Category Archives: internal voice

two stem cell and bone marrow registration drive possibilities: please share

Please share these dates:  6/28 and 7/12 when folks 18-44 can register to register to be stem cell or bone marrow donors if a match is found.  The registry needs you!

Those 45-60 can register on line. Please check out information on bethematch.org regarding what this means!  The registry needs you. A cheek swab and a willingness…

Here is the thing: 97% of whites find a partial match.  65% of African Americans do. Other ethnic groups are lower than Whites and barely higher than those of African descent.  For a full match: 75% whites and only 25-35% of those of African descent.  Others are in between. Diversity in the registry is key. The sites for the drive are because they are diverse, inclusive, and social justice minded.  Please come by.

Feel free to share the fliers

Thanks! Sharon

Matt Dobie Immaculate

Matt Dobie St T

More about skinny crazy small

Only a couple more weeks to donate to Sylvie Mae Baldwin’s skinny crazy small. Go here !  And now more about the playwright and actress, in her words:

From my eleventh birthday until the year I turned nineteen, I woke up every morning terrified – terrified that I was going to die of anorexia nervosa. This wasn’t an entirely illogical fear. I had been diagnosed with the disease the summer before I entered seventh grade. However, thanks to the tireless efforts of my parents, I was quickly weight restored and deemed “healthy” once again.

So, why was I frightened? I’ll tell you why. Anorexia is deadly. Of all mental illnesses, it claims the most deaths each year – roughly half due to suicide and the other half due to heart failure. Anorexia is particularly vicious, because the disorder compels individuals to avoid the only effective treatment. Imagine if contracting cancer drove a person to avoid chemotherapy at all costs – that is how anorexia works, but with food.

As a young girl I feared that the illness would sneak up on me once again. I felt powerless over its sneaky and coercive tactics. And, despite many therapy sessions and doctor visits, my own unwillingness to talk about my problems allowed disordered thoughts to plague me even after I appeared “recovered” from anorexia.

When I entered college, my restrictive eating habits resurfaced and spiraled out of control. The loud, boisterous voice of anorexia pounded in my ears: “Keep cutting calories! Exercise! Stay healthy! You know what happens to people who eat fat – they become ugly, unhappy, and unloved.” I would lay awake on my hard dormitory bed, counting my faint, slow heartbeats. I was confused – entirely fixated on my health and happiness, yet the captive of an illness that made me take terrible care of myself and feel desperately despondent.

It was a Friday night in early October when the realization hit me. My whole body was tingling and shaky. “I am dying. Anorexia is killing me,” I told myself.  “My own worst nightmare has become my reality.” I placed one of my hands on the wall beside my bed, the cool surface steadying my uneven pulse. I resolved not to sleep. I couldn’t. I knew that if I closed my eyes, if I drifted off, I might never wake up again. Instead, I ate – one protein bar after another, from a small stash of emergency provisions I had stored underneath my bed. I consumed the bars tentatively, not voraciously, not with any sense of joy, pleasure, or ease, but because I knew I had to.

When I reflect back on that night in October, the night I became convinced that I must and could recover from my eating disorder once and for all, I am sometimes overwhelmed with a feeling of total idiocy. Why did I ever restrict my eating? Why did anorexia consume my life and my thoughts for so many years when all I had to do was make the decision that I would eat fully and live fully?

The reality is that on that fall night, I reached a critical moment in my young life. I had to choose between life and death, between eating or anorexia. For the first time, my choice seemed simple, concrete, and clear. My eating disorder had spent years convincing me it was helpful, fooling me into the belief that excessive calorie restriction was my key to happiness and success. But I finally saw anorexia for what it was, nothing more than death. Death repackaged to look like a shiny can of diet soda and a single cup of non-fat yogurt.

If we are lucky, life is long. Seconds become minutes, minutes become hours, hours become days, and days become years. However, it is the moments that count, the moments that shape our lives and decide our fate. All it took was a moment – a moment, perfectly situated between life and death – for me to decide that anorexia would no longer rule my life. That moment, when I decided to eat, lasted no more than a heartbeat. It was short, a flash, the blink of an eye. However, that moment gave me life – years of life, for which I am eternally grateful.

Today, I no longer fear that anorexia will kill me. I no longer feel powerless against its tactics or consumed by disordered thoughts. Those days are behind me, thanks to the power of a single moment. A moment of clarity in which I realized I had to eat or I would die, a moment in which I chose life.

skinny crazy small

I have a young friend who is using theater for raising public awareness.

