dying

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More on Dying

Tonight my husband cast this up on our monitor/TV. “This was my colleague.”

A couple who worked in palliative care used social media to share their experiences after one of them received a terminal diagnosis. It was later featured on The NewYorker.

https://www.newyorker.com/culture/the-new-yorker-documentary/what-is-it-like-to-be-dying

Watching with him the face of dying threw me back to watching my Dad. The way they both, Kathy Brandt and my dad, smiled up with tight faces, skin pulled over bones. So much love there. Dad would smile and I heard him say in it, “I love you Sana. Will you still love me while I die?” There is an insecurity I imagine in that process of saying goodbye.

Then when Kathy Brandt apologized to her audience for her condition. Her “weakness” was something to say sorry about. We also apologize for our weaknesses; for things we had nothing to do with other than that we are the carrier of some biology gone bad – major depressive disorder, cancer, alopecia… Name it. It will take you a while to cover all the things that we apologize for that describe our humanity more than they describe our fault.

Maybe we apologize rather, not in shame, but in empathy toward our listeners. There is a consideration of what our defect imposes on them. That could be. But I wonder what would happen if we didn’t apologize. Instead, allow the others to let our flawed selves just hang out there in the space between us, bringing them into a greater awareness of what we are going through. “Hello. There is no brush off here. Rather come be in my suffering and we will commune. You and me.”

There was no mention of God, what happens after death, or the meaning of life. I don’t know what they believed. They seemed like they just wanted to share the basic experience, the breathing, (…my dad rattled again in my mind when I heard that,) the changing face and body, the personality coming through, the relationships affected and so forth. This gives us space to be there with them, without doctrines setting up lines and corners we have to navigate. Not so bad. I appreciate them.

Speak: Let us know what you think of this documentary. Give us your adjectives. What notes does it hit for you; the resonance you hear and where you find your community. Speak!

Selfcare tip: Allow yourself not to apologize.

Identity that refused to fade
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Identity that refused to fade

“Who is changing this TV channel to cooking shows?” a nurse was asking, exasperation evident in her voice. “Every time I turn around, someone changes it, and I am sick of it.”

The voices from the ICU patient room were audible in the hallway. I stopped to listen before I entered the room.

“But the patient…” – the nursing student couldn’t quite get the word in. “What about the patient?”, the nurse interrupted. “I am sure the patient doesn’t want to watch some boring cooking show; here, I am changing it back to the news.”

I’m a hospital based cardiologist who does a lot of consultations. Today, 88-year old African American Mr Jaafir, very sick all over, including lungs and heart. A ventilator had been breathing for him for about a week and it didn’t look like he would be able to get off any time soon. Still, he was mostly awake; when people asked him questions, he was able to write the answers on the paper – the ventilator kept him from talking. During one of my earlier visits, I had run into his large family at the bedside – a younger stylish wife and several verbose sisters, all of them clearly attached to the patient, and eager to pass on his life stories.

The family had told me what the current nurse Marcy did not know – Mr Jaafir had been a chef, and a famous one at that! I had listened as they told me of his famous dishes – the ones that people traveled distances to sample, and were featured in local newspapers and TV shows. Not only was he well known for his restaurant cooking but his home was a central location for the whole neighborhood. I had also learned that being the center of attention had resulted in an interesting life with several marriages and numerous children and grandchildren.

I told all of that to Marcy.  She knit her eyebrows for a second to think and then chuckled, “So, Mr Jaafir, this is why you have been banging on the bedrails when the channel was changed?” The patient glared. Having been an authority figure to numerous family members and friends all his life, he did not take kindly to the loss of control. The cooking channel stayed on for the rest of the day. And for Marcy, Mr Jaafir now had an identity apart from being a random patient on the ventilator.

Over the next couple of weeks, the family and friends came and went. Mr. Jaafir stayed opinionated – the bedside table was littered with sheets of paper,  his directives with exclamation marks and triple underlines readily visible. However, his strong opinions could not sway his weakened body, and it finally gave up. He knew it before it happened, and his writing changed from “I want to go home” to “let me go”.

I stood at attention with the rest of the staff and his family when his body, covered by the American flag to honor his service to our country, was taken away to the morgue. I had admired the way this man had lived – with a strong sense of self, touching multiple lives on his way, taking care of his family, commanding strong respect in his career. Even more, I admired the way he had died. The formidable sense of self had accomplished a rare feat – retaining his identity while helpless in the ICU. He died as he had lived – strong, surrounded by family, firm in his insistence to choose his own path.

Version 2

Self-care tip: You are you. Don’t let people change that. Keep your identity.

