Category: Health

On Vanity and “Skiing Accidents”

Published on by Marilyn6 Comments


“I think surgery is the best, maybe only, option.” 

I’m not surprised to hear these words from the surgeon sitting across from me. Aside from his appearance (he looks like he is 12) I think I trust him. I did the google on him, and evidently his competent 12 year old hands and brain have a brilliant success rate. 

For months now I have had increasing pain in my hip. When treatments, physical therapy, and sheer grit did not work, I decided to see a surgeon. 

So I find myself sitting across from a stranger who is showing me an X-ray of my hip. What I see is not pretty. 

“Can I tell people it’s a skiing accident?” I ask. I think I whined, but I can’t remember. He laughs. He thinks I’m joking. 

But my pride is hurt. My vanity is wounded. I feel far too young to have a hip replacement, especially when I can blame it on nothing but arthritis. If only I was an athlete – a runner, a skier, an aerobics instructor! 

I am none of these things. 

I am a 57 year old woman with arthritis. 

Just saying it makes me want to curl up in dismay. 

Secretly, I think we all believe that aging is for other people, not for us. We secretly remark on how “grey and wrinkled so and so is getting,” while in the mirror the wrinkles hide under the perfect make up foundation – denial. 

Denial paints our bodies and skin in the flawless glow of youth, even as we marvel at the years weighing others down. 

Aging is not for the timid, not for the fearful, and I fear I am both. 

In late February I visited my parents in Florida. Though they live in Rochester, New York, they have tried to get away for a couple of months the last few winters. Rochester is cold, snowy, and icy. It’s a fall waiting to happen and the prospect of warmer weather drew them to warmer climates. So at the end of February I found myself visiting them in Panama City Beach.

This area is known for its incredible turquoise water and white sand. The contrast is stunning. Along with this contrast is the contrast between the young and beautiful and the snow bird aging population. 

The weekend did not turn out the way we expected, but we still deeply enjoyed each other’s company.  As I looked with eyes of love on my parents I realized that I don’t like the aging process. But as I watched them, I recognized that I am not afraid for them – I’m afraid for me. I don’t have the kind of stamina and courage they do. I don’t have the faith that they do. I am not brave. I do not want to age.

It is a relief to admit this. I do not want to age. It’s not about the wrinkles, though they are tough. It’s about the body. 

Aging is hard work, and I am lazy. Aging is for the courageous, and I am not. 

I don’t feel sorry for my parents. They have taken all the changes with incredible grace. Their minds are alert and active. They live independently. They take their pills with discipline and a good deal of humor and grace. 

I feel sorry for me – because I clearly have some things to learn about life and the body, and I better learn them quickly. 
Perhaps being honest about this surgery is my first step. Perhaps admitting publicly that I am vain, that I have to have a hip replacement, and that it is NOT because of a skiing accident, or a marathon run, or a heroic act of physical courage is the best first step. 

I wake up this morning and I take off the make up of denial, and I pray for courage and strength to face a reality that every human being who lives longer than 50 has to face: The reality of aging. 

But I still may tell people that it’s because of a skiiing accident….,

Dear Seema: The Politics of Prevention

Published on by Marilyn6 Comments

 

Note: Seema Verma is President Trump’s nominee to lead the Centers for Medicare and Medicaid Services in the United States.

Dear Seema,

I’m a Registered Nurse who works in Boston, Massachusetts. I have witnessed first-hand what it is like for people to go without insurance, to delay preventive health screening only to find out that cancer is a far more expensive problem.

There are not a lot of things that make my proverbial blood boil, but reducing access to preventive healthcare, including maternity benefits, does. It makes me so angry I can’t see straight.

Look, I get it. Health care is expensive. Someone has to pay for it. But everyone bears the burden of an unhealthy society and while the Affordable Care Act (aka Obama Care) was not perfect, it began to put some policies in place that have been needed for a long time.

I come to this not from any political party line. I am a proudly independent voter – in fact, prouder by the day that I don’t buy into that assanine system called “two party.” I also live in Massachusetts where a Republican governor put health care reform as a top priority over 8 years ago and we are slowly reaping the benefits.