SCSrevisionDecPost

Actress and playwright Sylvie Mae Baldwin announces the world premier of her original one-woman play skinny crazy small.  And I am delighted to promote it.

The play chronicles the 8 year battle of a young girl with anorexia, seeking to give new voice to the discussion of this illness and to advocate for breaking down stereotypes.

She has an Indiegogo campaign for skinny crazy small that is live for just a few more weeks. Funds will allow Baldwin to pay her director and technical director a fair wage, as well as to rent rehearsal and performance venues. The Indiegogo page has a full breakdown of how funds will be allotted. Please contribute to this project at:

https://www.indiegogo.com/projects/skinny-crazy-small
Your donation is tax deductible, thanks to Fractured Atlas, a non-profit arts organization in New York City. And if your employer matches donations, skinny crazy small can accept those as well!

Great resources to learn more about the show include their website and Facebook page: http://sylviemaebaldwin.wix.com/skinnycrazysmall

http://www.facebook.com/skinnycrazysmall

You can also purchase your skinny crazy small tickets today!: http://skinnycrazysmall.brownpapertickets.com

About Sylvie:

Sylvie Mae Baldwin is an actress, modern dancer, and musician. In May 2015 her original one-woman show, skinny crazy small, will premiere in Seattle, Washington. The play tells the story of a quirky and strong-willed girl’s struggle with anorexia and seeks to promote honest discussion about eating disorders (www.facebook.com/skinnycrazysmall). Regionally, Sylvie Mae has appeared on stage with Antaeus Company (CA), Book It Repertory Theatre (WA), Key City Public Theatre (WA), Lexington Children’s Theatre (KY), Seattle Public Theater (WA), Seattle Theatre Group (WA), and South Coast Repertory (CA). Sylvie Mae also was part of a group of young actors at the Northwest School who spent three years working in collaboration with UCSF Benioff Children’s Hospital tp craft short plays from the poems and journal entries of terminally ill children in the hospital’s ICU. These plays were performed at the UCSF medical facilities and the DeYoung Art Museum. Sylvie Mae trained with Anne Bogart and the SITI Company in New York. She is a proud member of the Actors’ Equity Association. http://www.sylviemaebaldwin.com

Available now! Click on the link below. (I cannot seem to import the image to show as an image). I hope you will get it, enjoy it, learn from it, celebrate with all of us authors whose stories are in this work, and share the information with your friends, family, and colleagues.  Order it from http://www.UCMedicalHumanitiesPress.com and get a 30% discount. All proceeds go to the University of California Medical Humanities Press, which allows them to publish more work in this genre.  It will be available at bn.com and amazon.com in about 6-8 weeks.

Heart Murmurs flyer

Teams, gratitude, and goodbyes

We had a lot of fun in our hours together in the Labor and Delivery Suite at Virginia Mason Hospital, Seattle, from 1983 until 1989, when I left to take my practice to the University. “We” would be the nurses, midwives, support staff, and doctors from the hospital and two community health center practice groups. There’s a lot of talk these days about teams, as if it is a new concept. It’s a great concept; it’s not new, and algorithms,mnemonics, and organizational protocols telling us to communicate or how to communicate do not make the concept come alive. Relationships are the bricks and the mortar comes from commitment to our patients and to the relationships within the team.

This spring a new patient appeared on my schedule. I recognized the name and I recognized her: big eyes, easy laugh, and organized notebook with items for us to discuss as catch up­—items she felt I would need to know if I was to become her primary care doc (PCP) and we were again to be a team. It had been 25 years since we had worked together as nurse and doctor in Labor and Delivery (L&D is what we call it), yet it could have been yesterday.

…Only this time we would not be working together with a laboring and birthing woman and her family. It was to hopefully keep her healthy, now in remission after chemotherapy for lymphoma. Her cancer care was in our institution and she and they felt a PCP in our system would add to her team that included her husband, daughter, oncologists and nurses; they hoped my joining the team might make her care coordination easier.

After she had completed chemotherapy, her first scan was negative and she and her husband and daughter were optimistic and ready to celebrate. I felt like an old friend had walked back into my life. I shared her optimism and thought, “how lucky am I? Piece of cake: reconnect with an old friend, work on her health goals now that chemo is over…”

That is what teams do if they work: they breed strong ties and create a choreography that could translate to different settings even though we don’t make those translations often. In this case, we settled in, started to work on some of her non-cancer concerns, caught up on her life and hoped for the best. I found out she had left L&D nursing and was a respected nursing educator in a local program. She and her husband had one daughter and she shared how proud they were of her. She told me how, as their daughter grew, they took frequent outings to various parts of the state and usually could be found in the summer crabbing in Puget Sound from their boat. I remember their wedding and could picture the next installments as she relayed the details. Did I go to the wedding? Or were her descriptions so vivid I feel in my memories like I was there? That is the thing about teams. We all own part of the other’s story with a connection that weaves in and out and in an out.

