Tag: Health

Loneliness and the Jesus Prayer 

Published on by Marilyn4 Comments

community

I lay on my back in a sterile room, a fancy xray machine above and around me. I am with complete strangers, entrusting myself to their care and expertise. The burgundy hospital gown I wear is a shapeless piece of cloth, fashioned not for beauty but for practicality.

I am alone and I feel vulnerable. While I trust the strangers in the work they do, they know nothing about me other than my name, my age, and my insurance carrier. Other than that, I am an anonymous body in a big system.

They don’t know that I woke up this morning thinking about my beautiful grandson and the daughter who is his mom; they don’t know that I am thinking about my parents and how aging is not for the weak, not for cowards. They have no idea that I have five children whom I would give my life for; that not a day goes by without me thinking about them and praying for their hearts and souls.

They know nothing about me beyond this procedure.

These strangers are kind, they try and make me as comfortable as possible. They explain every step of what they will do and try and buoy me with their confidence.

In the big scheme of things, this whole procedure is small. The pain is nothing in comparison to other pain that I’ve felt. It’s just that the feelings it evokes are big.

Somehow, it feels like this pain represents the pain of my world, the pain that so many I know are experiencing. It represents physical and emotional pain. It represents the deep loneliness that many live in every day. It represents the isolation within which so many live and die.

Sociologists claim that social isolation is now endemic in American society. The number of adults who claim they are lonely is double what it was in the 1980s. This affects the overall health and wellbeing of millions of people. Both physical and emotional pain are intensified by loneliness. We are hard-wired for human connection and when that is missing, we suffer.

All this I think about as I lay, watching a stranger busily prepare for a medical procedure.

I’m alone in the room now. They say they will be back soon. The Jesus Prayer is on my lips: Lord Jesus Christ, Son of God, have mercy on me, a sinner. 

There is something about this prayer, something that reminds me that all this loneliness and pain I am feeling for the world is not my burden to bear. It is too big and it would quite literally kill me. I slowly release it, offering it up to the unseen but fully present God that I trust.

Lord Jesus Christ, Son of God, Have Mercy on me. And so it is.

Dear Primary Care Provider…

Published on by Marilyn10 Comments

Dear Primary Care Provider: 
I’ve wanted to write this letter for a long time, but never took the time. But after a morning coffee conversation with my 23-year-old daughter, I knew that I owed it to her and to the rest of the United States to write what I’ve seen, write what I know.

Because we’re frustrated. And it’s not your fault, but you are the face of medicine today. So I have a few things I want to say, and I’d like you to communicate these to your colleagues in specialty practices, to your staff, to your former professors, and to your administrators. Thank you ahead of time for listening.

  1. We don’t understand your language. You speak Doctor, and we speak The People. The dialects are completely different. We are smart and successful– but we don’t know what the heck you are saying. So train yourselves to speak with the people, not AT the people.
  2. We are so intimidated by you. Really. You frighten us. You come from a culture that is so rigid and inflexible – that would be the culture of western biomedicine – and we don’t know this culture. And your staff can be the worst. Pick your receptionists, medical assistants, and nurses carefully. Because they can make people feel so stupid and small.
  3. Our bodies sometimes scare us. Look, you study the body for a living. For most of us, high school biology was a long time ago.
  4. When we express something that feels important to us, we often feel dismissed. It’s a horrible feeling to have our vulnerability met by nonchalance. We need you to see the person behind the words; to hear the story beyond the symptoms.
  5. On that same note, I think you expect us to know more about our bodies than we do. We don’t. That’s why we come to you.
  6. Please ask us to repeat back what you have told us. That gives both of us an opportunity to clarify misunderstandings.
  7. We know you aren’t our friends, but we do talk about you at parties. We rave about you if you are good, and we tell people to steer clear if you aren’t. We are your best advertisments. All we ask is that in return you treat us with dignity and respect, and sometimes we feel like it’s missing.
  8. A little empathy goes a long way. And I think in the long run, you will realize that our visits will be shorter if you can express that empathy. I suggest you read The Empathy Exams and The Spirit Catches You and You Fall Down. 
  9. Culture matters. We view illness and health through a cultural lens. If you don’t get that, then you will fail as a true physician.
  10. After we leave you, we fight with our insurance providers. Because the fact is, the Affordable Care Act did not fix a broken system. It merely provided a bandaid. So two weeks after we see you, we usually get a bill. And that’s why we don’t keep follow up appointments. Because insurance is a multi billion dollar industry, and we can both agree that it runs healthcare.

