Tag Archives: moments

What?

During the last years of my dad’s life, we all knew his hearing was not great.  I’m not sure why he did not get hearing aids.  We knew that large noisy groups made it hard for him to socialize and that he shied away from those.  He could hear us in small groups or one on one conversation, mostly.  I don’t remember feeling annoyed with him or him getting short with us when he could not hear. He was career navy and served in WWII, Korea, and Viet Nam so I know he had noise exposure as one culprit in his hearing loss.  And there was age.

I do remember feeling I wish we did not have to plan events so that he could be comfortable.

This brings up the question of who is responsible for what when there is a change in physical ability?  How much of the burden is on the person whose health and ability status changes? What about those in that person’s life?

Next week I will have molds made for hearing aids.  Some of my hearing loss is just family and age, I am sure.  I also sing in a group and in a concert two years ago, the tenors to my left were magnificently loud in several pieces and I heard immediately the tell tale ringing that did not stop when I left the concert and for days later.  Actually I still have the tinnitus, more in my left than right ear.  Luckily for me it does not drive me batty, either because I am already batty or because I just have enough going on that it is not on the radar of my life.  But I knew after that event my left ear in particular was in deep trouble for hearing.

I say “what?” a lot.  I struggle in my groups with students if the quiet students do not speak up.  My kids are frustrated at having to repeat themselves.  Maybe my students are too.  My friends tease me.  I say “wait til you have these shoes on…see how it is.” I laugh with them because I am good at laughing at myself.  Some people seem irritated when I ask for them to repeat themselves.  I feel “less than” even though I did not make this happen other than to sing next to loud people.

Soon after that concert a very close friend and I were at her family’s cabin.  I was saying “what?” a lot.  And she would then yell her next response, well not yell loudly, but much louder than it needed to be.  I got irritated and suggested that if she did not mumble I could hear her, that it was articulation not loudness that was the issue.  She retorted that I was going deaf and she did not mumble.  I told her I had an audiology appointment already made and that I still believed she mumbled.  Within the week I found out the degree of my hearing loss and mutual friends acknowledged that she does “mumble” a bit.

Loud places are hard.  It turns out that with sensorineural hearing loss, part of what happens is not only can a person hear less well, they also have a shift in the noise comfort level.  A normal hearing person will say “it is bothering me” when the noise level is at a certain decibel level.  A sensorineural hearing loss person will say it is bothering them at a much lower decibel level.  And that is independent of what they can hear in language at a given level.  I have had three hearing tests.  The first two my results demonstrated this.  In the third I “cheated,” because I knew of this concept.  I weathered the noise far beyond what was really tolerable…and I passed.  Yay me!  Not.

It turns out that a lot of our communication is not from hearing.  It can be body language, lip reading that we don’t know we are doing, etc.  The context helps.  Some people are better at accommodating, figuring out context and filling in the blanks.

And in some settings it is hard to ask people to speak up, or say it again.  I can understand why my dad and others with hearing loss tend to withdraw.  I have wondered if I should stop my working in the work I do.  Is that wondering because I question my skill or because I am embarrassed or because I am just tired advocating for myself?  I honestly don’t know. I just feel like it is hard, my problem, and well…I guess I just don’t know what should/could be a reasonable expectation in differnt relationships.  Many have trouble hearing our department chairman.  Is that my problem and should I just pretend I hear and be quiet?

Last week I felt like a sitcom.  My younger son yelled down to me from upstairs. “Mom, can you get me some paper?”  I yelled back, “what do you need paper for?”
“Mom can you just get me some paper, now?” I answered, “Nick, just get it from the printer, which is right up there with you. Won’t that work?”  He then came down stairs looking crosseyed.  “What is wrong with you?”  “What do you mean,” I retorted.  “You want paper. There is tons upstairs.” “Mom, I said, will you do me a favor!?” We both collapsed in laughter to his words, “get that hearing aid.”

I found a website that talks honestly about what others can do.  I know what I need to do.  Of course I hope the aids help.  The ones I tried before did nothing.

Here are tips if you are a normally hearing person with someone in your life who is hearing impaired from the Hearing Loss Association of America:

Tips for Hearing Person to Communicate with Person who has a Hearing Loss

Set Your Stage

  • Face person directly.
  • Spotlight your face (no backlighting).
  • Avoid noisy backgrounds.
  • Get attention first.
  • Ask how you can facilitate communication.
  • When audio and acoustics are poor, emphasize the visual.

Get the Point Across

  • Don’t shout.
  • Speak clearly, at moderate pace, not over-emphasizing words.
  • Don’t hide your mouth, chew food, gum, or smoke while talking.
  • Re-phrase if you are not understood.
  • Use facial expressions, gestures.
  • Give clues when changing subjects or say “new subject.”