During these conversations I could easily transport myself back to L&D, day or night, someone in labor, sitting around with whoever was there– nurses, the midwives from the hospital midwifery group, maybe one of the family med docs from the other community health center group, maybe the obstetrician on call. If one of us needed help, there were always hands to help. If a woman came in and her on call person was not there, we would help. If my patient came in and I was not there yet, others would help.

What I remember about Linda, the name of my colleague now patient, is her voice. She could tell one of us exactly what she thought and what she thought we should do about it, always with this cadenced softness that did not hide the direct and clear opinion. She could (and would) manage a complex patient in the midst of chaos with the calm of a neurosurgeon and she could coach a reluctant woman when to breathe and how to push when I needed to take a take a deep breath break myself. And laugh…oh I can hear her laughter. She could laugh at herself and funny things she would share. Laugh a lot and laugh loudly, easily tickled by life and our work, easily finding what was important, never disrespectful, just keenly insightful to the meaning, the amusement and the delight—all of it.

Teams…they do create memories. I don’t remember a mnemonic. I do remember the people who touch me and allow me into their lives. Though I am not sure, as I remember the flurry of the nursery filled with the L&D and pediatric nurses and my absolute excitement and disbelief at the show of support, to say nothing of the import of the moment, I believe Linda was right there when my son was legally handed to me at our hospital and again at the shower the nurses had for my son and me a couple of weeks later. I know she celebrated my becoming a parent, and we all shared her meeting her Larry and her wedding a short while later. And then we lost touch.

This spring of remission was short. Her lymphoma was found again, not even hiding very far from her oncologist’s detection. Her remission had not been real. She had more chemo and prepared for stem cell transplant. During that time our biggest conversations were about how to get ready, would she have to live closer to the hospital during this treatment. And she began to accept these realities and in her usual very organized way, she set about making all the arrangements.

Just a couple of weeks ago, with her port in place for the transplant, she was admitted with a fever. We hoped it was an infection, maybe the line that had been placed. Her doctors tried to hope and did cultures and started antibiotics. Within a couple of days, it was clear. No infection. Her cancer was running wild. Her oncologist gave her the news and we expedited her return home with her daughter and husband and Hospice, her new team member.

Her bucket list got much shorter. She had a couple of good days and her family was at her side pretty much the whole time. Before her discharge she told me she worried about the strain on her husband and daughter and I told her they were strong and would be fine. She said, “but I have things to do.” I asked her where she would tell me to put my energy if I knew I was going to die the next day. She laughed. Oh how I loved her musical laugh. She said, “You give me perspective. And also, I really want my daughter to go on her trip.” I said, “That is not your choice.” She laughed. We both knew she would have said the same to me.

I thought she would live a week or three. And I hoped to visit her and maybe have the courage to say a proper good bye and to thank her for the days and nights we passed together in L&D and for trusting me with her care at this momentous time. She died quietly, 5 days after going home, with her family at her side. When there is a good team, maybe there is no good way and no need to say goodbye.

Fragments

Sometimes those fragments of time that occur in the cracks between the “regular” stuff of scheduled life are so full that there is no time to even contemplate a blog entry. There are simply no moments left.

We hope we can appreciate the meaning of what is happening in those cracks.  And then there is “now, back to our regularly scheduled show.”  This site just fell off the shelf for a bit.

Here is the big news: we have a publisher for our manuscript of narratives by physicians (and me as editor/author) sharing how we have been affected and changed in our relationships with patients. This is work I have been doing for years and compiling/editing for over 4 years. That’s one reason for no blog: trying to bring us and it together to get the manuscript in. That means: I need from each contributor three things: their bio, is their story blinded adequately, and do they want their name attached or to be anonymous?  Simple no? Not! Of the 30+, I still need to track down 5. Then I need a permission slip signed by each. I may need to appear in person on doorsteps all over the country to get it done.

I need to complete the editing and proofreading,  find some sample cover images, get a head shot (of me), a short statement for the back cover, proofread the bios, maybe write an epilogue.

And anyone have friends who are famous who will look at the manuscript and write an endorsement for the back cover? I wrote to Gawande, Verghese, and Remen and they did not respond…next? One of my sons says, “Ask em again.”

