Fearfully & Wonderfully Body Scanned

doctors-office-1944117_1920

“Take off all of my clothes?” My voice intonates the last word as a question, rather like a child who asks her teacher if she has to complete all of the homework assignment.

I am sitting on an exam table under fluorescent lights in a clinic.  I feel cold, not only because it is an unseasonably cold April, but also because there is a deep loneliness associated with clinic visits and full body scans.

You lie naked as a stranger examines every bit of your skin. They concentrate on freckles, moles, and imperfections with frowns and furrowed brows. A magnifying glass assists them on the troubling areas and a computer helps them document what they see.

I feel an indignity as I wait, a feeling of vulnerability and loss. An indignity manifest in a naked body, the words of Adam and Eve reverberating through the centuries “I was naked and ashamed.”

I am acutely conscious of my own frailty and humanity during these times. I am astute at covering my imperfections, at dressing and acting my part in the world where I daily interact. But these moments erase all of that.

And yet, I have come here voluntarily. I have come here because I know that a short time of discomfort is far better than a diagnosis of a skin cancer. I know this well because a few years ago I was diagnosed with a skin cancer. Caught early, I now bear a beautiful scar, a war wound of sorts reminding me that scars are evidence of battles fought and souls made stronger.

We live in a world where our aging bodies betray us and tell a different story than the story that we feel. We watch as through the years people begin to respond to us differently. First, we are masters of the universe, we are young, and we are beautiful in our youth, even if we are not beautiful in our looks. We walk through this time with little thought to the older among us, or to the ones who have bodies that do not work as ours do. We may interact with a grandmother or a cute, elderly neighbor, but in our age-segregated society, we do not really know them. Out of embarrassment, discomfort, or just plain ignorance we avoid those who are trapped in bodies that do not function the same as ours do.

Then middle age comes along and the jokes begin. “Look how she’s aged” we whisper with giggles, certain that we don’t bear those same marks. But then, we catch sight of ourselves in car windows, and we wonder who we are and how we got so old, so fast. We continue to live, but the reflection that looked back at us from the car window showed us a reality that we would rather avoid.

And then the phone calls begin to come. One friend has had a heart attack; another friend is given four months to live when cancer is found throughout their body. Friends are diagnosed with diabetes and heart disease, arthritis, and cataracts. Funerals that used to be for others are now for us and ours.

We are eternal souls in temporary bodies that will need a new heaven and a new earth to redeem a broken process.

We still think we are immune – except for those now yearly physicals or body scans, where we lie naked before God and a stranger. Perhaps it is in those undignified moments that we realize that we aren’t so different from our friends. Then someday, the phone call will be about us. It’s in those times that we realize the reality of our humanity. Our scars, our freckles, and our moles on our earth suits are more pronounced, and we wonder how it will all end.

My faith tradition affirms that I am “fearfully and wonderfully made”.  And I don’t think that just means the young and able among us. Even as those who are fearfully and wonderfully made, we still need medical exams and physicals, body scans and preventive health checkups. We who are fearfully and wonderfully made need to brush our teeth and wash our bodies, eat healthy foods and exercise. In coming to earth in a human body, Jesus too was bound by his earth suit. He got hungry, tired, and dirty. He needed food, rest, and soap. He watched people get sick and die, and he didn’t heal all of them.

We are eternal souls in temporary bodies that will need a new heaven and a new earth to redeem a broken process.

How does one embrace every stage of life, appreciating what was and what is? How does one move gracefully through these seasons, putting trust in the Creator not the created; believing that there is something profoundly beautiful in our aging bodies? What does a theology of aging look like? What does holiness look like as I face my birthday and my body scan every year?

Before I have figured out the answers to those questions, the body scan is over. I am told that I don’t need to come back for another year. I am left alone with my body and my thoughts in a room that is still cold.

I get up and get dressed, inhaling a breath of thanksgiving. I am fearfully and wonderfully body scanned, and right now, that is enough.

Unequal Treatment

These past two days I’ve been at a summit on race and equity. Specifically, A Call to Government and Community. The conference goes across spheres and participants represent housing, justice, immigration, education, the arts, and health. It has been full of stories and ideas –ideas that I agree with and ideas that I don’t agree with. Overall, I feel privileged to be a part of this conversation.

