The Heroic Patient

imagesSorena wore a black knit scarf around a thick neck, folds between scarf and skin. She came in with reflective smooth skin and frozen brow.  After many botox injections, she increasingly found it difficult to change her expression.  People often accused her of not caring about difficult things they were disclosing, and she realized the issue was, she couldn’t move her forehead.

She had a lot of empathy and was frustrated that people didn’t understand this.

We pulled at this idea for some time, recognizing a tension unplugged for her with each injection, a relief she experienced at visceral level. She just felt like she had to get her injections, driven toward them, like a bee toward the hive.

At some level it takes courage to get through the day.  She sees the effect.  Despite the fact that she should take a break from Botox, she can’t stop and this feels frightening.  She’s freezing her face.  It’s a terrible thing to know she has to stop something she is driven to do. It’s really hard. She’s trying to get through each day.

I told Sorena, “What you do every day to deal with this is brave. It’s harder. You have so much strength. You are doing it. You are getting through.”


I’m considering starting a podcast, “The Heroic Patient.” What do you think?

I want to interview Sorena and others with heroic life journey’s for you to discovery, connect with, increase awareness of, and appreciate.

The idea is to interview a world-community patient who will tell their “story.” It enters through the physician’s office doorway and increases transparency.

Many in our world community do not have a great understanding of what a physician nor a patient do in this exchange. You may think, “Well, everyone is a patient so at some level they do.” But:

  • How many, do you think actually go into a physician’s office?
  • How many variety of physicians does any one patient see in a lifespan?
  • How many get to tell their story?
  • How many of us hear each other’s stories?
  • How many of us understand how a physician solicits the details of a story so someone is “heard?”

If a patient were to learn the ‘behind the scenes,’ thought processes, interview techniques and analysis of the physician, would that be helpful to the patient?  Would the doctor learn from this dynamic interplay, and would the interview process evolve and grow from this? How would this effect stigma of all variety? Who knows?

What do you think? Is there a need for the “Heroic Patient” Podcast? If so, what are your recommendations and opinions?

The idea is that we are designed for connection. It’s friendly, remember? 🙂

Keep on!

Self-care Tip: Get transparent to get connected! Be a friend to yourself.

Get a clue – Community

Get a clue – Community

community

There are some things that must be experienced to have a clue.  If  you have never had a rebellious teenager, if you have never felt a full panic attack, if you haven’t grown old, been pregnant, been fat, if you’ve never, you won’t know.

If you have never been thin and beautiful, or large and virile, if you haven’t jumped from a plane and felt the free fall before the shoot, if you have never held a graduation diploma after working harder than you ever have, if you haven’t, you will never know.

So how can you?  How do we understand, give advice, and how can we be present.

There are common thoughts and common feelings, like the air we breath.  Rejection, hope, the intersection of thought with emotion with soul, our 6 senses; sight, hearing, touch, smell, taste, emotion, these we may be able to understand.  We may not be able to understand divorce but we will know rejection.

The sense of accomplishment, being the first in generations to graduate from college for example, is in each of us in our own context; picked for the team, sleep through night after days of preoccupied thought absorbing up the early morning minutes into hours, aware of self-value after chasing it over hills of bullying and comparisons.

Comparison is the thief of joy. – Roosevelt

There are going to be a lot of things that we will never understand in others.  But we will understand how to be present, stand beside someone, allow you to have your unique experience but although unique it is with commonality.   Everything we go through has commonality.  We are designed for just that point in time, for connection.  It is the pursuit of a lifetime.

Self-care tip:  Seek and engage in community.

Questions:  What is it that you feel alone in?  What do you believe is unrelatable?  Or Why not?  Please tell us your story.

Between Me and Thee While We Are Apart

apart

I woke up and thought, I love and am loved. I heard the birds. I recognized different songs. I know “our” birds outside our door. So grateful. The morning noises in the house, kids – This is what I pray about when I pray, “Be between me and thee while we are apart one from another.”

Every day takes us.  We go toward and away.  We connect and disconnect.  What do you hope stays close when you weave your pattern?  When you are taken into your day?

It may be a day.  It may be education.  It may be divorce, bankruptcy, or a change in condos that takes you.  It may be as simple as getting a haircut.

As hairstylist Jane said, “I see people come in here all day trying so hard to be unique, and I can’t believe that they don’t see just how un-unique they are.”  She was noticing that “unique” implies disconnect. Those of us in this condition may be grooming toward disconnectedness and missing that even the pursuit of this is inherently a connecting force between me and thee.

Let us acknowledge the connections, not fear them.

Back in the day, there was Laban and Jacob, who had shared space for many years.  When they separated, they artfully practiced connection.

