Internet Laryngectomee Support
June 2001

Lary Culture?

    In December, 2000, ENT Doctor David Myssiorek, MD, wrote the following e-mail to the head/neck cancer forum:

"Dear Group,

    Next, I have a question. Deaf people have a 'deaf culture.'  There is resistance to being labeled 'hearing impaired' with preference to the label 'deaf.'  The deaf culture employs sign language, etc., which gives them a different culture.  Any other group in the population that communicates differently, has different customs, etc., has a different, unique culture.  Here's the question: Do people who have had a laryngectomy mind being labeled a 'laryngectomee,' and does the same group feel there is a 'laryngectomee culture'?  Any opinions?"

    With Dr. Myssiorek's permission, the question was submitted to the WebWhispers group.  Responses were collected and the following edited summary was sent to him:

"Dr. David,

    I find it difficult to generalize from the variety of responses I got on this issue.  I got a great many, so I will just pull some of the basics out of them."

Do object to the term "laryngectomee":

    That's the sticking point with the labels, as many others have pointed out, we are defined by a disease, by something that happened to us, and not by what we are or what we did. (Tom Harley)

    I for one resent the name Laryngectomee immensely!  The other day when I was at a meeting at the hospital with a person who is to have his larynx removed we got into the discussion of the name of the operation, which strangely enough doesn't bother me.  My wife was with me at the request of the SLP to help support the gentleman's spouse who was also in attendance.  At the age of 42 my wife had a breast removed.  To mirror Pat's remarks, my wife's name is Kris, not mastectomy Nolin.  Anyway, I dislike the name Laryngectomee when its applied to a person.  Also my name is Jack, not Lary, or any of the other derivatives of spelling. (Jack Nolin)

    When I first heard the term "laryngectomee," I thought it was just the name of the surgical procedure, "laryngectomy."  I said I would not like to be called that, any more than I am an "appendectomy" because I had my appendix yanked at age 10.  But once I understood that the term referred to my status, not just to a medical procedure, I decided not to fight it. (Paul Sampson)

Do not object to the term "laryngectomee":

    I like the term laryngectomee but since I get tired of the length of that word, I shorten it to lary when I am writing or speaking with others who understand. (Pat Sanders)

    It doesn't bother me - at all. People, when they understand - and believe me, I live in a very rural area (many have never heard the word laryngectomee) - are very considerate. (Linda Hill)

    Do I mind being labeled a laryngectomee? Hell no - what else would be appropriate?  "Vocally challenged?"  With the foghorn I had for a voice before my surgery, I was more "vocally challenged" then.  As I like to say, I was never a threat to Pavorotti. (Stan Mruk)

    And, no, I don't mind being thought of or referred to as a laryngectomee. (Charlie Richmond)

    I really didn't give any thought to being called a Laryngectomee; and now that I have I don't mind being called one.  I have only one question: how many people know what it means?  Perhaps we need to educate the public as to who and what we are. (Helene Stinneford)

    I do not mind being labeled a laryngectomee. (Bob Herbst)

    So far the only people to refer to me as a laryngectomee or "lary" are WW members ... even my doctor and SLP do not call me that - they simply call me by my name. (Cyd Kibbey)

    Curious, how some medical conditions have lent themselves to descriptive terms (pellagrin, amputee, laryngectomee), and some have not.  One never hears of an appendectomee, or liposuctionee, for instance. (Ron Langseth)

    To answer your first question, I've never thought of myself as being "labeled" a laryngectomee any more than I thought of myself as being "labeled" tall, or fat (when I used to be), or grey-haired, or "labeled" any number of things that could apply to me.  I AM a laryngectomee, I AM tall, I AM grey-haired.....so what!!!  Use whatever you think applies to me.  As for my personal preference, I usually refer to myself as a member of the "hole in the neck gang." (Mike Rosenkranz)

    I have been called a lot of things and lary is nice compared to them. (Tom Gillen)

    So let's forget about the "Stigma" of a label - let's use it.  Call me a laryngectomee, call be a lary, call me a neck breather, call me an artificial unit speaker, call me a friend.  I love them all. I am a survivor not a victim and calling me by my operation does not label me unless I want it to.  And I choose not to be offended. (Judy Ramboldt)

    I don't mind being called a laryngectomee for that is what I am.  It is a technical term for something that has transpired in my life.  When people get used to the term it will beat all the explanation I have to go through now.  I don't think it is a label or a cross to bear.  If it walks like a duck and quacks like a duck it sure isn't a Walrus. (Patty Jones)

    My name is Marianne Peereboom and I AM a laryngectomee.  Wanna know something else?  Because I AM a laryngectomee, I met all these great people I know now.  I would not have met them if I wasn't a laryngectomee. 

