“Attention without feeling…is only a report.” Mary Oliver

mindful listeningIt seems I am losing yet another person to whom I am connected.  Listening to reports of her decline, a fall, a broken hip, failure to thrive.  I can see the path she is on, and I am hoping she has the inner strength to follow it.  Ultimately, if I follow my own path, I know we will meet again.

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The sharing of joy, whether physical, emotional, psychic, or intellectual, forms a bridge between the sharers which can be the basis for understanding much of what is not shared between them, and lessens the threat of their difference. Audre Lorde

black white

The feeling is palpable – a wall is up, and I’m the enemy.  Black inner city woman – tired, and depressed, and with seemingly little to say, has ID’d me:  White.  Privileged.  Unknown to poverty.

Of course, she’s right.  Only thing, one generation back, there was no privilege and there were only blue collar workers and a struggle to get through eighth grade.  We grew up in the Bronx, not really understanding what it was like to need to board people in your apartment to bring in some extra money.  To pay insurance salesmen who came to your door the required fifty cents a week,  so you could bury your elders.

They say epigenetics is discovering how we carry in our genes the history of our parents and grandparents.  I believe it.  It accounts for why still in my refrigerator sits the last of the pot roast I made two weeks ago; I will not eat it or serve it, but throwing away food is a very hard thing.  It is also why I have a kind of reverse snobbism for those who have not struggled, even a little, and become enraged with those who stand in the way of others who need to fight their way through life to get even a little piece of it for themselves.

No matter.  None of this helps me through the wall.

At the third visit, she mentions that she used to preach for her church, The Jehovah Witnesses.  She has with her the JW bible which I’ve never seen before. It has taken all of the verses and re-written them in contemporary English.  It has some pictures.  It is made for people to understand.  And she begins to tell me about it.

Now, for years, I have known Witnesses are wholly against the way I live my life:  a cultural Jew, a woman married to another, the mother of a son born of that union.  But here she is, her eyes wide open, and leaning in to tell me about the thing she most values in her life, and her speech is the best I’ve ever heard it because the wall is down.

She is speaking, and I am listening.  Deeply listening.

What miracles occur on both sides of the wall.

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One Jew in the Pew

church

Today was the funeral for one of my first Speaking of Aphasia clients.    He came to us with an additionally wonderful family, all of whom were evidence of his grand heart, quick wit, and desire to do good.

Aphasia was an unwelcome but not insurmountable life alteration to him.  His intellect permitted him to engage in conversations that were rich and satisfying, even without the words.  In this way, using SCA™ I discovered that the scar on his hand and arm was the result of a fight and fall, that he played baseball well enough to have considered it vocationally, that he was a tireless supporter of many liberal causes, and had waged battle with his own personal demons in younger years, emerging victorious and committed to helping those in the same hell-space.

He  participated in celebrations for his children and grandchildren, enjoyed the recognition he received from his colleagues, the weekly lunches with one true friend who never abandoned him for lack of spoken words.  And then, the loss of his one great love; I attended his wife’s funeral in this same church not so long ago.

Sitting there, an observer of the Catholic rituals and music, the Bible readings by his grandchildren, I felt…what?  A bit shut out of the communal mourning with which I so wanted to connect.  Jewish funerals are so much more familiar to me; the responsive choral utterings fall off my tongue so easily.  And here I was, intimidated by an Amen.

The priest rose to give his eulogy, and I listened intently, recognizing in his words that they had been friends, and hearing both familiar and new stories.  Toward the end, he asked us to close our eyes, and to meditate upon the man, whose coffin I could see clearly.

When I closed my eyes, I saw light grey, and in the foreground, what looked like two darker grey figures in silhouette.  My left brain recognized them as negative shadows of the two priests in bright white vestments I had gazed at for several minutes, but then I saw them as this man and his wife, and in that instant of recognition, the two figures quickly merged, and then all became light grey again.