 

When, at your confirmation hearing, you mentioned that coverage for maternity benefits should be optional, I shook my head in disbelief.

Optional? Optional? I had to repeat it to myself to believe that you actually said it. The argument goes that if you’re a man or too old to get pregnant, then why should you have to pay for someone to have a baby? The lack of logic and understanding in that idea astounds me! The logical conclusion is that I shouldn’t have to pay for any of the choices that others make. So, by your logic, I shouldn’t have to pay for the business man who has a heart attack and needs bypass surgery. After all, I wasn’t the one who ate and drank too much. It was him.

Maternity benefits are an essential part of a healthy society. Maternity benefits speak to the value of family and children, they provide essential care for a future generation.

As Linda Blumberg, a senior fellow at the Health Policy Center at the Urban Institute. Women says: “We buy insurance for uncertainty and to spread the costs of care across a broad population so that when something comes up, that person has adequate coverage to meet their needs,”  But insurance is not designed to be an  “a la carte approach”. “Women don’t need prostate cancer screening, but they pay for the coverage anyway.”

When as a nation did we allow politics to co-opt our health, to feed us misinformation about insurance and that terror-producing term ‘socialized medicine’? Truth is the term ‘socialized medicine’ is a made up phrase. It was first heard in the early 1900’s but came into wide use when the American Medical Association fought against a national health insurance plan proposed by President Truman. It conjured images of a hammer and sickle approach to health care that would lead us down the slippery slope to communism. That was in 1947 – and it was a public relations coup, for in the six and a half decades since that time we have allowed the term to rule us, to be thrown around willy nilly to produce fear and anger, obnoxious and ignorant voices leading the way.

Here’s what happens when you let politics coopt prevention: 

A breast cancer lump ulcerates and eats away the flesh of a breast; a cervical lesion, easily removed, grows and turns into a completely preventable cancer; a gnawing indigestion and bloated feeling turns into cancer eating away at your colon – fully preventable had screening taken place early in the disease process. You know what else happens when politics coopts prevention? Abortion rates, already far too high, go up. You can’t have it both ways – you can’t want abortion rates to go down and yet reject the notion of maternity care and birth control coverage.

Preventive health is not about being Republican or Democrat or Independent or Green Party or Libertarian. Preventive health is about the health of a society as a whole; it is about being human, living in a broken world where illness and death and “pre-existing” conditions are a reality. Preventive health and being sick is not about politics. When will we in the United States get that?

What you should want to do in your tenure is make the Affordable Care Act better! You should want to expand on it and leave a legacy that puts Obama Care into the water. You should want to make a name for yourself as a person who makes health care great, not just tolerable.

Instead, I’m shaking my head and saying: “What in the name of Sam Hill is she thinking?” 

C’mon Seema! Be a Woman. Stand up for what is right. 

 

Attending to Our Souls

Published on by Robynn Bliss6 Comments

A couple of years ago, over Christmas, we dog-sat an unusual Greyhound named Pickles. Pickles was a large and awkward canine. He stood taller than our coffee table and took up a great deal of real estate in whatever room he occupied. Connor and his girlfriend at the time had planned on exchanging gifts at our house, in our living room. They sat on the floor and gave each other their presents. Pickles oddly enough felt the need to stand right between them. For those of us looking on there was no way to see the other side. The dog was in the way. Connor and his sweet friend bent down a little lower to see through Pickle’s legs. Our youngest daughter peered around the dog’s back end. Necks were craned, bodies tilted. Eventually with amusement, Lowell told Pickles to go lay down and Pickles regretfully and unwillingly complied.

In English, we have this expression, “the elephant in the room.” Google explains it as, “a major problem or controversial issue that is obviously present but avoided as a subject for discussion because it is more comfortable to do so.” Cambridge Dictionary defines it this way, “an obvious problem or difficult situation that people do not want to talk about.”  Clearly, here in the United States, we have now an entire herd of elephants stomping and snorting, pacing and pooping in nearly every room we enter. The large, unpredictable, bull elephant is rumbling and trumpeting and he’s making lots of noise.