Taking ownership for my part in racism is not easy. There are times when I think “Well, I didn’t do that” or “I don’t think that.” But, as difficult as it may be for me to admit it, I am part of a bigger picture that benefits white people.

In a piece called “When white people don’t know they’re being white” Jody Fernando says this:

When white people don’t recognize how our position of cultural dominance influences us – when we don’t know that we’re being white – we can be like bulls in a china shop, throwing everything in our wake askew without even realizing what we’ve done. For us, this understanding begins with learning a perspective of cultural humility and seeking to understand another’s experience without judgment.  May more of us boldly begin to walk on this long and winding path.

Part of what the last two days have been then, is a soul-searching on what this means to me personally and professionally.

*******

In 2002 the Institute of Medicine released a report called Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.

The report was a landmark study that documented the disparities that racial and ethnic minorities experience even when their insurance and income are the same. Prior to the study, many thought that the narrative of disparities verbalized by both patients and health professionals was just that – a narrative. Or they thought that it was about health care access. The conventional wisdom was that if you give a person health care access the disparities will go away.

In fact, they found this to be categorically false. In compiling hundreds of studies across the nation, documented disparities were found in almost every area of health care. The results were absolutely clear: Racial and ethnic minorities get poorer quality of health care then white people. Here are just a few of the disparities that were found:

Cover of "Unequal Treatment: Confronting ...

  • Receipt of appropriate cancer treatment
  • Pain control – Minority patients more likely to be under-medicated for pain than white patients (65% vs. 50%), more likely to have severity of pain underestimated by physicians
  • Mental health services – “plagued by disparities.” One study indicates 44% of White English speakers to 27.8% of Blacks received treatment after a diagnosis of depression.
  • Heart procedures – including bypass surgery
  • Diabetes – from diagnosis to amputations disparities were found in diabetic care
  • Pediatric Care – Less satisfaction, cite poorer communication, perception of lack of response

It is a thorough report that shows many factors contributing to these disparities, some of which are stereotypes, unconscious bias, and lack of cultural competency. The report gave a number of recommendations and also demonstrated that we have a long way to go to provide equal treatment for the minority populations in the United States.

And that brings me to Tuskegee. 

Between 1932 and 1972 the public health service of the United States enrolled 600 poor, black men into a study to document the effects of untreated syphilis. Approximately 400 of these men had syphilis before the study began. The men enrolled thought they were receiving free health care from the government and they were promised food, burial insurance, and medical care for participating in the study. They were merely told they had ‘bad blood’ and were never treated for the disease. In the early 1940’s Penicillin had become a standard and effective method of treatment for the disease. None of these men received penicillin, in fact – treatment was never offered for 40 years. The study is known as the infamous Tuskegee Syphilis Experiment.

It has been 42 years since Tuskegee and to this day, it is difficult to get African Americans to participate in research studies. It does not take a rocket scientist to wonder why.

It was 30 years after Tuskegee that the report Unequal Treatment was released.

“For a serious offense,” writes psychiatrist Aaron Lazare “such as a betrayal of trust or public humiliation, an immediate apology misses the mark. It demeans the event. Hours, days, weeks, or even months may go by before both parties can integrate the meaning of the event and its impact on the relationship. The care and thought that goes into such apologies dignifies the exchange. For offenses whose impact is calamitous to individuals, groups, or nations, the apology may be delayed by decades and offered by another generation.”*

************

I am a white woman. Anyone who reads this blog and has seen any pictures knows this. I did not grow up in this country and did not think about race – ever. I was raised as a privileged white minority in a country that still had memories of British occupation where whites ruled and were regularly sent to the head of the line. I now work as a nurse in public health with minority populations and regularly confront issues of racism and unequal treatment in health care.

The disparities that happen in health care have historically been wrong. The disparities that occur these many years later are wrong. There is no other word for it. They are wrong and a corporate apology is in order.

And I want to apologize. It doesn’t matter that I was not involved with Tuskegee. It doesn’t matter that I was not one of the care givers in any of the studies documented for Unequal Treatment. What matters is that I am part of a health care system that has routinely discriminated against people because of their color; a system that has treated people unequally based on their outward appearance, not their presenting symptoms.