Question: Have you felt your identity fading in difficult life situations, such as depression, sickness, and/or stress? Tell us your story.

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What We Will Do For Brain Health – Looking For Heroes

Death and the Maiden #2

Image by CapCat Ragu via Flickr

My dad is turning seventy-seven tomorrow folks.  He could have died a gazillion times before now, but it is the tumbling of those near-deaths into big life that teaches and recruits me.  He makes life feel like open space, warm skin, color and lyrics.  Now his spine is crumbling, his legs are weak, his lips are always moving in and out like a rabbit and he’s almost too hard of hearing to comfortably socialize with.  Still, it is the life, the interest he has, the way he doesn’t stop growing that somehow dims the many times he might have died.  Why does the one time he will die seem impossible to juxtapose against any future then?  Where will life go, if he is not there to infuse us with his humble will?  I think it may fall asleep with him but I know it will not and I cannot imagine it otherwise.

These past few posts we have talked about “special efforts” for brain illness.  We asked, “Is there any treatment you think is too extreme to consider to get brain health?”  We have not said the reason we cannot fairly answer.

I don’t know how life will be without Dad; we never know how life will be when our brain is bad and then more bad.  It’s hard to tell.  We can only imagine and usually our imagination will be wrong anyhow.

Any answer to this question, “Is there treatment you think is too extreme to consider to get brain health?” is shaped by our understanding of what “extreme” means.  It changes shape and margins with the degree of brain illness.  With each turn, as our disease process exacerbates, so progresses our willingness to believe what is reasonable versus what is “extreme.”

Many of you have told us of your own specifics in your fight for brain health.  People do heroic things and I’m thinking you and I might have a bit of a living hero in us.  In part, it is the inherent unknown in growth that testifies to life itself.

“Is there treatment that you think is too extreme to consider to get brain health?”  I imagine my answer would be, no.  Please tell us more about yours.  Your view from your degree of extreme helps.  Keep talking.

Self-Care Tip – Let the hero in you speak, grow you and testify to life.

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Choose Back! …As Long As Life Chooses You.

A Girl On A Footbridge

Image by jyryk58 via Flickr

Self-Care Tip #241 – As long as life chooses you, it is your right to choose back – so do.

Although I am not a geriatric psychiatrist, I have still been given the pleasure of serving a “golden” few.  What has impressed me has been their willingness to start over.

Starting over takes courage and humility whether it is deliberate or not.  Sometimes fear dances between the lines of all the emotions and intentions. But still, wouldn’t you agree that it takes courage and humility to negotiate fear?

(Enters Hans.)  Hans was seventy-three years old.  He had struggled with brain illness on and off he thinks since he was at least twelve.  There were big spaces of time when his disease exacerbated, and he largely suffered.  But he chose, at this age, to try again for improved brain health.

Is there a time when we start thinking, don’t keep trying to start over?  Maybe in the dying process.  In case you don’t know, the dying process is a specific term.  It means the time when a person is facing impending death.

This area of medicine is not my specialty but I imagine at some point we want to stop with that starting over process, give up, but not in a hopeless way.  In a way that says,

I can stop trying for new anything and sit in the space of what I already have in me…

…Which hopefully includes all the ingredients and interrelations of life.

But how far before that point in life do we consider starting over reasonable?  I’ve heard of kids being told they’re too young to ride a bike, or cut with a knife, or understand the dinner conversation.  No one bobs their head at that.  But find a seventy-three year old who believes that after a lifetime of perceived failure by onlookers or themselves, who still says,

Now let’s give this another go,

…and if it hasn’t been said, it’s been thought,

give it over already!  You’ve hit your seventy-times-seven chances!

It’s like they’re shopping in the teen-ware.  We blink our eyes and angle our heads.  Even the thought of starting over as a real option feels indiscreet.

(Enters Hans.)  Hans is seventy-three.  He is starting over.  Humbly and with courage, he pursues brain health in the face of stigma.

I think I had celebrated my six birthday when my dad asked me if I felt any different from how I felt when I was five.

Yes!  I feel older!

 Then he asked me how old I thought he was.  When I answered some enormous number like, “twenty-two!” he asked,

Does forty-four seem old to you?  

Of course it did!  But I had an intuition that if he was old, than he’d die, so I said a definitive,

NO!  Daddy you’re still young!  You aren’t old!

Now, almost that same age myself, I am in awe of him and the others in their golden or not so golden years (Enters Hans) who believe that as long as life chooses them, they will choose back.  It is their freedom.

Questions:  When all your senses don’t sense pleasure in life, or you feel old and useless, or you feel that you’ve failed too many times, how do you choose to start over?  Who has inspired you and what did they do?  Please tell me your story.

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