Now therefore come thou, let us make a covenant, I and thou; and let it be for a witness between me and thee.And Jacob took a stone, and set it up for a pillar.And Jacob said unto his brethren, Gather stones; and they took stones, and made an heap: and they did eat there upon the heap….And Laban said, This heap is a witness between me and thee this day. And Mizpah (“watchtower”); for he said, The LORD watch between me and thee, when we are absent one from another.

Here, many centuries later, we remember our declaration of independence from Great Britain on July 4, 1776.  It is our watchtower of sorts, a time when we celebrate our freedom, beautifully crafted into what brings us together.  Freedom is not synonymous with disconnection.  It is the ability to choose, to move in and out, to live with boundaries that are made of ribbons rather than walls, to have distance and still remain close to where our heart is.

Questions:  What connections over Independence Day weekend are you celebrating?  Please speak out.  We need to hear you.

Self-Care Tip:  Let your uniqueness and freedom be a connecting force in your life.  Be a friend to yourself.

Baby Nurse, Day One

The very first day I put on my scrubs I knew they were the right fit. I  look forward to connecting with patients. I find it to be a true honor and privilege to care for them at a difficult time in their life. I care for patients in pain. I advocate for the mentally ill. Most importantly, I make it my priority to make people feel like they matter. 

Below is a guest post…a small piece of my own blog at  theloshow.weebly.com

Keeping with ‘Friend To Yourself’ tips, remember to believe in yourself enough to make the smallest difference in someone’s day. The rewards are shared. 

 

It was orientation day. My family had taken a flight out ahead of me to attend wedding ceremonies. I stayed behind, pressed my clothes, prepared notebooks, and set out for a day I had been waiting for, for a long time.
Approximately 50 eager nursing students sat behind desks and quieted as the lights were lowered. The instructor played a film, introducing us to our chosen field and wanted to fill our bodies with motivation and inspiration.
You will have an opportunity to care for people that do not have the means or capacity to ever repay you.’
The film ended and my eyes were heavy with tears. I tried to open them wide, hoping the air conditioning would dry them up before my neighbors noticed.
I was so very grateful. I was excited and hopeful. I would live out my life being so very proud of my job. I couldn’t wait.
I was terrified. I barely slept the night before. I sat in my car watching the clock, hoping time would barely pass by if I watched every minute tic. It was my first patient interaction. I was at a skilled nursing facility and I was to interview an elderly patient, and gain experience obtaining a thorough health history.

What was I so afraid of?

I didn’t know what to expect.
I watched “Fried Green Tomatoes” one too many times, and had images of a mean old lady screaming at me, throwing me out of her room, and cursing my ill experience while throwing donuts.
I delayed no more and walked in with confidence. My name badge and clip board screamed target practice. The employed nurses love to watch you squirm.
My instructor gave me my patient’s chart and told me to go to her room and introduce myself after I gathered all the appropriate data. Her binder was thick with life’s journey. Medications, disease processes, and lab work now defined her within those walls.
“Where’s the tab in here that tells me who comes to visit her? Who takes her to the beauty parlor and church? Who tells her Happy Mothers Day?”
No such tab existed.
I walked in her room. She shared it with another lonely woman that mumbled something as I passed the curtain.
She looked old. She looked confused. She looked happy to have someone to talk to.

“Ms. Walker, may I ask you some questions about your health?”

I worked my way down the list that my instructor prepared for me.
Question 11: Do you have any STD’s?
Question 12: How many partners have you been with?
Are you kidding me? What kind of sick bastard wrote these questions for a nursing home? Can I let this lonely old woman have some secrets and dignity please?
Formalities get in the way the sometimes.
I put the clipboard down and just started to talk. I asked her questions like we were sipping tea by the shore.
We laughed. She told me stories about her life that I couldn’t possibly fit onto any sheet of paper.
I knew I’d have to make up some of my material to turn my paper in for a grade. I didn’t care, and knew my instructor wouldn’t care either.

The video your institution showed me on my first day didn’t say anything about caring more about a clip board than a person.
It was about how I made someone feel that day. She wanted to talk to a person that genuinely cared about her answers.
I left that day laughing at myself for being so nervous. I chose this profession because it allowed me to be free of clipboards and formalities. It’s about making people feel good.
In the spirit of Nurse’s Week…Remember how the profession began. It’s about being at a person’s bedside when their loved ones cannot. It’s about giving your attention when someone needs it most.
Be that person, and protect the integrity of the initials that follow your name.

{Nurse Leslie}

What to do!? On-Line Physician Bullying.

I’ve been to this great APA meeting, great that is, because of the people!  Wow!  The fellow attendees, the exhibitors, the speakers – just, WOW.

I’m going to try to share content with you but it will take me time.

bully

For today, “Are You a Sitting Duck Online?,” reminded me of our earlier discussions on the doctor-patient relationship and a previous post, on July 11, 2012, that went like this:

Hello Friends.

