The Integrated Aphasia Therapist: Engagement with Self and Other

For an aphasia therapist, there is perhaps nothing as disconcerting as silence.  

It can seem like failure:  failure on the part of the client, who cannot find the words he seeks, floundering in an ocean of deepening waves.  And failure on the part of the therapist, for whom silence is the moment of truth, evidence of her inability to help.

I remember as a beginning therapist, that I could fill those silences so quickly, rushing in with a cascade of words to cover the dry language riverbanks my client had revealed. Establishing myself as an enemy of silence seemed like an imperative.   And I took away a tool that the person with aphasia could use, and from which I could center myself, and learn.

Audrey Holland is so very right.  In silence, there is mutual acceptance of the relationship. And there is time and space for the person with aphasia to find his voice, free of one's own verbal juggernaut.

The very first time I observed someone with aphasia, I was struck by the silence.  I saw and felt it as painful.  So used to the rapid exchanges in conversation, words tripping over one another in a rush, that I could not bear the moments when, lost in his own verbal whirlwind, the client slowly cleared the fog, and travelled a sort of internal journey on his way to bringing the thought to fruition. How many times, I wonder, did I interfere with his efforts, by my constant barrage of language?

True listening involves silence.

Like the drip of water from a faucet, silence makes us listen for what is coming next.

It is very, very hard work.

I have not read "Eat, Pray, Love."  When it was so ubiquitous that one could hardly ride a NYC subway or find a book club that was not reading it, I instantly rebelled, just as I did with all of Harry Potter and every other book that captures the mind and hearts of the people and carries it off into the successful sunset.  I have always preferred the books of people less known, less successful:  those who struggle in the dark nights to put pen to paper and create.  So, too, am I a snob in my own profession.  I scorn most of the available literature, seeking instead, the wisdom of those less travelled, who have suffered through a personal journey and have emerged with something that resonates with me.  In the previous two decades, my creative spirit has been most in tune with that of those who profess a connection to The Life Participation Approach to aphasia.  So, when I came across this TED talk by Elizabeth Gilbert, I felt immediately guilty for having scorned her work, since I find in this talk, parallels between her ideas of creativity, and that which lives in my therapy room.

A century ago, when I was in graduate school, I read a piece by Gerald Siegel.  (In the interest of full disclosure, let me state that he lived near my cousin Harry Seltzer's father's paint store in Brooklyn, and so when I arrived at the University of Minnesota in the 60's, and introduced myself, he announced that I must surely be family.)  This article had to do with the the limits of science in speech pathology.  If you struggle with the notion of blending art and science into your work,take time to read this article, embedded in this post.

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The idea of there being an art to our work as well as the science was extremely important to me.  I loved what aphasia was becoming for me, but hated the idea of being a "clinician":  one who applied certain tested principles and constructs to the efforts of remediation, and thus, furthered the scientific process.  I longed to be a "creative" therapist - one who could use those same principles and constructs, but in ways they had not been used before.  And, to be the kind of therapist who achieved success because of that departure.

Okay, Elizabeth.  I will try not to be daunted.  I will try to just do my job.

http://www.ted.com/talks/lang/en/elizabeth_gilbert_on_genius.html

Speech pathologists begin life as regular humans.  Or at least, I think so.  Those of us who choose this profession have many reasons for doing so, I'm sure.  But one of them has to be the love of words. 

They begin with breath and float across the open divide.  You hear them because they translate into a pattern of vibration which travels to your cortex and lands there with a thump, picked up and transformed into combinations of sound that make meaning.  And there, finally, communication: the means by which human beings affirm each other. 

It is a miracle, this thing called a word. 

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Miracle. 

The communicative arc is a mystical act we have come to see as commonplace, until the arc is broken, and we are left there, poised between each other across the sea of air, waiting.

Whispers.

Words.

Connection.

I wish them all for you this holiday season.

I don't think it's a coincidence that two years ago, I began to study the Japanese art of Ikebana.

About once a week, I search for floral materials in shops or in my backyard when the season permits.  I clear the dining room table, arrange my materials, my Ikebana scissors, and choose a container.  I try to do this when I am alone, and when there is natural light streaming in from the windows.  I sit.  I breathe.  And I begin.

Here is my holiday offering to you:  reflection in flowers.

May your Thanksgiving be peaceful.

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Many years ago when I worked at Rusk Institute, I participated in a marathon session over several hours, led by experts in the sexuality of people with high level spinal cord injuries.  It began with the lights out, all of us cross-legged on the floor, and the onset of  rapid fire explicit images on film, with a constant barrage of spoken and shouted words depicting body parts and sex acts.

