HeadLines

Kirklin Clinic Head & Neck Cancer Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

July 2005

 

 

Talk to Me

By Donna McGary

 

 

Webster’s Dictionary lists 22 separate definitions for voice.  They range from the obvious, [1.] -n. the sound or sounds uttered through the mouth of living creatures, esp. of human beings in speaking, singing, etc. to the more descriptive, [5.] the condition or effectiveness of the voice for speaking or singing: to be in poor voice. They also include the political: [9.] the right to present and receive consideration of one’s desires or opinions, to have a voice in company policy and [10.]….the voice of the people.  It can be a verb or a grammatical distinction and even idiomatic as in [22.] with one voice, in accord, unanimous.

 

As human beings, the voice has a unique role in our identity.  Think of how many seminal moments in our lives are characterized by its use and individual sound.  Every parent treasures a child’s first word and we memorialize famous last words.  Countless artists have paid tribute to the sound of a lover’s hello and soft murmur or recounted the devastation of the harsh tones of rebuke and anger.  When we are happy to talk to someone on the phone we say “It’s so good to hear from you” and the ultimate rejection is “I never want to hear the sound of your voice again”. 

 

What does it mean to us, as a culture, as a society, as a member of the human race, to be able to talk?  Spoken language is a defining characteristic of human beings.  Until recently it was thought that it was what separated us from all other living creatures.  We now know that other animals, including whales, dolphins, elephants and most primates also use distinct and complex sets of sounds to communicate. In other words they have also developed language- which we sometimes can’t hear unaided and certainly don’t understand fully.  Those of us who have enjoyed the companionship of animals almost always have stories to tell about their ability to communicate with us, sometimes to an uncanny degree. However, our language appears to be the only one which has developed not just an oral culture but a written one, as well.  We have a long tradition of not only historical storytelling, but of allegory and fiction.  We tell jokes, we present stories on stage, we sing poetry…all of these require a voice.   Charlie Chaplin and Marcel Marceau used their bodies as their voices and practitioners of ASL (American Sign Language) use their hands.  We even use the word voice to describe a writer’s unique command of the language.

 

The mellifluous sound of James Earl Jones’ voice is both immediately identifiable and even ubiquitous today.  If you never heard him on stage and you didn’t know him as Darth Vader you certainly have heard him as the voice of CNN and now for Verizon- he’s actually a pretty good dancer, too!  But did you know that as a child he suffered from such a severe stutter? He actually stopped talking until a perceptive high school teacher helped him to use poetry recitation to overcome his fear and stop stuttering.  Popular culture is defined by the voices we hear on television, on the radio, in theaters and in our neighborhoods. We have examples in all these arenas of individuals who are deaf, blind, mentally or physically challenged.  The very few who can’t talk are usually either trauma victims or deaf people who prefer to sign. Maya Angelou recounts in her autobiography, “I Know Why the Caged Bird Sings” after she testified against the man who raped her when she was eight years old, and he was beaten to death, she stopped talking for five years.  She was convinced that if she spoke, someone else would die. It is no small irony that she routinely talks to audiences of a thousand people on a regular basis now- often about the importance of “making your voice heard”.   Permanently losing one’s natural voice is simply not that common.

 

Therefore, it may not be surprising that if you Google voice problems, you will in .27 seconds have 27,800,000 hits to browse through!  The conditions range from simple voice strain and laryngitis to vocal cord lesions, spasmodic dysphonia, strokes and cancer.  Some of these sites are quite comprehensive and very user friendly.  I particularly liked www.voiceproblem.org for its graphics and charts explaining how voicing works and why it doesn’t sometimes.  It is both technical and readable and addresses the many possible causes of voice problems, anatomy, and symptoms.  As a layperson with a vested interest in this issue, I found it fascinating and educational.