Please tell me how I’m doing on this.  Just out,

Model Policy Guidelines for the Appropriate Use of Social Media and Social Networking in Medical Practice

This is important to me as I treasure both my medical practice and our community, connection, exchanges on-line.   I don’t want to do anything that jeopardizes either, nor the implication that if I did, that means I would have mistreated a patient.

Thank you for this, what I call, a “good problem” to have – the joy of medical practice and participation in social media/networking.

So many of you resonated with this and engaged.  I am still super grateful.  I’d love to continue with you in further discussion and with your comments!

For me, one of the many reasons I was so excited about this recent talk at the APA is because of the mucho online stuff connected to my name that affects my patients and the dynamics in our patient-doctor relationship.

In my practice, these are just a few sites that have wrong information (demographics) on me:

  • healthgrades.com
  • vitals.com
  • betterdoctor.com
  • ucomparehealthcare.com
  • insiderpages.com

They didn’t ask to clarify my demographics.  They didn’t ask me if I wanted them to become an on-line reference on my behalf.  They use my practice information to drive “eye-balls” to their site so they can get advertizing money and more.  They impose incorrect information about my practice, knowing that in so doing, I will be pressed, (I call it bullied,) into contacting them with my correct information.

If I don’t do this expensive effort, (money, time, emotional expense – all in limited supply, to correct what they post incorrectly,) patients will continue to tell me that they couldn’t find my contact information.  When they Google me, instead of my website coming up, these other sham pages pop up.

Some patients call dead numbers or even drive to incorrect locations to find treatment.  Instead of whomever is behind these websites being held responsible, the medical providers are.

These are the notes I took from my colleagues, as I heard them say.

Unfortunately, I was late to the meeting so I missed two of the four speakers.  Even so, this is worth it.


Dinah Miller M.D., Author of “Shrink Rap” and writing regularly for Clinical Psychiatry News.

Dr. Miller told us about the difficulty of “patient” (or nonpatient, i.e., sham-patient) reviews online.

Who can review the physicians?

  • your patients
  • Friends and lovers
  • enemies
  • trolls – a negative internet stalker

Every practitioner has an idea that they are a pretty good doctor.  So it isn’t easy for any of us to hear otherwise ;).  After getting unsolicited feedback from a person who took the time to write a comment on a site that listed her, a site that listed her profile without asking her, Dr. Miller chose not to play the victim.  She decided to call “Health Grades,” and with her persistence, they took her information down.

On “Vitals” – she got an answering machine with a person’s voice mail and no name and number.  So she called CEO, Mitch, who stated she wasn’t able to take her profile down.  She didn’t ask to open herself up to trolls.

Dr. Miller asks, what shall we do, as physicians?

  • do nothing
  • write a response
  • try to call the company

There are many whose livelihoods depend on public opinion.  For example, waitresses/waiters – many lose their jobs if they get even one negative reviews.

The practitioners in the group responded with resonance with Dr. Miller’s ideas.  They also had thoughts that if left alone, the democratic process would win out over time, truth would come out and such.  (Maybe the nearby statue of Liberty played into our thoughts :).)


Paul S. Appelbaum, MD, Dollard Professor of Psychiatry, Medicine & Law, Columbia University

Principles that Might help physicians Identify Constructive Responses

  • Responses should be Effective
  • Practical
  • Compatible with medical ethics
  • Positive rather than negative consequences

Problematic Responses by Individual Physicians

  • Request removal by website – typically declined.  Saying you’re writing a public article on it might help.
  • Contact the patient who wrote a negative response to request removal – Patient not likely to remove response, many patients post anonymously, most websites won’t allow patients to remove them
  • Flood site with fake positive reviews – deceptive, embarrassing if discovered, ? inducing a person to rely on a statement that may be used to their detriment (fraud)
  • sue patient for libel – identify patient might be difficulty, people have a right to their opinions – would have to prove statements untruthful and not merely opinion, $$ in money/time/and emotion

Encourage Satisfied Patients to Post Reviews?  We could refer to a firm to do this.  $$

Some sites, similar to “Vitals” offer the option to the practitioner to respond to a posted review.

Negative Reviews:

If we do respond – how?  We don’t want to come across arrogant or insulting.  We fear violating patient-doctor confidentiality. In the end, we recognize we don’t have the last word.  We may respond with a soft word of concern.  “If you would call my office, I’d be happy to schedule at no fee to speak with you about this and see if I can help.”

Can Patient Reviews Be Controlled?  There once was a company that tried this.  “Medical Justice” developed a form that gives control over of copyright of all reviews to MD.  – Didn’t work.  See article, “Company tries to stifle online reviews with patient ‘gag orders’.”

