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.

Stay Awake! to sleep well

15592094211_cf638f430a

(Whomever it is that originated this stinking hilarious picture and quote, thank you!)

The glass half empty view on sleep and age:

When you are a child, you don’t want to sleep. When you are a parent, you could if you would, and you want to, but there are the kids. When you are fortunate enough to grow old, you want to, don’t have kids, but can’t.

 

The National Sleep Foundation Recommends:

Preschoolers (3-5): Sleep range widened by one hour to 10-13 hours (previously it was 11-13) School age children (6-13): Sleep range widened by one hour to 9-11 hours (previously it was 10-11) Teenagers (14-17): Sleep range widened by one hour to 8-10 hours (previously it was 8.5-9.5)

Younger adults (18-25): Sleep range is 7-9 hours (new age category) Adults (26-64): Sleep range did not change and remains 7-9 hours. Older adults (65+): Sleep range is 7-8 hours (new age category)

Should-a, could-a, would-a, right?

“The amount of sleep required by the average person is five minutes more.”

~Wilson Mizner

One thing that gets left out of most sleep books (um, did I include it in my book??) and sleep talks, is how to be awake. Because, the opposite of sleep is not just slogging around in a haze. It is alertness, attention, and memory.

Sort of abandon sleep hygiene for a while. Give yourself a break from the disappointment. And then be firm on the effort of daytime alertness.

Practically, all of this means reading, writing, talking, and moving. No nap unless before noon. The body requires all these to be alert. And vice-versa for alertness.

This is where I additionally bring in the concept of a stimulating medication such as Modafinil. Don’t confuse this with taking caffeine. Caffeine is metabolized way to fast to be helpful in this regard. There are others one may discuss with their treatment provider.

Self-care tip: Get awake, really awake, during the day to sleep well at night.

Questions:

What is your daytime energy like? Alertness, attention, and memory? Do you sleep well in relation to this?

Please tell your story. Keep on.

Best Self-Care Ever! StepBet

move-it

Hello Friends!

This post is a simple plug for one of the best things I’ve ever done for myself.

You have heard me talk about neural grooves and changing habits such as those that are not friendly to Me. In a post, “Pay a Dollar,” I said,

When you feel trapped by your own self, get friendly by remembering this.  You’re mistaken.  You’re talking about a brain groove, not a vampire.  It’s not hopeless.  Not much more, not much less than what it is.  A groove can be abandoned.  New paths can be made and when the stressor hits next time, you will have a longer moment to decide on which behavior to play.  You will have a choice and you will realize more often that you are not trapped by what you thought; you are not hopeless and ugly.

So how long does it take to form a habit? Or break one? To change neural grooves in the brain. Many say, twenty-one days. Others say, you have to do it every day for a year.

This game, StepBet, is designed to get us moving as a habit. I’m loving it. I invite all my patients to join me. My team. My friends! I’m not leaving you out! Smile. Check it out.

You put $40 up that says you will walk a determined number of steps every day, except one, each week for six weeks. If you miss a day, you lose your forty bucks. Some days, I start thinking, …”It’s just forty dollars…(whine – a long high pitched complaining cry.)” The money from those who don’t make it to six weeks goes into a kitty and later dispersed amongst all those who did. Yah! So fun!

Please join me, and let me know how it goes for you.

How StepBet Works

1. Get Your Goals

2. Place Your Bet

3. Step it Up!

Question: What do you do to be kind to yourself, habitually? Please tell your story!

Keep on!

Live Imperfectly, Dad is dying, and I Have no Power.

wilted flower

Living with someone like tomorrow might be their last is much harder to do when it is actually the case.

My dad told me, after my nine-year old niece died, that a parent should never outlive their child.  When I look at my own children, I know that is true. But with my parents aging process, my dad’s long and difficult past twenty years, and now near end of life condition, I just don’t know how I’d order things, if I could, between us.

