Lisa dances with aphasia

A stroke victim must override paralysis to meet Todd halfway between hemispheres in this intimate exploration of nonverbal disability. But "any dance worth doing is struggle…"

Chapters in this Episode:

1. Our initiatives
2. The history of dance
3. Breaking down borders
4. Jackie joins in
5. The power of poetry
6. The poem: "In Praise of Your Aphasia"

Chapters

• 0:00 Our initiatives
• 2:58 The history of dance
• 5:21 Breaking down borders
• 7:10 Jackie joins in
• 10:33 The power of poetry
• 14:46 The poem: In Praise of Your Aphasia

Transcript

Todd  0:00  
Two exciting initiatives have been taking shape here at TAPIT headquarters in Austin, Texas. The first is the International Bureau of Custom Poetry, which I told you about in our last episode. It's the world's only agency representing major American poets, who are standing by to write custom poems for you. They set their fees, they use our standard contract, and you get three hours of conversation and a custom poem written just for you, like I do for strangers here on the show. The whole experience can be kept private, if you prefer, or it can be recorded for the podcast. Poets in the Bureau include Richard Blanco and Sasha LaPointe from prior episodes, plus Dorianne Laux, Aimee Nezhukumatathil, Samiya Bashir, Nick Flynn, Major Jackson, Philip Metres, and Brian Turner.

The Bureau gives you a chance to make literary history, and there are infinite ways to utilize Bureau poets to celebrate someone you love, work out a meaningful issue in your life, mark a major occasion, preserve a family story or bring a community together. Complete details are at poeminthat.com/poets, or leave me a message on my listener line 808-300-0449.

The second initiative underway at TAPIT is our new pop-up poetry therapy clinic. Styled like a medical tent and emblazoned with the words, "Poetic Help, Five Cents," the poetry therapy clinic has already popped up at street fairs, book festivals, and public parks in several states. It's outfitted with a live mic into which I ask people passing by to reflect for a few minutes on what's most poetic about their lives. You can follow the pop-up poetry therapy clinic on our Instagram page @poeminthat. If you'd like me to pop up in your neighborhood, let me know at 808-300-0449.

The poetry therapy clinic recently popped up in Maryland at the annual conference of the National Association of Poetry Therapists, and that's where we begin this episode of There's a Poem in That. On this podcast, I help strangers discover the poetry in their most intimate stories.

I'm Todd Boss (words) and this (are so) is Lisa.

Lisa  2:36  
...special to me.

Todd  2:37  
Lisa walks with the help of a cane, but when she saw me in the pop up poetry therapy clinic, she made a beeline for me. She swiveled herself right into the tent, sat down in the chair next to me. 

Lisa  2:48  
My life is... 

Todd  2:50  
...with a big smile on her face...

Lisa  2:51  
...complicated...

Todd  2:52  
and just started talking. 

Lisa  2:54  
I want to, you know, tell you about it. 

Todd  2:58  
Lisa was a ballet dancer and an associate professor of dance at the University of Texas at El Paso. She has choreographed more than 40 dance works and was head of the dance program for a while. She has danced with companies in the US and abroad,

Lisa  3:13  
But my ballet dance work was cut off.

Todd  3:19  
Yeah, I understand that the stroke that you suffered was, what, was it, four years ago? 

Lisa  3:26  
Four years ago, yeah.

Todd  3:28  
And you lost the use of your left side, right side, left side...

Lisa  3:35  
Left side, left side. I mean, no, right side, right side.

Todd  3:39  
right side.

Were you right handed? 

Lisa  3:44  
Yes, I was. 

Todd  3:46  
And so, boom, there goes a whole bunch of functionality. 

Lisa  3:50  
Yeah, yeah, and, and then I've spoken, you know, so pretty and, and that, you know now I've gone to unpretty.

Todd  4:10  
Lisa suffers from aphasia, a language disorder that results from brain damage.

Lisa  4:15  
I struggle with the words, and, um... 

Todd  4:18  
Lisa's disjointed way of speaking, and can be thought of as a rare opportunity to witness the audible struggle between the accessible half of her brain's language center...

Lisa  4:29  
I struggle with the words and 

Todd  4:31  
and the inaccessible half... 

Lisa  4:32  
idea of my words. 

Todd  4:35  
Does your mind get ahead of you? Or does...

Lisa  4:39  
Yes, oh yes, oh my God.

Todd  4:44  
And I imagine you were very articulate once.

Lisa  4:47  
Oh yeah, oh yes. I was a teacher, so my speech was good, and my speech was proper. Right? 

Todd  5:01  
Right.

