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.

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!

Questions From Someone Important – On ECT

Hi. I was hoping I could ask you a couple questions about ECT for a research paper I am writing.

  1. How do you address the issue of cognitive and memory impairments?
  2. What are your top 3 reasons for being an advocate for ECT?
  3. What are the differences between ‘old’ ECT and ‘modern’ ECT?
My thesis statement is:
Although there are many different treatments for Bipolar Disorder, Electroconvulsive Therapy (ECT) has proven to be the most effective therapy, treating both mania and depression.
Thanks in advance,
Priscilla

Good morning Friends!

What would you answer to Priscilla?  Do you have personal experience with ECT, primary, secondary, etc? Where did your beliefs and attitudes about ECT come from?

Last week I almost lost control of my functions when my patient told me about his sister’s comments.

Frank, my patient, had called up his sister, asking her to help drive him to ECT in the morning. Frank’s sister hadn’t even known Frank was getting ECT. She was alarmed but didn’t say anything until they were in the car together, a California dawn and sleep in their eyes for context.

Is this for real Frank? Where are we really going?

Frank was straight faced in his pragmatic style.

She thought maybe we were either going to doughnuts or the devil.
I don’t want this to sound bad or anything, but you know how people go, like to TJ, Mexico, to get some sort of cancer therapy that makes their skin fall off, that’s what she thought. Or we were going to get the psychiatry equivalent of a coat-hanger abortion in someone’s garage.
Don’t judge me for peeing a little.

One of my secretly favorite comedians, Amy Schumer, has a way of taking the worst negative biases in our community and denuding them w/o remorse. She did this with “rape.” The internet exploded that, demonstrating that sure enough, our community doesn’t get it. We don’t understand what rape is!

Then Schumer did it again with women. The idea is that we lose value because of age. Sure enough, the world started talking. For example, a few someone’s noticed when Maggie Gyllenhall was told she was too old, at 37, to get the role of a 55 year-old man’s girlfriend.

I wish Schumer would do a skit on electroconvulsive therapy, (“ECT.”) I wonder what she’d play with. Because there is awesome material there!

First introduction to ECT, some people wonder where the leather straps are. Dr. Schumer, in her white coat would say, “Oops! I forgot them at home.”

And what do you wear in an operating room, really? Scrubs for spine surgery. Scrubs for gastrointestinal procedures. And psychiatry?

Dr. Schumer, psychiatrist: “I’m a surgeon!”

Funny how you celebrate things you would otherwise not…”Hey, what a great seizure!” (High fives all around.) Never Say say, “I just push a button.”

Adding to the list of things not to say in the operating room (“OR”):

  • My Bad
  • Who is this?
  • Whoops!
  • I hope this works

ECT patient: “I want to be the placebo guy.” Patient (an older man:) Lifted his head, slightly, after the procedure was over, and asks, “Can I still have children?”

Patient: Being wheeled out of the OR (operating room) on the gurney, she stares up at the ceiling and mutters, “I can see why I need a driver.”two steering wheelsHow do People learn how to drive a gurney?! I just touch the thing and it’s like solid objects appear everywhere. The patients get nervous. One said, “Doctor, there can’t be two steering wheels.”

Dr. Schumer: “I want to reduce staff work load, and since I’ve proven to be an unsafe driver of gurneys… I now control the Tylenol. I am a physician and I hate it when people say that I just ‘push a button.’ They can hardly trust me not to shock myself…. But the Tylenol, the Tylenol is mine!”

Anesthesia: “Versed isn’t really an abused street drug—if you have a good time using it. You don’t remember anything anyway.”

Dr. Schumer: “Yes, I’ve put vaseline on my nipples to help with chaffing.” (Patient: In his ‘twilight’ sleep…we thought, bursts out laughing.) Dr. Schumer: “Yeah, try and not picture your doctor in pasties… It’s not good for your healing.”

Patient to Dr. Schumer: “You’re pretty good at this.” Dr. Schumer:I’ve watched this on the Discovery Channel.” (Then, all of a sudden, she realized “I am not perfect. Such a shame.”) Dr. Schumer: “I really don’t do a whole lot in the OR… In fact, can we just get another gurney in here so that I can lie down?”

Cheap medical service, do you really want that?

Sweaty and Worried – Generalized Anxiety Disorder

Hank had to sing an Italian song for his tests.

