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!

Making our way through the questions on ECT – Top 3 Reasons for Being an Advocate

  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?

fancy

Ooh La La!

So much fun to play dress up! When I was a scrub, a solid big boned unkempt of the Cleveland National Forest bordered lemon groves, when I walked barefoot, disappeared for the entire day in the rattlesnake infested chaparral, when I followed my brothers around like a desperate child, I still liked to play dress-up. I would sneak into my mother’s long closet, a dressing room really, with folding doors. I could hide behind her dresses, or climb up onto her shelves and be nothing more than luggage. But mostly I remember staring at her clothes and shoes. I remember one of her all time best outfits – a blue knit bell-bottomed jumper. A wide white belt with a hand-made gold buckle was an excellent accent. Yes, it would drag down below, but all the better to cover my brown feet.

When I think of my top three reasons for being an advocate for ECT, I think of dress-up. There are so many great options to put on, and I can and do exchange them with aplomb, as Fancy Nancy would say. That’s a French word for poise. It’s fancy. If you catch sight of my brown feet here and there, well, you can’t take the hills out of the psychiatrist I guess.

For today, Reason Numero Uno, (Fancy for #1, in honor of the second language I wanna-be speak):

  • It works most consistently, and most quickly of any treatment available. One must pick her fights after all, mustn’t she?

Reason Ithnān, (Arabic for two, in honor of my fancy mother):

  • It doesn’t touch “the body,” i.e. metabolics. Clean.

Reason Trois, pronounced I think like, twa, (Fancy Nancy’s favorite language. Need anyone explain? “French is fancy”):

For example, just by requiring someone to help with transportation, it’s built in. That thereby inherently increases community awareness of mental illness, something we rarely speak of with each other.

Then there is the medical staff. Our nurses are every patient’s advocate. Our masseuse increases oxytocin and other healing neurotransmitters when the patient’s get their massage waiting for treatment and then when in recovery. Our anesthesiologists are knowledgable, see the patient in their “whole person,” often picking up other issues that then will get the patient to receive treatment and improve the patient’s quality of life (QOL); such as hypertension, obstructive sleep apnea, etc…

There’s more, but basically in ECT, none of our patient’s are alone. That stands.

Question: What are the top three reasons you prefer the treatments you engage in? 

Self-care Tip: It is always helpful to write out why you are doing what you are doing, when it comes to medical treatments.

Love to Pee

peeThe little boy was standing in the tennis court by the fence, facing out.  Doing what?  Sure enough. 

“I’m nature peeing,” he said.

Have you ever seen as much happiness than in the faces of little people peeing?  Well, I love to pee, too. I think most of us do. That is until we pee inopportunely. Or poo. Ahem. 

I’m getting older and realize that my happy peepee-ing days are numbered.  Three kids later, into my forties, and like the garden faucet outside with minerals crystallized around a corroded fixture, dripping “will,” (ahem,) start. Soooooooo, sooooooome day, …urine will yellow my underwear. Kids, without discretion, will announce that I smell. And for the innocent, and a once happy pee gone horribly wrong, I will be ashamed.

The pelvis is like a woven basket. Muscles criss-cross in a wonderful design between a supportive frame, like plant fronds and wood. 

When I was an eleven-year-old, I travelled to the African continent.  It wasn’t every country, wink, but a few on the southern side. I don’t remember enough of my childhood. Who knows why. But I do remember, in every African market place, I looked on women and children weaving leaves and grasses. They didn’t even have to watch their projects. Their fingers had memory of their own.  Instead, their eyes were watching us watching them. Brilliant more-than-white smiles in chocolate black skin, turned their curious faces up.

My Mom, a lover of all things lovely, looked. She loved them all – the people, the baskets, the freedom of being in Africa, and more. Then the blood of generations of hagglers and market yellers whipped through her Lebanese veins with increasing energy, distracting her from a bigger picture.  She wished mightily for baskets.  She would have purchased every one and made us carry them all back to our home, eleven hours by airplane, if she could. (Those were the days when people smoked inside airplanes. You and I understand what that meant. That air inside airplanes was the same air everyone inside breaths. It was a long flight.)

A decade-plus later, World Market opened. I wondered about all the faces and fingers it must have taken to make all those gorgeous creations, now for sale in Temecula, CA, for twenty some dollars a piece.

How could I be so clueless as a twelve-year-old, but I was, and I didn’t know about the fingers that deftly moved, the brilliant plant dies, the tight strength that remained in a basket, like hands clasping, between each fiber. The baskets held memory.

These are the baskets I think of when I think of the marvel that the pelvis is.  These are the baskets I think of when I think about how much I will despise losing continence. When losing continence, I will also remember that little guy making “nature pee.”  I will pull the backing off another panty-liner and say, I used to really like to pee. 