Is it hard to have patience with yourself? 

Lisa  5:04  
Yeah. Because...I...because I know, I know what's the deal, but I completely say or...or thought the wrong thing.

Todd  5:21  
You can feel the muscle in it, as if she were down on a mat, physically wrestling her thoughts.

Lisa  5:26  
The border, it's right here in my mind.

Todd  5:31  
Living in El Paso, on the Mexican border, it's no surprise, Lisa uses border metaphors to talk about her disability.

Lisa  5:39  
In the brain, I...I thought, and I do...thought and do...and, and cross, cross the border, cross the border, right? I mean, I do and, and I thought. Yeah? 

Todd  5:39  
Yeah.

She's come to me for a poem, so I'm alert to images and metaphors in her storytelling, but the border metaphor is tricky, as it implies further limitation.

Lisa  6:12  
But I'm stuck. I'm stuck, and... 

Todd  6:14  
I write it down, but I'm suspicious of it.

Lisa  6:17  
I can't, I can't do. I can't do.  I can't, can't speak. I can't...woo, you know?

Todd  6:25  
Yeah, and that's happening in real time, and there's nothing you can do about it.

Lisa  6:30  
Yeah, right, right, but, but you know, if you're slow, if you're slow, or I'm slow, there will be the answer.

Todd  6:41  
Yeah, it's in there.

Lisa  6:43  
Yeah. 

Todd  6:45  
It's almost like the keys have all gotten mixed up on your key ring. 

Lisa  6:51  
That's right, but just just the key that locks the border.

Todd  6:58  
As part of her healing process, Lisa attends an aphasia support group in El Paso, led by a speech language pathologist at Chrysalis Aphasia and Adult Speech Rehabilitation: Jackie Alvarado.

Jackie  7:10  
it moves me and drives me to see somebody with aphasia, because beyond the halting and the problems finding their words and what, they have so much to share and so much to say, and it's stuck inside of them.

Todd  7:26  
I talked to Jackie about Lisa's case so I could understand more about the work she's doing and the progress she's making.

Jackie  7:33  
As a speech therapist, Lisa has totally blown me away. She just has a very driven personality. Her progress is intrinsic. She has, you know, driven herself to struggle to put one to two words together, to, you know, say a phrase, to now being able to read. She's now able to write. And initially, that was something that she was definitely unable to do before, when I first met her. 

Todd  8:03  
She often will talk with me about the border, she calls it, and she uses that metaphor to talk about sort of the chasm, the divide between what she can say and what she wants to say. 

Jackie  8:17  
I've worked with numerous people with aphasia, and you know, the common thread is this level of frustration, this level of grief, in knowing what you want to say and feeling what you what you feel, but then not being able to cross that border and actually express it to your partner or to, you know, a friend, because our words, you know, our life, and that's how we engage with our environments and with our loved ones. And when you take that away from somebody, they lose so much.

Todd  8:47  
Disability contains within it many super abilities, one of which, if we accept the challenge, is to cause us to reflect. To reflect on frailty, on the one hand, and resilience on the other, and to trace these ideas down into our own imperfect hearts, minds and bodies. (Music)

It must have been quite a journey for you to, uh, to have this happen and to have said goodbye to ballet, in a way.

Lisa  10:14  
Yeah. But you know what? I'm 70 years old, and...and, you know, I just, I'm done with that. I am done with that.

Todd  10:30  
Okay, so it's...so that part...

Lisa  10:33  
Now the...now, the poetry thing is better.

Todd  10:37  
To my surprise, I learned that poetry is part of her practice. 

Lisa  10:41  
There will be pirates inside of me. Great volumes of sound, great volumes of words. Stand with your feet like the roots going downward into the earth, flowing up and up again to the sky. Be demanding, be hot tempered. There will be fireworks and bells ringing. I don't want to be like I am. 

Todd  11:13  
Is it easier to process your feelings in poetry? Or...

Lisa  11:19  
Yes, yes.

Todd  11:20  
Easier than in speech?

Oh yeah, good God, 

Wow.  Is it because there's no pressure and you have more time? 

Lisa  11:30  
Well, yes, but I blocked the speech and arm and leg and...and...and family and, you know, I blocked that out, and so I feel that I'm speaking to my mind, you know? I'm worried about it or, or speak about it, and, or, you know, my angel.

Todd  12:01  
Oh, like an, like an angel and a devil?

Lisa  12:04  
Yeah, but, but, but Angel.

Todd  12:08  
And you're...there's a dialog between them. It sounds like you're talking to...to your mind, is what you're saying.