Marilyn feels very strongly that Communicating Across Boundaries should remain a politics-free zone. I understand that. Politics polarizes the public very quickly. Defenses go up, weapon-words are sharpened and launched and then people run for their corner. It’s virtually impossible, it seems, to have a calm conversation about these things. I suppose I shouldn’t expect anything different. We’re not merely musing over a distant theoretical system, we’re voicing values and convictions. Politics, on the level that matters, is deeply personal. It’s essentially about educating our children, keeping everyone healthy and safe, living peaceably within our communities, protecting the vulnerable, paving our streets, mending our bridges.

Last weekend our son, Connor, called from Canada. During the conversation, I made some comment related to the state of the Union and he balked, “I don’t want to talk about politics,” he said. I suspect my response was rather quick and a tad bit harsh, “I understand that. But you live in a different country where you have the privilege of breathing different air. Here it’s everywhere, it’s a part of every conversation, it’s the elephant in every room, it’s the air we breath! I’m afraid we no longer have that luxury–!”

Many of you know that I’m a Spiritual Director. When a Spiritual Director encounters elephants in the room he or she is trained to look past the elephant to the heart of the matter–to your heart which matters. We might name the elephant but we might not. What really is of critical importance is what’s being stirred up in you because of the elephant. A Spiritual Director helps you explore how you feel about the elephant, what uncomfortable places you’re avoiding and why, what it might look like to press into those places. A Spiritual Director is curious about your soul, about your responses to the world around you, about the ways you are encountering God.

It’s time to attend to our souls. There are activists among us who are resisting the elephant’s movement. There are fact checkers and ethics committee members that are scrutinizing the elephant’s loud bellows. Courts in the land, run by judges committed to “swear to tell the truth, and nothing but the truth,” are holding the elephant and his trainers to justice. But it’s our own responsibility to take care of our hearts.

How are you holding up? What emotions are surfacing in you? How are you dealing with those feelings? Can you recognize and name what’s happening inside you? Are there places of panic or fear or dis-ease welling up? Can you find the courage to step closer to Jesus with your troubled spirit? Do you know, has it been your experience, that you are deeply loved? Are there ways that you are trying to protect yourself from pain? Are you struggling to love your neighbor as you’ve struggled to love yourself? Are you isolating yourself? Do you need to seek out someone to help you hold steady to the soul work that’s ongoing in you? Are you being called to something beyond your soul’s borders? Can you identify what Jesus might be inviting you into? Is there something inside you preventing you from engaging?

This is a strange season. These are troubling times. The elephant is on the move and there’s a great deal of dust in the air. Can you take some time to tend to your own soul in the midst of the turmoil? Can you take a break from the resistance you might be involved in to ensure you’re not resisting your own center? Can you push pause on activity and contemplate your deeper core?  You might not be able to tell the elephant, as Lowell told the dog Pickles, to lie down, but maybe you can leave the room for just a little while. Give your soul a Sabbath from the messy elephant tromped up space. Take some deep breaths. And attend to your soul.

 

(*Photo credit: edie.net)

Get a Life

Published on by Robynn Bliss2 Comments

“Oh, for God’s sake…get a life, will you?”–William Shatner

 

Connor left nearly a month ago to return to the University of British Columbia. As he and Lowell pulled away from the house I felt the bottle of grief shaken within me lose its scarcely screwed on lid. Before I knew it I was drenched, inside and out, with sadness. I came into the house, sat in my chair, gently held my coffee cup and cried.

In my sad spot I remembered that this is our Adelaide’s last year of high school too and a fresh wave of grief dragged me under. It felt like my heart would break.

