Time to say goodbye

img_3312On Christmas Eve, we lost our Kai to what must have been a sudden, fatal heart attack.  It was very fast, and completely devastating.  Kai was a part of our lives for 15 years, and his presence is so thoroughly enmeshed in all of the physical spaces in this house, and those we cannot see within ourselves, that we cannot breathe without thinking of him.

So, why am I posting this here, on a blog about relationship and reflection in aphasia?  I’m not entirely sure, except to say that in mourning his loss, I feel completely connected to everyone’s loss:  of life, of love, of communication, of connection, of thought, of mind, of soul.

It is so easy to say that time will bring less pain, less thinking about the past, less longing for an anticipated future.  Is this not what people with aphasia feel when they come to us at some point in their journey, and we stand, resolute in our feeling that things “can be better” in some ways, in some time?

What if we are wrong?  What if things are not really improved as the months and years progress, but it is simply a matter of the web time spins between the event and our present state, that permits us to go on?

How long is the right amount of time to wait?

And how does this pain ever stop?



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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.

Remembering him today and so reposting this entry.

Relationship and Reflection in Aphasia Therapy



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…

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Reflection on disability and identity: the neverending story.

On November 19th this year, Marilyn Certner Smith and I will be presenting on relationship and reflection in aphasia therapy at the national convention of the American Speech-Language Hearing Association in Philadelphia.  As usual, we are tweaking slides and engaging in conversation about  what it is we want to share up until the last moment.  Today, looking at the section on disability and identity, I found some notes that I had written at least five years ago.  I’m reminded of times when, sorting through old papers, you find a paper or story you have written that seems so much better than what you can do today.

Carol Pound, an aphasia philosopher who worked with UK Connect in its early days, has written extensively on identity.  She tells her personal story, in which, as a potential international tennis champion, she is injured, and left with permanent and intractable pain.  The subsequent alteration in her life and persona, she felt, was something that made her more vulnerable, and, perhaps allowed her to connect with clients more genuinely.

This slide illustrates a point she made:



And here are my old notes, written in response to her discussion:

This makes sense when looking at the traditional ways we approach therapy: the client is damaged goods, the therapist is the fixer, and the goal is to strive for normal or near normal function. Pound talks a lot about the “seductive” notion of cure. We get sucked into it and so does the person with aphasia. It is a promise we cannot fulfill, but we make it anyway. We spend virtually no time in our training learning how to help people INTEGRATE the new identity of person-with-disability, let alone our own reaction to what that means for us as therapists. It means having to listen to the suffering narratives, the stories of who they were “before,” and accepting that we cannot make the aphasia go away, or we cannot teach compensatory strategies, or a million other things we hold dear in our profession.   This, the decade of the brain, is exciting in the projection of a future in which we can zap a cortex and plug it in to exercises and make it better. Is it also perhaps a retreat into the past philosophy of our role as fixers? Are we afraid to go forward into the inner self, accepting disability, and helping others with the new narrative?

In my work at rehabilitation hospitals, I have seen the anger and frustration that builds in speech-language pathologists who deny this reality.  They are stymied at what seems like a lack of motivation or dedication on the part of the client, and at their own feelings that rise up when they cannot get the desired outcome. Threatened by the enormous challenge of an empathic effort to understand what the client is feeling,  they retreat into science, talking about statistics in EBP studies to anxious wives, or the relationship between site of lesion and symptomatology.  Rehab, by definition, is the place where people go to get better, not the place to integrate a new reality.

It is safe there, in the world of statistics and probabilities and research studies which cite percentages of improvement with this technique or another.  How, then, to learn to love the place where things are totally unknown, and change the therapist narrative?

Hoping to address that a bit more in Philly.



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Through the mirror of soundcloud


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.


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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