Establish Empathy with Your Audience

  • Be patient if response seems slow.
  • Talk to a hard of hearing person, not about him or her to another person.
  • Show respect to help build confidence and have a constructive conversation.
  • Maintain a sense of humor, stay positive and relax
Tips for the Person with Hearing Loss to Communicate with Hearing People

Set Your Stage

  • Tell others how best to talk to you.
  • Pick your best spot (light, quiet area, close to speaker).
  • Anticipate difficult situations, plan how to minimize them.Do Your Part
  • Pay attention.
  • Concentrate on speaker.
  • Look for visual clues.
  • Ask for written cues if needed.
  • Don’t interrupt. Let conversation flow to fill in the blanks and gain more meaning.
  • Maintain a sense of humor, stay positive and relaxed.

Establish Empathy with Audience

  • React. Let the speaker know how well he or she is conveying the information.
  • Don’t bluff. Admit it when you don’t understand.
  • If too tired to concentrate, ask for discussion later.
  • Thank the speaker for trying

I return to the question.  Who has responsibility for what? What is your role?

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Loose (but not) ends

This is the end of November’s NaBloPoMo. First I want to thank Seiji Pulmano, a graphic and web designer, son of a good friend, and my son’s high school classmate (go Garfield). Seiji held my hand and helped me set up this site and learn the rudimentary parts of navigating it and then was available for questions along the way. Thank you Seiji!

I say if you are looking for a web or design consultant, Seiji is your man.  He can be reached at hello@spulmano.com. Thanks too, Rae and Bruce, Seiji’s  parents, who gave me the gift of his support.

Thank you all who have come and read these pages, for sticking with me as I muse about things that are important to me.  The blog will continue but not like November’s daily post. As I said when I opened the doors here, I welcome questions and topics you would like to discuss.

We talk about the moments in our lives throughout our days— in stories that are written, spoken, and sung in prose, poetry and song.  There are several wonderful events in December worth publicizing for those in the area or wanting a trip to the area.

The Moth (Moth Radio Hour, True Stories Told LIve) is coming to Seattle in just a few days, Tuesday, December 3, 2013, at the Neptune Theater, 1303 NE 45th, Seattle, Wa.  You can buy tickets here.

On December 15, Sunday, come hear some great jazz/gospel Christmas music by one of Seattle’s best gospel groups, Shades of Praise and Jubilation Choirs.  The Map of St. Therese (3416 E Marion, Seattle, Washington) shows it really is on 34th Avenue. (They let me sing with them.)image002

Then two nights later, on December 17th, The Blind Boys of Alabama are performing at Benaroya Symphony Hall. Tickets are still available. See them here too.

http://ronepraiseindy.files.wordpress.com/2012/02/blindboys071.jpg

from http://ronepraiseindy.files.wordpress.com/2012/02/blindboys071.jpg

Remember to send those letters to the senators and representatives conferencing regarding the farm bill, live on a food stamp budget, and buy the Hedgebrook cookbook and you will have a great gift that supports women’s voices “authoring change.”

Image from: www.whidbeylifemagazine.org

Tribute to Stan

Stan is the person in the piece below.  His impact on my life opens and closes a chapter on those who bring joy to our lives in the yet to be published work, Life Lessons, What Our Patients Teach Us.  I edited those two pieces to be one narrative, the one I submitted to the PNWA literary contest.  On this day after Thanksgiving, I remain happy for our friendship.

 The Caregiver

      “There is a Mr. Dorfel to see you in waiting room,” was the overhead page.  I was finishing notes from my morning clinic, but went out to greet him in our empty waiting room.  As soon as he saw me, he jumped up, same plaid flannel shirt, dentures clacking, toupee askew, and wrapped me in a big hug almost dropping the several rubber-banded bundles of papers he clutched in his hand.  “Dr. D, we need to talk.”

            Hugh and I went way back.  He had been my patient at the community health center, and he briefly followed me to the university medical center when I left the clinic and changed jobs. When the university billing style and increased cost became more than he cared to manage, he had returned to the health center for his medical care.

            As his doctor at the health center, our relationship had a rhythm: six months (summer and fall) of fairly frequent visits for his high blood pressure and preventive care and six months (winter and spring) of physical absence when he would escape to Mexico with its lower cost of living and warm winters.  When he would return, his line was the same.  “You know Dr. D, I would stay there all the year, but as you know, yours truly does not take that heat.  And Seattle is dandy, but on that medicine you give me, my hands are just too cold for the winters.  And Mexico is just marvelously wonderfully inexpensive,” he said, drawing out the marvelously like someone from the upper west side talking about last night’s gala.

            His Mexico months were punctuated by long, rambling, and usually tangential letters, handwritten or typed on the old Royal typewriter that he hauled back and forth between Mexico and Seattle.   He wrote on the politics of the day, his days in Mexico, my doctoring, stories he read in the New York Times, and other topics on his mind. A diehard liberal and pacifist, the envelopes carrying his letters always had several New Yorker cartoons folded inside.  Regardless of who was in office and how critical he was of the moneyed interests, he would pepper his long monologues about the state of the world with his belief in the goodness of some, also always asking after each staff member’s and my children’s health followed by many repetitions of “and give my hearty best to them.”  Hard to read in his scrawling hand and sprawling grammar, we would pass the letters around, and amid laughter and delight, we would each take a turn at trying to decipher the hand writing and to translate the run-on sentences into some sort of comprehensible message.  We all knew another autumn would come and Hugh would be back visiting the clinic and stopping at each person’s desk to compliment everyone he encountered.