To use some of the words of Aaron Lazare who I quoted above – these offenses were calamitous to individuals, to groups, to our nation as a whole.

In Notes from No Man’s Land, author Eula Biss talks about being a teacher at a public school in Harlem. A young boy a foot taller than her hissed at her in the hallway. As she sat in the principal’s office, waiting while the principal went to “hunt him down,” another kid stepped into the office. She writes the following about the interaction:

“I’m sorry I sexually harassed you.” I stared at him. He wasn’t the same kid. “But it wasn’t you.” I said finally. “Yeah,” he said as he pulled down his baseball cap and started to walk away, “but it might have been my cousin.”*

So today, as the conversation on race and justice is at the forefront of my mind, I borrow from the last sentence of Eula’s book. I apologize for the unequal treatment that is a present part of our health system. I apologize for Tuskegee. Because no – it wasn’t me — but it might have been my cousin.

*As quoted in Notes from No Man’s Land by Eula Biss page 189

Note: this blog post was adapted from a piece written in February, 2014

Raccoons, Tigers, and Okapis and How Where You Live Matters

diversity

“Pooling people in race silos is akin to zoologists grouping raccoons, tigers, and okapis on the basis that they are all stripey.” from Genes Don’t Cause Racical Disparities, Society Does

An article from The Atlantic, as quoted above, says this “Researchers are looking in the wrong place: White people live longer not because of their DNA but because of inequality.”

It’s NOT about race people! 

Basically, billions of dollars have gone into funding studies that look at race as a basis for health disparities when, in fact, it is far more about living conditions. For years conventional wisdom has argued that there is really nothing we can do about these health disparities, because it’s really about biology. But a review of the literature showed none of that. Jay Kaufman, lead author of the study “The Contribution of Genomic Research to Explaining Racial Disparities in Cardiovascular Disease: A Systematic Review” says this:

“If you show that this is a predisposition that is genetically determined—black people just have this gene, there’s nothing we can do about it, this is just nature—then society is completely absolved. We don’t have any responsibility to solve this problem….If you show that it is because of racism and injustice and people’s living conditions, well, then, there is some responsibility and we have to do something about this.”

One of the things that we pay a lot of attention to in public health is something called the “social determinants of health.” The social determinants of health are defined as “the conditions in which people are born, grow, live, work and age, including the health system.” This takes into account not only your genetic code, but also your zip code.

Here is an example: Four years ago I did some consulting work in Washington state for community health workers. One of the classes that I held was in a public housing space in Tacoma, Washington. The space was beautiful. It was a ‘mixed use housing’ area which means that some people owned their homes while others rented. There was a beautiful playground, a clinic, an assisted living space, and a school down the road. But when I asked someone who lived there where residents purchased food, she looked at me and said “It takes three different bus rides to get to a grocery store.” This is what we call a “food desert.” Right across the street you could buy 1500 calories of junk for a dollar and yet it took a major part of the day to buy good food.

A researcher who goes into that community, a community largely made up of “people of color,” may find high rates of heart disease. But it has little to do with the color of their skin, and perhaps a lot to do with the fact that healthy food is so far away.

All of us, regardless of our station in life, interact with the world around us. And it is in this world that our health is created. So if we live in a neighborhood that has clean air, wide sidewalks, well-lit streets and play grounds, along with affordable farmers markets for fruit and vegetables, we have a far better chance at health than the person who has none of these things. Turns out that person is far more likely to struggle with asthma, lack of physical activity, obesity and poor nutrition. It also turns out that most of “those people” end up being people of color.

Where we live matters! 

In the PBS series “Is Inequality Making us Sick?” questions about the social determinants of health are asked. Like the article in The Atlantic, the answers are troubling, because it’s a lot more to do with our neighborhoods and zip codes than our genetic codes. And that means we can do something about it.

All of this is best summed up in this statement:

“When it comes to why many black people die earlier than white people in the U.S., Kaufman and his colleagues show we’ve been looking for answers in the wrong places: We shouldn’t be looking in the twists of the double helix, but the grinding inequality of the environment.”

But, like almost everything, it is far easier to write about it, then to take concrete action and actually do something about it.

