Category Archives: family

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

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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.

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.

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

 

 

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.