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Advocate

The Culture of Participatory Research

By | Advocate, Researcher | No Comments

My recurring mind loop these days is non-traditional patient, non-traditional patient, non-traditional patient. I heard it repeatedly while attended a one-day symposium, Putting Patients at the Center of Research: Opportunities for Ethical and Regulatory Oversight at

Harvard Law School’s Petrie-Flom Center. See a great report written by Andy Oram about the symposium here. The symposium showcased a PCORI (Patient-Centered Outcomes Research Institute)-funded study about patient involvement in research in non-traditional roles (not the subject*). The study actually focused almost exclusively on Institutional Review Board (IRB) perceptions of patients in non-subject roles. Interesting focus since the role of the IRB is to protect patient rights in research studies as subjects, not other roles.

*Please note: Subject is a loaded word for some. They say participant rather than subject, a more egalitarian term. I’m sticking with using subject because I’m introducing the label of Participatory Research. I don’t want to confuse the issues.

No one’s ever accused me of being a traditional patient and I’m not defensive. Right:) You know I’m heavily involved with PCORI whose reason for being is to fund research that matters to patients and will benefit patients. It’s odd that a PCORI-sponsored study would label anything a person does who is not an academic and not a subject of a research study as non-traditional. The roles the study refers to as non-traditional are membership in the research team as an investigator, advisor, consultant, recruiter, or disseminator. It seems that the study started with a bias when they called other roles, nontraditional, rather than, say, non-subject roles. It didn’t call researchers who include patients in non-subject roles, non-traditional researchers.

My patient/caregiver activism rests on a foundation that patients and caregivers should have a seat at the table for governance, design, operations, and learning of healthcare policy, planning, delivery, improvement, and research. It makes sense that much of the research industry feels like a fish out of water with patients in their midst. Perhaps labeling (non-traditional) is a reflection of their acute discomfort with other. We call people of the Navaho nation whose ancestors lived in the continental US before the Puritans, American Indians. We call people who emigrated from China during the California Gold Rush, Chinese Americans. Yet, I’m white, first-generation American. I’m not called Dutch/German American, just American. Perhaps when many researchers think patient, they think someone wearing a hospital gown with their butt crack bare, not skilled, insightful, hardworking, curious, passionate people like themselves. Other.

As a reviewer of PCORI funding requests and co-chair of an Advisory Panel, I’m fortunate to be part of a leading edge of culture change in the human research industry: Participatory Research. I have seen research teams with patient/caregiver stakeholder Investigators and Advisors paid on equal footing as the academics. I’ve even seen respite care budgeted for carees of caregivers, so they could free themselves to participate in any role. Culture change seldom occurs by waving a magic wand. Rather it moves in fits and starts as the bulk of researchers follow Participatory Research early adopters. Early adopters see participatory research as a no-brainer. Those that follow feel like they’re putting round pegs in square holes. They question the capacity, skill, and confidentiality of lay people in research team roles. They think patients need to be protected, that they need to become more research literate. A great research team has members with statistics and methods expertise, recruitment expertise, project management expertise. Often with less experience with patient/caregiver life flow and direct care clinician workflow. They seldom require life experience training or statistical training for those without such experience. However, everyone, no matter the role, needs to have documented understanding of the rights of subjects and confidentiality of individual data.

I appreciated the presentations at the symposium of three patients (Jane Permuller, Marty Carney, and Paul McLean) in non-subject roles highlighting the benefits of patient participation in research. I also respect Harvard Law School’s Petrie-Flom Center for scratching the surface and reminding us (me) that the spread of participatory research is in its infancy and we activists have much work to do.

2+2=what?

By | Advocate, Caregiver, Clinician, ePatient | No Comments

Alice’s blood pressure is 110/50 right now. That’s a data point. Her blood pressure, untreated, lives around 150/90. She’s prescribed medicine for it, but she ran out last week and doesn’t get paid for a few more days. When she stands up, she gets sweaty and feels like she might pass out.  That’s a bunch of data and a story. Hopefully, the data and the story are given meaning (processed, analyzed, interpreted) by someone with Alice who has medical experience and skills and leads to information about her safety. Alice might have orthostatic hypotension. She probably should sit down, for now, refill her prescription, and get some medical help.

