The Word Escapes Me: Voices of Aphasia

By Ellayne Ganzfried and Mona Greenfield

A loss for words...something we all have experienced. Imagine living each day trying to find the words, understand what is being said, having trouble reading and writing. Welcome to the world of aphasia. This book provides much needed insight into this devastating communication disorder through the eyes of clinicians, caregivers and persons with aphasia.
Increase your knowledge of aphasia and learn strategies to increase public awareness of aphasia. Explore innovative approaches to aphasia rehabilitation and groups. Read personal and candid stories of frustration, courage, hope, love and acceptance. Words can escape a person but compassion, respect and humor will always remain.

• Language: English
• Publisher: Balboa Press
• Release date: Dec 9, 2016
• ISBN: 9781504367448

Ellayne Ganzfried

Mona Greenfield, Ph.D, LCSW, CCC-SLP, is a speech-language pathologist and clinical social worker. She has combined her training to develop a program for individuals with neurogenic disorders utilizing a holistic approach to acceptance, rehabilitation and healing. Ellayne S. Ganzfried, M.S., CCC-SLP is a speech-language pathologist and the former Executive Director of the National Aphasia Association. She is a Fellow of the American Speech Language Hearing Association. Ms. Ganzfried has extensive clinical and administrative experience. She has written articles and presented regionally, nationally and internationally on a variety of topics including aphasia, rehabilitation and leadership skills.

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Copyright © 2016 Mona Greenfield, Ellayne S. Ganzfried.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the authors except in the case of brief quotations embodied in critical articles and reviews.

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The authors of this book do not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the authors is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being. In the event you use any of the information in this book for yourself, which is your constitutional right, the authors and the publisher assume no responsibility for your actions.

ISBN: 978-1-5043-6710-3 (sc)

ISBN: 978-1-5043-6711-0 (hc)

ISBN: 978-1-5043-6744-8 (e)

Library of Congress Control Number: 2016916305

Balboa Press rev. date: 11/19/2016

Contents

FOREWORD

Nicole Apostolou, MS, CCC-SLP,

In Collaboration with Susan Yankowitz

ACKNOWLEDGEMENTS

CONTRIBUTOR BIOS

INTRODUCTION

The Birth of a Program for Aphasia

Mona Greenfield, PhD, LCSW, CCC-SLP

CHAPTER 1

Let’s Talk about Aphasia

Ellayne S. Ganzfried, MS, CCC-SLP

CHAPTER 2

The New Normal: Recovery and Healing

Mona Greenfield, PhD, LCSW, CCC-SLP

The World of Aphasia

The Welcome

Wholeness and Wellness

CHAPTER 3

Professional Perspectives

Social Work

Mari Timpanaro, LMSW, LSW

Melissa DeLong, LGSW

Kim Singh, MSW

Amy Samelson, LMSW

Speech-Language Pathology

Nicole Apostolou, MS, CCC-SLP

Karen Han, MS, TSSLD, CF-SLP

Nursing

Susan Bluhm, RN

CHAPTER 4

Aphasia and the Arts

Ellayne S. Ganzfried, MS, CCC-SLP

Mona Greenfield, PhD, LCSW, CCC-SLP

Gordon Sasaki, MoMA Educator

Reflections contributed by Fran and Aaron

CHAPTER 5

The Power of Storytelling

Ellayne S. Ganzfried, MS, CCC-SLP

Mona Greenfield, PhD, LCSW, CCC-SLP

Larry Rosen, Moth Community Program Manager

Carly McCollow, Moth Community Workshop Coach

Janet Kim, Moth Community Workshop Coach

Stories contributed by Lindy, Fran, Lee, and Yvonne

CHAPTER 6

Voices of Aphasia

Stories by Al, Lindy, Lee, Yvonne, Tamar, Avi, D’Angelo,

Fran, and Rob

CHAPTER 7

A Helping Hand: Caregiver Stories

Home Health Care Attendants

Mona Greenfield, PhD, LCSW, CCC-SLP

Stories by Ina, Chad, Helen, and Janice

CHAPTER 8

Aphasia Advocacy

Let’s Make Aphasia Front Page News

Ellayne S. Ganzfried, MS, CCC-SLP

Aphasia Training for First Responders

Stephen Symbolik, MA

EPILOGUE

The Voice of Aphasia

Rebecca K. (Rivky) Herman, MS, CCC-SLP

Moving Forward: Lessons Learned

Mona Greenfield, PhD, LCSW, CCC-SLP

GLOSSARY

BIBLIOGRAPHY

This book is

dedicated to everyone who has faced

adversity and felt like giving up. Trust in yourself

and never lose hope. You can do anything!