I wondered at the strangeness of parenting. We wrap our lives and our hearts around these miniature people. We tend, nurture, guide, direct. We attend concerts and games, plays and competitions. We give up our rights to complete thoughts, finished sentences, sleeping in on Saturdays, uninterrupted conversations, Sunday afternoon naps, free time, long showers, the late show. We trade it all in for diapers, runny noses, giggles, knock knock jokes, princesses, pirate ships, play dough, lego towers, swing pushing, nail painting, homework helping, eye rolling, door slamming, curfew pushing kids! And if we get a minute we’d admit that it was a fair trade. For the most part we’ve loved it—!

In that sad moment in my chair I wanted those days back again. I wanted another turn at it all. I wanted to hold fiercely on to the childhood of my children. They said it would go fast and for the longest time I thought they were mocking me…but now I realized with horror at how right they had been. It was over with my kids before it had really begun in me.

As I sat sipping my coffee, which now oddly tasted like nostalgia and sorrow, I thought to myself, “Robynn, You need to get a life”! I suppose it was a mild rebuke from my more sensible self to my emoting sobbing self. Even as I thought it another thought quickly jumped up in defense of me. Wait a minute…I do have a life!

I do. I have purpose. I’m a spiritual director in training. My brain is being stretched and stimulated by the program I’m enrolled in. I have a broad worldview. I’ve had the humbling privilege of travel and crossing cultures in varying places around the globe. I’m a part of an Environmental Missions effort. I’m passionate about climate change and its effects on the world. I care deeply about the oppressed and long for justice. I have deep friendships with interesting people who expand my world in significant ways. My thoughts are often outside of my inside domestic duties. I read books, I engage in conversation, I watch the occasional documentary, I listen to intellectually stimulating podcasts.

Honestly I think that’s one of the best gifts I’ve given my children. They’ve seen my heart for others. They know I have a wide circle. They’ve heard me rant about racial injustice, about welcoming the immigrant, about caring for the poor. They’ve seen my eyes fill with tears with concern for friends that are hurting. They know I have dreams and goals and longings outside of our home.

I attended an international boarding school in the Himalayan foothills of Pakistan. Multiple times a year we’d have to say goodbye to our parents. It was devastatingly difficult. But I’m convinced it was made marginally easier because we knew my parents had purpose. We knew they loved each other well. Their marriage was solid. We knew they’d be ok without us.

Kids need to know that their parents are going to be all right when they’re not around. It’s too much pressure for a child to believe that his mother’s or his father’s emotional well-being is connected to him. He needs to know they have a life without him.

There are ways we interpret our obsession with our kids that sound noble and self-sacrificing. But I wonder if we scraped those notions back down to the frame if we’d find something more self-serving than we originally thought? Does it give us a sense of importance? Are we tethering our identity solely to our role as caregiver?

I’m not saying that being a parent is not an important vital job. By all means it is! But the goal is to work yourself out of a job. We want to raise adults that are independent, that no longer need us for their daily cares. We want to train up people that know what it means to contribute in valuable ways to the world around them. They will not know about that unless we show them. It will be important to your health and the health of your progeny that you have some other meaningful thing to give yourself to.

I suppose there’s no real easy way to say this….but moms and dads –you have got to get a life! I don’t care what age your kids are now, begin, even today to imagine a little life outside of your children. Start researching ideas of what you might want to do. Pray it through. Take up a hobby that energizes you. Are there distance education classes you could enroll in even now? Are there places you could meaningfully volunteer? Are there courses offered in your community that might spark your imagination? Do you have dormant dreams that you used to think about? What would it look like to fan some of those back into flame? The little people won’t be little for long. Start now and get a life!

 

 

This is my Body–A Repost

Published on by Robynn Bliss4 Comments

I’ve been thinking about the aging process and how it plays out in my body. And then I remembered this piece I wrote three years ago. I think it relates. It seems like we need to do the work of coming to grips with our limited capacities, our weariness, our weakness. This is (still) my body, breaking and broken. 