So, the 110/50 (a single data point) doesn’t mean much by itself. Multiple data points + stories, when processed, can lead to information.  Information leads to choices which can result in action. Data and stories about Alice are collected by her, others, and machines. She might be able to interpret data. So can others and machines. Most action taken as a result of information about Alice is done by Alice. She can’t write a prescription, but she can take it. She can sit down and elevate her feet. She can seek medical treatment.

Some people and their clinicians are drowning in data and can’t breathe, let alone learn from that data. My OpenNotes record from my neurologist is full of data. Unfortunately, even as a nurse, I understand very little of the note. I want some simple information from the note. How am I doing? I have a progressive disease that will get worse. Am I getting worse? Five pages of data in a note and I can’t tell.  I asked my neurologist to explain it to me.  He did. Took about three minutes. Turns out the Expanded Disability Status Scale buried on page 4 was the key. I have moved from 5.0 to 5.5 on the scale in the last two years. He used it to support my claim for disability payments.  But wait, that’s not right, I can’t walk 100m without my cane.  Oh, he says, then you’re a 6.0. Worse than he thought, but now we know. That was an example of missing information (for me) and erroneous information (for him). Let’s not forget biased information. That’s a subject for another day.

The person-clinician relationship feeds on a  two-way loop of data, stories, and action about the person receiving care and support. The art for my clinician team members is to help find, share, and interpret data about me and about groups of people like me (old, affluent, white men with Multiple Sclerosis, high cholesterol, food on the table, who have insurance, a home and family), combine them with stories about me, to help me make sense of it all. So I can do something with the information that makes sense to both of us.

So, I still want my DaM Data (Data about Me). But it’s no good without transmogrification (great word!) into information that I can use.

Photo by Gaelle Marcel on Unsplash

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Help Me Be Patient-Centered

By | Advocate, ePatient | No Comments

 

Everywhere I go it’s patient-centered this and patient-centered that. What does it even mean? It doesn’t take long for buzzwords to wear thin (patient engagement, silos, gig economy, NexGen). Don’t me wrong.  I wholeheartedly support Patient-Centered Outcomes Research Institute (PCORI) and the Patient-Centered Clinical Decision Support-Learning Network. I subscribe to  Picker’s Eight Principles of Patient-Centered Care.

I also endorse the IOM (Institute of Medicine) patient-centered definition “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”

Once something becomes part of popular jargon and media I can’t help but re-evaluate what I mean and what others mean. When I’m invited to sit at a governance, design, operations or learning table I ask, What do you mean by patient-centered?  Invariably, people assume what others mean and actually have different definitions (or often, none at all). The most common definition people say is, patients are in  the middle of everything. Well, they’re not. I can’t even picture the design challenges of patients in the center of everything. I am in the middle of everything for me. That’s complicated enough. I’m learning that being self-centered means taking care of myself and standing up for myself. I’m responsible for doing the work to understand and communicate my preferences, needs, and values. I’m responsible for respecting myself. I’m pretty good at that, but I could be better. I need my whole team to understand their preferences, needs, and values, respect themselves and take care of themselves. I need them to keep up with the skills and knowledge of their specialty or role. Stronger team members make for better collaborators with more respect overall. I’m going to have better health in the long run when clinicians  stand up for themselves and struggle with the oppressive business of health care. I’m better off when they are less burned out and have more time for me and themselves. I’m better off if they’re self-centered and take care of their jobs – knowing and communicating choices to me. Read More

Give Me My DaM Data::Open Source

By | Advocate, Clinician, ePatient, Informaticist | One Comment

I’m sensing a harmonic convergence for data control by patients and their trusted licensed clinicians through Open Source. Could a Give Me My DaM Data revolution be upon us?