Lisa  12:14  
Exactly, exactly.

And I'm writing how I...how I look at things. So I'm glad for what my poetry says, because, you know, I'm aphasia, you know, and in aphasia, people don't, don't write, don't speak, don't...you know?

Todd  12:45  
Yeah, it's rare that someone in your condition can articulate what it's like to be in your condition.

Lisa  12:51  
That's right. That's right. And I know my speak is, you know, bad, but I know with my writing that I'm eloquent.

Todd  13:05  
That's really how you started to communicate to this situation that you're in.

Lisa  13:13  
That's right, that's right. 

Todd  13:15  
Wow. And do you think your other aphasia sufferers can understand your poetry better in that way as well?

Lisa  13:23  
Oh, yes. And the doctor and caregivers.

Todd  13:28  
What would you like to say to them? What do you think they need to hear?

Lisa  13:33  
Well, I'm one of them, and and I'm...I'm speaking and dancing for them.

Todd  13:43  
I had a hard time writing a poem for Lisa. I wanted to honor her struggle but not dwell on it. I didn't want disability to be my theme. I didn't want it to be about trauma or healing, because she was already healing, it seemed to me. One morning, I woke up wishing to express how healing it was for me to see her healing. And that's when the poem began to take shape. In gratitude. 

Are you there? 

Lisa  14:13  
Yes.

Unknown Speaker  14:14  
Are you at a computer? I'm going to send you the poem. 

Lisa  14:16  
Good, good, good. Okay, all right. 

Todd  14:18  
And as soon as you get it... it's a PDF. As soon as you get it, let me know, and I'll read it.

You have it?

Oh, good. I'll read it to you. Okay? 

Lisa  14:29  
Okay, okay. 

Todd  14:31  
It's called In Praise of Your Aphasia. You can see it okay? 

Lisa  14:35  
Yeah, 

Todd  14:36  
Yeah, it's just a single page, and it kind of is set out like a dance on the page.

Lisa  14:42  
Oh nice.

Todd  14:46  
What a beautiful dance you dance here for us.

What a beautiful dance you/ dance here for us,/ who sit in our/ darkness,/ programs in our laps./ What a raw, sensuous/ tension you sustain/ along the body’s limber/ borders. How well you/ remind us: any dance/ worth doing is/ struggle./ There must be a word/ (French, feminine?) for/ the mirror/ behind the barre of the mind/ beyond which/ no stroke survivor sees. Seize, survivor, stroke — no,/ seize again — & we/ seize with you to survive her, too./ We/ see her. We/ watch you wake &/ wick her./ All dance is séance,/ flames a-flicker. You swirl/ & swivel, unhinged. It’s/ haunting./ On toe-tips,/ fingertips, tip of/ tongue,/ it’s ghosts/ whose unsung songs you conjure,/ flaunting physical laws./ Do you/ hear our one-/handed applause? 

Lisa  16:28  
Oh!  Todd, you're so good. You were so good. Thank you. Thankyou. Thank you, gosh.

Todd  16:40  
In Praise of your face. It's a...it's a kind of a dance that you do to talk to me. And I think it's a really beautiful thing.

You can read this poem again at poeminthat.com, where we archive all our shows. 

Lisa  16:56  
It's a beautiful gift.  I was in tears.

Todd  16:57  
It's free to be a guest, on There's A Poem in That, but it does entail three hours of interview, during which I gather as much as I can about you before I begin to write. 

It's been a real pleasure, areal pleasure. 

Lisa  17:10  
And you helped me so much, so much.

Todd  17:22  
Okay, Lisa, take care. Take care.

Lisa  17:24  
Take care. To you too. Thank you. Thank you. 

Todd  17:28  
Iwant to thank my guests, Lisa and Jackie and the National Association for Poetry Therapy. What you hear on each episode of TAPIT is the result of many hours of work. This episode was written and produced by me, Todd Boss. Our story editor is Bronwyn Clark. Music by Esh Whitacre,

If you haven't yet picked up the phone and called my listener line at 808-300-0449, it's quite possible you simply haven't yet overcome a certain paralysis, but I'm here for you waiting and listening. How is your life poetic? Let's find out. Call me. 808-300-0449

This episode is dedicated to speech therapists and language pathologists, vigilant souls who work along the tense borderline between what can and what can almost be said.

I'm Todd Boss, reminding you that there's a poem in everything, if you're paying attention.

You lost the use of your left side, right side, left side,

Lisa  19:18  
Left side, left side. I mean no, right side. Right

Todd  19:21  
Right side.

Transcribed by https://otter.ai