Though they may be out there, I have never met a woman who is not consumed with food, and body image.There are those who are clinically diagnosed with eating disorders but all of us are to some degree disordered in our relationship to food and to our bodies. It started, of course, in the garden with Eve and the fruit. It was food and it spoke to her. Granted the fruit didn’t actually talk, but her soul’s enemy spoke to her and the message was mixed in with the food. Temptation with a spiritual marinade, a dipping sauce, a glaze.  Ever since then we’ve battled burgers and burritos; biscuits and beans. Our fight with food has been handed down to us through a long line of mothers.

I am no exception. I’ve wrestled food since I hit puberty. It’s a love-hate relationship. I love to eat. I hate how food gathers and stays on my body. I love the taste and smells of food; the texture, the flavours. I hate the pull and power of food. My history with food includes unseemly weight gain with entering and reentering cultures, with culture shock and stress.

Lately my body has been out of whack. My metabolism is on strike. My ability to burn calories seems to be deterred by fatigue and hormonal changes. I’ve never loved exercising. I love people. I’ll go for a walk if a friend will go with me. But a walk just for a walk’s sake seems like a waste of time. I don’t enjoy it. Now I can hardly eat anything and the weight still seems to creep on. It’s depressing. It’s disheartening.

Last week I was praying again for grace in this…. I don’t want to obsess about it. I don’t want to become consumed with myself, with food, with my body or with my feelings about my body. I was trying to release all that again up to Jesus who understands about bodies. He chose to be bodied, to take on flesh, to become a person. He came for our souls and for our bodies. He healed the lame, gave sight to the blind and hearing to the deaf. Jesus healed diseased bodies, broken bodies, bleeding bodies. He touched bodies that no one else would touch. He associated with bodies that others avoided.

As I was praying for my body and my emotions about it…these words came to mind. “This is your body.” It seemed a divine pronouncement over me, over my agonies, over my physical frame. I repeated it slowly, out loud, “This is my body. This is my body.” I felt somehow it was a remedy for my conflicted distorted soul stuck in this conflicted distorted body. This is my body. I’ve been chewing this over and over. It keeps coming to mind. As the negative thoughts come, this thought has dropped like a sweet warm blanket to cover the ugliness of my beliefs. This is my body.

At the last meal that Jesus shared with his friends he tried again to explain to them that he was about to be executed, that he would die, that he would come back to life. It was a mystery to them. They couldn’t understand it. Using what was right in front of him (the food!), Jesus, picked up the bread, and he broke off a chunk. This was a metaphor they could figure out. It was the language of survival and comfort. It was memory and mystery. It was bread. “This is my body,” he said, “Broken for you. Take it. Eat it.”

Jesus wasn’t just giving them a cute expression, a fun phrase, or a clever speech. When Jesus says, “This is my body, broken for you,” it’s significant. His broken body—his sacrifice—has the capacity to redeem me. All of me. My body. My relationship with food. All of it. His body restores my body. He offers us his broken body for our consumption. We are invited to, “take and eat”. We consume Jesus and we are satisfied. That alone means something for my food issues and my body issues and my brokenness.

In that moment at that last meal when Jesus proclaimed, “This is my body, broken for you,” it makes me wonder if in some sense Jesus himself had to come to grips with his own body and its impending brokenness. He was about to endure the profound breaking of his own body. He leans into it and he accepts it. That has implications for me accepting my own body and my own brokenness.

This holy truth, with its layers and layers of implication and revelation, has been slowly seeping into my soul this week. This IS my body. It’s the body I’ve been given. It’s no surprise to my Creator that my metabolism is malfunctioning. He’s not shocked by my disdain for exercise. He’s not horrified by longings for a piece of cake or a handful of snack mix. He actually loves me completely. From the freckles on my arms to the hair that’s coming in grey and wiry; from my ingrown toenails to my one short thumb; from the ski-sloped nose to my varicose veins…all of it designed and delighted in by my Potter, my Maker.

And it’s broken. Broken because of the Fall. Broken in childbirth for my children. Broken in India for the sake of my calling. Broken in aging. Broken in natural deterioration. Broken here for my holy now. Broken for Jesus.