Give Me My DaM Data (Data About Me) has been a rallying cry of the ePatient Movement (ePatient = Empowered, Engaged, Equipped, Enabled) for quite a while. At the same time, physicians and other licensed clinicians express increased frustration – no, outrage – that the electronic health records support billing, not clinical care. See the National Academy of Medicine’s Care-Centered Clinical Documentation in the Digital Environment: Solutions to Alleviate Burnout.

For me, Give Me my DaM Data means

  1. Data that matters to me
  2. Data that I can understand
  3. Data that’s correct
  4. Data that I control
  5. Data I can use to make decisions with my licensed clinicians

In short: Everyone with permission from me sees the same correct, up-to-date data set.

Today, let’s consider #4 Data that I control

  • I can access it easily
  • I can track who or what is trying to see it, actually sees it, adds to it, changes it (history of use)
  • I can give and withdraw permission to whom I want
  • If there’s money to be made from it, I get some of it

Right now, data about me is controlled by EHR and health app vendors, hospitals, insurance companies, government, and companies with a business model that sells data about me – not me. Read More

Danny playing bari sax

I’m Gonna Quit

By | Advocate, ePatient, Musician | 9 Comments

I’m ready to quit playing my horn. I can’t seem to bring what I’ve learned while playing at home (practicing) to rehearsals. I’m lost.  I have fat fingers. I can’t find a 2 or 4 measure rhythmic pattern that works. I lose my place. I can’t seem to learn the language. I definitely I don’t have the muscle memory yet.  It’s disheartening. I’m used to being good at what I do. I was a great bedside nurse. I was a really good boss. I’m a prolific and engaging writer. I’m sought after for my patient/caregiver activism. Music, not so much. I’m persistent, not talented. I’m humbled, playing music. Part of  the secret sauce to managing my Multiple Sclerosis, is that I keep manageable stress to a minimum. Being a boss and employee was too stressful, so I stopped. I don’t have secrets. My close relationships are fresh and up-to-date.  I adapt well to my slow reduction in function. Playing is stressing me out. Wait, I haven’t had a sax lesson in months.  My teacher is very good. Positive and creative with my fluctuating abilities. Tells me to play less.  I didn’t stay at the top of my game in my 40+ year career without coaching and mentoring. It wasn’t possible. I play for a reason. It’s one of two outcomes I track with my doctors (falling and playing the saxophone).

I’m not quitting. Thanks for listening.

You say you want a revolution

By | Advocate, Leader | No Comments

Yesterday, I was listening to Casey Quinlan’s podcast, Healthcare is Hilarious: an interview with Victor Montori who wrote Why We Revolt-The Patient Revolution for Careful and Kind Care.  I haven’t read his book yet, but I will. The interview on Healthcare is Hilarious is stellar.

Merriam-Webster says a revolution is:

  • a sudden, radical, or complete change
  • activity or movement designed to effect fundamental changes in the socioeconomic situation
  • a fundamental change in the way of thinking about or visualizing something: a change of paradigm * the Copernican revolution
  • a changeover in use or preference especially in technology *the computer revolution *the foreign car revolution

One of the things that Victor said was that reformers are important, but healthcare is not designed for health and wellness, care and kindness. The entrenched forces will not fundamentally change with reform. It needs a revolution, a patient revolution. I’ve never been good at putting other people’s labels on myself – I don’t know if I’m a reformer or a revolutionary. During my professional and now activist career, I’ve seen myself as a catalyst for change – sustainable change that continues when you’re gone.

My revolutionary heroes include: Mary Wollstonecraft (sparked the change to allow women to have the right to full participation in society), Mahatma Gandhi (the power of nonviolence and forgiveness), Oliver Cromwell (translating the Bible into English so lay people could read it), Florence Nightingale (invented nursing and used statistical analysis to improve care), Albert Einstein (the theory of relativity changed how we think of time and space), and Rachel Carson (sparked the global environmental movement).

