Through the mirror of soundcloud

flect_magic_mirror

Some months ago, Michael Biel was kind enough to interview me for ANCDS as part of his series on aphasia therapy.  I doubt there is anything more terrifying than hearing yourself speak for an hour, but fortunately, Michael is a wonderful interviewer, and managed to create a safe space for me to talk about my work.  With gratitude, I offer it now to you.

 

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In the midst of such uncertainty, I cling not to what I know, but what I feel. Heidi Julavits

individual rocksAphasia Awareness Haiku # 3

I am happy now

Though I know there are no words

To say how much.

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Aphasia Awareness Haiku #2

Sometimes in the night

My dreams show me all the words

But they’re lost at dawn 

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“Awareness is the ability to directly know and perceive, to feel, or to be conscious of events, objects, thoughts, emotions, or sensory patterns.[1] In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding…” Wikipedia on Awareness

As a person with a disability, I have never appreciated a goal of increased awareness of disability on the part of others.

As a college student, I remember refusing an assignment in one of my classes, which was designed to increase our awareness of what it is like to live with a communication impairment.  We were to assume one – stuttering, or lisping, or aphasia- and go out into the community, observing and documenting reactions. Similar exercises are performed in disability awareness classes, for which people assume the outer manifestations of life in wheelchairs, or people who are blind or deaf.

Almost universally, the non-disabled community sees these exercises as helpful. They experience temporary inconvenience, embarrassment, frustration, or anger. Then, they return to their previous state of wholeness, and supposedly are better able to understand life with these disabilities.

Hooey.

Truth is, one can never know what it is like, as Audrey Holland says, “to walk in aphasia moccasins,” just by trying on a pair.

More important, of what true value is an increase in “other” awareness of any condition?  Does it lead to empathy, willingness to contribute to legislative improvements in services, ability to improve the life of those living with those disabilities?

I doubt it.  Or at least, I doubt a lasting effect.

So why do we feel so strongly about Aphasia Awareness, and the month of June as its designated national goal?

Most of us believe in the power of awareness for change:  that somehow, were people in general more aware of a bad situation, improved everything would follow.  Is this the case for climate change? the lives of homeless people?  those going hungry every day?

Awareness without action is not particularly laudable.

Yet, here I am, with an Aphasia Awareness month idea.

For the next few weeks, I’ll be posting brief entries on the blog:  Aphasia Haiku, that have at their core,  the relationship and reflection aspects of my work.  Will it make you more aware?  I doubt that.  Moreover, I don’t care one way or the other.

It is merely another offering.

Have a taste.

Aphasia Awareness Haiku #1

I can see you.
If I cannot say your name,
Can you see me?

 

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“No one reaches out to you for compassion or empathy so you can teach them how to behave better. They reach out to us because they believe in our capacity to know our darkness well enough to sit in the dark with them.” Brene Brown

A quick review of my last few posts reveals a lot about my focus:  contemplation of sadness and loss, or moving toward ending.  Why do I choose to write so much about these, and so little about the beginnings?  Because they are there you know:  the times people with aphasia make a discovery about a nascent talent, or talk about a success that they experienced last week, or when they share photos of the grandkids, or a recent vacation. There is laughter in my therapy room.  I can feel real joy in the partnership. Yet, few of my posts document that.

I think part of the reason is that the people I see in therapy, even with their great successes, continue to feel “less than” and share that with me.  It is not my job, then, to change the subject or find some silver lining to talk about.  They know what they are feeling and they need someone to acknowledge that.  So often in their lives, the people who care for them the most find that acknowledgement too difficult, too painful.  It is like falling down the rabbit hole with Alice; you just don’t know what you will find at the bottom or if there will be a way out.

So, readers, know that I laugh.  That we laugh.  But that basically I’m there for the hard part.

Bring it.

light and dark

 

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“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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