    WE IS WHAT WE IS.  What's in a name (as long as it's not nasty)?  (Paul McGreevy)

    I am very happy to be called a "Laryngectomee," since the alternative would be "The Late Jerry Lowe" (Jerry Lowe)

    I don't mind being referred to as a laryngectomee (Marie Sherwood)

    I have never minded the word laryngectomee or lary.  In fact, I use it often when I am talking with people who have not met me before.  We have to explain what has happened to us.  The majority of the population can somewhat comprehend breast cancer, colon cancer, prostate cancer, liver cancer, etc.  But for some reason, our cancer is a mystery.  And that is strange because what has been done is right out there in the open for all to see. (Judy Ramboldt)

    I have no objection to the term laryngectomee.  It is an accurate, technical, description.  I also have no objection to the term "neck breather," as it is also an accurate description, but somewhat more of a vernacular expression. (Philip Clemmons)

    I am a lary (not first and foremost by any means), but it is on important part of who I am. (Bob Herbst)

    I are a "lary" and damn proud of it. Otherwise I might be dead or mute. (Charles Lamar)

    I have no objection to be called a laryngectomee, that's what I am.  I would object to the label, "speech impaired" though, as most of us do have a voice. (Randy Lemster)

    It is my personal experience that very few laryngectomees object to the term. (David Blevins)

    I have never had any problem being a laryngectomee, but seldom use the phrase "lary."  Actually I like the sound of "laryngectomee."  Sounds like a county or river in Mississippi. (Jim Doby)

    In the first place the only persons who call us laryngectomees are doctors, SLPs, and each other.  Most of the world, even in the medical care community, know not what that word means.  So, of course, since we are all in this together, it is totally acceptable and 'user friendly.' (Martha Reed)

    I don't particularly mind being called a laryngectomee, like employee, but I have often wondered why the medical community started that, if indeed they did, when people who have had other types of surgery are not called by that surgery - like appendectomy/appendectomee. (Pat Morgan)

    "Laryngectomee" is not a name, an insult or a stigma; nor should it be regarded as name calling.  It is simply a descriptive word. (Pat Sanders)

    I don't mind being called a laryngectomee for that is what I am.  It is a technical term for something that has transpired in my life.  When people get used to the term it will beat all the explanation I have to go through now.  I don't think it is a label or a cross to bear.  If it walks like a duck and quacks like a duck it sure isn't a Walrus. (Patty Jones)

    I have found that the only people that call me a "laryngectomee" are either doctors or other LARYS.  The average JOE on the street doesn't seem to know what was done to me. (Tommy Cook)

Believe there is a lary culture:

    As far as a "CULTURE" is concerned, I think there is.  We have to live differently from other people.  We had to "reconfigure" our life style, our daily routines, our thought process.  Like I have said in previous e-mails, being a LARY is all-consuming to me.  Everything I do revolves around my new lifestyle. (Tommy Cook)

    I feel that we do, indeed, constitute a different culture. (Charlie Richmond)

    A laryngectomee culture? In my opinion, sort of. (Stan Mruk)

    I think there is a culture of Laryngectomees as seen in all of the voice clubs throughout the land.  Personally I enjoy being a part of that culture for I have met some truly fine people who have overcome a lot to survive and speak again.  I am by no means degrading any other culture, but it is nice to know, having gone through so much, that there are people who are like me and can share with me as I with them a new way of living. (Patty Jones)

    As for a culture..well, when we get together we relax and can be ourselves and enjoy the new friendships.  No need to worry about how we sound, etc.  We meet and learn about one another....mostly those whom we would never have known nor spent time together otherwise.  We are all from different backgrounds, faiths, education, cities, states, even countries, etc.  It is such a blessing in disguise.  If one would call that a culture, so be it.  However, our own private culture and home is still as it always was, and therein lies the difference. (Martha Reed) 

Don't believe there is a lary culture:

    If I might generalize a tad, most deaf people have never been able to hear, and will never hear.  Most blind people have never seen and will never be able to see.  Most laryngectomees have spoken for a long time prior to the procedure and speak again afterwards.  That differentiates us from the other two groups.  We haven't been afflicted for a lifetime and therefore have had no need to develop, or identify with, a separate "culture" until recently.  I don't have a more comfortable feeling being around a group of larys anymore than I do being around a bunch of friends, old or new, for instance. (Duncan Bruce)

    But a laryngectomee culture? Get real!! (Mike Rosenkranz)