The relatively recent revolutions in healthcare that stand out to me include the discovery of anesthesia, legislation for Medicare, Medicaid, the Consumer Protection Bureau, Patient-Centered Research, and universal voting rights for citizens over the age of 18. Add value-based payment, elevators,  asynchronous communication,  palliative care, anti-viral medications, precision medicine, synthetic opioids, desalinization of water, mass-produced solar power, worldwide transportation (of people, food, products, and pests), smoking restrictions.

With some revolutions, there’s no going back. Anesthesia isn’t going away.  Neither are elevators. Every revolution has unintended consequences affecting some people badly, even lethally. Anesthesia can cause harm. So can elevators, asynchronous communication, and synthetic opioids. Legislation can be undermined or rescinded. Almost anything can be co-opted and diluted. Most revolutions are never-ending projects requiring constant vigilance and advocacy.

In my narrow world frame, I look for the magic levers of best health.  What small things make an outsized difference?  Obviously, drink clean water, eat just enough, don’t smoke, get plenty of rest, do meaningful work are magic levers. Maybe the revolutions are magic levers, too.

The revolutions that I’ve hitched to are:

  • People at the center of care sitting at the tables of governance, design, operations, and learning for research, policy, payment, technology, and care delivery.
  • Individual ownership (access to, contribution to, authorization for, and payment for) their own health data.
  • People and relationships at the center of care making decisions together for best health.
  • Healthcare as a right with universal access.

Note: people at the center of care are patients, direct care clinicians, and the people that support them.

I like to try to predict future revolutions, although my track record of predictions is terrible (I was never going to get married or have kids. I was going to keep my last real job until I was 70 and then I’d retire). The thing about revolutions is that they’re crazy difficult to predict and harder to consciously engineer. I’m old now. I don’t want to run anything anymore. I’m happy to follow revolutionary leaders who are charismatic, kind, caring, and persistent.  I can be a thought leader, a writer, and a solid team member. So, I am not the revolutionary.

Viva la revolution!

Photo by Sadık Kuzu on Unsplash

A Seat at the Table. Now What?

By | Advocate, Researcher | No Comments

Walking in the door, I look around me. Who are these people? What am I doing here? I’m not an academic. I’m don’t represent a national advocacy organization, a health system, or insurance company. I don’t work for pharma. I don’t represent an EHR vendor or software startup. I’m not a techie. I’m not, I’m not, I’m not. I’m just little Danny van Leeuwen. Yet, I’m finding myself sitting at several tables – research, data privacy and access, measurement, design, palliative care, behavioral health, policy – as a patient/caregiver scholar or stakeholder or activist. It’s been a heady, nerve-wracking, sober, and awkward process.

A core principle of my advocacy: People at the center of care (patients, direct care clinicians, and those that support them) need to sit at the tables of governance, design, operations, and learning in all aspects of healthcare research, delivery, and policy making.

Thank goodness I salivate standing in front of the complex Tower of Babel. In a weird way, I welcome the nonsensical business puzzle of sick care. Every tribe represented around the tables has a different language, all, apparently, in English. My first tasks are clarifying purpose and audience, inventory related efforts to-date, and figure out the one thing above all else that I want to accomplish at this table.  Whenever I don’t understand, I ask. What is an artifact? What do you mean by patient-centered? Who pays? Who cares? I propose definitions in my own words, words I think lay people might get. I tell my colleagues that I need to be able to write about it for you.

Next, I develop relationships and build trust. It’ll surprise you to know I’m an extrovert (Myers-Briggs ENFP if you go that way), so it’s natural for me to build relationships. The best way for me to build trust is to take on tasks and deliver on time.  And listen more than I talk. That’s work for me since I like the sound of my own voice. I prepare, do my homework, read everything provided in advance. Again, I bring one goal to accomplish in the upcoming meeting. When I feel small and intimidated, I think of the mouse, Jerry, of Tom and Jerry cartoons. (Does that date me?) I lean into the feeling of intimidation.