We appreciate you and the work you have put into your education and our appointments. But we need you to know these things so that you don’t lose us.

Sincerely,

A patient, a nurse, and a mom.

PS – please teach your staff how to take blood pressures properly….just sayin’….

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

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“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

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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

From Skin Check to Confession

Published on by Marilyn13 Comments

A couple of years ago I was diagnosed with melanoma and after a biopsy and surgery I fell into the routine of regular full body skin checks or scans. My “melanoma check” was a bit over a week ago on a Friday.  I had my day all planned. I would go to my appointment, then pick up a cup of coffee, and then head to meet Father Patrick for confession.

As I waited at the desk of the receptionist I looked around me. It was early in the morning but already the waiting area was full. Every age, every color, every size, every gender, every income level.

I quickly checked in and looked around again. There was the teenager, his face scarred with acne, a mom hovering beside him dancing the awkward dance of concern and nonchalance. If scars could speak they would probably tell a story of merciless teasing by clear-skinned kids who knew how to make life miserable for one who already suffered. There was the older couple, he with a bandage over a part of his face, perhaps a result of skin surgery. And there were so many more, all of us with our imperfect skin, there to be checked over by a specialist who knew just which imperfections we should be worried about.

This yearly visit is fairly painless other than the humbling experience of having my naked body in all its wrinkled, spotted glory fully exposed to fine specimens of young male residents (where are the females in dermatology I ask you?) A resident goes over my body with a magnifying glass. Anything suspicious they swab with alcohol and take a closer look. All the while they are talking to me and asking me questions about my skin. Do you wear sunscreen? Any history of cancer? Any history of melanoma or other skin diseases? And then statements – Ah – looks like you didn’t wear sunscreen here! It’s a bit like a dentist asking me if I floss.

All I am to these physicians is a body with a skin disease. Nothing else. I am not a wife or a mom; an employee or a friend; a nurse or a trainer; most certainly not an author. It’s immaterial to them – what matters is my body, separate from my soul, my heart, and my mind. The Big Doctor comes into the room toward the end of the visit and the residents are clearly in slight awe of him. He talks about me in the third person and turns out the lights holding a black light over my leg, focusing on the four-inch diagonal scar where the melanoma first presented. See he says see you can really visualize all her sun spots here. This is called “solar lentigo” he launches into the technical name for the white sunspots that are now gleaming like stars in a dark night on my skin. For a moment I separate myself from my body as well and look down on my legs like they are a foreign thing, unattached to my person.

And then we’re done. All set. No need to come back for another year unless you see something that is cause for concern. Out the entourage goes. The residents (who incidentally looked like they were 12 years old) off to check another body.

And as I began dressing I thought about where I was going next and the juxtaposition of these two visits. From skin checks to confession. One interested only in my body, the other primarily interested in my soul, yet cognizant of the role body, soul, and spirit play in our personhood. One concerned only at that moment, the memory of my skin fading as quickly as a door closing and opening to the next patient; the other concerned on an ongoing basis – concerned with my outward roles as mom, wife, and more, but more so my inner being – my soul.

At the first visit a resident is equipped with a magnifying glass and a black light, at the second there will be no magnifying glass other than the eyes of God, there will be no black light, there will be no talk about me in the third person. It is my choice to reveal that which I want to reveal.