            When he was in Seattle and still had his apartment, he would take the bus daily to a post office all the way across town where he kept his post office box. 

            “This way,” he said, “I can see all my old friends all over town.” 

            These old friends included the bus driver, the regulars on the city bus, and his favorite grocer where he bought bags of fresh vegetables and grains every day for cooking in his main utensil:  his pressure cooker.  He befriended everyone.  Hugh stated several times, “If I can make someone’s day brighter, why not?”  He often told me what a good person I was, whether he was referring to my doctoring, my mothering, or my personhood, and he was generous with these acknowledgements for pretty much everyone he met along the way. 

            One of his favorite refrains about his health went something like this: “You know I should be dead.  When I was thirty-five, that one doctor told me that I would be dead by the time I was forty.  You know it was (and, by the way it still is) that high blood pressure of mine, through the roof, but I told him it’d always been that way and you know it’s still that way.  It’s just me, blood pressure always bouncing all over the place. And here I am, still kicking.  Who would’ve imagined?”

            Yes, there he was in my office that day: close to 80, his toupee even more bedraggled than the last time I had seen him, with hardly any worldly goods and reasonably good health, other than his high blood pressure and formerly large prostate, which he loved to tell any listening audience was the largest his surgeon had ever removed.

            Most of us have some optimists in our midst. How many of these patients know their effect on us?  My clinic day is scheduled with appointments every few minutes.  In some specialties, an initial consultation might be allotted more time, but for most of us, wherever we are caring for patients, the pace is quick.  A first look at the schedule before starting a clinic gives me a sense of whom I will be seeing.  Sometimes that glance can open a floodgate of feelings ranging from anxiety about not knowing enough, to distress when seeing a challenging patient on the schedule, to delight when certain other patients are scheduled.  There really are those patients, like Hugh, who quite simply brighten my day.  These patients are just as likely to have major illnesses and some of them are dying when we work with them.  Even then, some people experience life in ways that transcend what is difficult —and it is contagious. 

            I was delighted to see Hugh that day when he appeared, unannounced, in my clinic. I had not seen him for over two years and suggested we get lunch. 

            “Doctor D, I need you to be the executer of my will,” he said, producing a card from that rubber-banded bunch of papers and handing it to me.  “I have this attorney, see it’s right here on her business card, and she says I need to name someone.  I won’t ask my kids.  I don’t have anything to do with them.  And I can’t ask my apartment manager as much as I know she is a great gal. You are the only one who can do this.  It should not be any work.  Really.”  

            From there he rambled on about his latest six months in Mexico, how his blood pressure was doing, and he reported on the health and welfare of the my former co-workers at the community health center. 

            “And how are the boys, Mr. Matthew and Mr. Nicholas?” he asked, always attentive to hearing how our family was faring.  During occasional pauses in his monologue, he polished off his bowl of hot and sour soup without ever getting a direct answer from me about his request. Instead, I asked him to come meet me again in a week.

            It had been years since I had been Hugh’s doctor, and I knew his social situation.  As his doctor I had never succeeded in getting him to tell me about or deal with his estrangement from his son and daughter.  At our next lunch, I agreed, conditionally, telling him, “This can only work if you stay in touch. I can’t have you here or Mexico and have no idea where you are or how you are doing.  You have to become like part of our family.”  

            He dutifully stayed in touch with those long letters when he was in Mexico and soup dates when he was in town. After several years, Hugh’s health declined. I helped him find assisted living and we packed up his apartment, all of two suitcases of clothes and personal items, a small table and chair, two boxes of books and his papers, his Royal typewriter, and a few kitchen items.  We recycled 16 brown grocery bags stuffed with the plastic bags that had held his vegetables and grain, and he relinquished his pressure cooker. 

            “Don’t expect me to learn how to use that microwave thing I now have instead of a stove, Dr. D.  I had one of the first automatic cars in the country because yours truly could not learn to shift with a clutch. See this?”   he said, swinging his can opener around his head.  “This is my third like this.  You can’t even find this kind any more, except at Goodwill, and I can’t use the new kind, and I am not talking about the electric new kind.”  

            His Mexico jaunts ended; my sons got to know him better and he became a more like a member of our family.  We would visit him, shoot pool in their recreation room, and carry on about the state of the world, and he would come to our house for special occasions.  Several hospitalizations and a number of years later, he moved to a skilled nursing facility where he lived until he died.  