 

 That is important for many of us who now use alternative methods of talking, because we are not all the same.  Since you are reading this newsletter, you or a loved one has probably had cancer, but cancers are not all the same. Treatments, procedures and outcomes are certainly unique to the individual.  Not all of us are candidates for a TEP (TracheoEsophageal Puncture), some of us have great difficulty mastering ES (Esophageal Speech) or an EL (ElectroLarynx).  But I am willing to bet all of us learned to use a pen and pad to communicate at some point in our recovery process.  It is slow and frustrating for both us and our audience.  Human beings want to talk...maybe we even NEED to talk. 

 

  I am a talker and used to talk out loud to myself, particularly while I was doing household chores and alone on long car trips.  Even as a child, I found I could have a conversation with myself and frequently sorted out day to problems and aggravations that way.  Years ago on a long drive to Maine I was in the middle of one of these “conversations” when my very young son, who had been asleep in the back seat, woke up.  I was startled to hear him ask, in his sweetly tremulous, little boy voice, “Mommy, who are you talking to?”

 

Old habits die hard.  I have heard of TEP speakers who occlude to talk to themselves and I have caught myself, more than once, lifting my Servox to have a conversation with myself - especially if I am angry.  Just mouthing how you would like to tell someone off does not have the same effect!  If you take a writing class, one of the tips they give you for editing your own work, is to read it out loud.  It helps you to hear the piece with fresh ears and to assess the rhythm of your words - like hearing a piece of music played instead of just reading the notes.  As a writer…and a talker…I may have found this voice when I lost the other, but I still miss the original.

 

There is even a World Voice Day.  Since 2002, the American Academy of Otolaryngology- Head and Neck Surgery has sponsored the US observance of World Voice Day on April 16. They, too, have a web site (of course- just Google it!).  Their byline is “Listen to your voice!  It might be telling you something!”  It is dedicated to providing information and education to the general public about proper voice care, prevention and treatment. According to them, an estimated 7 million Americans have some type of voice disorder.  Obviously, not all of them have cancer; yet, according to the American Cancer Society, nearly 10,000 Americans are diagnosed with laryngeal cancer each year resulting in more than 3,700 deaths annually.  Given what we know about currently available treatments, it is reasonable to assume that nearly every one of these people has experienced some changes in his or her ability to talk normally. Apparently, we are NOT alone!  But it certainly feels that way sometimes.

 

I use an EL and among my many friends, extended family and co-workers, I am frequently their only contact with someone using that type of voicing.  I live outside of Boston- not exactly a small town - and I rarely run into anyone else using one.  I did have a “sighting” the other day, though!  I work at a retirement community and had taken the residents to a show at the North Shore Music Theater and saw a gentleman waiting in line with a Servox around his neck!  I was so excited and I tried to make my way over to him, but I got caught up in the crowd and had to get our group seated.

 

I feel like it was a missed opportunity.  There are certain things you can share only with someone who is in the same boat as you. Like how I can’t whoop or cheer during the ovations at the end of a show.  Sometimes in a moment of desperate need to communicate my enthusiasm, I have held my Servox aloft and just buzzed the loud button…kind of like holding up a lighter at a rock concert!  It’s really not the same.  Nor is laughing out loud or having a proper sneeze.  Everyone I have talked to, whether they are TEP, ES or EL users all lament the laugh issue.  We sound like that old cartoon character from the 60’s “Har De Har Har”.  Some of us miss being able to sing, even if we weren’t that good, at least we could pretend in the shower or along with the radio.  But even those of us who never did that much singing miss laughing out loud or sneezing.  The sneezing is a funny one.  We can sneeze but it’s just not satisfying…sort of like sneezus-interruptus, if you know what I mean.

 

We could all “write a book” as they say.  Recently I had the opportunity to spend some time with a “friend of a friend”.  When my friend first met him, several years ago, he was using an EL and shortly thereafter I got mine.  So she was a bit unusual in having two friends, who live in different states, in that situation.  I had not met him until now and he is amazingly fluent in ES.  He is a construction worker and realized he couldn’t work with an EL so he learned ES in a record 3 months. I was so impressed.  I can not get the hang of it.  I have tried and usually the controlled burp just triggers coughing spasms.  Although one night, in the middle of a particularly prolonged coughing spell which generally triggers burping (how special is that!) I had had enough and during a loud burp I swore like a sailor.  Well, wouldn’t you know it- I realized it had come out loud and just as clear as day and I haven’t been able to do it since.