Our emotions and behaviors are similar to the joy of peeing and the pelvic basket. We at one point in our life may have loved to live, loved to speak with friends, loved our hobbies and our stamps, and our cooking pans. Some day later, we wake up, and people notice the difference, like the urine smell in incontinence, people notice our emotions and behaviors “leak.” Kids point, even, “Mommy, why does Bridget’s Mom always wear those sweat pants? She’s in the same sweat pants every time we see her!”

It’s awkward. People don’t know what to expect from us. Our emotions and behaviors are not what is socially acceptable and they stop knowing how to speak to us. Our professionals who are supposed to help us don’t even know how to speak to us. They shorten their visits with us. They tell us how to feel, “Just decide. Make a choice. Choose to be happy.”

When people don’t know what to expect, it divides us and separates us and is uncomfortable for all. This discomfiture, (less often consciously aware,) is a barrier in knowing how to speak to a psychiatric patient. It takes a heck of a lot of self-awareness on each party’s side to look inside ourselves and figure out where our discomfort is coming from.

What will you think of when you “wet your pants?” Or of someone you are with? Feel your energy get sucked into the earth by a depressed colleague? Notice acid escaping your stomach into your throat when an angry child’s emotions fill a room? Your thoughts start to buzz when the white noise of anxious Dad comes around.

Remember the pleasure that came back in the day, see into our Me, identify the nidus of discomfort, and then let it lose it’s power over us – then the unexpected with be an encounter of mutual respect.

Knowing how to talk to a psychiatric patient, means that we are okay not knowing what to expect, not personalizing what isn’t about us, and allowing for a context that is in many ways unknown. With this, we will pull the backing off a panty liner and get on with it.

Questions:  How has the unexpected behaviors of your, or of others you know, been treated by your medical providers? How have you treated yourself in those scenarios? Please tell us your story.

Self-care tip: See into your Me to be better at speaking with the unexpected.

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

The Energy in Stigma, Yours for the Taking

unicorn

There are nothing like lightbulb jokes in the operating room to make you plume your feathers.  The other day, my nurse “enlightened” me with them.

How many psychiatrists does it take to change a lightbulb?  One, but the lightbulb has to be willing to change.

How many surgeons does it take to change a lightbulb?  One, because while he holds it, the world revolves around him.

How many nurses does it take to change a lightbulb?  If it’s during shift change, no one will touch it.

That is as far as we got, but please share yours, especially if related to psychiatry :).

Lightbulb jokes are common, clean, dirty, and fairly ageless. It does not take the brightest lightbulb in the room (Teehee!) to know that they are so because they capitalize on stereotypes.  Stereotypes, likewise, are widespread, and fairly ageless.  Even in something as objective as brain disease. i.e., The brain is carbon matter, a human organ, mushy grey stuff. The brain gets sick like any other part of the body, human organ, and people bits. Brain gets diseased, people behave and feel diseased.

A primary care physician’s assistant, “PA,” was sharing with me the other day about how she deals with stereotypes when she approaches patients who need treatment toward brain health.

I tell them about all the executives and professionals who get treatment ‘because the stress gets to them and they have nervous breakdowns.’  Then they don’t feel so bad about accepting treatment because they associate themselves with these successful people.

Stereotypes can be positive, negative, or neutral.  Everyone has them.  We clinicians, patients, grocers, those who want nothing to do with medical care, and even executives and other professionals (smile) have them.  But what, in dealing with stereotypes, is friendly to Me?  It starts there.  With Me, one little, or largely valued Me.

We stereotype ourselves and maybe that is why we stereotype others.  For example, this struggle of what to call illness of the brain is common, widespread, and fairly ageless. A Menninger Clinic blogger wrote eloquently about it recently, “Does reframing mental illnesses as brain disorders reduce stigma? by JON G. ALLEN, PHD.”  Most pithy, I thought was this,

…we should be skeptical of the view that regarding psychological problems as brain disorders will abolish stigma. Although the disease model decreases blame, this shift comes with a cost: It increases pessimism about recovery and might also contribute to perceived dangerousness.

I have never forgotten the Spiral Dynamics idea that in the magical level of consciousness, there is a sense of being disempowered. “Perceive dangerousness” is magical. Behind negative stereotypes, there is magical thinking.  We give over what is not to be given and take what is not to be taken.  We have fear.  We feel victimized.  We lose what is freely our own.  Disempowerment is terrifying. There is a lot more stigma out there than there is information but giving stigma and/or negative stereotypes power is our own choice.

A fellow blogger wrote to me how he approaches it,

Change brain illness to mental illness. Our problems really are brain illness from physical dysfunction but I can accept that my psyche is sick easier than my brain is sick.

Stereotypes may scare us but they can also inspire.  It is up to the individual, to Me, how to respond.  As in lightbulb jokes, we who are targeted by stereotypes can take pride in them.  They are not the same as “stigma” although there is overlap when negative.  Stereotypes can be neutral or even something to be proud of.