I am leaving a place where I am a specimen and entering a space where, as a human being created in the image of God, I have inherent worth. At one there is a Big Doctor, a specialist known worldwide, his residents trying to please at every turn.At the other – a priest relies on the Great Physician, the one who heals body and soul.The contrast has me shaking my head in consternation and amazement.

From skin check to confession. Both important but one infinitely more so. I check out of the office leaving with an appointment scheduled a year away and head to confession. My body is okay. My soul still needs checking.

And Then I Slept

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Emerson Inn quote

On Saturday evening my head was pounding and I felt half present, the result of a summer cold that hit me hard and knocked me down. It was a lovely holiday, filled with friends, family, activity, food, and games. But the stress on my body from lack of sleep and busy work and home schedules caught up with me.

So at 9pm, suddenly alone, I found myself sobbing. It all felt too much. I felt inadequate, I felt weak, most of all I felt tired. The whole world seemed upside down. And then I slept.

It is amazing how my perspective can change after a good sleep. 

One of the things I love about the Psalms is how they speak to human need, whether it be fear, depression, hunger, thirst, or sleep. The Psalmist is unafraid to voice his honest thoughts to God in the form of beautiful poetry. And Psalm 3:5 speaks to the perspective offered after a good night’s sleep:

I lie down and sleep;
    I wake again, because the Lord sustains me.

We have bodies that function best when they are cared for. Cared for in the proper sense, with healthy foods, exercise, and adequate sleep. And so many places in my faith tradition point to a God who understands our humanity, sees the complete picture. From offering breakfast on the banks of the Lake of Galilee to feeding a massive crowd who was growing hungry, we see he meets the needs of the whole person, takes into account our human frailty. And so it should be with me, understanding the person as a whole, changing my care to take into account tired bodies and worn souls.

How are you frail today? Where do you need a God who will offer you rest? Where do you need a friend who will walk beside you offering tea and hope in the journey? 

Finding My Niche in Public Health – What I Do in My Day Job

Published on by Marilyn12 Comments

I don’t often talk about what I do – like my paycheck job, the job that pays for food, rent, and children’s college tuition. But today, because it is my biggest and busiest day of the year, I want to talk about what I do. Because I have found my niche — as a nurse in public health working with patient navigators and community health workers.

I have always loved that I am a nurse. I have always worn the title RN or Registered Nurse with deep pride. First because I couldn’t believe I actually made it through school;second because I love the profession. It challenges my weaknesses and gives voice to my strengths.

But though I have always loved being a nurse, I’ve not always been a good nurse. There was the fear factor that I would do something wrong in my early days, there was an insecurity in my skill set, a sense that I still didn’t really know where I fit as a nurse.

While living overseas in Pakistan and Egypt I worked sporadically – private duty cases, teaching childbirth education, and accompanying women during labor and childbirth.

When we moved to the United States I began working as a visiting nurse, going into homes and caring for patients who had just been released from the hospital. I was restless. I knew that clinical nursing was only half the picture of what I wanted to be doing.

It was during that time I made a job change and discovered public health. Public health allowed me to use my clinical skills as well as my creativity in developing programs and presentations to use in communities. I learned more about the big picture of health and why it matters. It allowed me to focus on underserved communities, communities that don’t have as many resources like immigrant and refugee communities, like poor minority communities. I began to understand more about working with people who have the greatest need and where, with the least amount of money, you can make the biggest impact. I ended up specifically working in preventative health screening – breast, cervical, colorectal, and prostate screening. Connecting patients to doctors and clinics so that instead of waiting until a cancer lump grew and the cancer spread, the patient would be screened early; so that instead of coping with chemotherapy and drastic life changes, they would have a minor procedure.

I found my niche in a space where I began educating community health workers and patient navigators, helping them see their natural abilities as valuable and adding clinical knowledge and other skills so they could work in their own communities and effect change. These men and women were bilingual and multicultural, but often without opportunities for higher education they struggled to find a place where those skills mattered.  They are from all over the world and had made their way by various paths to the United States. They hail from Spain and Brazil, Portugal and Dominican Republic; Puerto Rico and China; Bangladesh and Somalia; the Sudan and Haiti. And they are finding their own niche in a country that is far different from the countries and places where most of them grew up.