    As to culture: Technically, I suppose we do form a little subculture, but it isn't very pervasive.  We have certain daily needs that other people don't, and some constraints about speaking, but they don't define our whole lives or identities.  It's sort of like people with diabetes, who have to monitor blood sugar and perhaps inject insulin.  Is there a "diabetic culture?"  Beyond a small shared vocabulary and a few special needs in common, I don't think it's quite comprehensive enough to call it a culture. (Paul Sampson)

    Or maybe we are 'cultured' in the same way oysters are: a grain of sand or some other irritant is somehow placed in our gullets, we struggle against what seem like impossible odds to overcome it, and then lo and behold, a pearl! (Tom Harley)

    I do not think of being a laryngectomee as a culture.  I think we should point out our similarities, not our differences.  Everyone is different if they want to be. Being a laryngectomee is not a culture, it is some place we find ourselves and wish we were not here.  I do not concentrate on our differences or I would drive myself crazy.  I am still the same person, I just no longer have my vocal chords and my voice is usually in the other room. (Betty Temby)

    I don't feel there is a certain laryngectomee "culture," at least in this area. (Marie Sherwood)

    I don't think we are in a culture of our own.  We are still the same people only breathe and talk a little different. (Tom Gillen)

    I do not think there is a "laryngectomee culture," even though we share several unique characteristics.  There are many differences among us. Even though many of us were smokers, some were not.  It is not a black thing, nor a white thing.  It is not a respecter of class, education, gender, or status.  We share many things, we also share with a far broader group as survivors, not just of cancer, but also other near-fatal diseases.  In many respects we share also with those who have a visible, outward manifestation of their "problem," be it a wheel chair or absence of a limb. (Philip Clemmons)

    I feel, yes, we are a different type of cancer survivors but a culture?  NO.  Fraternity, Possible. Fellowship, Yes!!! (Judy Ramboldt)

    I have been thinking about this subject and asked Don about it since he is the one who had the Laryngectomy.  He does not feel that he is part of any culture, just a person that has had a procedure.  He would rather just be that guy "Don" that had to have surgery for throat cancer.  The folks we deal with here in our little burg would not have a clue what a laryngectomee is anyway. (Becky Pacey)

    So far as a laryngectomee culture, I certainly don't believe we have one, at least not like the deaf community. (Pat Morgan)

    And no, I don't think there's a "culture."  I pretty much live my life the way I used to.  I just talk differently (I learned another language or dialect). (Linda Hill)

    On the web and even at the convention larys seem to be very close.  But outside on the street we become very shy and withdrawn. (Joe Kelly)

    As far as a 'lary culture, the only larys I've come in contact with since my laryngectomy have been on this Website, and this is a support group rather than a common interest group. (Tom Harley)

    I think we are more of a fraternity. (Stan Mruk)

    As to a laryngectomee 'culture,' I don't think so although if there were more of us, there might be.  Other than meeting for support once a month, most larys that I know live their lives without much contact with other larys.  The online contacts have been great for us and for you since it probably keeps your patients more aware of what is going on with them.  While we learn from each other, we don't have enough contact, so the IAL meetings are the closest I have been to feeling part of a culture. (Pat Sanders)

(Editor's Commentary:  There may have been more of a laryngectomee "culture" or semi-separate "community" in the past than today.  Larys have always been a very small group and they were forced in the past, and to some extent today, to seek out and provide support and rehabilitation for each other.  SLPs had limited or no ability to teach esophageal speech, and this type of speech was considered in the past to be the only acceptable form of alaryngeal speech.  Those who used the AL were considered to be "lazy."  Finding a good esophageal speech teacher was very difficult, and many found learning esophageal speech to be a time consuming, lengthy, frustrating and difficult process. 

    This isolation of individuals in a prolonged period of voice rehabilitation and dependence on one another helped to foster more of a laryngectomee "culture" or community.  The TEP has certainly contributed to the more rapid speech rehabilitation of laryngectomees.  Laryngectomees spend less time isolated by their inability to communicate and in a prolonged program of speech rehabilitation.  Consequently, they are less likely to see themselves as different and needing support from one another.  The good news is that more of us quickly return to all aspects of our pre-laryngectomy lives.  The bad news is that there may be fewer volunteers to help new larys over the hurdles and
provide role models of functioning survivors for those who come after us.)