            In those last and nursing home years, Hugh became the hat man.  In his sixties and seventies, he had worn that toupee which aged into his 80s, becoming increasingly worn, dirty, matted and infrequently shampooed.  During one hospitalization, his nurse supported my ultimatum, “lose the wig and be happily bald, or buy a new wig.  This one is a rat’s nest and is going in the garbage.”  With flourish, I threw it in the trash and he acquiesced.  He gave up the toupee and never replaced it.  Instead he donned hats.  Always a bit unusual in his dress, and willing to be flamboyant, he started accumulating baseball caps, beanies, and hats for each occasion.  He had a witch’s hat, a leprechaun’s hat, a Santa hat, and a pinwheel hat.   On my visits, I would catch him, scooting up to the desk in his wheelchair, up to three hats on his head at one time, and smiling at the nurse, turning to me, and saying, “This is my friend, Martha, and she works so hard and is the best nurse here.”  Later he would tell me, “We need to show more appreciation for the staff here.  They work so hard and people are always complaining.  I don’t know why they have to complain.”

            This man brought a smile to my face, whether I was seeing him in clinic, reading one of those quirky barely understandable letters, picturing him heading across town to get his mail or across continents to Mexico, watching him interact with nursing home residents and staff, or sitting at our dining room table. 

            He took me aside on one visit to discuss another idea of his.  Though he would have virtually no money left when he died, his wish was to give his little reserve fund to the health center where he received care for over 20 years.

            “I want you to give what’s left to the clinic staff so they can have some relaxing times,” he instructed me.  “They do so much.  Do they ever have time or money for a party? You give it to them when I’m gone.  Tell em how much they mean to me.”

            “Hugh, why wait until you’re dead!” was my immediate reply.  “I think you should give it to them!”

            “Doc, I’m not much for speaking in public; I don’t think I could do that.  You just handle it ok?”

            “Look,” I rolled my eyes.  “Your speaking ability is not the point.  I would like you to see how much you touch them and it will mean a lot to them to have you give it to them.  I’ll take you.  This is not like learning a new can opener.  If you can’t talk, I will help, but this is your gift, not mine.”

            Finally I convinced him to give it to them while he was still alive.  He and I went to a clinic staff meeting for the presentation. 

            “You work so hard, too hard, and I want you to have some time to take it easy, relax, just have some fun,” he told the staff, his voice cracking and tears streaming down his and many others’ faces.  The standing ovation honored the caregiver in the room.small Stan and Allie

 

 

Carrying stories

A few years ago I was given a mini sabbatical. I applied for it because I had collected about 30 stories written by other physicians in workshops a colleague and I offer. At the end of each session, I invited participants to give me what they had written with the expectation that maybe I would put them together with my stories into a manuscript for publication.  Fewer than a third gave me their stories and I had them transcribed and then started to work with the authors to edit and expand them. By the time I was granted the sabbatical, I was ready to explore the meaning within all of the writing, mine and that of the contributors.  I wanted to organize a coherent work. In my view, sabbaticals should also provide breathing room for rest  and for space where new creativity can surface.

The workshop we offer opens with a discussion of relationship centered care and some tools (mindfulness, narrative, self-awareness) and has a writing reflection where participants write about how they have been affected and changed as people (in their personal lives, not their doctor lives) within a relationship with a patient.  The sessions then have sharing of the writings with a focus on reflective listening. We offer these to resident physicians, medical students, and seasoned clinicians locally and nationally.

I knew the project had worth.  Physicians who have taken the workshop tell me their lives are fuller after going home and finding opportunities to spend some time sharing what they have learned from patients with those same individuals.  My patients have always been excited about the project and ask me weekly where they can buy the book. I shared the concept and writings with many people, most of whom were not physicians, in two writing workshops, Write on the Sound two years before my sabbatical and the Healing Art of Writing as the kickoff to it. That was 2010.

The summer of 2010 freedom was cut short by some family needs, but I was able to identify the main themes and see a form to the work. During the next year and a half I continued to pull it together, writing new material, editing, working with contributors, and putting out feelers for an agent, all of this in those little cracks in the weeks and months that were already overloaded with family and work.  A few vacation weeks found me with my laptop in a local coffee shop writing and editing.

By the winter of 2012 I had a rough draft of the entire manuscript and knowing I would be heading to Hedgebrook that fall, I was able to take a deep breath.  Three weeks would be mine to bring this project closer to completion.  I wrote about Hedgebrook in an earlier post; what it added to the quality of the work is immeasurable. I finished editing over the next months with a goal to find a home for it through the Pacific Northwest Writers Association and their annual conference.  My hopes grew when a story from the manuscript, “The Caregiver,” was a finalist in the short non-fiction category.  The conference has Pitch Sessions, where writers get 4 minutes per pitch with up to 6-9 agents and editors (from publishing houses). I was excited to share this work with as many as I could.

Picture the scene:  a big ballroom type space in the hotel.  Along the back wall there are between 25 and 30 agents and editors sitting in one row facing the doors, one long table in front of them.  Each has a chair across the table, facing the editor or agent.  At the gong, about 150 people enter the room and form lines in front of the person they desire to pitch.  A bell rings.  All of the firsts in line go and sit in a chair and pitch their work.  At four minutes, the bell rings and the next person in each line goes to the chair.  If you just pitched someone, you can go to the end of a different line.  At the ninety minute mark, the session is over.

At the end, I had seven people asking for the manuscript and the book proposal, a many paged document that speaks to the work, its audience, its competing works, the publicity and marketing plans and more. Hopeful for a home, I got those materials to them within a few weeks of the end of the conference. I am still waiting to hear from all but one.