My time to edit and herd contributors is cut short by other moments that I can’t just ignore, as excited as I am that this work may actually see print.

Life happens. The book is all about relationships. I simply cannot shelve them while trying to make the book happen.

I am meeting with the patients about whom I have written and if they are deceased, I am sharing the stories with their family members -if I can find them. This is a process that is full of meaning for me, for the few other authors who are also contacting the subjects of their pieces, and hopefully for the people we are contacting.

Before each meeting, I feel anxious about sharing what I wrote. How accurate are my perceptions and descriptions? What will my writing bring up for the person (or family member) about whom I wrote. The narrative is really about what I learned about me in the context of that relationship, however that means telling the patient’s story. Funny, but revealing my lesson does not leave me feeling vulnerable. Instead, I am most concerned how they feel I represented them or their family member, because our connection in reality is just a small bit of who they are or their life story.  So far, and I only have three more people to meet, no one has had big concerns; all have had things to share that either enrich the story or give back to me. I will try to write this piece in an epilogue, but doubt I can do it justice. There is a ripple effect when we are authentic about this reciprocity piece in relationships. Moments…they can build on themselves like waves.

Hearing Loss—Take Two

In my last blog on hearing and hearing loss, I mentioned how a lot of what most of us actually “hear” is with our eyes.  We unconsciously add to our sound hearing with context and even lip reading and intonation.  I would quote proportions and give a reference if I could find it again.  Oh well, I csan’t.  Tonight I went to see The Lego Movie at the advice of my son, Nicholas.  Lego characters do not really move their lips, right?  During the first few minutes, until the story line was established, I thought it might turn out to be a worthless venture with my comprehension being about 70%.  Once we were about 5 minutes into the movie, I could much more clearly “hear” the characters’ lines–because I had characters and story line. It was a very interesting verification of what I had read, tonight experienced first hand.

That brings me to the –drum roll and trumpet blasts–hearing aids. I opted for the ones recommended, that sit in the ear and supposedly do a great job of not magnifying surrounding sounds and would work for work, which for me means 1) hearing soft spoken people in meetings, 2) being in group sessions and hearing various people, and 3) using the tools of my trade: the stethoscope.  Of course I also hoped that the car radio could be at a lower volume and that dining in loud noisy restaurants would be easier.

They get a grade of D+ -maybe- except in one crucial area they get an F and therefore will not work.  I feel like the princess and the pea.

1.     In the car:  Wow, I can hear all the other cars and my car’s quirky noises.  Cool.  But I cannot turn down the radio volume.  If anything I need it louder to hear over all the “new” noises I can hear.

2.     Small groups at work:  not yet tested.

3.     Restaurants:  I used to love eavesdropping on tables near me.  I am happy to report that capacity might be back with the aids!  Hearing my dinner companions however is not improved at all.  Like the car radio, the indiscriminate pick up of the microphones does not make the near and dear clearer.  Do I want to eavesdrop or do I want to be part of the dinner conversation at my table?

4.     And the final:  I can hear NOTHING of the heart with my stethoscope and lung sounds are 90% blunted.  So this aid will not work and will be returned.

I know there are some that apparently filter better and they had downsides that left them not recommended (I cannot remember why).

We would think that the technology that is out there would have this figured out. I am back to the drawing board, trying to do my part to do my share of the conversations in my life. It is not so simple as just go get a hearing aid.

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?

happiness moments

For my birthday (11/5 if you want to remember it in the future) my son gave me The Happiness Project. by Gretchen Rubin.  I thought it was an intriguing choice.  With respect for him, I won’t spend words talking about the personality styles of my sons.  What I wondered was whether this was something he thought particularly appropriate for me or was it a projection of his sense of self.  Fairly soon after giving it to me, he checked in. “So how is the happiness project going?”

That makes the question clear, right?

I have been formally and informally evaluated (by numerous bosses, co workers, students, residents, and patients) as being serious, but with a very in tact sense of humor.  I have not been evaluated as seeming unhappy. OK if you asked the 7 full or interim chairs of my department if they think I am happy, I confess I have no idea what they would say or what their criteria might be.

Do you have a clue whether your bosses, your co workers, your friends, your family think you are happy?  And if you drew a line from 0 to 100,  0 being morbidly depressed and unhappy and 100 being ecstatic all the time, where would you rate… self rating or by others? I admit to a slight bent towards paranoia since getting the book, wondering how many, like my son, think I will benefit from a happiness project, well any more than any of us could. ( i think we all could, but not at the expense of that which drives us to seek and work for a world that is better…OK, I think it is how to have both.)

