Identity that refused to fade

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.

The Testimony of The White-Headed People – Connection and Aging

Once again, I find myself in a café.  This doesn’t happen often enough for me.  But here,Almond paste tart with chocolate mouse and blueberries

I am

at the wonderful le Croissant Bakery, indulging not only in the quiet of my private thoughts, not only in my delectable chocolate croissant with coffee, but also in the ambiance.

Here, there is this completely lovely group of white-headeds, maybe ten of them at a table, sharing the treasured community of each other.  None of them walk completely upright.  One is wearing his oxygen tubing with tank in tow.  The ladies are coiffed irregardless of their folding skin and thin hair.  Fruit tart

I am

so blessed to be in their community, testifying to me that aging doesn’t have to be done alone.  Flourless Chocolate cake with Ganache inside

I am

sure, 100% sure, that none of them are aging as they dreamed.  Each of them have outlived many loved ones and the ground they walk on has changed many many times.  They have, each of them, learned to walk again after suffering the type of loss that put’s any of us in bed.

I am

blessed.  This collection of café moments they have together does not account for these losses.  This does not resolve their ongoing conflicts or pain.

But none of them,

Almond paste tart with chocolate mouse and blueberries

I am

100% sure, did not let those things keep them from having this moment together today.

All this sureness without having checked my notes with them?  Yes.

I am.

Crumbs on a Plate

Image by rockbadger via Flickr

Your Pain is Not Special. It Is Normal.

Self-Care Tip #243 – See yourself as special rather than your pain and know that you will find your normal again.

What is your normal?

When we were kids, we all had a perspective of what normal was.  Let’s say it was “here.”  Let’s imagine we were lovely then, nurtured and emotionally bonded.  We struggled through peer conflicts, social anxiety and rivalry.  We wanted a bike.

Two Sisters

Image via Wikipedia

Then we got a little older.  Maybe our parents divorced.  Maybe, a sibling died.  Maybe we were abused or in an accident and damaged.  Damage changes normal.  What we never would have thought would be acceptable in our lives became acceptable.  We suffered.  We lived.  Life was indiscriminate and ignored our status.  We think there must be a mistake.

What is our normal at one point, filtered through remaining hopes, grew into regenerating fantasies, through real potential and it moved again.  We are older now and more suffering comes.

Where is our normal?  We survive our child, our own dear perfect boy, hanging from a tree.  Normal?  No dear God!  No!  And we continue to live.

Two years.  Two years are what it takes for our biology to catch up to the shock.  Two years are what it takes for us to begin to accept and realize that in this new normal we care again.  We choose it in fact.

People don’t remember his name or talk about him and we can’t remember his eyes.  We are ashamed and lose our breath from panic just trying to see them.  We want to bang our head because we know there is something wrong about feeling normal! Ever! Again! after that.  But we do.

Our normal mutates over financial ruin, abandonment and a growing healthy list of disfiguring illnesses.  We accept them and say yes please.  Live.  We want to live.  This is acceptable.  This is normal.  Our friends die.  Our memory.  We can’t find our teeth.  Our heart stops.  We die and the world finds normal.  The world chooses just like we did.

What we don’t think will ever be allowed to happen while we brush hair, clip our nails and microwave food, happens. We endure these changes.  We find normal again.

What is your normal?

My brother, Vance Johnson MD, is a physical medicine and rehabilitation specialist.  He said that during his residency, close to 100% of spinal cord injury paralysis survivors he worked with wanted to die after their injury.  Many of them would beg him to let them die.  They would cuss at him for keeping them alive.

I leaned very heavily on the studies and data during those times.  It was very hard.

Vance said that what kept him faithful to his task was knowing that close to 100% of them after two years would be glad they were kept alive.

Even the ones who were basically breathing through a straw and that’s all that moved on them; even they wanted to live.  These people found a new normal.

Where is our normal?  We will want it.  We will adapt.  Biology will catch up to our reality.

Remember that your pain is not special.  You are special.  Not your pain.  Pain is normal.

Question:  When this happened to you, how did normal find you despite the rubble?  How does this concept feel to you, that your pain is not special?  Does it make you angry or what?  Please tell me your story.

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.