Cross-cultural Connection

Recently I went to an outreach center in a different part of the city, a few blocks from the subway and behind the mosque in Roxbury. This area is perhaps the most diverse area in Boston. Here people from all over the world find their homes in apartments and houses. Residents are from Somalia, The Sudan, Ethiopia, Iraq, Senegal, Nigeria, Ghana and many more places. A large community health center in the middle of the community attempts to meet a myriad of health and social needs of residents.

We have tried to outreach to this community with health education for about a year and a half. We partner with a community based organization who are part of the community and committed to working within to make it a healthier and better place to live. I love this group. They are smart and funny. They work hard to create safe places where health messages can be heard and understood.

Tuesday was a breast health education session delivered to Somali women. They were all over 50 years old so in the age range where the majority of breast cancer cases are found to occur. Through interpreters and funny stories, poignant re-telling of hard events and sharing of different cultural beliefs we went through the session page by page. Time stopped as we gathered in a hot room talking, listening, learning. Between trainers, attendees, and a colleague we were from Nigeria, Ghana, Ethiopia, Eritrea, Somalia, and America.

This is where I learn why certain myths about breast cancer exist – for they don’t come out of mid-air, rather they are based in stories and events. This is where I learn that the women present believe that trauma to the breast causes breast cancer. “We come from a place where there is war” says one. “And the soldiers take their guns and hit us in the breast to keep us moving. Then we get breast cancer.” We talk about this and I’m not sure how far we get. It will take more conversations, more events, more relationship building to convince them that this is not founded on fact, on evidence, but on story.

This is a world I love. A world where interpreters and native speakers gather with others and connect over a common cause. A world where it doesn’t matter that the session was supposed to take 45 minutes and it took an hour and a half. A world of women from different cultural backgrounds, where I in my western clothing and they in their Somali clothing, head scarves wrapped tight, could begin the long dialogue of understanding. A world where skin color varies from pale cream to glowing, dark brown and every shade between.This is a world that resonates soul deep. My heart was full of the joy of connection and belonging. This is a world I know. A world I love.

It’s times like these that the early mornings and occasional mediocre days of the working world fade into the background, gloriously overshadowed by cross-cultural connection and with this, contentment.

Readers – I want to connect you to an amazing resource today! A friend of mine from years past has started a service called Kids Books Without Borders. Gail grew up overseas in France with a British mom and an American dad. And she loved to read! She has collected over 2000 books! 2000 BOOKS!!! And she now extends this love of reading and books to those who live overseas. All she asks is that you pay the postage. This is what Gail says:

Does your family live overseas and enjoy reading?  I have collected over 2000 books, available to you. I will send you a box of books to a US address or directly to you overseas.  All books are free. If shipped in the US, postage is also free.  If shipped overseas, I ask that you pay half the postage. Check out my website and submit a request.  I will then send you my booklist, so you and your family can shop!  

Think Christmas! Think Books! And then contact Gail at kidsbookswithoutborders.wordpress.com

Unequal Treatment and Tuskegee

“For a serious offense writes” psychiatrist Aaron Lazare “such as a betrayal of trust or public humiliation, an immediate apology misses the mark. It demeans the event. Hours, days, weeks, or even months may go by before both parties can integrate the meaning of the event and its impact on the relationship. The care and thought that goes into such apologies dignifies the exchange. For offenses whose impact is calamitous to individuals, groups, or nations, the apology may be delayed by decades and offered by another generation.”*

In 2002 the Institute of Medicine released a report calledUnequal Treatment: Confronting Racial and Ethnic Disparities in Health Care

The report was a landmark study that documented the disparities that racial and ethnic minorities experience even when their insurance and income are the same. Prior to the study, many thought that the narrative of disparities verbalized by both patients and health professionals was just that – a narrative. Or they thought that it was about health care access. The conventional wisdom was that if you give a person health care access the disparities will go away.

In fact, they found this to be categorically false. In compiling hundreds of studies across the nation, documented disparities were found in almost every area of health care. Here are just a few of the disparities found:

Cover of "Unequal Treatment: Confronting ...