I am reading the book.  There are great tips.  I like the “enjoy the now”, “sing in the morning,” and many more that challenge me.  Others I do, routinely.  And I guess I am glad.  Think of the Eeyore my son would think I am if I were not generous, open to people’s feelings, looking for ways to be off the path, collecting (ok very small that way…two means a collection).  I do sing, not in the morning.  I need other voices around me to find my part and I don’t have other voices with me in the shower, not that I am opposed to it, just is not there. I think I have done a good job at stop nagging.  As for not wanting appreciation: I plead I am human. OK, I will take it on…not being a martyr in the not wanting appreciation, that is hard.  I am human.  It is a work in progress. I am a work in progress.

Write a novel? Forget about results? OK.  I have not written a novel.  I have written a manuscript.  And I cannot forget about those results.  I am carrying the stories of many people, including the 30+ contributors to this work, and feel a responsibility to bring it to print.  These narratives need to be shared. What shall I do next to get it there while waiting for replies?

Happiness…I think I have it a lot of the time and it is multi-tasked with the things that weigh on my mind: things out of sync with my values and yet realities at work, my kids’ health and challenges, the fears of waiting for the other shoe(s) to drop, and wanting this manuscript to become a book.  In the meantime I will read and find those tips in The Happiness Project that can grow me and maybe reassure my son that I am not Eeyore.

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

On Keep On Keepin’ On

While swimming this morning, I was thinking about these recent weeks.  They mark the anniversaries I mentioned earlier in the week and my father died this week 17 years ago.  My brother-in-law died last month and a friend (the dad, grandpa, father-in-law, and husband to close friends) died this month. Swimming is a good place to be with myself, quiet and undistracted. From reflecting on the lives of those on my mind, I moved to questions about how we live.  How is it that we keep on keeping on? that we get up and keep going? I alluded to it in yesterday’s post.  It is more central on my mind today.

Two strangers suffered a similar loss.  https://i2.wp.com/www.griefland.com/wp-content/uploads/2012/09/GrieflandBigSur1.jpgArmen’s son Alex and a few years later Nancy’s daughter Rachel died.  A mutual friend introduced them and Armen became a guide and mentor with Nancy after Rachel’s death. As they wrote and exchanged thoughts and feelings, each was drawn deeper into this land we call grief.  They became close friends and  their writings became a book I recommend you buy: Griefland: An Intimate Portrait of Love, Loss and Unlikely Friendship. 

Nancy and I had corresponded in a web-based support group over the few years before Rachel’s death. In 2009, I showed her a picture of a doll I made in a workshop based on the work of Marita Dingus.

my dragonfly

I did not have knowledge of some cultures’ beliefs about dragonflies when I put one on my doll, but I liked it even more when I learned the symbolism. Nancy asked me to make a doll for Armen as a thank you for her presence in Nancy’s life.  She mentioned she would like one too.  They each sent me a few items that were meaningful artifacts in their families. Nancy wanted each to have a dragonfly.

When the dolls were complete, I explained them to both women:

Armen, I have never met you.  Your friend Nancy describes you as passionate, a gypsy at heart, deep, powerful.  She asked me to make you a dragonfly doll and yours is my second in a series of three.  Thank you for shepherding and sharing this journey with Nancy.  Having held the artifacts you gave to Nancy, there are ways I feel I know you.  When I look at the photo of earlier days, I see the connection among the four of you. Your traveling cross and your passport express other components of your spirit.

I imagined a wild gypsy for you at first and the picture that I had df5in my mind was actually the doll that I made.  When I look at your veiled dancer now however, she looks more subtle and gentle. She is the gypsy, the carrier or holder of your story, as much as another could represent it.  She is clothed in layers that can swirl or hide.  She is complex.  If she is a carefree gypsy, she is also a tender soul who can hold much in her softness for those whom she loves.  Your dragonfly is made from Swarovski crystals.  Crystals should refract light to show a rainbow: many colors, many symbols in many cultures.  dragonfly1Your doll would embrace the variety, which for me mean life and hope and beauty.  When you look at the inside of the cape, it becomes obvious that the story is yours.  The cape is held down, weighted, grounded by the two beads that are bone, raising your friend’s question of where do the bones go?

The lizard on your shoulder is for Alex, who loved lizards. The mother and two children: Danielle and her two and of course, you and your two, all linked to each other.  The ring is for your many years with your husband. The weights at the edge of the cape are also for your connection to writing, to Setrakian and Sorayan.  The key, from Rachel, is what keys are, both the means to open and move through, and also the reminder that we do not have to do these walks alone.  You are the living demonstration of this in your friendship with Nancy.