So today we hold a conference that allows these patient navigators and community health workers to come together and learn, to come together and present what they are doing, to come together and be celebrated, to realize that they are a valuable part of our health care system.

But back to the niche – an amazing thing has happened through this process. I realize that the skills of communicating and negotiating across cultures are used regularly in this job. Those skills I felt would lie dormant and not be used again now allow me to build relationships and connections, encourage and voice understanding of the experiences of both patients and community health workers. Because all of us are outsiders that have gone through the process of adjusting to an unfamiliar world, working to carve out a niche where we can use who we are to make a small difference in the lives of some of the most vulnerable in our communities. 

If you are interested in hearing from some of the people I work with about the amazing work they do take a look at this video that we are showing today at the conference. It’s about 8 minutes long and includes both animation and stories from the community health workers. It was created by my son, Micah.

 

On Polio (and When it’s all too Much to Bear)

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None - This image is in the public domain and ...

Afghanistan – where war, Taliban, drones and mudslides keep this country of hospitality, amazing people and amazing food on its knees and in its cemeteries. And as if this country has not had enough to contend with, a little girl sits on the floor in her home made of brick and mud suffering from polio.

Sometimes it’s just too much to bear.

Polio was near eradicated. For 25 years the World Health Organization promoted an aggressive world-wide vaccination campaign. The oral polio vaccine is simple – a couple of flavored pink drops at 2 month intervals and then a final booster dose a few years later, 4 doses in all. It doesn’t hurt. It’s safe. And it works. 

Here’s a bit about polio*: It loves hot weather, thriving in conditions that kill other viruses. Although it’s primarily in children it can be spread through others, through porous borders, through trade. It lives in the throat and the intestinal tract and is spread person to person. It is spread through oral secretions and through the feces of the infected person, so in places where the sewer systems are inadequate — refugee camps, poor villages, places where many people are living in close quarters without proper bathroom facilities. Already this year, a couple of months before the true hot season has begun there are 68 cases reported worldwide. While that seems miniscule compared to the billions of people in the world, last year at this time the numbers were about a third of this. And of those 68, 54 of them come from Pakistan.

But Syria too is in trouble. Prior to the war (or uprising because uprising perhaps caters to our prim sensibilities, but let’s be honest – it’s a war) the vaccination rate of Syria was high, upwards of 90%. But that has fallen dramatically and the first case of polio in years was reported this past year.

Vaccinations and vaccinators are suspect in Pakistan, the part of the world where most of these cases have emerged. At one time the CIA launched an undercover mission, using vaccination camps as their cover. Since that time any vaccination program is suspect.

So now polio has spread to Afghanistan, and a little girl sits on the floor. The New York Times reports that it is the first confirmed case in the capital of Afghanistan in 12 years.

Sometimes it’s too much to bear. 

Too much to try to make sense of all this. I thought yesterday was bad as I was reminded that over 200 Nigerian school girls were kidnapped by an extreme Islamic group and we all finally began to pay attention, signing petitions and using hashtags because we felt so helpless and knew we could do nothing else. And then today I’m reminded of polio and its devastating effects.

What do you do when it’s too much to bear? When you work in a grey cubicle and your heart hurts? When you want to point a finger but you know three will point back at you? What do you do when you try to figure out how you can in one breath be raging about Nigerian girls and in the next be excited about a television show that keeps you captivated for two hours? When you realize your own inadequacy in everything but that which you are directly responsible for – and even then, you often feel inadequate?

What do you do when it’s too much to bear? You put your head down and pray so deeply it hurts. And then you go to work doing what you know you’re called to do for the day, because you are not the Saviour, you are only the saved and that by grace alone. 

*For more on polio see the CDC website: http://www.cdc.gov/VACCINes/vpd-vac/polio/default.htm

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