How many psychiatrists does it take to change a light bulb? None–the light bulb will change when it’s ready.

How many psychiatrists does it take to change a lightbulb? None. It’s their job to help people find their way in dark places!

There is nothing like the kind of energy in stigma and negative stereotypes to inspire us.  Such force, such Magic, these can get the punk in any of us to love who we are.

I used to be quite turned off by the beatitudes thinking I was supposed to want to be a wimp, and couldn’t quite make myself do it.  Now I realize, being a wimp is just what it is.  The blessing is what is inherently available to Me in my “condition.”

1 Now when he saw the crowds, he went up on a mountainside and sat down. His disciples came to him, 2 and he began to teach them, saying: 3 “Blessed are the poor in spirit, for theirs is the kingdom of heaven. 4 Blessed are those who mourn, for they will be comforted. 5 Blessed are the meek, for they will inherit the earth. 6 Blessed are those who hunger and thirst for righteousness, for they will be filled. 7 Blessed are the merciful, for they will be shown mercy. 8 Blessed are the pure in heart, for they will see God. 9 Blessed are the peacemakers, for they will be called sons of God. 10 Blessed are those who are persecuted because of righteousness, for theirs is the kingdom of heaven. 11 “Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me.

Questions:  How have you been able to use stereotypes and stigma as something toward friendliness in your life?  

What have you found is inherently blessing you from where you find the condition of life to be?

How might you use the energy in them toward being good to yourself?  Please tell us your story.

Self-care tip:  Use the energy available in Magic to empower you, rather than disempower.  

Love Relationships for Power or Dependence

He takes care of me.

Marrying for security is like bombing for peace.  It was not too long after saying this when Amy told me she had been served divorce papers.  She had been seeing me for several years.  In that time, we had worked through her most recent episode of major depressive disorders and a debilitating anxiety.  She had done marvelous.  Courageously fought for her own health, to be accountable to herself and grow.  Is it that surprising that when that happened, he left her?

Abuse.  When one partner uses the power in them to dominate and control the other.

On the other side, there are those of us choosing the abused role such as for the security of logistics.  Example, “I take care of his/her basic needs, s/he buys me health insurance.”

Marriages, or committed Love bonds, require full dependence on each other.  That is different than power.  It is not qualifying that each of us have different levels of power.  Of course.  But using that power to generate intimacy is like having sex to become a virgin.

Question:  How can you grow dependency in your love relationships?  Even with yourself?  Please tell us your story.

Self-Care Tip:  Move away from power as a method to increase intimacy.

Nurse tells her experience – Suicide

Guest Post

by, Leslie Oneil, RN

Nurse extraordinaire!  Person to know.  More.

Nurse extraordinaire! Person to know. More.

In The Ring

I sat at a table in a large meeting room watching Dr. as she stood in front of the room. She stood in front of us with poise…armored with stories, analogies, statistics, and invisible red boxing gloves to match her red dress. She was ready to defend mental illness, and fight for its proper place in medicine and in the spot light where it belongs…right next to the heavy hitters: cancer, heart disease, diabetes.

Dr. delivered the statistics….”1 in 5 people suffer from depression.” She counts the room, “1, 2, 3, 4, depressed. 1, 2, 3, 4, depression.” She continued, “Put all of the depressed people in a room, and look around. 1 in 15 of those suffering from depression will go on to commit suicide.” It’s dramatic. The room was silent. It usually is. I am not comfortable with the topic anymore than I was the first time, but I am getting used to hearing the same phrases, the same statistics, and responding to the same questions from the audience. I am now familiar with the language of mental illness.

Last Friday, as I stood in the middle of the PACU, our eyes met. It felt intense. it was an emergency, and an emergency in behavioral health means…

Then I heard Michael Buffer, the master of ceremonies, in my head. He introduced the statistic to the ring. Dramatic music played, and before I had the chance to raise my gloves, the statistic nailed me…First with a left hook, then went below the belt. I was knocked out. Speechless with my face in my hands. Gloves were off.

 

Your patient committed suicide.

 

No amount of training prepares you. No power point presentation. No book. No doctor.

TKO.

I never even imagined how I would handle the news. I was weak in the knees and shook.

The patient was starting electroconvulsive therapy in 3 days. The patient had just called me. The patient denied any suicidal thoughts. The patient…….It doesn’t stop.

The gravity of what I do hit me. It hit me hard.

As I drove home I thought, “Have I entered a losing battle? I’ve wanted to be a nurse to comfort people, advocate for them, care for them, and try to help improve their quality of life if possible.” If possible are the key words.

Am I okay with, “We did everything we could. Stop. Time of death….”

 

My question to you: “Do you find gratification with the result or with the process?”

You think you know the answer…until you’re in the ring.

 

Leslie Oneil, RN, is a ECT specialist nurse.  She writes at a blog worth following, A Very LOshow.