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

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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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“Sharing is sometimes more demanding than giving.” Mary Catherine Bateson

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A good friend is someone who knows more about you than you do.

One such friend told me that as a young woman, I could stand on a street corner waiting for someone with such aplomb that it would seem as if I were not even there.

I think I learned early to distance myself from many things and people, and when I began my professional career, I’m sure it was the same.  Read for example, a poem I wrote and had published in ASHA magazine, about my first encounter as a treating therapist with a person who had global aphasia:

“Good morning.”

“Yes.”

“How are you?”

“You,” with head nod.

And I wheel you in to begin.

“House.   House.   House.   House.”

“Yes?”

“House,” again, with reassuring tone.

“You.”

And “House.   House.   House.”

Forever, “House.”
Until I am sure one of us will scream and strike the other.

So, “House.”

And it comes.

“House.”

I smile and am pleased in my professionalism because you have said

“House.”

We should go to that house,

outlined so nicely on plastic-coated card.

Knock on the door.

Have a cup of tea.

Laugh to see the rabbit spread his bread with treacle.

“House.”

You smile, pleased that I am pleased

while I turn and begin,

“Sugar.   Sugar.   Sugar.”

I wore a white coat in those days:  armor against connection.  The idea of sharing myself with the people I sat next to day after day, was not acceptable to me.  I saw it as unprofessional.  And so, when the sadness of someone’s story threatened to overwhelm, I would blink back tears, and avoid more than a light touch of reassurance.  I felt it was important to create a safe space for people with aphasia to tell their truths, unhindered by the connections of husbands, wives, children; free of any concerns of pulling those who loved them down into their own pit of emotions.  At least, that’s what I told myself.

In reality, I did not want to share myself with them.  They knew nothing of my joys, fears, family, though I knew theirs.  It was a decidedly professional relationship with feelings moving only one way.

I don’t know when it changed exactly, when I began to realize that the very core of the therapy depended upon relationship.  Certainly the Life Participation Approach to Aphasia validated what I was feeling, and gave me courage to connect.

Yesterday, I saw three clients at the office.  The first one had talked to me the previous session about her pesto, born of her prolific garden basil.  She handed me a brown paper bag, holding a container filled with homemade pesto and some grated cheese.  I used it with the grilled chicken I had planned for dinner, took a photo of it, and sent it to her via email.

pesto

In the next session, I was in the middle of an exercise when the gentleman with aphasia grabbed my left hand and turned it over.  Two weeks ago, I had told him how I wound up in the ER with a cut finger and needed stitches.  He was adamant about seeing how it was healing.

And at the end of the third session, someone I’ve known for several years, halfway out the door, turned to ask about my son, who is making a life decision that troubles me.  Having raised two sons of his own, he cautions me about trying to push back, and to accept what my son is doing and why.

Somewhere in all of that afternoon, I did some good clinical work as well, but when I left the office, it was more about how these three people are somehow as much in my life, as I am in theirs.  I’ve worked hard to get to this place.  It’s a good place.

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…Every time there are losses there are choices to be made….Henri Nouwen

I’m a TED talk junkie.

I surf through the unending videos  to see if there’s anything of interest.

I always find something.

There are many videos about the journey with a disability.  I confess, most of them upset me, for although I appreciate that each individual travels his own road, so many of them celebrate the  ideal image of the person with a disability.  This includes the ability to triumph above all odds, overcoming depression, physical limitations, and becoming a better person, all in the service of regaining life as it was before.

And this, my friends, is hooey.  Unless your disability is temporary, or minimal, it is virtually impossible to return to what was.

And so, I was refreshingly surprised by Janine’s talk, which began sounding like the typical recovery myth, but was not.  Janine’s story is about profound engagement in a new activity with the same zeal and drive that she gave to her career as an elite cross country skier.  Loving it, being carried away by the flow that it creates.

Life participation is this.

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Courage is found in unlikely places. J.R.R. Tolkien

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There are individuals who, faced with extraordinary circumstances, elevate themselves in deeds the rest of us find astounding.  In turn, we designate them as special human beings, whose achievements go beyond anything we identify as possible in ourselves.

Our culture, which values courage, often entreats persons with disabilities to search for an ideal image – a hero who climbs Everest in a wheelchair, another who despite ALS, goes on to become one of the most brilliant physicists we have known, and many others whose names and achievements are part of our communal hero photo album.

Gabrielle_Giffords_recovery Michael J. Fox Stephen Hawkings fdr

When you sit with clients who have aphasia, over time, you are witness to the evolution of a changed life.  There is infinite courage there, though only rarely may you read about it in a newspaper profile, or watch it unfold in a documentary or published photos.  It is the courage to greet someone on the street, to make a telephone call, to order in a restaurant, to wish a grandchild “happy birthday,” to sing in the church choir, to say, “I love you” to someone who shares the current journey, and all of the ones that preceded it.

When I see wartime photos, the general standing in a jeep in the midst of the long march, my eyes soon turn to the infantry men surrounding the jeep, facing the unknown, and planting one foot in front of the other.

People with aphasia:  I see your steps.

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