  • Receipt of appropriate cancer treatment
  • Pain control – Minority patients more likely to be under-medicated for pain than white patients (65% vs. 50%), more likely to have severity of pain underestimated by physicians
  • Mental health services – “plagued by disparities.” One study indicates 44% of White English speakers to 27.8% of Blacks received treatment after a diagnosis of depression.
  • Heart procedures – including bypass surgery
  • Diabetes – from diagnosis to amputations disparities were found in diabetic care
  • Pediatric Care – Less satisfaction, cite poorer communication, perception of lack of response

 Many factors contribute to these disparities – it is complex and the report gave a number of recommendations. It demonstrated that we have a long way to go to provide equal treatment for the minority populations in the United States.

*************

Between 1932 and 1972 the public health service of the United States enrolled 600 poor, black men into a study to document the effects of untreated syphilis. Approximately 400 of these men had syphilis before the study began. The men enrolled thought they were receiving free health care from the government and they were promised food, burial insurance, and medical care for participating in the study. They were merely told they had ‘bad blood’ and were never treated for the disease. In the early 1940’s Penicillin had become a standard and effective method of treatment for the disease. None of these men received penicillin, in fact – treatment was never offered for 40 years. The study is known as the infamous Tuskegee Syphilis Experiment.

It has been 42 years since Tuskegee and to this day, it is difficult to get African Americans to participate in research studies. It does not take a rocket scientist to wonder why.

It was 30 years after Tuskegee that the report Unequal Treatment was released.

************

I am a white woman. Anyone who reads this blog and has seen any pictures knows this. I did not grow up in this country and did not think about race – ever. I was raised as a privileged white minority in a country that still had memories of British occupation where whites ruled and were regularly sent to the head of the line. I now work as a nurse in public health with minority populations and regularly confront issues of racism and unequal treatment in health care.

The disparities that happen in health care have historically been wrong. The disparities that occur these many years later are wrong. There is no other word for it. They are wrong and a corporate apology is in order.

And I want to apologize. It doesn’t matter that I was not involved with Tuskegee. It doesn’t matter that I was not one of the care givers in any of the studies documented for Unequal Treatment. What matters is that I am part of a health care system that has routinely discriminated against people because of their color; a system that has treated people unequally based on their outward appearance, not their presenting symptoms.

To use some of the words of Aaron Lazare who I quoted above – these offenses were calamitous to individuals, to groups, to our nation as a whole.

In Notes from No Man’s Land, author Eula Biss talks about being a teacher at a public school in Harlem. A young boy a foot taller than her hissed at here in the hallway. As she sat in the principal’s office, waiting while the principal went to “hunt him down”, another kid stepped into the office. She writes the following about the interaction:

“I’m sorry I sexually harassed you.” I stared at him. He wasn’t the same kid. “But it wasn’t you.” I said finally. “Yeah,” he said as he pulled down his baseball cap and started to walk away, “but it might have been my cousin.”

So today, as we near the end of Black History Month I borrow from the last sentence of Eula’s book. I apologize for Unequal Treatment. I apologize for Tuskegee. Because no – it wasn’t me — but it might have been my cousin.

*As quoted in Notes from No Man’s Land by Eula Biss page 189

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Tips for Working Cross-culturally in Health Care Settings and Beyond

Through my years of living, working, and communicating across cultural boundaries I’ve realized two things that sum it all up: one — this road is humbling and two – it’s a life-long learning process. Just when I think I have it all figured out, something, someone will come into my life and challenge my thinking and my well-worn tool box of ‘how to live and communicate across cultures’.

This is setting the stage for this post that is co-authored (though she doesn’t know it yet) by my cultural broker, colleague, and close friend Cathy. Cathy has taught me much about living and working across cultural boundaries. We have worked together to bring resources and workshops on culturally responsive, culturally competent care to health care providers in the Northeast for a number of years. Together we have come up with this list, compiled from a variety of sources. While we work primarily with health care providers, this list can be used in other situations.