Everyone has told me how much harder it is to find a home for a book in this market than for a paper.  They are right.  I have many publications in journals that are research and narrative.  This has been a trial in patience.  Finding time to move this project along is challenging. Keeping in touch with the contributors and hoping they do not lose hope adds another layer. When does patience become inertia?

What surprises me the most is the sense of responsibility I feel.  I am a person entrusted with a very large parcel of human truth that should be shared. Is that a ridiculous and hubris filled notion? I opened each pitch with, “When was the last time your physician shared with you what you mean to him or her?”  The universal answer was “Never.”  Knowing we matter in any relationship, that there is always reciprocity, is important for all to hear.  We recalibrate healing relationships when we teach patients that they are giving and not just receiving and when we teach those who care for patients to remember that they are also beneficiaries.

This is what I carry with this manuscript.

Feeling like a peddler of some elixir, I need engagement by someone  with the capacity to distribute it. I worry that I am somehow not selling it well enough and I fear that no one with that capacity will really understand.  It is hard for me to hold.  Lately, I have a lot of shoulder pain.  I believe it is where the weight sits squarely, the dynamic tension between the need to be patient and defining the alternatives.

Single Story continued

It is the night before Thanksgiving, and here I sit eating potato chips and promising myself a glass of wine when I finish this post (neither of which is good for my blood pressure or my cholesterol, speaking of the choices theme), needing to make stuffing and cranberry sauce tonight, shallots and brussel sprouts tomorrow,  one son downstairs viremic, the other just here from SoCal out on the town, and me, trying to sort out what has been swirling in my mind.

What to post?  Oh yes, and Allie the aged dog is scratching at my study door.  If I let her in, she will whine for attention.  If I don’t she will not go downstairs and bug the 25 year old. I could post about how my sons already see me as a daft old woman.  NO that is for another day.

Keeping it simple, I’ll stay with the theme of the single story.

I have a lot of friends who are anti military. I don’t agree with many of the actions we have taken in the world either.  And I want there to be more than the military as paths towards maturity and upward mobility available to poor, struggling in school, and minority youth. If it were on an equal footing with college, vocational training, being an entrepreneur, and if it did not involve a higher risk of dying, well, I might feel differently.  Point is, as I see it, though  no country is without a military.  So I’m not going to dis its existence; it seems to me it has to be.  I have many thoughts about war and its consequences and about our politics that have led us into war, but that too might be for another day.  I do accept that we will have a military. Do I want my kids choosing it given the recent decades of engagements?  no. Would they have my support if that were their choice?  A reluctant yes, because I do not live their lives.

Second point is:  how do you see people in the military?  Regardless of your political positions, how do you see them?  Do you have a story for the soldiers? the marines? the navy? the enlisted vs the officers?  the policy makers vs those who follow the orders? How does it break down for you?

I suspect many of us have a single story, whether it is pro or con.

Try to put yourself back to the early 1950s.  Picture a navy ship, a destroyer.  Ship and MascotIt’s during the Korean conflict.  Many if not most of the sailors on this destroyer are 18-20 years old, their first time away from home.  Sure, they had their basic training, but this is really away, three months “at sea.”  There is a captain of this ship.  His job is to get them to the part of the Pacific where they can do what the Department of Defense tells them to do.  It is a war in the eyes of the US Government and the military.

Draw a picture in your mind and start with the story of these young sailors and life on the ship in the middle of battle.  Do the same for the guy at the top, the captain.  His job is order, following orders, keeping everyone on task and the ship afloat. Maybe jot down your thoughts.

My father was the captain, in his thirties. dad3 Fast forward to 1969, and he was in some major position and stationed in Newport RI.  I could not drive my car on base (where my parents lived) with my anti-Viet Nam war stickers on my car. People hearing I was raised in the navy often gave me a single story: how I could come from that family?  They gave my dad a single story:  military brass are authoritarian and militaristic. On the other side, some could not understand the complexity of my beliefs. I was not anti-American  The contradictions and the huge space between two absolutes are sometimes so hard for people to handle, when in reality they are what define and embrace us all.

How could my father, this person who was in Pearl Harbor when it was bombed, on the USS Minneapolis when it was torpedoed, losing many men (and limping into a harbor to rebuild the hull out of bamboo and sailing back to mainland) be anything more than a true military man? How could he then go on to serve in both Korea and Viet Nam and not be locked into one view? Both ends of the spectrum would see it that way.  Do you inhabit the ends of the spectrum? And how many actually do?

I have many stories that round him out to the complex person he was. He was a true military man who loved his profession, not war, his profession—and he was more.  A few years ago, some of those 18 year old sailors, now in their 80s found my sibs and me.  One shared a letter that his parents had saved, sent to them back in those Korean War days.  It is below and I hope it shifts your lens from the picture you had. If you click on the image, it should enlarge so you can read it. As we approach Thanksgiving, my hope is that we all will be thankful we have the capacity to use our lenses to be wide angled.