The heart is within the key; no key functions outside of our hearts. There are two word notations, “peace” and “&”.  You live in words; may they bring you peace. The “&” is an inclusive word.  Your cross is of course for your travels, and for my wish that many jeweled adventures lay ahead.  For this walk, you need boots; Nancy felt shoes were a key symbol for you both.  That they are boots is my touch: they do work, they touch dirt, they kick when necessary.  There is a bit of imaginary cowgirl in me.  We also share the material in your doll’s veil; my doll has the same fabric as a cape.  Both yours and Nancy’s dolls have the same fabric in their capes, reversed.

Nancy, your doll is the Lady in Red.  df2This was your stretch, and for us, always remembering to stretch will help keep us sane.  That we have never met is really rather amazing when I think about our connection.  Making these dolls was a treat for me. Because of your request, I could know you better.  Your dragonfly is like an amulet, a shield, beaded with the colors of earth and fire, the counterpoints for this insect that lives between air and water.  It is fastened with the button from your youth, because those years are the template from which you have grown.  It emerges from your paisley fabric, linking you further to your past.  It is fringed to represent a talis for whatever form your spirituality takes.

df7As with Armen’s doll, the inside of the cape is where your family tree lives, showing that the doll is the keeper of your story.  I picked a quote from Saroyan’s book Where the Bones Go, because really, this project came to be in large part because of Rachel bringing you to Armen.

Your dragonfly doll is regal and proud and unbound.  She strikes me as a protector who can stand tall, feel everything, living in her domain, not constrained by tradition or dictum. df4 Jessica’s cameo is on your skirt.  Do you and Jessica know that cameos are seen as a vow of love, sometimes given to travelers? Josh’s Aztec cross can be another talisman, protecting you from evil.  Rachel’s Mama Bear icon became part of Rachel’s key, because how she saw you and your heart will be part of your discovery as you use your key.  The beads then encircle you and thread connects the three siblings to your heart.  The heart on your doll is one from a pair of earrings; the other one is on my doll,  as our hearts are linked.  And of course, there are two keys; you have one and Armen has one.  Your word is grace.  You also live in words and your journey is rich with grace. The “&” is inclusive; do you remember in seminar hearing how “but” negates and “and” expands?  You told me shoes were very important.  The boots are my touch.  Boots do work, they walk through shit, and they kick when necessary.

Other Side of the Bed

Luckily I have not spent much time truly on the other side of the bed as a patient. And those moments have been brief, though worth being snapshot vignettes in this post.

There was the time at 18 years of age that I had surgery on my tail bone. When I went to the post operative exam, the surgeon had three medical students shadowing him that day (males all of them, not much older than I). The nurse put me in a room, noting I had sweat pants and a t shirt on and would not need to change to a gown.  When the surgeon and his students entered, there was a brief exchange:

“How’re you doing?”

“I’m fine.  Can I go back to work?”

“”Well, let’s see, bottoms up!” he exclaimed as he tipped me into leaning over the exam table as he pulled down my sweat pants, exposing my surgical incision (and buttocks) to the students. To this day I wonder. Was he doing a bravado thing for the students? Was it an attempt at funny, with me included and not as the object?

A few years later, when I was in grad school, I was hospitalized at UC Berkeley with a pneumonia. I was 21. Thought to be a bug called mycoplasma, the treatment those days was tetracycline.  That stay was notable for several things.  Because the hospital was right on campus, friends could visit at all hours- and bring me things I needed, like cigarettes.  In those days the only reason I could not smoke in the room was because I was on oxygen.  Can you believe it, pneumonia and no policy against smoking?  You could often find me leaning out the window with my oxygen off, having my smoke.

While there, my face, arms, chest and back all broke out in the most amazing case of an acne like rash.  It hurt, it burned, and it itched.  None of the doctors seemed concerned, though they would say “Hmmm, I wonder”  or “Hmmm, have you been sweating a lot when your fever breaks?” I was  a relatively compliant patient (other than the smoking), sitting there, taking what medicines they gave, asking very few questions. There were also had medical students on a “student health” rotation from UC San Francisco.  One day, in came the attending doctor, white coat pocket’s full of papers and gadgets. With him were 5 young men.  Yes men…few women yet.  They had on short white coats, with pockets stuffed more that those of the attending doctor.  By the time of this incident I was very close to the same age as them.  Most medical students went straight from college into med school.