 

But there is hope.  I am going to put in a plug for the upcoming IAL conference in Boston from August 30- September 3, 2005.  They also sponsor the Voice Institute which is an excellent opportunity to enhance your own voicing skills as well as learn how to help others to develop alternative voicing.  I am going to master ES and in the process I hope to be able to find ways to encourage all of us to exercise our voice definitions number 9 and 10.  The right to be heard, understood and respected regardless of the tone and timbre of our words.

 

Stay tuned- I promise to keep you posted on my efforts to master ES and in the meantime talk a bit about what it means to go out into public with a “uniquely identifiable voice” and a hole in your neck.

 

*        *        *        *        *
 

INTERNATIONAL ASSOCIATION OF LARYNGECTOMEES

 

54TH ANNUAL MEETING IN BOSTON HIGHLIGHTS MEDICAL EXPERTISE IN THE TREATMENT OF LARYNGEAL CANCER AND HEARING DISORDERS.

 

This years Annual Meeting of the IAL will be held at the Park Plaza Hotel from September 1 to September 3, 2005.

 

Gathered together will be over 300 laryngectomees who will gain knowledge from the premiere ear, nose and throat and hearing specialists from world famous universities in the Boston environs. Bob Mehrman, president of the IAL, was fortunate enough to gain the services of Dr. Deschler  to share his knowledge with attendees at the Opening Ceremony and Dr. Nadol for

a presentation on Hearing Loss and its Treatment.

 

The keynote speaker for the Annual Meeting is Dr. Dan Deschler.   Daniel G. Deschler, M.D., F.A.C.S., was appointed Director of the Head and Neck Surgical Oncology at the Massachusetts Eye and Ear Infirmary effective Nov. 1, 2004. The announcement was made by Joseph B. Nadol, Jr., M.D., Chief of Otolaryngology at MEEI and Chairman of Otolaryngology at Harvard Medical School (HMS).  

 

A graduate of Creighton University and HMS, Dr. Deschler is an Assistant Professor of Otology-Laryngology at HMS. He joined the medical staff of MEEI in 2000 and serves as associate coordinator of medical student education for Otolarynology and on hospital numerous committees.   Dr. Deschler has an active clinical practice and treats patients with head and neck cancer, with a specialization in laryngeal disorders and microvascular free flap reconstruction. His primary research focus is in the evaluation of laryngeal speech following total laryngectomy and pharyngeal reconstruction. He is the author of numerous papers and serves as editor and co-author for Otolaryngology-Head and Neck Surgery Clinics of North America on the topic of "Voice Following Laryngeal Cancer Surgery." 

 

Speaking on Hearing Loss and its Treatment will be Dr. Joseph B. Nadol Jr.. Chief of

Otolaryngology at Massachusetts Eye and Ear Infirmary.

Physician Profile - Joseph B. Nadol, M.D.

 

It was observing the nervous system of crustaceans that piqued Dr. Joseph B. Nadol's interest in Otology as a medical student at Johns Hopkins while spending summers exploring biology at the Marine Biological Laboratory at Woods Hole.

 

Almost 32 years later, Dr. Nadol, now Chief of Otolaryngology and Director of the Otology Service, is still involved in what sparked the early interest that has shaped his career and, in many ways, his life."The complexity of sensory structures in the field of Otolaryngology fascinated me," he says.

 

Now, the Department is creating a lab that will examine deafness at the molecular and cellular level. Information gained in the lab will help translate basic scientific knowledge into ways to restore hearing.

 

"Otology can be primarily an 'observational' discipline,’" says Dr. Nadol. "We can tell you what is happening now and what is likely to happen as someone loses hearing. But we cannot stop it from happening in most cases." His hope is that the new lab will open up possibilities for just such an intervention.  The development of this new area is just one in a series of such efforts. Dr. Nadol has been the force behind much of the growth and progress in Otolaryngology at the Infirmary over the last 20 years.