When God, (Morgan Freedman,) told the complaining Bruce Nolan, (Jim Carey,) that he could have all of his powers, the audience of “Bruce Almighty” projected both a positive transference and a schadenfreude. Bringing the viewer into the character’s identity is every actor’s aspiration. And we went there. Up. “Yay! Bruce can answer everyone’s prayers with a ‘yes’!” And then down, down, down. The multidimensional disaster’s created by misplaced power, power without wisdom, love, or altruism, was just painful to watch. Power does not God make.

My Dad is dying. Not likely from cancer. Not likely from a failed liver, floppy heart, or baggy lungs. He is just dying.  He’s confused on and off. His spine is failing so he can barely walk. He has repeated blood clots. And he’s recently risen out of a deep depression. Rison right into a confused grandiosity, full awkward, awkward like pants ripping when you bend over type of awkward, and inter-galactic soaring thought content.

The first “word” Dad played in Scrabble last week was “vl.” He explained, “vl, like vowel.” …Okay? For thirty minutes Dad played without playing one actual word. I started crying when he finally stopped connecting letters. The letters floated on the board like California will look after the “big earthquake” finally hits and it falls into the ocean. (We’ve all been waiting.) Now he tells me he called and spoke to Obama and Magic Johnson. Reference point. This is bizarre and out of his character.  He’s been delirious with waxing and waning level of consciousness for a month and a half. He’s dying. Sheez.

Living well while Dad dies is not easy. Would I use power to restore him to his healthy twelve-year old self, like Elli’s seventy-year old grandfather did, in “The Fourteenth Goldfish,” by Jennifer L. Holm? Would I use power to change the order of death? Would I do anything more or less or different, while my dad is dying?

Power does not God make. I am not God. (Ta-da! It’s out of the box now.) But both of us are watching Dad die. I trust that She, with the power, wisdom, love, and altruism, is living with him well, during this time.

In Life and Other Near-Death Experiences, by Camille Pagán, Libby Miller decides to live, just live, rather than die perfectly.  And maybe that’s my answer to this unasked question. Living with someone dying will not be perfect for me.

Self-Care Tip: Live imperfectly to live well, like this is your, his, or her last day.

Question: How do you “live well?”

Keep on!

I Can’t Make Friends – Anxiety

voyagerMr. Clark stopped talking and walked to the ringing rotary phone on the wall.

We were experts, as 7th graders, in anticipating what phone calls would be about. I’m surprised we never got around to making bets. I missed my chance to be a bookie. When the phone rang, it could mean someone was in trouble and had to go to the principle’s office.

Everyone was quiet waiting to see if their name would be called. No. That wasn’t it.

It could mean there was a school announcement. It could mean there was something wrong with our bathroom plumbing! But it had never meant that a space ship had exploded. Seventh grade was not the time to grasp what this meant. If we couldn’t grasp it, if our perceptions were unable to see it, then it could not actually exist. Right?

We kids had other things we were trying to sort out. Boys and girls. Getting your period or facial hair. Zits. What Melissa said about you when you thought she was your friend. These were space occupying in our minds. There was little room for understanding that this phone call announced the end of 8 lives, a billion-plus dollars blew up, nor especially not what it meant politically! Spouses and children, watching and cheering in the bleachers live, front row and center, witnessed as their own individual loved one exploded into tiny particles.

Mr. Clark walked, white-faced and perspiring, to the radio, asked for silence over the hum that had built up, and we heard. The challenger, the 8 people aboard (one of them a teacher), in 1986, was gone.

A spaceship exploding is about what anxiety feels like. That may sound extreme but it is the truth. And those who have experienced it, as if their were going to come apart, will do anything not to experience it again. This urge to avoid anxiety expresses itself in emotions and behaviors. But often, when anxiety doesn’t reach a full explosion, the afflicted individual doesn’t even know that they are sensing the urge to avoid, nor how they are responding to this avoidance. The afflicted person and those who know him get think that these medical symptoms are actually the afflicted’s personality. “It’s just the way I am.” 

You may be someone who feels inner congruence with decisions. By temperament, you like closure! But even so, against your own hard-wiring, you find that you have trouble making decisions. How you talk is driven by indecision. You’re couching what you say, being careful. Your self-esteem erodes.