They circled the bed with the attending at the center looking at me from the foot of the bed; the students, two or three to each side, were at his side with “What new exciting thing will I learn” expressions on their eager faces.  I, the specimen, was asked to raise the head of the bed and sit up.  This was not hard (I mean, really, I had just been at the window, hanging half way out to satisfy my nicotine urge).  I complied.  While they did not have beards and those big white collars, I could not help but think of Rembrandt’s The Anatomy Lesson of Dr. Nicolaes Tulp.    I almost laughed out loud.  If I had any inkling I would be heading for medicine, I might have been more understanding, but no, I was going to be a social policies person, community advocate extraordinaire. So these fellows amused me with their devotion to, well I was not sure what.

As the attending spoke about my case with words that were at that time a foreign language, he reached across the bed and with aplomb, he pulled down my gown, dropping it at my waist. There I was, sitting, at age 21, bare breasted with this horrific acne like rash, facing these eager students and their teacher as he lectured about my skin condition, tying it to the fevers and sweats I had in the previous days. This monologue was probably only a couple of minutes. It felt like an eternity.  I sat there dutifully.

We teach differently and hopefully our students and residents know to attend to patient comfort.Knee Device_2

This is me, 2009, fractured tibial plateau, post repair by a surgeon who held my hand while they put me under anesthesia.  I cannot tell you how much that meant to me.

Knowing that there is so little I can know about another’s experience is one thing; life reinforcing that knowledge hits it home.

All the time, I start patients on lisinopril and other medications that are called ACE Inhibitors.  Some significant proportion of them come in saying, “Change it. The cough is unbearable.”  When they say “cough,” I am all over it.  I change their medication to something else.  I ask questions about the cough to convince the patient and me that the cough is not from an illness rather than a side effect of the medication.  I ask about fever, cold symptoms, smoking, sputum production, timing of the cough, things that make it better and worse.  Inevitably the patient has stopped the medication and the cough has vanished, poof, just vanished. That’s enough for me; I suggest an alternative.

This past month my doctor and I have been discussing my blood pressure.  From the 14 hours I could tolerate the 24 hour blood pressure monitor, it was clear.

OK first, to any of my patients who I have subjected to a 24 hour blood pressure monitor, my heartfelt apologies.  I thought it was a nifty high tech device that silently and unobtrusively recorded blood pressures as the day went by. NOT.  It is a clumsy cuff with a big fanny pack to be worn.  I was more or less ok with that.  BUT it beeped every time it was going to take a blood pressure, leaving me explaining it to co-workers and then awakening every 20 minutes during the night, to finally throw it across the room at 2AM. I thought I would have a hypertensive crisis from wearing the thing.

My results were clear:  to manage my blood pressure all I needed to do was not work and spend a lot of time in bed. I like that idea, but I could picture the bills mounting, so opted for a very tiny, almost homeopathic dose of lisinopril, 2.5 mg for any of you who might be in the guild.

Sweet, I thought. Days 1 and two went fine and I even remembered to take the pill.  I was getting over a cold and was not surprised by the occasional cough.  (For those who do not know me, I do not any longer hang out windows smoking; I quit 28.5 years ago, but am sure, when I have a cold, that my lungs remind me of those days.) Then came day three.  At about 1030 that morning I felt a tickle in my throat.  No big deal.  A tickle is a tickle.  Thing to do: clear my throat.  I coughed once and went into this several minute spasm that went from gasping for air to wanting to reach down and tear the tickle from my throat to knowing that some more coughing would not solve it. With a drink of water, it settled down.  At 2PM there was a repeat, and again at 5 and 9PM.  The next three days were no different.  NOTHING prevented them; this was like nothing I had ever experienced, even in my smoker’s cough or whooping cough days.

I stopped taking the lisinopril and still need to tell my doctor.  That very weird cough is gone.  The real test would be to take it again and see if it has come back.  I actually have suggested that to patients with whatever med they are not tolerating, to prove to them (and me) that it really was a side effect to the medication.  I did that with tetracyline.  Guess what: same rash, I am allergic to it.  With this lisinopril, I am not sure I want to take my own recommendation.

What I cannot believe is that I have never really understood from what patients described to me that this cough is really beyond annoying.  There is no way I could see patients, teach or even concentrate with it!

The last of recent lessons has to do with cataracts.  I have probably had over a thousand patients get cataract surgery, almost all very very happy with the results.  NOT ONE has talked about the 5 weeks of 4 times a day drops (four different ones, spaced 5 minutes a piece) Have you ever tried to do something and know that in five minutes you have to do drop #2 and five minutes after that drop #3 and after five minutes later drop #4…only to repeat 4 times that day? That requires a lot of focus.