FOREWORD

Nicole Apostolou, MS, CCC-SLP, In Collaboration with Susan Yankowitz

Aphasia is usually described as a loss of language or speechlessness, words clear and useful for doctors, clinicians, and caretakers but clearly inadequate to the complex experience of ‘wordlessness.’ The playwright Susan Yankowitz faced a similar problem when her friend, the theater director Joseph Chaikin, became aphasic and asked her to write a play that could communicate the inner world of a person who could no longer communicate. The irony was not lost on either of them. But when he suggested that the central character be an astronomer, she found the premise for Night Sky, the play she ultimately wrote and he directed. As she writes in her introduction:

"I began doing research on both aphasia and astronomy, and discovered the amazingly

apt metaphor upon which the play came to be built: the connection between

the black holes in the universe and the dark matter of the brain, areas in

which light (understanding and thought for the aphasic) is trapped,

invisible to the observer but nevertheless present and struggling to reveal

itself. Because the mind, the intelligence of the aphasic, can often be

intact -- in Joe’s case, stunningly lucid – while the route from brain to

mouth is, day after day, a minefield or obstacle course."

As speech-language pathologists, we are always taught the clinical background, the theory, the jargon and the techniques to treat an individual. We come in with our tools of the trade and begin the often slow process of rehabilitation. We assign home practice and give advice, but often we lack the time to sit and counsel individuals about the new world they are entering. This book hopes to offer more of the insights and understanding gleaned over the years. It is filled with the stories and perspectives of clients, clinicians, caregivers and family members, their struggles and successes, and their growth as human beings with aphasia. Obviously, many aphasics would like to revoke their membership in this group they have involuntarily joined, but time and time again, we have seen them demonstrate an extraordinary spirit and resiliency to persevere through each day as they confront, accept and even embrace their changed lives.

Look at cosmos and you see:

Great spaces between stars.

Now for me, spaces between words,

holes listening, holes talking.

I search many truth I feel but cannot express.

Ideas in head but pure— *poor* words.

I am aphasia,

Anna aphasia.

You know story Alice Won—*Wonderland*

fall down black hole

not die but explore new world

Now better my open heart.

Surprise in living, everyday.

I work find shine light.

Night sky beautiful

And miss- missing, and mystery.

Wonder—

Wonder full.

I. You.

All world.

Speech less.

We hope that this book will serve as an inspiration to those who find themselves in this ‘new normal.’ You are not alone.

ACKNOWLEDGEMENTS

This book was inspired by many persons with aphasia, and we are grateful to all these brave individuals. In particular we would like to acknowledge Al. Al had a stroke and is a participant in Metropolitan Communication Associates (MCA), a therapeutic community founded by Dr. Mona Greenfield for individuals with neurogenic disorders. Al relentlessly wrote compelling stories about his experiences during and after his stroke. Sharing his journey helped him process what had happened and motivated him to move forward. It was Al’s writing that encouraged and empowered us to create this book. Thank you to all the courageous contributors who have honored us by allowing us to intimately share in their aphasia journey. A very special thank-you to Al for his hope and the realization of dreams that have come from his pages of stories about aphasia. Everyone who knows Al is inspired by him!

We would also like to acknowledge the support of the therapeutic community created by the hard work of individual participants in the program, as well as their families, caregivers, and the program’s professionals and professionals-in-training. They have all made the aphasia program flourish with a real sense of the whole person, not simply a person with a diagnosis of aphasia who needs to relearn language and communication skills. We are grateful to all those that have taken the time to learn about aphasia and educate others. It is through those advocacy efforts that we can increase awareness of aphasia. Special thanks to The Moth and the Museum of Modern Art (MoMA) for their collaborations. We have the utmost admiration and respect for the entire aphasia community.

This book would not have been possible without the tireless support and efforts of many people. We want to specifically acknowledge several of them.