Untitled 2If you missed it yesterday, I still recommend the talk by Chimamanda Adichie.

Assumptions and single stories

It was about 1030 in the evening and I was at home, settling in and at the same time wondering if I would get through the night without hearing from our resident on call. Well, we were both on call, but he would get the first call and then get in touch with me.  I was hoping for sleep and not excitement. On our in-patient service we care for women in labor and manage their deliveries, and then care for them and their newborns after birth. We also care for adults admitted with adult medical (and sometimes surgical) problems necessitating a stay in the hospital. It was calm at that moment and there are no guarantees in this job.

When the call came, I took a deep breath and listened to my resident’s report.  This patient was in the ER and needed admission. He told me she was pretty sick, probably a pneumonia but maybe a pulmonary embolism, and  she was in a lot of pain. On top of her acute problem, she had major chronic health challenges.  She was only 31, but she had a form of muscular dystrophy that was diagnosed during her teens, leaving her with  spasms of some muscle groups and weakness of others. Recently she had gotten her first electric wheel chair. She could transfer from it to a couch or bed, but not walk much more.  What we both knew was that pneumonia, because of her weakened chest wall muscles, could become a recurring event.  What we did not know was what she knew about her life expectancy.

He had appropriately started her on antibiotics and some breathing treatments, and he reviewed the scan that showed it was not a pulmonary embolism. I picked up my things and headed in to see her.

It’s a short drive from my house to the hospital and the drive is through a beautiful wooded arboretumArboretum that always calms me as I race to a delivery or whatever pulls me in during the late hours.  On the drive that night I wondered, what is her life like?  What does she do with her time?  She was wheelchair bound, too weak to walk now.  She had to know her life expectancy was limited.  Our resident has told me she lived at home with her parents and that her mom was in the ER with her.

Another thing was the pain.  She was in pain and asking for increasing narcotics.  I wondered, hmmmm, how much is the sack around the lungs, the pleura, that can really hurt when inflamed and how much was psychic pain?  What was she doing to manage that?  She must have some, right?

Before I was even aware, I had painted a picture of this young woman:  chronically ill, disabled, little life quality, now sick and needing antibiotics and wanting pain medications.

During that week we had cared for another young woman, a lung transplant recipient, who at 21 spent her days at home doing nothing but playing computer games.  I was never able to figure out whether she was depressed, insecure in a world she could now enter with more health than she had as a child, or what held her back.  But knowing she was healthy enough to be in school or working, I had to work to not judge her choices. I clearly was projecting her story onto a reality I was creating in my mind for this woman I had not yet met.

Entering the exam room in the ER, this is what I saw:  a young woman curled into a ball. With every breath she moaned.  She wasn’t breathing fast and because she was not using a lot of extra muscles to breathe, I could tell she was not in respiratory distress (that’s our medicalese for an outsider being able to tell you are having trouble breathing). OK, true, she had oxygen on through those prongs in her nose, but it was not turned up very high, so it clearly was working.

Her mom was sitting at the bedside reading.  60ish, eyes drooping, almost asleep over the book.

I opened with an introduction of me to them and then asked why they were there, apologizing for the fact that they had answered this question already, several times.

“Mom, you tell her.  I’m hurting to much to talk. And I’ll start coughing,” she said.

Her mom told the story of fever, cough, trying the inhalers and chest thumping they had been taught.  None of it worked.  I knew this from the history the resident had obtained, his exam, her labs and imaging studies.  And I wanted to hear it fresh to confirm it.

As we moved along, I was needing to answer that question that nagged me during the drive in to the ER.  What was her life?  As in living her life?  Maybe it was my innate curiosity.  Maybe it was I really didn’t want her to be like the other woman who seemed to have abandoned life.  (Oh, right, those are my standards…and who am I to dictate what is a valuable life?  Have you ever caught yourself in that bind?).  Maybe I really wanted to connect with her.  Maybe all of the above?  (I hate those questions on tests that have is it 1,2,3? or 2, 4? or 1,3? or none of the above. Just sayin’)

Getting to the social history part of our script includes things like where were you born?  With whom do you live? What is your school history?  Do you work? Where? How do you spend your days?  Who supports you? What are your stresses?  (and more, depending on the person and their story).

I opened up:  “I know you are in a lot of pain.  Is this typical?”

She answered, “No absolutely not!”

I countered, “OK, we will help with that. Can I ask you about you and your life?  I am really interested in what school was like, what you are doing now, how you spend your days when you are not in the ER with a pneumonia.”

“Well,” she said, “I am pretty busy.  I work in a book store part time.  I’m a writer so I also tutor kids in their language arts course.  And then there is this start up that is trying to make documentaries about how people with chronic illness have a hard time getting ahead in their jobs. I am a volunteer with that.”

Boom.  Assumptions shattered. I had both made assumptions and given her a “single story.” What the resident told me, colored by the experience with a different patient, shaded by my own biases, and outlined in the drive in had given her a story in my mind that was completely inaccurate.