So here’s our tool box for working and communicating across cultural boundaries:

  • Be aware of your cultural values and the beliefs you hold. This is a first and critical step to being able to effectively communicate across cultures. If you don’t understand the importance of culture — why you value what you do, how you make decisions, essentially how you live all of life, then it will be difficult for you to understand how culture affects others.
  • Become a student of the culture and the community. Even if you’re an expert in a certain area it’s important to rethink your role and be willing to learn as a student.
  • Recognize differences in narrative styles and practical behaviors across cultures. Be willing to research these differences and ask questions.
  • Understand that  limited language proficiency (whether your’s or another’s) does not mean limited intellectual ability. People with limited language skills are usually capable of communicating clearly and effectively in their native language.
  • Have a high tolerance of ambiguity.
  • Seek help from bilingual/bicultural co-workers and individuals – find those who can help explain cultural nuances, the complexity of culture, dual causality and more.
  • Know the role of interpreters and learn to use interpreters effectively.
  • Allow the use of story-telling and props when speaking with others – we learn so much more in a story than in a list of facts. For healthcare providers, realize the symptoms are often in the story.
  • Include the patient and family as partners in determining both treatment plan and outcomes.
  • Recognize the primary person you are working with may not be the decision maker in the family.
  • Use empathy, curiosity, and respect as you work across cultural boundaries. Empathic listening, curious questioning, respectful observing.
  • Be able to laugh at yourself and potential mistakes — if you don’t laugh you’ll find yourself crying way too much.

What would you add to this list? I would love to hear from you through the comments.  

Chive Boursin MuffinsThis week’s muffins are a delicious savoury mixture of chives and goat cheese. Stacy says this: “I used goats’ cheese with herbs and garlic to complement the chives.  Delicious!  This one will be a surprise to those who think muffins can only be sweet.”

For Chive Boursin Muffins head here.

End of Life Care and Cultural Competency

I just finished speaking to a group of medical and nursing students on end of life care and cultural competency.

It’s a big topic.

In health care the two areas where cultural beliefs are profoundly obvious are during birth and during death. In other areas the belief systems are more subtle, the differences not always obvious.

But birth and death? These moments of coming into and going out of the world are rich with tradition, ritual, meaning, and emotion.

The first thing I ask people to do is to think back to their first memory of death in their family or community. Who was it? What were the circumstances of the death? What is their most vivid memory? What rituals and behaviors were observed by the family and/or community?

The answers are fascinating, particularly if it’s a diverse group. There are people who remember all the church bells in the town ringing — they knew someone had died because the bells were ringing at a time when they were usually silent. Others remember wailing waking them during the night. Still others will talk about death being a celebration, a party of sorts.

The important piece is that they talk. Most have never thought about this, let alone processed it in a group. And talking about their experience puts us in the best possible place to continue the discussion.

Because telling their stories helps them realize how significant those moments are, and how critical it is for them to hear the stories of their patients, to be fully present with their patients during the end of their lives.

We move forward into the discussion on the western view of the body as a machine, on how culture affects views of illness, expectations of care, and views of the process of death. We look at possible points of cultural collision – patient autonomy, organ donation, body preparation, the differences in both meaning and expression of pain and so much more.

I usually end the time with a short video telling the true story of a gentleman from Afghanistan named Mohammad Kochi. Mr. Kochi immigrated to the United States with his family and settled in California. At the time of the film he was diagnosed with stomach cancer. The film details some of his care and the disconnect and misunderstandings that occurred, resulting in his refusal of chemotherapy through a pump into his body — ultimately his death because of lack of treatment.

It is sobering and hard to watch. We sit somewhat stunned at the end and there is no gap in conversation.

How could this happen?

So preventable!

Such a misunderstanding!

But these types of cultural misunderstandings occur far too often despite the best of intentions.

There are so many things that come up in conversation, and so much to learn from each other. But we end talking about three areas where we can develop skills.

The first is in self-reflection – How do I react to cultural differences? How do I manage my own reactions? How do I negotiate with patients and families in the face of cultural differences?

The second is active listening Listening to and with the body, listening in with self reflection, listening out by learning from others; listening with the mind by hearing facts and stories; listening with the heart by being willing to hear emotions and feelings.

The third is bearing witnessbeing fully present with the person, letting them know they’re not alone, listening to their stories and their symptoms. 

As is usually the case, I leave contemplative, thinking about life in its entirety, life from birth to death. And I also leave with a renewed resolve to continue developing skills in the areas of self-reflection, active listening, and bearing witness.

Skills not only important in end of life but through all of life.