Broadly, I look for more opportunities to bring other people at the center of care to this and subsequent tables. I set my expectations low, so I can be delighted when they’re exceeded. We don’t have to hit it out of the park. I relish any humor and irony I stumble upon. It’s a fertile field. If I’m feeling crabby or hopeless (more than the normal anger at our sorry state of healthcare delivery), I back up and take a break. Play music, meditate, exercise, spend time with family, space out. Self-care first. If I feel disrespected, I’m out ‘a there.

Mostly, it’s fun, fun, fun. People care, people want things to be better, people want to accomplish something. People have hope. I hope we’re moving a battleship three degrees.  I know it needs to turn at least 45. Play the long game even if you’re a short-timer.

Photo by Ken Treloar on Unsplash

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Paying for Value. I’m Overwhelmed. Please Read This

By | Advocate, Caregiver, Clinician, ePatient, Researcher | 3 Comments

As you may know from previous posts, I sit on a Center for Medicare and Medicaid Services (CMS) panel about Quality Measurement Development: Supporting Efficiency and Innovation in the Process of Developing CMS Quality Measures. Jeesh! What a mouthful! In English, for me, this means, if Medicare is going to pay for value in health services, what is value? How will value be measured? How will value measures be created? And, should we care? We (people at the center of care – patients, clinicians, and those that support us) absolutely should care. First of all, we are the ones who are actually paying.  Medicare, Medicaid, and insurance companies write the checks, but their accounts are filled by us as taxpayers and employees.  The more money spent on healthcare, the less money is spent on our wages, public health, safety, everything. Hospitals and professional practices respond to how they get paid more than anything. When they are paid for volume – more treatment, surgery, days, and visits – they do more since it means more money for them. We know that more does not necessarily mean better for our health. The healthcare industry is creeping toward paying for value, not volume. Value should mean better medical care, better health, better relationships within our health teams, and better work life for those of us that are professionals. The definition and the measurement of value become critical. An example is readmission rates. Volume is paying for every admission. Value is not paying for a readmission to a hospital within a certain number of days. There are roughly 1,000 of such quality or value measures.

I want to share with you some of the recommendations made by the technical expert panel so far (this is from the second of four all-day sessions).  You can find the full report from the January meeting here on the CMS website, but it’s hard to get to the report, so I put it here to make it easier. I’m listing the recommendations below with my interpretation in italics of what they mean. Nobody at CMS or Battelle or the Panel has endorsed my interpretations. They’re all mine. But it’s no good if you don’t know what’s going on and I’m not sure if reading the report will help. So, here goes:

Recommendations

  1. Institute a governance process to help plan, develop, and manage shared measure testing resources. Measures need to be tested to see if they work. Working means that they measure what we want them to measure, that they measure the same thing every time, and that it makes sense. People developing measures use large sets of data to test to see if the measures work. Many organizations suggest measures, measure the measures, and publish the measures. This recommendation says that there needs to be a governance process (a clear and understandable way to make decisions) about how measures are tested. Right now measures are mostly tested using claims and electronic medical record data. It’s not enough. Data from patients and the experience of patients and clinicians are important too.  We don’t have much experience with using this kind of data for value. Lots of decisions ahead of us.
  2. Incentivize participation in measure testing. Everyone who creates measures won’t test measures out of the goodness of their hearts or because it’s the right thing to do. Incentives encourage people to test measures in new ways. Incentives for organizations can be similar to incentives for people. I am more likely to do something if it’s easier than not doing it; if it’s required with a penalty if I don’t; if people give me credit for my work; if I get paid or a discount on something else; if I get more business if I do it. You get the idea.
  3. Promote data element standardization and education. Measures are made up of data elements. A very simple measure is the fraction of females in a group (55% of the group are females). But it’s not so simple. How do you define the group and how do you define the data element, females? Is a female a person that can bear children, has two X chromosomes, self-identifies as female… What’s important with measures is that everyone using the measure defines it the same – there are agreed upon standards. A requirement to make the definitions and standards available for anyone to see helps too. Nothing hidden.
  4. Implement a framework with a long-term plan on how CMS will approach measurement.  Changes to the way measures are developed won’t happen by waving a magic wand. It takes time and effort by lots of people. Some things tried, won’t work. Something else will need to be tried. It takes a long-term plan, like retirement.  We need a picture of how the plan will move along and adapt to new knowledge.  That’s the framework.
  5. Institute an acceptable “quick path to failure” mechanism in the measure development process with well-defined steps. Developing measures is expensive and time-consuming. Whenever new things are tried, some don’t work.  We don’t learn to walk without falling. We need to know that something isn’t going to work as soon as possible so we can try something else. But if people are going to “fail early” they need to know how to do that and be paid for the work they do, even if it doesn’t turn out as expected. Again, incentives.
  6. To facilitate development of cross-program measures, consider a different organizing structure for measure development contracts/projects that cuts across programs.  Right now, most measures are diagnosis-specific for one setting (home, hospital, nursing home). But people aren’t their diagnosis and they spend time in many settings. Measures across diagnoses and settings are hard to develop. The science is young. They’re different and should be managed differently. As a patient, I care about this a lot.
  7. Provide funding for the development and implementation of a national testing collaborative. Changing how we develop measures is expensive and a risk. The government should pay for some of this experimenting with testing.  It’s an incentive.
  8. Develop an objective scoring system to evaluate measure testing concepts that are currently assessed subjectively such as importance, burden, and feasibility. Changing how measures are tested could end up like the Wild West- shooting from the hip, pretty wild, with those having big guns controlling the town. Having a scoring system (more points for helping patients and clinicians, more points if it’s easy to do it in many places, more points if I can do it the same way after you figure it out) really helps manage these new ways of testing measures.

Overwhelmed? No wonder. Me, too. I’m sitting at this table because I think it’s important stuff. I appreciate that CMS cares and included me. I respect the knowledge and passion of those around the table and they respect me. It’s government at its best. It helps when you understand this too. Even a little bit. Please ask questions, comment, and share. We’re pretty smart but not as smart as we think. We need your smarts.

Photo by Ashim D’Silva on Unsplash

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Failure is Under-Rated

By | Advocate, Caregiver, ePatient, Leader, Musician, Researcher | 2 Comments

I’ve told my teams over the years, if we don’t fail several times a week we’re not pushing the envelope and not doing our jobs. We weren’t tightrope walkers, pushing IV meds, or manufacturing artificial joints. We were innovators, learners, and leaders. Failure as a virtue is a hard sell – to almost anyone. My teams, my colleagues in leadership, editorial review boards always start by thinking I’m crazy.  Sometimes they eventually get it, sometimes not. Leadership usually wants to get A’s. In one health system I worked for, I reported that we successfully completed medication reconciliation in 40% of admissions. OMG, that’s awful! They said.  No, I said, that’s great! We’re failing. Let’s succeed. In 18 months we completed medication reconciliation 70% of the time.  It’s a lot harder to go from 70% to 80% than 40% to 70%. In research, we don’t publish when the study doesn’t prove the hypothesis. Yet, not proving is as important, if not more important, than proving. I was on an Editorial Review Board once that decided to solicit articles where the hypothesis wasn’t proven and something was learned. Over a 10-year span, we solicited exactly 0 such articles. Zero!

A definition of failure to some is the opposite of success. Not necessarily. Especially when it comes to learning and getting healthier. We don’t tell kids they fail when they fall learning to walk. They keep trying.  Same with learning to talk. As an adult, I find failure a motivator to try again.  As a thinker and a catalyst for change, I’m delighted when I succeed with 30% of what I try. It’s been the rare boss that’s accepted that. They’ve been the best bosses and we’ve done the best work together in my career.