Yesterday’s post, Tina Shang’s  comments, and a wonderful poem by Nancy Woo all speak to how we make assumptions prematurely and as humans have a tendency to relegate each person to a SINGLE story that does not give the respect that is due to the complexity of the human spirit.

Take a look at this TED talk by Chimananda Adichie. If you have not already seen it, it is more eloquent than I can be.

Living and Limits

I am posting a woman’s entire post below because I found it helpful and provocative.  If you want some other sources that suggest we should really hear this story, look at Josh Freeman’s blog today.  He is talking about what it will take to improve health (and that will also lower health care spending) in our country. He links his thoughts to an earlier post of his, Capability; Why people may not adopt healthy behaviors. That earlier article contains some useful references to rattle your brain.  On a personal level, what really drives each of us in the choices we make?  Some of his references take a scholarly look at that question. None are quite as honestly blunt as the post I quote below.  While I might see the choices available to the writer as more numerous than the writer sees, that is not the point.  And of course my job is to offer what I see and seek ways to steer someone to more healthy choices that might improve their health status, regardless of the givens of their daily life, burdens, and realities. The point is that if we want to improve health, we sure cannot do it from a perch of I never really sat on your perch.  I hope you will read Josh’s post today and his 2010 one along with the one below and savor the richness of who we are as people/individuals.  We each are trying to get through a day, live a life, always in the midst of the expectation that we also make healthy choices.

From killermartinis.kinja.com

“There’s no way to structure this coherently. They are random observations that might help explain the mental processes. But often, I think that we look at the academic problems of poverty and have no idea of the why. We know the what and the how, and we can see systemic problems, but it’s rare to have a poor person actually explain it on their own behalf. So this is me doing that, sort of.

Rest is a luxury for the rich. I get up at 6AM, go to school (I have a full course load, but I only have to go to two in-person classes) then work, then I get the kids, then I pick up my husband, then I have half an hour to change and go to Job 2. I get home from that at around 12:30AM, then I have the rest of my classes and work to tend to. I’m in bed by 3. This isn’t every day, I have two days off a week from each of my obligations. I use that time to clean the house and soothe Mr. Martini and see the kids for longer than an hour and catch up on schoolwork. Those nights I’m in bed by midnight, but if I go to bed too early I won’t be able to stay up the other nights because I’ll fuck my pattern up, and I drive an hour home from Job 2 so I can’t afford to be sleepy. I never get a day off from work unless I am fairly sick. It doesn’t leave you much room to think about what you are doing, only to attend to the next thing and the next. Planning isn’t in the mix.

When I got pregnant the first time, I was living in a weekly motel. I had a minifridge with no freezer and a microwave. I was on WIC. I ate peanut butter from the jar and frozen burritos because they were 12/$2. Had I had a stove, I couldn’t have made beef burritos that cheaply. And I needed the meat, I was pregnant. I might not have had any prenatal care, but I am intelligent enough to eat protein and iron whilst knocked up.

I know how to cook. I had to take Home Ec to graduate high school. Most people on my level didn’t. Broccoli is intimidating. You have to have a working stove, and pots, and spices, and you’ll have to do the dishes no matter how tired you are or they’ll attract bugs. It is a huge new skill for a lot of people. That’s not great, but it’s true. And if you fuck it up, you could make your family sick. We have learned not to try too hard to be middle-class. It never works out well and always makes you feel worse for having tried and failed yet again. Better not to try. It makes more sense to get food that you know will be palatable and cheap and that keeps well. Junk food is a pleasure that we are allowed to have; why would we give that up? We have very few of them.

The closest Planned Parenthood to me is three hours. That’s a lot of money in gas. Lots of women can’t afford that, and even if you live near one you probably don’t want to be seen coming in and out in a lot of areas. We’re aware that we are not “having kids,” we’re “breeding.” We have kids for much the same reasons that I imagine rich people do. Urge to propagate and all. Nobody likes poor people procreating, but they judge abortion even harder.

Convenience food is just that. And we are not allowed many conveniences. Especially since the Patriot Act passed, it’s hard to get a bank account. But without one, you spend a lot of time figuring out where to cash a check and get money orders to pay bills. Most motels now have a no-credit-card-no-room policy. I wandered around SF for five hours in the rain once with nearly a thousand dollars on me and could not rent a room even if I gave them a $500 cash deposit and surrendered my cell phone to the desk to hold as surety.

Nobody gives enough thought to depression. You have to understand that we know that we will never not feel tired. We will never feel hopeful. We will never get a vacation. Ever. We know that the very act of being poor guarantees that we will never not be poor. It doesn’t give us much reason to improve ourselves. We don’t apply for jobs because we know we can’t afford to look nice enough to hold them. I would make a super legal secretary, but I’ve been turned down more than once because I “don’t fit the image of the firm,” which is a nice way of saying “gtfo, pov.” I am good enough to cook the food, hidden away in the kitchen, but my boss won’t make me a server because I don’t “fit the corporate image.” I am not beautiful. I have missing teeth and skin that looks like it will when you live on B12 and coffee and nicotine and no sleep. Beauty is a thing you get when you can afford it, and that’s how you get the job that you need in order to be beautiful. There isn’t much point trying.