Suffice it to say that I had heard most of those words before, but never quite that way. Like many in the audience, I kept trying to keep my face from flushing and my eyes straight ahead.  After several excruciating minutes of this, the leaders explained that it was one way to desensitize us to those images and words, in order that we own them, take away their power, and in claiming them, develop an ease and comfort in the subject. In this way, we would be able to be comfortable addressing sexuality with people who needed us to be frank and open and honest.

Words have power over us until we own them.  Then, we have power over them.

Last night, I watched Representative Gabby Giffords on ABC.  I was struck by her courage, fortitude, humor, sensibility.  In short:  her personhood.

I did not hear the word.  No one spoke the word.

http://abc.go.com/watch/2020/SH559026/VD55153303/gabby-giffords--mark-kelly-c...

Aphasia waits there/Word with power to claim you/Speak it. Make it weak.

I have been working with a client for some time now, whose aphasia remains a mystery to me.  I have spiraled through several postulated models of neuropathology, trying to find the road in, so he can find his road out.  This is always based on whatever he can show me about his language and speech processes, which are perhaps the most complicated I have ever known. 

We’ve been together two years now.  The man is exceedingly patient with my intellectual and academic pursuits of his demons.  I share with him my thoughts, and he tells me what he thinks about what I think about what his brain is doing. 

It’s like a neuropsychological party line.  We are listening to all the voices, and trying to understand what is being said.

I have come to respect his brain, to truly appreciate its struggles to find what I imagine to be compensatory and wayward tracks up, over, or through brick walls that impede access to the modalities we call speech, comprehension, reading and writing.  His brain is teaching me things all the time.   Having puzzled a rational solution to one tiny piece of behavior, it defies me and goes the other way, or in a random arc somewhere I cannot follow. 

Of course, I’ve had a trick or two myself.  Sometimes we are speaking only to each other, and I know the brain is listening.  Other times, it’s that three-way conversation.  I resist images of the brain in a corner, laughing while we other two try to bend it to our wills.  This is not a teasing, adolescent brain, although it may be ornery, for sure.  This brain deserves respect and reverence for the amazing job it is doing. 

If McNamara is right, this man’s brain may indeed go where it is most appreciated, back in line with the heart, which knows exactly where it wants to be, and maybe, how to get there.

The thing called hope lives in the very breath of a person with aphasia.  In the early days of my own journey as a therapist, I came to believe hope was an enemy.  It stood at the door, arms crossed, daring me to confront it with what I saw as the truth:  that aphasia was a permanent disability, and not something that would disappear.  What I failed to understand is that truth is not the enemy of hope.  It is more like a mirror through which the aspirations of the person must travel until the images are in concert.  And there is not a defined time frame for that.  Perhaps it is a lifetime.  Certainly, people with aphasia leave me often far before they can see that image clearly.  And I have so many unfinished images I hold in memory, wondering if hope and truth are reconciled. Sometimes, I am lucky enough to witness that final connection.  It is truly miraculous.  I search for it in myself as well.

Most of us know that death is the inevitable end point of life, but we do not think much about it. 

Perhaps we plan ahead a bit when we create a will, or buy life insurance.  Perhaps we buy a cemetery plot, or decide about  which end-of-life rituals we want to put in place.  Or, perhaps we don't address it all. 

When complacency is interrupted with a life-threatening illness, we become very aware of that fine line between living and dying. If we recover, we know we have come out on the other side, a bit beaten and shaken by the reality of what we almost lost. 

We are changed by that experience. 

All around us, there are encouraging voices and stories, urging us on, marvelling that we have escaped death, and chasing away all feelings of loss and vulnerability.  We can come to believe in hope for our futures as the solution, and everything we do is for that hope:  recovery, return, resurgence, re-establishment of self.  There are so many heroes people point to - people who "never give up," who follow the hope journey wherever it leads.  

Hope is neither a solution nor a problem.  It is simply a part of the human experience.  So is illness, and recovery, and the journey we make along the way.  

I become impatient with myself when hope stand between me and those with whom I share a journey toward living with aphasia.

I found resonance in Lily's words.

Many years ago, I telephoned a former client - a person with aphasia - to tell them our appointment time had changed.  After several rings, the answering machine clicked on, and I heard her voice.  Although it had been several months since the onset of her aphasia, she had not changed her message, and it was the before-person who told me she was not at home, but that my call was important, and asked me to leave a brief message.  I hung up, and redialed.  I listened again.  Actually, I listened several times, attending to the tone and timbre of her voice, the lilt of intonation, the smile behind the words.  This was a person I did not know:  the before-person. I became a time traveller.

I knew enough about her to imagine the before-person, busy with her art, her letters, her well-known dinner parties and close-knit family.  But the voice...the words...these had been hard to imagine. Flowing effortlessly through the telephone wire, they transformed my current knowledge into the two moments of her life that distinguished her own memories.

Aphasia changes things.  Changes people.  Changes relationships.   The person after aphasia is very strongly influenced by the before-person.  That is why it is so important to come to know him, too.