His music instructor did not believe that he had been practicing two hours a day. When Hank asked his voice teacher to sign off on those hours, his voice teacher still did not believe him.  He had nothing to feel shame about.  “Then why did I?” Hank wondered.  Card in his hand, signed off, Hank resentfully kicked at the rocks covering the path back to administration.

Looking out over mostly empty hard wooden seating in the music hall, Hank slaughtered the song. Even so, it was still the best performance he had ever done.  His father was there in his stained tie and largeness.  His mother in her too many colors, smiled loudly.  She was tone deaf.  Frank’s shame followed him.  He had practiced.

Hank’s older brother dressed in silk shirts, a big gold medallion, a tuft of hair coming out of his barely suppressed neckline.  When they prayed, Hank heard these smacking noises, and thought, “Pray for my nausea,” hoping they would stop kissing.  His brother always had a girlfriend.  The girlfriend was at his recital.  There were noises.

Everyone was scared Hank’s brother would marry too early and maybe marry for the wrong reasons.  His dad was always like, “Wait, wait!” But with Angie, Dad was like, “Get married now!”  Angie was the best in a long line of noisy kissers.

They asked Hank to sing at their wedding.  They insisted.  His brother, his brother’s girlfriend, his parents – they spoke in harmonics all at once.  “Hank!  You sing like Sinatra! Don’t worry so much! You should sing!”

In a rented tuxedo, Hank sang.  The mike didn’t work.  Aunt Augusta told him to sing louder.  Aunt Augusta didn’t hear well, even if there was a mike.  Hank forgot his words and had to start over.  Sweat filled his shirt and he thought about the dry cleaning.

Hank has never had a girlfriend and he is almost twenty-five.  Standing in front of all those people without the song lyrics, the only words that came to him were, “I am like a sweaty doorknob.”  His brother, facing a battle of his own between his ruffled shirt and his manliness, did not help.  Hank thought, “He is probably waiting for prayer so he can start kissing.”

The second year of college, Hank got caught with pornography.  “Hank!” His mother pulled his ear, towing him while she shook the fisted magazine through the house.  He didn’t listen to her words.  He only listened to his memories asking his music instructor for his signature. Was it as bad as the wedding?  Talking to Sarah or walking across the campus greens were bad. He fingered his worries like a beaded necklace.  He worried a lot.  Worry and shame.  He wished he could have a girlfriend but thought that was a hopeless cause.  Hank was already planning on buying a new magazine before Mom had thrown that one in the garbage.

It is so easy to explain away why Hank is the way he is.  We have heard enough to say, his parents, his brother, his isolation, his treatment from teachers.  We can use these to say, “Who wouldn’t be anxious, worried, down, and isolated, when going through these experiences?”  If we did though, we might miss the generalized anxiety disorder, the medical.  Conceptualizing the medical in this way can be so difficult.  We could call it, “the un-reasons why” we feel and do what we do.  So then we don’t have to deny it.  The un-reasons why don’t have to make sense.  They are un-reasons, after all. We don’t have to deny them by our inherent need to point at the cause and effect, or explain into uselessness the reason we are this way.  We don’t have avoid eye contact just because they can’t be seen.

Hank, like so many of us, is included in the statistics that generalized anxiety disorder, or GAD, is one of the top reasons why we don’t get intimate with others.  The anxiety is distracting.  It isolates us.  It preoccupies our thoughts.  It fills us with self-doubt and develops over time, almost inevitably if not treated, into depression.

Getting by with something as subtle as GAD, or other brain illnesses such as degrees of depression, have potentially devastating effects on what occupies our life-line.  The moments that construct the overall devastation may be explained away by one injustice or another, by what are thought to be personality quirks, or simply by neglect of self. But they could be different. The moments, the otherwise same moments, could be different.  The same rude, distrustful teacher, the rejection from Sarah, the quiet mike – those moments could have been different with the same guy, different only in his brain health.  Brain health makes the sameness different.

As Nancy A. Payne, of New York University (NYU) Silver School of Social Work, wrote about treating brain illness,

“There is tremendous satisfaction gained from facilitating the transition from profound illness to equally profound recovery.”

The life-line takes courage to look at.  It takes courage to believe that the effect of our negative thoughts and distorted perceptions could indeed have that pervasively profound effect.  It takes courage to consider that medical treatment can likewise, profoundly change our quality of life.