Manuel had some similarities to this, but also, on top of his medical condition with avoidance symptoms, his personality was one that got energy from being alone. That doesn’t mean Manuel didn’t like people or interpersonal relationships. It just means that he got energy from being alone. And he did stay alone most of the time. When around others, the energy poured out of him like lemonade through an open spigot. However, he wanted others. Being lonely was not his goal. But there he was, more energy when alone combined with a thrumming buzz of nerves when he tried to make friends, when he tried to date, or when he was approached by someone spontaneously in public who asked the time.

Fudge! She only wanted to know the Blinking! Time! he screamed inside.

Manuel had some friends with whom he was deeply bonded to by shared experiences. But he had gone on to college and his friends had not. It was niggling in whispering thoughts that he might still be hanging out with them because they didn’t disrupt him. Because he came apart. Terror, like a spaceship exploding in the atmosphere after take-off, filled his perceptions, if he tried to hang out with anyone else! And Manuel didn’t like thinking about his friendships that way. They lost value when tattered by that persistent wind. Nor did Manuel like thinking about himself as someone who couldn’t get other friends if he wanted to. As someone who would use the faithful. Friendship by default? No. He felt shame just thinking it and he knew it’s falseness. In his most essential self, he knew he loved them for more than proximity. But he really didn’t know if he was weak. It was a possibility. And besides! What girl would want a weak man?

People with anxiety have barriers to any number of connections in life, like coming up to an energy force field we can’t see. There are interpersonal connections we might have had, but never initiated or explored because the anxiety held you in place. This is what anxiety does to us. Anxiety takes away our freedom to choose. And as the consequences and fruition play out, we live out the related losses.

Manuel came to me because, “Mom told me I better come and talk to someone.” Mom was fed-up with his isolation, hours of video games, and she had noticed that he was spending even less time with his childhood friends. 

Talking to Manuel, unearthing these patterns in his life, his insight grew a bit. But once he looked at anxiety, even with a sideways glance, which was anxiety provoking in itself, he came up against the need to decide,

Should I treat?

Deciding to treat is a decision to make between the patient, perhaps including their support system, and their treating clinician. When there isn’t a clear answer though, like a blood test that shows the vitamin D levels are low, we respond with vitamin D replacement therapy, but in these areas of diagnosis, it often feels nebulus to the patients on what to do.

When the decision doesn’t have clear form, like an undefined space, go toward the data. You may trust your clinician to know that data integrate it into all the information that goes toward deciding on treatment. Or you may choose to spend time researching and evaluating the data on your own and then go forward. Either way, if you stay with what you’ve been doing, you will remain ill and the illness will progress over time.

So either way, going with the data, either via your clinicians recommendations directly, or indirectly. Accept treatment. In fact, run toward it! You will have a much higher quality of life. And… those around you will too.

Self-care tip – Go toward the data!

Questions: What had influenced your choices in treatment or not to treat? Please tell us your story. We need your voice!

NAMI: National Alliance on Mental Illness

Hello Friends,

I’m enjoying this all too fast passing time at the APA annual meeting in Toronto. What I am most enjoying is the education, the community and connection with new and old friends, and the reminder of what this is all about – you and I. In honor of us, I’m “pressing” this excellent post from our national advocators and stigma-fighters at NAMI.

NAMI: National Alliance on Mental Illness | NAMI: The National Alliance on Mental Illness.

Check it out and let me know your thoughts. How does this resonate, or not, with you. We need to hear!

Be well and keep on!

Q

Handout – How to Talk to a Psychiatric Patient.

duck

Finished the CME talk I did last week and thought, you might find some use for it.

I’ve received bad press many times for not being, in so many words, legit or academic enough. Check out the comments on my ECT book on Amazon.com for examples :). Maybe this one leaning into that bosom of greatness will turn public opinion. (Sneeze.)

…Formatting has been a real bear.

As you go through it, please talk out. Tell me what you think. I may do it again. (That’s right. I’m not afraid to threaten. You heard me.)

Keep on, Friends.

How to Speak to a Psychiatric Patient

Introduction:

  • You quack like a duck, avert your gaze, and then hold a fetal position. It’s good for core.
  • Be sure to carry your portable speakers playing zen chakra music in the background.
  • Offer cigarettes.
  • Bring a healthy white chicken to sacrifice over their chest for the exorcism.
  • Introduce yourself with an alias name. Hopefully a superhero.