For health, embrace failure. I did eye exercises twice a day for 8 months before my brain rewired and my crippling double vision cleared 80%. That’s 360 failures and one success! It’s taken years of trial and error to land on a balance, stretching, and strengthening routine that works for me. I stumble a lot, fall infrequently, and sustain only minor injuries when I do. I get frustrated when I see failure and stuck in the muck. Fail and try something else, that’s the ticket.

Failure flavors humility and empathy.  My best stories are of failure – my failures. People laugh with me.  We can all relate to failure. It’s the warp of our lives. Hearing about a failure, we naturally ask, and then? What happened next?  What did you learn? What did you try? What eventually worked?

So, failure, persistence, and humor are inseparable cronies. Keep trying and chuckle at the absurdity. That‘s life, health, music – anything worth doing well.  Persist and laugh. Eventually, who knows?

Photo by Nik MacMillan on Unsplash

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WHAT RESEMBLES THE GRAVE BUT ISN’T

By | Advocate, Clinician, ePatient, Family man | No Comments

Photo by Lily Lvnatikk on Unsplash

Apologies for the duplicate post. I changed hosts and lost this post in the migration.

My friend and story-teller, Susan Spivack, sent me this poem. Really spoke to me. I may be pathologically optimistic and live in a comforting, safe, privileged bubble, but I allow myself moments of despair, feeling sorry for myself, and overwhelmed with the pain I feel around me. Doesn’t this say it beautifully?!

WHAT RESEMBLES THE GRAVE BUT ISN’T

Always falling into a hole, then saying “ok, this is not your grave, get out of this hole,” getting out of the hole which is not the grave, falling into a hole again, saying “ok, this is also not your grave, get out of this hole,” getting out of that hole, falling into another one; sometimes falling into a hole within a hole, or many holes within holes, getting out of them one after the other, then falling again, saying “this is not your grave, get out of the hole”; sometimes being pushed, saying “you can not push me into this hole, it is not my grave,” and getting out defiantly, then falling into a hole again without any pushing; sometimes falling into a set of holes whose structures are predictable, ideological, and long dug, often falling into this set of structural and impersonal holes; sometimes falling into holes with other people, with other people, saying “this is not our mass grave, get out of this hole,” all together getting out of the hole together, hands and legs and arms and human ladders of each other to get out of the hole that is not the mass grave but that will only be gotten out of together; sometimes the willful-falling into a hole which is not the grave because it is easier than not falling into a hole really, but then once in it, realizing it is not the grave, getting out of the hole eventually; sometimes falling into a hole and languishing there for days, weeks, months, years, because while not the grave very difficult, still, to climb out of and you know after this hole there’s just another and another; sometimes surveying the landscape of holes and wishing for a high quality final hole; sometimes thinking of who has fallen into holes which are not graves but might be better if they were; sometimes too ardently contemplating the final hole while trying to avoid the provisional ones; sometimes dutifully falling and getting out, with perfect fortitude, saying “look at the skill and spirit with which I rise from that which resembles the grave but isn’t!”

~Anne Boyer, “This project was co-curated by the journalism nonprofit the Economic Hardship Reporting Project and its Puffin Story Innovation Fund.”  ~https://billmoyers.com/story/poetry-month-what-resembles-the-grave-but-isnt/

Eulogy

My Aunt Kato (Kikke) Pomer (van Leeuwen) passed away this week at age 101.  Kikke was a Freudian psychiatrist who began medical school in the Netherlands just before the Nazis invaded. She and her family escaped to the United States, She couldn’t gain admittance to medical school here because she was a woman, a Jew, and a refugee.  A family friend suggested that she meet Albert Einstein and ask him for a reference. She did and he did.  She graduated from Johns Hopkins Medical School and practiced in LA into her 90’s. Aunt Kikke inspired and encouraged me in nursing, advocacy, and in life. I’ll miss you.

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