Cooking attracts roaches. Nobody realizes that. I’ve spent a lot of hours impaling roach bodies and leaving them out on toothpick pikes to discourage others from entering. It doesn’t work, but is amusing.

“Free” only exists for rich people. It’s great that there’s a bowl of condoms at my school, but most poor people will never set foot on a college campus. We don’t belong there. There’s a clinic? Great! There’s still a copay. We’re not going. Besides, all they’ll tell you at the clinic is that you need to see a specialist, which seriously? Might as well be located on Mars for how accessible it is. “Low-cost” and “sliding scale” sounds like “money you have to spend” to me, and they can’t actually help you anyway.

I smoke. It’s expensive. It’s also the best option. You see, I am always, always exhausted. It’s a stimulant. When I am too tired to walk one more step, I can smoke and go for another hour. When I am enraged and beaten down and incapable of accomplishing one more thing, I can smoke and I feel a little better, just for a minute. It is the only relaxation I am allowed. It is not a good decision, but it is the only one that I have access to. It is the only thing I have found that keeps me from collapsing or exploding.

I make a lot of poor financial decisions. None of them matter, in the long term. I will never not be poor, so what does it matter if I don’t pay a thing and a half this week instead of just one thing? It’s not like the sacrifice will result in improved circumstances; the thing holding me back isn’t that I blow five bucks at Wendy’s. It’s that now that I have proven that I am a Poor Person that is all that I am or ever will be. It is not worth it to me to live a bleak life devoid of small pleasures so that one day I can make a single large purchase. I will never have large pleasures to hold on to. There’s a certain pull to live what bits of life you can while there’s money in your pocket, because no matter how responsible you are you will be broke in three days anyway. When you never have enough money it ceases to have meaning. I imagine having a lot of it is the same thing.

Poverty is bleak and cuts off your long-term brain. It’s why you see people with four different babydaddies instead of one. You grab a bit of connection wherever you can to survive. You have no idea how strong the pull to feel worthwhile is. It’s more basic than food. You go to these people who make you feel lovely for an hour that one time, and that’s all you get. You’re probably not compatible with them for anything long-term, but right this minute they can make you feel powerful and valuable. It does not matter what will happen in a month. Whatever happens in a month is probably going to be just about as indifferent as whatever happened today or last week. None of it matters. We don’t plan long-term because if we do we’ll just get our hearts broken. It’s best not to hope. You just take what you can get as you spot it.

I am not asking for sympathy. I am just trying to explain, on a human level, how it is that people make what look from the outside like awful decisions. This is what our lives are like, and here are our defense mechanisms, and here is why we think differently. It’s certainly self-defeating, but it’s safer. That’s all. I hope it helps make sense of it.

Additions have been made to the update below to reflect the responses received.

UPDATE: The response to this piece is overwhelming. I have had a lot of people ask to use my work. Please do. Share it with the world if you found value in it. Please link back if you can. If you are teaching, I am happy to discuss this with or clarify for you, and you can freely use this piece in your classes. Please do let me know where you teach. You can reach me on Twitter, @killermartinis. I set up an email at killermartinisbook@ gmail as well.

This piece has gone fully viral. People have been asking me to write, and how they can help. After enough people tried to send me paypal money, I set up a gofundme. Find it here. It promptly went insane. I have raised my typical yearly income as of this update. I have no idea what to say except thank you. I am going to speak with some money people who will make sure that I can’t fuck this up, and I will use it to do good things with.

I’ve also set up a blog, which I hope you will find here.

Understand that I wrote this as an example of the thought process that we struggle with. Most of us are clinically depressed, and we do not get therapy and medication and support. We get told to get over it. And we find ways to cope. I am not saying that people live without hope entirely; that is not human nature. But these are the thoughts that are never too far away, that creep up on us every chance they get, that prey on our better judgement when we are tired and stressed and weakened. We maintain a constant vigil against these thoughts, because we are afraid that if we speak them aloud or even articulate them in our heads they will become unmanageably real.

Thank you for reading. I am glad people find value in it. Because I am getting tired of people not reading this and then commenting anyway, I am making a few things clear: not all of this piece is about me. That is why I said that they were observations. And this piece is not all of me: that is why I said that they were random observations rather than complete ones. If you really have to urge me to abort or keep my knees closed or wonder whether I can fax you my citizenship documents or if I really in fact have been poor because I know multisyllabic words, I would like to ask that you read the comments and see whether anyone has made your point in the particular fashion you intend to. It is not that I mind trolls so much, it’s that they’re getting repetitive and if you have to say nothing I hope you can at least do it in an entertaining fashion.

If, however, you simply are curious about something and actually want to have a conversation, I do not mind repeating myself because those conversations are valuable and not actually repetitive. They tend to be very specific to the asker, and I am happy to shed any light I can. I do not mind honest questions. They are why I wrote this piece.

Thank you all, so much. I don’t know what life will look like next week, and for once that’s a good thing. And I have you to thank.”

This post first appeared on killermartinis.kinja.com