do enjoy my music and news in English.”

A colleague did her doctoral dissertation on elderly people’s attitudes about technology. She did not find a negative attitude, other than some frustration with buttons that were too small or inaccessible and instructions that were indecipherable—frustrations that people of all ages have expressed at some time. She found that most people were not interested in technology per se, but were interested when they realized that it could fill an important function in their lives.

My husband tried to get my mother interested in computers. “You can put all your recipes on a computer,” he insisted.

“Why would I want to spend all that time typing them into the computer?” she asked. “I’ve got them very nicely organized in card files.”

This was in the early nineties, before there were sites where you could search and download an endless number of recipes for free. She would have enjoyed that. She did get very enthusiastic the summer of 1997 when the Mars Pathfinder sent real time

Mars Pathfinder

videos. Now that was something she couldn’t have in a box at home! Once I taught her to maneuver the mouse (“hold it on the pad, not in the air!”) she was off and exploring the Martian landscape with thousands of other space nerds.

As my colleague’s dissertation concluded, it’s not the technology that is important, but the function. She studied old people who had not encountered everyday technology until after retirement. But I think her findings can be applied to about everyone except diehard techno geeks.

I didn’t tell my visitor about the system we have set up to rent movies from iTunes (not generally available in Sweden). It was a hassle to set up, and we had to buy a new television to support it, but now I can choose what I watch. Since I don’t like reality shows, game shows, talk shows, the Eurovision Song Contest, thrillers or anything with violence, that means I don’t like 90% of what is broadcast in Sweden.

But telling him about that might have been bragging.

In the spotlight!

This month, February 2011, I was selected to be in the ‘spotlight’ by the Gerontological Society of America. You can see the website here (http://www.geron.org/Membership/member-spotlight/904), or read below.

Marti G. Parker, RPI, PhD, Associate Professor of Social Gerontology

Aging Research Center, Karolinska Institutet & Stockholm University, Stockholm, Sweden

Q: How did you get interested in the field of aging?
A: My childhood was spent in a small university town in Alaska where there was hardly a soul over fifty. Old people were exotic! So I was curious to meet them when I began working in hospitals, first as nurse’s aid and then as physical therapist.

In regards to research, I more or less fell into the field of aging, but have had no regrets. Studying young people is like reading half a mystery novel. My Bachelor’s from Antioch College was in sociology and already then I was interested in medical sociology. I came to Sweden to learn about the health care system but ended up studying physical therapy. Some years later I was able to combine PT with my interest in sociology when I studied physical functioning and social class in the elderly population.

Q: What are your key responsibilities?

A: I head the Aging Research Center together with Laura Fratiglioni. ARC has nearly 50 researchers with backgrounds in psychology, sociology, medicine, epidemiology and social work. The phrase ‘herding cats’ comes to mind. The challenge is to maintain respect for each other’s disciplines, to strive for understanding and to identify common areas of interest. As well as keeping a high international research profile, ARC endeavors to disseminate research to geriatric care and social services, as well as to participate in development of social policy at the national and local levels.

Q: What has been your most memorable experience in gerontology and aging research?

A: Most memorable are perhaps the old people I met while working clinically. They taught me so much. My elderly patients in Sweden had more patience than people my own age when it came to teaching me about Swedish culture, and they never complained about my accent.

In research, I enjoy seeing a students’ eyes light up when they realize how fascinating, and complex, it is to study aging. I also like the challenge of stumbling on evidence that crushes hypotheses, especially my own. Back to the drawing board!

Q: How do you feel GSA serves the field of gerontology and aging research?

A: The conferences and journals facilitate networking and growth in the field. I especially appreciate the multi-disciplinary nature of the meetings. As a PhD student, I found the meetings friendly and encouraging. Even ‘big names’ in aging research would stop by to discuss my poster. I now bring my co-workers to the annual meeting to showcase their work and to network internationally. An added pleasure at recent meetings is the chance to meet my daughter, Linnéa Smolentzov, who attends as a PhD student from Clemson University.

Q: Tell us a little about your most recent activities/accomplishments?

A: A major focus of my work has been physical functioning and how to measure it in the elderly population. I’ve gone on to look at other health indicators and to follow different health trends over time. I also lead a study of women’s care utilization and another study focusing on complex health problems. The Swedish government has recently become aware that the care system does not serve well old people who need extensive care from multiple providers. As in other countries, collaboration between different kinds of providers is poor.