We follow in his example. We mimic our model. We saw him lay down his body for the sake of his friends and so we lay down our lives for the sake of ours. It’s our way of participating in the redemption of others. We give ourselves up. We give ourselves over. And we experience that brokenness for the sake of others. Our bodies become a type of sacrifice, living and holy.

Part of the mystery includes offering to Jesus our brokenness. Our Catholic brothers and sisters understand this. When they write about suffering some of the first words out of their mouth are almost always that we get to give our suffering as an offering to Jesus. There’s certainly no sense that Jesus takes and eats us. He doesn’t consume us or use us up.  But we do get to offer up our broken bodies to him, our broken and stale bread, our broken and moldy connection to food.

That is a spiritual reality made present and tangible in our physicality. Hurting, aching, bearing, enduring, suffering. All in our bodies. St Paul wrote that he was glad to suffer, for his friends, in his body…somehow he knew he was participating in the sufferings of Christ that continue for Jesus’ body, the church. Paul understood that suffering bears fruit. He was “willing to endure anything” –and as preposterous as it sounds–he even considered it a privilege, a divine opportunity, if it would result in the rescue of another or in glory going to God.

This is my body, a holy temple filled with his Holy Spirit presence. Broken it may be. Damaged. Wounded. Lumpy. Chicken pock-marked. But there is a mystery at work in my members. And I give myself up to be consumed by others. I get to participate in that redemption-rescue mission work, where bread is broken and wine is poured.

And so, dear brothers and sisters, I plead with you to give your bodies to God because of all he has done for you. Let them be a living and holy sacrifice—the kind he will find acceptable. This is truly the way to worship him.  Don’t copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God’s will for you, which is good and pleasing and perfect. (Rom 12:1-2)

(Col 1:24, 2 Tim 2:10, Phil 1:29)

Unequal Treatment

Published on by Marilyn2 Comments

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

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’….

In Praise of Community Health Workers and Patient Navigators

Published on by Marilyn1 Comment

Yesterday was the busiest and best day of my entire work year. Every May we hold a conference for community health workers and patient navigators. The purpose of the conference is to bring this workforce together for learning, skills-building, and networking. It is a gift to work with these outstanding women and men who are serving their communities so well. Yesterday was that conference and I am once again overwhelmed by the privilege of working with these people, many of whom I have trained, others who have become personal friends.

Community health workers have been around for a while — their earliest mention was from Russia in the 1800’s. They were called “Feldshers” and were trained as layleaders to assist physicians and work in rural areas when physicians were not able to be present. The program that brought this idea to greater recognition and popularity was the successful Chinese Barefoot Doctor Program. This began around 1930 and is foundational to the idea of community members successfully working within their communities as lay health leaders.

In the 1980s, as health programs around the world faced budget problems, this workforce was unfortunately almost forgotten. We have only recently seen a resurgence and emphasis on community health worker and patient navigation programs.

A report published by the World Health Organization in 2007 highlights the work of these lay health leaders, not just as health care providers, but more importantly as advocates for their communities and agents of social change to “fight against inequities and advocate community rights and needs to government structures.”

This year our conference theme was “Telling Our Stories.” Anyone who has read this blog knows my love of stories. I wanted the theme to highlight the stories of these community health workers and patient navigators and how those stories intersect with the work they do. We had participants from across the country as well as Puerto Rico and Turkey. We had presentations from people on care of immigrants, maternal child health, caring for young adults who have cancer and more. It was a beautiful picture of the work that is done every single day with little recognition by a system focused on more and more education and less and less true patient care.

Each year we try to highlight the work that patient navigators and community health workers do through film. Film allows us to showcase their work in ways that others can better understand, without acronyms and medical speak, but with passion and heart. This year we focused on three navigators – Maria, Sabrina, and Mariuca. Not only are they navigators who do amazing work, I am also proud to call them my friends.

I have included the film so you can hear some of their stories and be inspired by the work that they do. Thanks for letting me brag on this group of people today. It is my privilege to work side by side with them.

Patient Navigators: Our Stories from Sean Clark on Vimeo.