In the last moments we all stood with eyes closed, I heard the first few words of the Aramaic Kaddish – considered the Hebrew prayer for the dead:

Yis’ga’dal v’yiskadash sh’may ra’bbo…

 

 

 

 

 

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“A counseling moment at the end of the session? It’s unacceptable to say ‘We’ll talk about it next time.’ Screw up your schedule and do it.” Audrey Holland, Counseling Around the Edges

crowded-elevator

Forty-some years ago, I was getting into a long-waited-for elevator, having just finished an evaluation at the bedside of someone with an acute stroke. The crowd advanced in that politely menacing way we do when we need to get on but don’t want to trample someone. And as I turned to face front, having squeezed my crisp white coat in before the doors closed, a hand from the outside reached in and a man said to me, “I need to talk to you about my wife. You just saw her.” I told him that I really needed to get back to my office for an appointment, but that I would come back soon. He stood implacable, his hand on the rubber door protector, and said nothing. I walked off the elevator.

He was right, of course, and so was Audrey. The pressures we feel whether from the workplace or our internal states don’t matter when it comes to the connection we need to make with the people we serve.

This family, as it turned out, became pivotal in my own development as a therapist. She was a brilliant, sad, and funny woman, whose journey taught me a lot about the see-saw that is resilience and depression. Some years later, after our therapy had ended, she helped me through a difficult time of my own. It was the first time I permitted anything like that, so filled was I with the professional caveats about personal relationships.

Screwing up your schedule is a good thing.

I’m still doing it

hand reaching

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“The demon that you can swallow gives you its power, and the greater life’s pain, the greater life’s reply.” Nietzsche”

I have been mourning for two days the death of an old friend.  There are literally pulls to the heart and a fiery burning behind my eyes as I swallow the death demon.  I know time will give me its power.  I have the same feelings sometimes in my practice, as lately, seeing one of my elder ladies with PPA progressing further into the dementia that must claim her.  Last week, she forgot to put on her socks.  The silvery hair is no longer well-coifed, and there is a bit of Whatever Happened To Mary Jane about her eyebrows and other make-up.  Our sessions have morphed into slide shows, with comments and affirmations.  Still able to understand language, we sometimes listen together to TED talks, especially ones with humor.  This is because I like to hear her laugh.

I like to think that all of these experiences that are life’s pain are a way inside myself, finding strength there to reply.

Featured image

How do I know when I succeed?

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Supported Conversation for Adults with Aphasia (SCA) tm or The Vulcan Mind Meld

vulcan mind meld

Yesterday, I was having a conversation with a relatively new client, whose fluent aphasia is often challenging for us both.   In this case, it was a combined metacognitive talk about his process, a talk about his frustration in not even being able to say his favorite football team name, and a political discussion, and since he is enmeshed in the world of finance, I expected to find him staunchly republican.

Wrong.

His liberal roots began long ago, I learned, when he was a boy growing up in Brooklyn.  Of course, none of these words were in his vocabulary.  His output is like a vast and empty midwestern plain, where occasional scrub brush and grassy clumps can be seen, but where, as listener, you are charged with populating the land with possible plants and flowers.  This is called, “Supported Conversation for Adults with Aphasia” or SCA ™, in which the use of written words, drawings, musical jingles, and hodge podge permits the client to choose, to validate responses, and reveal what he knows, and who he is when language will not serve.  {For further explanation of SCA, please refer to the work of Aura Kagan at Toronto’s Aphasia Institute }

After an hour together, my treatment table is littered with messy pieces of paper that look like this:

IMG_0511

and this:

IMG_0510Look, if you will, at the four words in pink at the bottom of the second page.  He was trying to tell me which college football team was his fave. It was going nowhere.  He swept the air with his hand, like erasing a blackboard – an indication we were going somewhere else.   “You know,” he said, “the big guy, the one, the guy…  killed”  For some reason, I wrote “Pres” and he indicated “president” was correct.  Since we had just finished talking about his love of JFK, and sure it was assassination he was referring to, I wrote “Kennedy”.  “No, no, ” he said.  “Back.  Way way back.”  And then, I thought of another assassinated president, and wrote, “Lincoln.”  “Yeah, he said, with a questioning intonation, “and, so????”  And I figured it must be Lincoln’s state of Illinois.  He liked the Illinois team. In that moment, he stopped and looked at me.  “You,”  he said, smiling. “Thanks,” I replied.

The Vulcan Mind Meld doesn’t always work.  But when it does, I salute Mr. Spock.

“It’s only logical, Captain,” he says.  “Live long and prosper.”