Data collection for the third wave of SWEOLD is now in progress.  SWEOLD is a unique data set that builds on a nationally representative interview survey started 1968. So each wave that is added provides longitudinal data over a longer sector of the life course. I’m also preparing for an interview survey of centenarians in Sweden. This will be in collaboration with four other countries under the leadership of Jean-Marie Robine.

Q: What activities do you have outside research?

A: I enjoy walking in the Swedish countryside and writing novels and short stories. Oddly enough, my stories are mostly about old people. If you think it’s hard to publish scientific articles, try publishing fiction! I am also active in our local Bahá’í community.

Q: Have you had an important mentor in your career? If so, how did it make a difference?

A: I’ve been privileged to work with a number of gifted researchers who were generous in their support, from my first research job at Harvard with Ellen Jones and Christine Bishop, to contact with Nancy Pedersen and Margy Gatz during my doctoral work. The high standards these researchers set was sometimes intimidating, but also stimulating. My doctoral supervisor, Mats Thorslund, was the one really responsible for getting me into gerontology. He saw my talents and pushed me to develop them.

Three days in Haifa

In the end of October, a friend and I flew to Tel Aviv, and then took the train to Haifa. It was wonderful to be transported back into summer (25 C). Even more wonderful was to walk the Bahá’í Terraces and spend time in the Shrines. I’m hoping the warmth—the spiritual warmth—of those days will get me through the winter.

Back in Sweden, people ask about my trip. I can tell them about the sunshine, the intense blue of the Mediterranean Sea, the fresh persimmons from the breakfast buffet. But it’s more difficult to describe the really important part of the journey.

Most people can understand the experience of being in a beautiful garden. To be on the Terraces in the midst of Haifa is truly a magical experience. Haifa is a chaotic city, having sprung up haphazardly, clinging to the side of a desert mountain. The architecture, the streets, the people are so diverse, at times dissonant, at times delightful. Cars park on the sidewalk, forcing pedestrians to walk in the streets. Drivers honk constantly, blending with the harbor noise in an urban-industrial cacophony. On a short walk down a steep side street, I see brilliant bougainvillea spilling over stone walls, the dried carcass of a cat, and the inevitable signs of city dogs. One walks carefully on the sloped streets of Haifa.

We leave the hotel on the top of Mount Carmel, and enter the Gardens through a gate and enjoy a magnificent sweeping view of the city.

We head down on pristine stone steps, some straight down, some arc around to the side. On every Terrace, we pause to rest and enjoy the peacefulness.

On some levels, the landscaping is such that you can barely see the surrounding city. On other levels, your vision is directed to the city, to the intense blue sea, the mountains to the north, or to Acre across the bay.

Water runs down either side of the stairway, with pools and fountains on the Terraces. The bubbling water music masks the traffic and harbor noise.

(Israel is a desert, so water for the fountains circulates in a closed system. Read more about the irrigation system here. )

The heart of the gardens is the Shrine of the Báb. The dome of the shrine was covered during our visit as part of an extensive renovation. The base of the shrine is visible, and the Shrine itself can be visited.

The Shrines, this one on Mount Carmel and another across the bay, were the main reasons for my three-day visit. And this is what is more difficult to explain. What is so special about sitting in a room with whitewashed walls, lined with oriental carpets, facing a space filled with flowers and candles?

For me, and Bahá’ís around the world, the space is special, sacred. I feel it when I approach the Shrine, and the feeling envelops me when I enter. I am grounded; I am connected. First of all, I feel the connection to the other people in the Shrine. I have never seen them before, may never see them again. We come from different cultures and countries, each with our own set of experiences, sorrows and dreams. We share a reverence that goes beyond our differences.

Second, I feel connected beyond the space and time I inhabit. The universe, infinite history, I feel simultaneously infinitesimal and empowered. My soul soars. Then my nose itches, my foot cramps, or the man next to me burps loudly. How quickly one moves from the sublime to the mundane.

Nonetheless, a fragment of the specialness, the sacredness remains with me. I pack my suitcase and head for Tel Aviv and the flight home. I take memories with me, and leave part of my self behind.