Place the Face

    Prior to the Nashville IAL meeting last year we published a series of photographs of WW members who were planning to attend.  Their names were listed at the end of the issue.  The thought was that it might be fun to see which faces you already could put a name to, and also gave us the opportunity to associate some names and faces before going to the convention.  We are doing that again this year and a group of photos will appear in this issue and in the July one. How many faces can you name?  (Answers appear below)


Southern Jazz man - Reuben Pruitte

    Reuben Pruitte taught himself how to play piano.  Reuben, of Dawson Springs, Kentucky, seemed to be born to play music.  "When I was 8 or 9 I listened to bands on the radio every night.  There would be remote broadcasts from all of the big hotels and nightspots in the country.  I would listen and dream I was playing in one of these bands," he said.  His dad played bass and asked a local guitar player to show Reuben some chords on the piano. 

    He had his first paid engagement at age 12, and at age 16 he was on the road touring with the Jack Staulcup, Russ Carlisle, and Teddy Phillips Bands.  "This was the mid 50s, so we traveled everywhere by car or bus on two lane highways," he said.  He married a fellow musician at age 19.  At the time he played trombone and received an offer of a music scholarship to go to college at age 16, so he skipped his senior year of high school.  He went on to earn his college degree at Murray State University, study jazz at North Texas University, and become a high school band director for 27 years before retiring in 1987.

    Despite having quit smoking more than a decade earlier, he learned in 1998 that he had larynx cancer and had to have a laryngectomy.  The forty years he had smoked had taken their toll.  He said, "I had smoked forever. But cancer was the furthest thing from my mind.  My family died of heart attacks, so that's the way I thought I would go." 

    Following surgery he was unhappy with his electrolarynx voice, but ten months after his laryngectomy he had the TEP performed.  He did a little dance of joy.  "I guess if anyone could have seen me they would have thought I was crazy," Reuben said.  "But I couldn't control myself; I was that happy."  He felt that he sounded too much like a robot with the AL, "but now I am recognizable to people I talk to on the phone.  It's my voice."  He also is a fan of the hands-free valve saying, "I can carry on with my normal activities while having a conversation."  He also got a Chattervox to help him be heard by fellow musicians when they play in noisy environments.

    Reuben plays with three groups.  "Southern Jazz" is a Dixieland- swing group, "Grumpy Old Men" plays jazz standards, and "Short Jazz," so named because Reuben is the tallest member at 5'6", is a jazz trio.  Money from playing pay for his two other passions, fishing and traveling.  He just returned last month from a jazz cruise on the ship Queen Elizabeth 2.  One of his most memorable jobs was flying by private jet to play for a party at the Missouri governor's mansion.  Some of Reuben's favorite piano players are Art Tatum, Count Basie, Erroll Garner, and Bill Evans.

    So if you are in Peducah, Kentucky on the third Thursday of any month be sure to drop by Whaler's Catch Restaurant at 123 2nd Street for some great seafood and catch "Southern Jazz," featuring Southern Jazz man Reuben Pruitte, who also happens to be a laryngectomee.

    Reuben can be reached at: HPruitte@webtv.net 

AMA urges Bush to Continue Anti-Tobacco War

    Early this past May the American Medicial Association urged the Bush administration to continue the ongoing legal battle with the "Big Seven" U.S. tobacco companies.  The AMA communique reminded all that cigarettes are "the only consumer product that kills when used as intended by the manufacturer," and that tobacco use is responsible for the premature deaths of 400,000 Americans each year.  AMA executive vice president E. R. Anderson said that within two decades 10 million people worldwide will have died of tobacco-caused illnesses.

    The AMA urged the Bush administration to continue to hold the tobacco industry accountable for the disease and death that its products have inflicted on the public.  It urged U.S. Attorney General John Ashcroft and the current administration provide "competent legal staff and adequate federal funding" to ensure the continuing progress in the Justice Department's lawsuit against the tobacco industry.  Concerning holding the tobacco industry accountable, the AMA concluded that "the health of our country depends on it," according to a report by Reuters Health.

Batches of Patches!

    First they brought us pins.  Now they have brought us patches!  We now have batches of patches just waiting for your order.  The WW Executive Committee has done it again and obtained great looking cloth patches (2 1/2 by 3 inches) of the WebWhispers logo to be put wherever you care to put one.  They will especially look great on shirts, hats, jackets, luggage, etc.


    They are just $1.50 each (includes packing and shipping), or 4 for $5, or 9 for $10.

    To order just send an e-mail to bhodge8937@aol.com and mail your check to:

Terry Duga, WW Treasurer 
6115 North Park 
Indianapolis, IN 46220 

    As soon as Terry receives your check, Bob will mail your patches.  Be sure to write on the check what it is for, or include this information separately.

    The WebWhispers logo was the winning entry in a design contest.  WW member Leonard Librizzi's graphic artist daughter, Eva Lynn Tomasco, designed it.