Co-Acquisition Editors:

Nicole Apostolou

Yvonne Honigsberg

Mari Timpanaro

The co-editors assisted with planning, organizing, editing, interviewing, providing creative input, helping people with aphasia to write their stories and keeping everyone on track!

Photography

Nicole Apostolou

Ira Ganzfried

Chad Ruble

Stephen Symbolik

All Things Editorial including Editing, Formatting, Research and Advising

Courtney Brodie

Editing

Stacey Cohen

Temma Ehrenfeld

Legal Advisor

Michelle Epstein

Original Art for Book Cover

Lindy Grant

CONTRIBUTOR BIOS

Aaron

Aaron had a stroke on December 29, 2011 while working out at a gym. As a result, he had severe aphasia—he was unable to understand, speak, read or write a single word. With resilience and optimism, he attends individual and group therapies and works hard every day in regaining his language abilities. Little by little, he is getting better.

Aaron is from El Salvador and owned a tea business before his stroke. Aaron met his wife through salsa dancing. With the love and support of his wife, Aaron lives a happy life with aphasia.

Al

Al had a stroke in 2010, when he was home by himself. Prior to his stroke, he worked for an airline company and did extensive traveling. Al lives with his wife, who is his caregiver. Before this stroke, Al says he was very shy, but after his stroke he became very talkative. Al participates actively in many support groups.

Amy Samelson, LMSW

Amy is an experienced LMSW practitioner with strong alliance and engagement skills that build on where the client is at in the therapeutic process. She has a strong background in individual therapy and leading groups for clients with trauma, traumatic brain injury, and co-occurring diagnoses.

Avi

Avi had a stroke in 2007, when he was 35. His aphasia affects his speaking, writing and reading. Avi loves to gather people together (disabled and their loved ones) for outdoor sports, museum-going, and other activities. He is the founder of New York Outdoor Club, and has a penchant for extreme sports, including sky-diving and scuba diving.

He is also a tireless advocate for aphasia, and speaks to many speech therapy classrooms and other audiences. He helps train EMTs and other affiliated health professionals in recognizing and working with people who have aphasia. He participates in countless activities, including acting in plays through an aphasia group, and traveling to Israel and the Caribbean. He hopes to go back to medical school and become a doctor, specializing in emergency medicine.

Carly

Carly had a stroke in 2010. Prior to his stroke, Carly worked as an architect and was an avid skier and golfer. He traveled extensively around the world and shares his experiences with clinicians and friends. Although Carly uses a wheelchair, he is motivated to walk with the use of a cane. He is a very hard worker and never gives up.

Carly McCollow

Carly is a teaching artist in New York City. She has taught theater with the Brooklyn Academy of Music (BAM), Ping Chong & Company, Arts for All, and Theater Mitu. Carly facilitated storytelling workshops as a Lead Coach with The Moth. She has also taught Photovoice digital photography workshops with older adults through the Healing Arts Initiative. Carly is pursuing an MSW at the Silberman School of Social Work at Hunter College and has completed the Community Word Project’s Teaching Artist Training and Internship Program.

Chad

Chad is the founder of Tapgram, an assistive messaging platform that he originally designed to make digital communication easier with his mother, a stroke survivor. Tapgram currently helps thousands of people stay connected with its easy-to-use interface (www.tapgram.com). Chad is a former broadcast journalist and development executive for branded entertainment, who is now a full-stack web developer. He is on the board of the National Aphasia Association. Chad lives in Brooklyn with his wife, two children, and a border terrier.

D’Angelo

D’Angelo is the father of 12-year old Nikolas, and was a studio owner, record producer, songwriter, manager, road manager and truck driver before his stroke on Easter Sunday 2011. D’Angelo has been dealing with aphasia challenges ever since. He’s been working hard on speaking strategies, and has made huge improvements. Now, music is not the focus of his life. He still has his equipment, just in case he gets that musical bug back, but now he take photos, mostly of architecture, and edits the pictures. He also works out a lot. Going to the gym helps keep him focused. He always has another goal to shoot for.

Ellayne S. Ganzfried, MS, CCC-SLP

Ellayne is a speech-language pathologist and the former Executive Director of the National Aphasia Association. She is past President of the NYS Speech Language Hearing Association (NYSSLHA), Long Island Speech Language Hearing Association (LISHA) and the Council of State Association Presidents for Speech Language