Hank tried to take his life with a rope before we met.  I’m so glad he didn’t break his neck or die.  He is now well treated and his disease is in remission.  His life-line has changed.Bo-J0zyIEAA_Y3h

Questions:  What are you brave with?  What do you spend your courage on?  Tell us about it.  We gain so much from community and connection.  Keep on.

Self-Care Tip:  Look also at the un-reasons, at the reasons less apparent, at what isn’t seen – look  into those reasons of why we feel and do.

Know You Are Blessed

ulysses

 

Think of the worst of us.  Think of the worst about us.  Think of those with self-loathing.  Those with low self-awareness, the violent, and the violated, think of them.  Where is the blessing?

Blessed are the depressed and anxious.

Think of the healthy.  Think of the diseased.  The misunderstood, the ones who live miles apart from connection, who ever push like a dingy from the peer into waves and self-destruction, think of them.

Blessed are the poor and lonely. 

Where is the blessing when your real estate is brought low by the creeping up of low-life.  Where is the blessing when you get cancer just when you might retire, when your own body calls you stupid, when you lose your eyes after training as a surgeon?

Blessed are those whose bodies are dying.

Think of every corner, every shadow and open space and the turns you still don’t know about inside of your life.  Think of the unacceptable, the character you wrestle against to moderate away from extreme.  The rope you swing on and try to bring to rest, think of the grey you think you will never achieve.  This bit and chapter, this part of your construction, this surprise in how you deliver is Loved.

There is no aberration from the norm that can separate you from that Love.  There is no addiction or misdemeanor or illness or mutated cell that can lose blessing.

This is fact.  Our life is to live with it.

Blessed am I.  Blessed am, “Me.”

Question:  Where is the blessing in what you like least about yourself?  Please tell us your story.  We need to hear you! Keep on.

Self-Care Tip:  Be your own friend in adversity as in prosperity.  Know you are blessed.

Trying to explain, temporary memory loss in ECT

rain gauge

I’m trying to help explain, “Why temporary memory loss in ECT versus loss of memories prior to ECT?” It is “friendly” to understand our treatment options and dispel stigma, starting with “Me.”  Please let me know if this effort is helpful in any way. 🙂

Community opinion of ECT, largely influenced by the media rather than data, has a very hard time believing that the memory loss is of new memories, (or imprinting memory, ) during the course of the index trial; not memories before ECT, not memories after the index trial is done, not memories when maintenance ECT is going on.  

The best way I can explain this, (and this is my own Dr. Q effort,) is that the memory loss is related to mechanical issues, like a cork in a bottle.  Think of a rain gauge, for example.  After it rains, we see on the gauge that it rained 2.3 inches last night.  We uncork it at the bottom, and all the rain water flows out until the rain gauge is empty.  We let the water out. The rain gauge may fill again when it is recorked.

The electrical stimulus and subsequent seizure to a brain cell is like the process of uncorking the rain gauge.  The natural process of the brain is to “recork” after a stimulus, be the stimulus pressure, magnetic, chemical, or in this case, electrical, and let the cell fill back up each time it happens.  The recorking process happens all the time in our brain, (in vitro,) after natural stimuli act upon a cell, be those natural stimuli pressure, magnetic, chemical, electrical, or another.  

ECT is a medical therapy that uses the basic recovery methods of our own physical design and perhaps, this is one of the reasons it is so effective.

Unless the cell has that inside content, it cannot lay down new memories.  The stimulus and stimulus response does not damage the cell.  They empty it. The response is mechanical.

This idea also works to help understand why the memory loss is most often temporary rather than long-term.  The cells replenish between treatments.  It is a cumulative effect, so the closer the treatments are, the more the degree of memory loss.  As the time between treatments increases, the recovery time is so brief, that the patient doesn’t notice memory loss.  The patient is able to imprint memories without difficulty.  The rain gauge, we could say, has its cork in for longer periods of time.

Question:  Have your choices toward treatment ever changed based on dispelling your own stigma?  Has information and greater understanding of your treatment options ever specifically improved your self-care?  Please tell us your story.

Self-Care Tip:  Use information and greater understanding of your treatment options to improve your self-care.  Keep on.

Electroconvulsive Therapy – a student nurses perspective

http://originalribenababy.wordpress.com/2014/02/23/electroconvulsive-therapy-a-student-nurses-perspective/