Another idea is that medical practitioners help themselves by coming together to develop an internet ombudsman.  This would be a medical/mental health professional not involved in care of patient.

  • Independent (unrelated party) investigation of physician about the case.  A successful investigation may give a third party opinion.  There’d have to be a reason for the world to trust this opinion.

It is difficult for healthcare professionals to protect themselves from inaccurate complaints about their care.

Positive Reviews

Does it put undue pressure on the patients?

A sign in waiting room perhaps.  Make the information available w/o practitioner knowing if they have or have not commented.

There is a dissonance between the position of being a business person that says we must practice democratically and compete fiscally, yet stay in congruence with what tradition holds us to.


The issues addressed in the talk weren’t specifically about being bullied by sham-websites, but it included that idea, along with other difficulties physicians are experiencing in the rapid transition of 3000 years of tradition as a healthcare providers to spending the majority of their time serving patients first to now, the reckless $ burden of running a media vulnerable business.

In the practice of psychiatry, a traditionally extreme-private practice, this is dissonant to many.

Q:  How do we treat the extremely delicate practice of psychiatry as a business when we are held to currently minimally defended standards like this?  Please speak out and let it flow!  We need to hear from you!  …and, Keep on.

Self-Care Tip:  Deal with internet sham-sites and reviews in a method that is consistent with Me, and temperament, while doing the least damage to oneself. It will be better for oneself as well as others.

 

Join us at, Seams of Gold!

The University Surgery Center, Department of ECT, and myself will be joining our community at Seams of Gold, where we will share life changing stories of ​resilience, restoration and hope.

Thursday, May 1, 2014  

​6:30 pm to 9:00 pm, Doors open @ 6:00 pm

“Event is Free”

PLEASE COME!  🙂

 

A Father’s Lament  contopolos

On May 29, 2010, we lost our 26 year old son, Nick, after a 14 year struggle to find long term, affordable, quality recovery and care from mental illness and addiction. During Nick’s brief life, both he and those of us who loved him were left with a fatal absence of hope while we struggled, as do many others, to navigate our society’s haphazard, fragmented “system of care”.

Months after Nick had died, I recalled a former broadcast on CNN with a woman who had suffered enormous loss after Hurricane Katrina. The interviewer was asking this lady how, in the face of such loss, she was able to continue on and now help others. She said, “at some point, I stopped asking “why me” and began asking “what now”. That statement, in conjunction with an honest admission from my pastor that “during Nick’s life, he had absolutely no idea how to understand nor how to help us”, was what led to the “what now” of Seams of Gold community service events.

Seams of Gold is named after the ancient pottery art of “Kintsugi”. In this ancient art form of Kintsugi we find the inspiration in how we respond to the fragile beauty that surrounds us.”

Seams of Gold is a FREE multi faith, multi denominational community service event. All are invited.

We are asking that all who have been affected by mental illness and addiction as well as those who love and serve them, to come and be inspired, informed, educated and equipped. Join us, as through the prism of our tears, we pilgrimage together towards a “better day” of empathy, compassion and care for those who suffer.

Recovery is Powerful, it is Possible and it is Beautiful! 

                                                                                                                                  –  Jim Contopulos

 

The beauty of the Santa Rosa Ecological Reserve in southern California provides the backdrop for a father’s lament. Seams of Gold founder Jim Contopulos invites the viewer to join him on a journey as he reflects upon losing his beautiful son to addiction and mental illness.

“Birthed from Pain… Inspired by Art”

                                                                   

http://www.youtube.com/watch?v=VGZ1ESOlvbM

Be The Person You Would Like to be Loved By

wolf

 

Guest Post from Melissa Lesofski.

Melissa is a single, professional, and educated woman who is speaking out about what it is for her, unmarried.

“I don’t think we should live up to a list of what others think we should be.  Nor a list from a person we are dating. I think we should make our own and use it as our guide. 

Make a list of all of the qualities that we want in a spouse (because ultimately that is the purpose of dating, to discover what qualities are important to Me).  Should s/he be funny? Pretty? Christian? Confident? Etc etc.  Then go back through that list and hold ourselves to the same standard.  My thoughts were when I first did this was that I was never going to find who I wanted to be with if I didn’t hold myself to the same standards that I wanted from my partner….what if the person I end up with is making a list too?”

Does this not relate to us in any station?  Be the person we want to be loved by.  It sounds awfully familiar to us starting with Me, where everything does, where freedom is.  Me, the wonderland where we actually have power to make changes.  Me, to who whom we give, and then actually have something to give to others.

Question:  How has growing your list improved your connections?  What is on your list?  Please tell us your story.

Self-Care Tip:  Write a list of what you would like to do in your life to be the person you would like to be loved by.  Be a friend to yourself.