 

Epiphany #1

In the middle of his career, Dr. Nadol says, he reached an epiphany: the realization that he could accomplish more as part of a group than he ever could on his own. His motivations changed and matured, he says, as he took the reins as Acting Chief of Otolaryngology. "Success for me is measured in the success of others," he says. "Fun is in collaborating with colleagues to conceive and develop a new idea or area."

 

During his tenure, he has witnessed the expansion of the Otolaryngology Division, which focuses on ear, nose, throat, head and neck problems, from a hospital-based physician staff of three to 35. He expanded what had been an exclusive focus on auditory physiology into a broader exploration of anatomy, physiology and disease processes in many areas of the discipline of otolaryngology.

 

He has fostered research areas that parallel those of clinical care, reflecting the importance he places on basic science and understanding why something is happening. He has overseen the opening of a vestibular (balance) lab that adds diagnostic and basic science components to clinical care and has helped to create a new Division of Laryngology, which focuses on the larynx (voice box) and voice-related communication disorders and treatments.

 

He was the first to evaluate the hearing of newborns at MEEI using the auditory brainstem test, which has become a regular practice in hospitals throughout the nation. His personal research and leadership in using cochlear implants to mitigate hearing loss has strengthened understanding and treatment. His desire to investigate the process of hearing and deafness fueled his interest in the National Temporal Bone Registry, housed at the Infirmary.

 

"In most cases I wasn't responsible for all of the daily work," he says, diverting credit to others. "I just worked with people to help make those accomplishments happen."

 

Epiphany #2

An earlier epiphany -- deducing that to be his best he would have to surround himself with people who were more knowledgeable than himself -- brought him to the Infirmary. During medical training at Johns Hopkins, Dr. Nadol spent a brief time at the Infirmary under the guidance of Harold F. Schuknecht, M.D. He was so impressed with Dr. Schuknecht and the caliber of the people and minds he encountered that he was determined to practice at MEEI upon graduation.

 

In the years before he assumed his current position, Dr. Nadol honed his scientific and clinical acumen. His successes are documented in virtually every relevant journal in the field. Leading societies have bestowed on him their highest honors. He has published nearly 200 articles and books.

 

Dr. Nadol says that the more important lessons were the less medical, more universal ones.  “I learned to be able to acknowledge that I did not know the answers to many questions from Dr. Schuknecht," Dr. Nadol says. "It was a turning point in my life, a crucial step in advancing from a competitive individual to a collaborator."

 

Dr. Nadol points to another turning point, a major shift in the way he thought. He moved from being focused on present accomplishments to having the patience to develop a long-term view, for carefully planning future growth for the department he leads. "I learned about patience, about the long term, from Nelson Kiang," Dr. Nadol says of Nelson Yuan-Sheng Kiang, Ph.D., an internationally respected hearing scientist.

 

The young, aggressive medical student was transformed into a team player with the wisdom and patience to build the future of a department that is among the largest and finest in the world. Now, as an active figure in the Infirmary’s residency program, he is mentoring young physicians the way he was mentored.

 

When Dr. Nadol describes the people at the Infirmary, it doesn't seem that he is talking about co-workers. For Dr. Nadol, life and work --personal and professional -- merge. The lines of differentiation blur.  "Some people work and have outside entertainment," he says. "For me, work and fun overlap. My friends are my colleagues. My wife, Ruth, volunteers here with the Friends of the MEEI. Our trips are built around medical and scientific conferences. My work is my recreation. "I've been fortunate that the parts of my life blend," says Dr. Nadol. "I really enjoy my life".

 

 Above information furnished to HeadLines by:

 Murray Allan, Vice President, International Association  of Laryngectomees

 

Still time to sign up for this year’s IAL Annual Meeting

 

The IAL Annual Meeting runs from Thursday September 1st through Saturday September 3rd.  It is designed for laryngectomees, family members, and others.  The Annual Meeting is three days of educational and social programs on most aspects of life as a laryngectomee.  Call Toll Free: (866) IAL-FORU (425-3678) or http://larynxlink.com/Boston/2005registrations.htm 

 

************************************