This is a fail safe method of communication to pretty much hit all the difficult misperceptions we are contending with in psychiatry – demonic possession, shame, violent tendencies, weak character, and poor moral choices.

I’d like to give you the 1,2,3’s on how to talk to psychiatric patients. But as I researched this topic, it became apparent that this wasn’t the direction for us to go in. You have better algorithms, systems, and manuals based on research for this in your own departments. I know you have people who are specialists in the administrative side of things.

For us today, we are going to turn rather toward the innuendos that interplay in communication between caregiver and patient.

The is the first place for us to start, let’s just talk about it here.

What is it like for you to talk with a psychiatric patient?

  • Identifying Me in the mental health treatment paradigm.
  • Not implying that we have skills but no awareness. We are just deliberately putting the practitioner into “it.”
  • It’s a “how to,” but first we need to address our personal limitations.
  • Why do we have these limitations?

I: Clinician/Caregiver barriers

II: Patient barriers

  • What’s over-scored is that the problem is on the patient’s side. The patient is sick after all. We agree. Brain illness and all that.
  • Even so, what is underscored is our side. And that’s what this talk is going to be about.
  • We want to focus on our own thoughts about this. What it says about ourselves. Who am I if my identity changes with how I feel and behave? etc.
  • And then, how do we respond to that?

III: Understand Personal Biases – Likes and dislikes

  • Figure out where we are at. What makes it difficult to talk to patients?
  • What are the common myths? Get the myths out there. 
  • Some reasons are true and not myths.
  • What are some personal biases about working with psychiatric patients?
  • (Bias means – likes and dislikes)

IV:   Define Stigma

1. Prejudice – Attitudes, feelings/emotions (Amygdala)

2. Discrimination – attitudes lead to actions

1: Prejudice

  • Weakness of character
  • Supernatural explanations. (Statistically significant association with superstitions.)
  • The word “patient” not talking about disease, perhaps, but rather about character – something of moral value.
  • Religion. (But only a few believe that spiritual leaders can play a role in treatment! People don’t relate stigma issues to biology.  i.e., It is not biology or medicine that increase the problems, but belief that the person has a personal weakness as demonstrated by their behaviors – A conflict in beliefs, or prejudice, worth exploring.) (…But where do emotions and behaviors come from? The Brain. Thinking they come from a cloud by day or a fire by night fall into the category of prejudice.)
  • Time consumption.
  • Danger
  • Treatment skepticism – no recovery, there’s less hope for them
  • Punishment from God for evildoers.
  • Demonic possession
  • I am lessened by my affiliation with the mentally ill

What are our fears? Fears are an emotion and/or attitude…

  • Brings into play, how do we identify ourselves? …And that part of us that remains even when we are in a changing body (identity).  I call this, “Me,” with a capital “M.”
  • Think about this when we look at responses to prejudice; “discrimination.”

Caregiver stigma – “self-stigma” comes when we internalize public attitudes and turn it onto ourselves

  • We perceive stigma from others due to those we care for.
  • Shame/Embarrassment
  • Fears of what it says about ourselves

2. Discrimination – How we act on those prejudices.

Example:

  • Take “Caregivers Stigma.” We can bring this into our work place as well, from what we glean in our community.
  • We avoid patients who make us feel uncomfortable.

Who has Stigma?

Everyone.  It is in our community, including we who serve and are involved in mental healthcare services.

1. Patient

2. Clinician

Patient

Example: Mr. Whineheart misses his medications approximately three times a week due to logistical reasons. However, we know that Mr. Whineheart has had a long history of difficulty with treatment noncompliance. As we explore further, we discover that Mr. Whineheart dislikes taking medication. It makes him feel like he is weak. Not taking his medication is Mr. Whineheart’s discriminating behaviors against himself in response to his prejudices, (emotions and attitudes of shame.)