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Smile? Really?

So, there are different ways of thinking about the sadness that accompanies aphasia, in the beginning, the middle, or the right-now. 

Here’s one, with apologies to the ever-wonderful Tony Bennett

And here’s the other, from Sholem Aleichem, with no apologies, but an explanation:

Sholem Aleichem

A Jew always laughs with a tear in his eye, what is called in Yiddish “men lakht mit yashtsherkes.” And even when there is deep grief, a smile should never be far away.     © 2009 Moment Magazine

 

And which one, do you think, is you?

 

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“The days aren’t discarded or collected, they are bees that burned with sweetness or maddened the sting: the struggle continues, the journeys go and come between honey and pain. No, the net of years doesn’t unweave: there is no net.” – Pablo Neruda

safetynet

There are days when I am moving so resolutely forward that I do not have time to think about where I am going.  The experience is a bit like driving for a while and realizing you have no idea where you are, or how you got there.  The same thing happens when you are doing something you have done a thousand times, like brushing your teeth.  You wonder how long you have been standing at the bathroom sink, and suddenly you see yourself in acute focus.  In aphasia therapy, there are times when instinct takes over, and you find yourself responding, or not, and it is only afterward that you have some awareness of what happened.  It is these unguarded moments that are often the most important.  We have so many filters through which we have learned to react, so many caveats.  It is hard to remain genuine and at the same time be the therapist, unless you have become more genuine in the process.  Mistakes happen.  I have wished sometimes that I could catch the words I have said before they reach his ears.  Too late.  No safety net, indeed.  In the end, you simply have to trust yourself and keep driving along the road.  Most times, you can get there.

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“I think I’ve brushed my teeth for the last time.” Audrey Holland, quoting a person with ALS on her last visit with him.

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Death is not a frequent travel companion for those of us who are speech and language therapists, yet there are times when it makes its presence known. 

 

In my current practice, I see two elders with Primary Progressive Aphasia, who, though still active and thriving with the supports of their husbands, are facing relentless decline and death, most likely within a year or two.  Each in different ways, they tell me this is true, even as we work some magic to experience successes in language and social activities, or plan ways of staying involved in the lives of people they love.  It is difficult for me, this bearing witness to another’s experience.

 

Harder still is watching someone’s emotional state move him toward, and then actually into a suicide attempt.

 

Forget that we have done all the right things:  the sharing of information with wives and psychiatrists and neurologists, making sure they know what a precipice he is standing on.  After today, it is highly likely that he will have an inpatient psychiatric admission. Psychopharmacology, psychotherapy, and even brain stimulation have not altered what seems to him like an inevitable course of action. 

 

Because he can walk, and talk, and even play racquetball, many friends and family do not understand the depth of his loss. They tell him they are sure he will return to work, even though his chosen vocation, highly demanding of verbal and intellectual ability, and for which he has few equals,  is now entirely out of reach.  His work was his definition of self – his core.  And now, it is gone.

 

I have had only one role for many weeks:  validator.  He had experienced such relief in having someone reverbalize his statements of loss, and, in that process, acknowledge his right to mourn.  The relational therapist must sometimes ingest pain in order to diminish it.

 

Must the pain then,  live in me?

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People take different roads seeking fulfillment and happiness. Just because they’re not on your road doesn’t mean they’ve gotten lost. ~The Dalai Lama

Image  In the conversations at my therapy table, there is a good deal revealed.  Some of it is about me.

Despite years of personal work, I find my own agenda intrudes upon the goal of being fully mindful of the other in our sessions.  There are stories unfolding here:  memories of the past, considerations of present experiences, and yearning for future dreams.  I have to resist the many thoughts and wishes I have to mold the stories into a more self-pleasing trajectory.

With the idea deeply implanted that living well with aphasia means discovery of a different orientation toward life, I grow impatient with the thoughts and actions of clients who find that road slow and hard to travel.  The old definition I held onto for so many years:  healer, fixer, maker of good endings – intrudes again into the open and accepting space I thought I had built into my office.  It makes the room smaller.  It makes my listening inaccurate.  It makes me conflicted about when to remain quiet, and when to speak.

Inevitably, I find myself in an internal battle between what I think, and what I know.

To win, is to lose.

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