FDA Concerned about Overuse of CAT Scans

    The CAT (Computerized Axial Tomography) scan is an X-ray method which has revolutionized medical diagnosis by permitting the imaging of parts of the body which were previously inaccessible through traditional X-ray procedures.  The X-ray tube is rotated about the patient and a number of pictures are taken of one particular part of the body, or the entire body.  A computer then takes all of that information and combines it into a single readable image or series of images.  CAT scanning is particularly beneficial in the early detection of cancer and heart disease.  But a problem has developed because of the growing popularity of CAT scanning.

    In mid-May the FDA issued a statement warning against the growing popularity of the whole body CAT scan.  CAT scan equipment has even been set up in malls, and people have walked in to these clinic boutiques and paid $300-$500 for whole body scans as part of routine health screening.  The problem is that whole body scanning requires a much higher dose of radiation than scans of just certain organs.  And once the FDA has approved a machine for use with patients, how it is used is beyond the control of the agency.  The casual or routine use of the CAT scan technology was never the usage circumstance for which it was originally approved.

    This casual or patient-determined use of whole body CAT scan could be an especially dangerous practice for laryngectomees who have previously received radiation.  Ordinarily, if radiation was used in an attempt to kill the cancer, a lifetime maximum X-ray dose was administered. Such individuals should not have whole body CAT scans since this could easily damage those tissue areas with the additional radiation.  Excessive radiation produces a condition called "radionecrosis," which can have devastating consequences.  (See especially Jack Henshaw's story on hyperbaric oxygen treatment in WebWhispers Journal - February 2001 and the catastrophic consequences of his radiation overdose in his biography.)

    Laryngectomees who have received radiation therapy should always inform medical professionals who are contemplating using any kind of X-ray including CAT scans on areas which previously received radiation.  Such individuals should also obviously avoid the casual or routine use of CAT scans. 

Answers to Place the Face

Top Row: Kay Allison, Martha and Charles Anderson, Wayne Baker, Charles Blair, Don Cockrell, Frank Deam, Dave Greiwe, Hunter Kissam
2nd Row: George Ackerman, Mary Bergquist, Roy Boyd, Richard Crum, Jim and Sharon Allen, Terry Duga, Irwin Title, Jim Lauder
3rd Row: June and Murray Allan, William Chittenden, Elizabeth Finchem, Max Hoyt, Bill Jayne, Jim Kelly, Wilda Provost
4th Row: Libby Fitzgerald, David Blevins, Judy Greiwe, Ron Hamaker (MD), Janice Hayes, Mark Crowe, Ron Langseth, Martha Reed
5th Row: Charles Lamar, Bob and Leslie Herbst, Dutch Helms, Judy and Bill Ramboldt, Sally and Herb Simon, Pat Petrone
6th Row: Carl Strand, Ron Stepan, Jack Henslee, Mike Rosenkranz, Charles Ruppe, Pat Sanders, Dorothy Lennox, Sandy Lucaa
7th Row: Leonard Librizzi, Tina Long, Merritt and Donna Oakes, Lynne Meyer, Pat Morgan, Darlene Parker, Frank Morgan

Lary Laughs

by Judy Greiwe
jgreiwe@iquest.net 


Welcome New Members 

    We welcome the 16 new members who joined us in May:

Marsha Bonner - Caregiver
Yuma, AZ
Swmnupstrm@aol.com
"Ozzie" Cranford
Eureka, IL
ACran39281@aol.com
Mike Didion
Hinsdale, NY
fonedude@sprynet.com
John Hagaman
Dallas, TX
JackinbigD@aol.com
Dr Ronald C. Hamaker, MD
Indianapolis, IN
rhamaker@hnsaonline.com
Jackie Hinkle
Severn, MD
Jackiehinkle@aol.com
Evelyn M Hodnett
Crystal, MN
ehodnett@earthlink.net
Ian Johannes
Nashville, TN
ijohannes@email.msn.com
Steve Krupinski
Kapolei, HI
HAWAIISMK@aol.com
Heyder Mattos, MD
Rio de Janeiro, Brasil
hmattos@iis.com.br
Fred Phillips
Gulfport, MS
Frebren@aol.com
William Rahm
New Windsor, NY
Wolfhounds53@yahoo.com
Roger Scharmen
Cantonment, FL
RAScharmen@aol.com
Lesley Simunic - SLP
Spokane, WA
lesley_simunic@hotmail.com
David Wales
El Paso, TX
Jpwales@cs.com

Kay Wolff
Banks, OR
WolffKel@aol.com



As a charitable organization, as described in IRS § 501(c)(3), the
WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions
 in accordance with IRS § 170.

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