And not one person talked about the challenge of how do you see when you cannot get your new prescription for six weeks?  My surgery on my right eye was a piece of cake.  For the first time since age 13 I can see 20/25 without glasses.  Cool. Here’s the catch!  I cannot read anything out of it.  If I put on my glasses, my left eye is happy and can see mid, far, and near.  For my right eye nothing is right. I have to wait six weeks to get that script. If I have my glasses off, my left eye is not good at near, mid, or far distances, but my right eye can see far.  How did I not know this from all our patients?  I am fine.  My brain has adjusted and luckily I have not had a complex tear to repair for a woman having a baby or other need for both eyes to work together.  Tomorrow I get a pair of glasses that will be right for both eyes until the left eye is done and then I will have six more weeks.

To my patients:  I now know better how to ask about your experience.  And I celebrate your resilience and how your carry on and adjust, regardless!

Backslide

Parent is a noun, not a verb.  In late twentieth and the current centuries it has been relegated to verb status by many who speak to the art of being a parent, as in “to parent.” Leaving the semantic argument aside, there are developmental challenges along the way of being a parent.  How we spend time with, coach, and nurture a two year old is different than for a five year old, twelve year old, twenty-five year old.

One quote I found: “Parenting isn’t a noun but a verb–an ongoing process instead of an accomplishment.  And that no matter how many years you put into the job, the learning curve is, well, fairly flat.” Jodi Picoult House Rules

When our children are little we are in active verb mode. We nurture our kids not just by our presence; we set the standards, the expectations, the family values.  We guide, we play with, we love our children.  We do their laundry, buy, cook and serve their food, coach their teams and attend their games, help with homework, be sure the homework is done, take them and their friends places, teach them to ride bikes and practice reading and math, celebrate their accomplishments, wipe tears from their eyes, and tuck them in at night with stories and hugs.

Then they start to shun our verb like presence in their lives, brushing it off like they brush off lint on their dark sweaters with the apparently emerging demonstration that they care about how they look (even if that look isn’t one we particularly like).  Well, actually, it’s all the better from their perspective if it’s a look we won’t particularly like. The practice we got with our two and four year olds, hearing “no, I do it myself” should serve us well when not a decade later their cry is undeniable.

I don’t know about you, but for me I was in boot camp training to transition from verb to noun.

“Mom, why are you bugging me about my work?”  “Mom, are you going to come to college and make sure I get enough sleep and eat the right food?”  These were all good points, but in my mind I had the answers ready, even as I tried, often unsuccessfully,  to avoid sharing them: “I am still paying the bills.”  “Maybe you don’t know how important this is.” “You think you are older than you are or act.” My thoughts did not dampen the push back, nor should it have.

I admit to jealousy that  some parents have an easier time with this transition than I did. A concept and an image both helped me.  The image is of those bobble head dolls that sit on dashboards.  My job: imitate them as much as I could.  The concept:  stop parenting as a verb and embrace parenting as a noun.

My sons are adults now.  Unless I am asked or it involves my resources, there really is no need to be a verb.  Sometimes it is hard.

The other night I was giving my son a ride somewhere. All day I had been worrying about something that (1) was not really my business and (2) was really not worth worry and (3) did I mention it was not my business? So I brought it up in the car and the words floated, no rushed from my mouth in a torrent I couldn’t stop soon enough to prevent them reaching my son’s ears. As the sound waves were traveling, I realized I had just taken a giant step backward. Verb, giving advice that was not asked for or needed. And my son’s radar is finely tuned for sniffing out parental back sliding. He called me out, suggested (with amazing tact, given the visual darts coming my way) alternative wording. And I apologized.

Some kids are more tolerant of their parents and some maybe even enjoy frequent meddling (verb) by their parents.  I guess I can thank my kids for the hard core training they give me.  Wait, that’s a verb!  Can I look forward to noun from them some day?

The vote

I started three different posts tonight and cannot decide on the order.  Which first?  Which second?  Which third or not at all.

This blog has 150 “followers.”  Now is your chance to weigh in.  Here are the choices for the next few.  What do you want to hear?

1. Parenting as a noun (vs verb), a back slide (car ride Wed night)

2. life on the other side, eg in the bed as patient

3. Counting on the Latino vote

4. Getting quiet with yourself

Tomorrow will be one of those. If you weigh in, that will decide which.