Clinician

Examples:

  • Refusing care for psychiatric patients.
  • Starting with Questions:  How do we respond to challenges to our identity? When our identity’s confronted by seeing our patients with psychiatric illnesses, our patients who demonstrate changes in their emotions and behaviors since brain illness set in, we ask, what part of us remains even when we are in a changing body and mind (identity)? How do we respond?
  • If it is positive, it is not discriminatory toward ourselves. If it is negative, it is discriminatory to ourselves and inevitably to others.

V: What are the barriers to talking with psychiatric patients?

  • The tension is when the patient and the clinician’s personal views, life stories come together.
  • Where those thoughts collide is where the tension is.
  • That’s where the barrier is.
  • Once this tension is resolved it’s easier to go into action

VI: Why bother about Stigma?

Because:

  • Stigma is a feature and a cause of health problems. (Both clinician and patient)
  • Belief —> action.
  • i.e., In caregivers, emotional toll can be devastating – may lead to injury or illness of caregiver

Because It Affects:

  • How we speak to psychiatric patients. (Human Value.)
  • Choices in our clinician-patient relationship.
  • Perceived quality of work experience.
  • “Me” and QOL (Quality of Life).

Because It Engenders:

  • Social distance. (Comes from fear. But connection is healthy for “Me.”)
  • We are robbed of opportunities (Think – Agendas, Connection, etc.)
  • Avoidance. (Comes from belief of danger.)
  • Treatment skepticism (What is “recovery” anyway?)
  • We need to ask, “What are our treatment goals?” (Agenda)
  • Frustration and anger, negative emotions.

Responsibility:

  • There’s an unequal level of power (Us v. patients/clients) – inherently increases our responsibility toward others to overcome this.
  • What about us?
  • Identify that. Then fear can become strength. Presence. Actions of discrimination change to actions of hope.

VII:  Agendas

  • Part of our “belief systems.”
  • Exposing agendas, leads us toward action. 
  • Just like exposing prejudice leads to actions of hope.
  • Just like starting with Me leads to actions of accountability and presence.

1.  Traditional agendas in the medical model:

a.  Serve altruistically.

  • Saying we don’t have an agenda is grossly dishonest.
  • Maybe we are uncomfortable speaking about agendas because it creates tension with the classic view that practicing medicine is supposed to be Altruistic.  Altruism is just another “pressure.”
  • It’s a perfectionistic model. It’s false. To ally ourselves with it is a mistake. Brings discriminatory behaviors toward ourselves, driven by prejudices of shame.

b.   Healing

  • The paradigm that never fits for psychiatry – cure, getting rid of something bad, not joining it and integrating it. (Presence.)
  • Can’t stop disease even with appropriate treatment – Treatment agenda changes to center around QOL experience rather than cure.
  • Caregivers in long-term care are not looking for recovery in their patients.

c.  Serve patient (Service)

2.  Traditional agendas of business

  • $, Profit

3.  Quality of work experience

  • Not only do we get money, we get other stuff (biopsychosocial needs).  That affects how we talk to people.

VII:  Solutions

1.  Start with Me. Own that we have stigma: prejudice and discrimination.

  1.  Protest
  2.  Put own selves in the way of these treatments
  3.  Rely on evidence (biomedical conceptualization or education), not ideation (prejudice, emotions, religious causation…)
  4.  Pay more attention to emotions, senses, thoughts.
  5.  Reconsider your agendas e.g., Not necessarily recovery but rather QOL
  6.  Engender a culture of expectation (ex: We expect ourselves and each other to participate…)

2. “Contact based” solutions.

  • The impact of experience and exposure
  • Best treatment is contact with the mentally ill vs. Educational approaches, which, although are helpful, are not as effective. Nor are psychotherapeutic approaches.
  • Maybe we overemphasize education in our culture and undervalue human relationships.
  • We see this anecdotally, but also notice that nearly all interventions studied, (multiple metanalysis, etc.,) used educational interventions primarily.

3. Education (Still important and demonstrates degree of efficacy)

4. Collaborate

  • Involve family

5. Collaborate

  • Involve community, Partnerships with community resources

Conclusion

  1. Start with at Me.
  2. More contact and exposure to people with mental illness.
  3. More education.
  4. More collaboration.

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