Internet Laryngectomee Support
WW Member Bob Mehrman in Television Ad
First you hear the voice in the television ad. To most laryngectomees the sound is unmistakably that of a Servox or other electronic artificial larynx.
The speaker talks about how the tobacco companies are trying to alter their image through advertising by emphasizing how things have changed.
But the viewer still does not see who is speaking.
Then it shows a laryngectomee in a hospital bed using a Servox to finish the sentence saying that the tobacco companies' deadly products have not changed.
The last sound you hear is that of a respirator.
The speaker is WebWhispers member Bob Mehrman of Beverly, Massachusetts.
Bob is currently serving on the Board of Directors of the International Association of Laryngectomees, and is a member of their Planning and Finance Committees.
He is a long time member of the Boston Cured Cancer Club, which was founded in 1947.
It was among the first clubs to join the IAL, and Bob is the current president.
The ad debuted during the Superbowl in January and was paid for by the American Legacy Foundation of Washington, D.C.
The foundation is funded from the tobacco companies' settlement of $206 billion with 46 of the 50 States.
The foundation produced a second ad in Spanish featuring another laryngectomee who uses the Cooper-Rand intraoral artificial larynx.
Both of the complete ads can be viewed at the Foundation website at http://www.americanlegacy.org
Bob worked in radio and television from the early 1950s and into the 1990s.
He had his laryngectomy in 1990, and has been active in the Massachusetts Tobacco Control Program.
He estimates that he has spoken to 179,000 children and adults about the dangers of tobacco use.
Bob can be reached at email@example.com
Jane Del Vecchio Dies
Jane Del Vecchio finally ended her "walk for life" on February 14, 2001, when she died at age 83 of a cancer recurrence.
Jane had moved to her son Robert McClure's home in Charlotte, North Carolina this past December when it was determined that no further treatment was possible.
More than 100 people gathered at a memorial service held in Atlanta on Sunday, February 26 to honor and remember her.
Both tears and laughter filled the room as family and friends spoke in celebration and remembrance of this extraordinary woman.
Among the many guests were IAL President and WebWhispers member George Ackerman from Canada, and Vice President Howard Moore from California.
Many other WebWhispers members were also in attendance. Those who spoke included family members, Robert, Deland, Katy, and Gayle McClure, and Holly McClure Pigg; as well as Charles Ruppe, Mark Crowe, George Ackerman and Howard Moore.
Jane was honored in the June 2000 issue of the WebWhispers Journal as the first, and so far the only, individual designated as a "Legendary Laryngectomee."
Reprints of that article were distributed at the service. The article, which features many photographs and quotes from a few of the many laryngectomees whom she helped, can be accessed at this website:
WebWhispers Journal - June 2000
"She became for me
an island of light, fun, wisdom
where I could run with my
discoveries and torments and
hopes at any time of day and
find welcome." (Mary Sarton)
Which Type are You?
by Stan Mruk
Finding an appropriate title for this piece gave me some cause for concern.
I wanted it to be interesting enough to catch your attention, but I certainly didn't want to offend anyone.
Finally, I recalled the late Howard Cossell and decided to "tell it like it is."
While this will hopefully serve as a guideline for the new or soon-to-be laryngectomee, I've been around long enough to realize that there a lot of "old timers" out there who are selling themselves short by their attitude as to what being a laryngectomee is all about.
Let's start with some definitions. While I am willing to take full responsibility for all that appears in this article, I have discussed my views with many other laryngectomees and I know that there are many of you out there who share my opinion.
For me there are three types of laryngectomees and they are:
A. The "Woe Is Me" Laryngectomee
B. The "I'm OK - Who Cares About You?" Laryngectomee
C. The "OK, Now Let's Get On With Life" Laryngectomee
To me, the saddest case of all is the “Woe Is Me” type.
They are doubly sad because they tend to conduct a 24/7 "pity party" for themselves, and will gladly drag anyone around them down with them.
Secondly, because of this constant self pity, most of these individuals will never gain access to an article like this, and, if they did, they would probably just classify the writer as a "know-it-all” nut.
If we have been a laryngectomee for longer than a year, chances are that we have all met this type of person more than once.
They feel that they have been dealt a devastating blow by God, the Fates or whomever else they might choose to blame.
In their mind, THEY were innocent victims and had nothing to do with the path their lives took.
They tend to forget that they foolishly used tobacco products for a number of years, and in many cases chased the smoke with alcohol.
Now before I get bombarded with mail objecting to this statement allow me to say that I am fully aware that these are not the only reasons necessitating the need for laryngectomy surgery.
But you cannot deny that it is the most common. My point is that that some people refuse to take responsibility for their own actions.
In the past six years, I have personally met no less than ten laryngectomees who would not venture from their homes, and, although an electro-larynx or other type of alternative speech was made available to them, they will not even attempt alternative speech - EVEN WITH THEIR OWN FAMILY!
They would rather scribble notes or use "home-made" sign language. This certainly is unfair to any caretaker, and in most cases, totally unnecessary.
We can only hope that they will someday wake up to a different approach to life.
The B type (“I'm OK, Who Cares About You?”) laryngectomee is the total opposite of the "pity party" laryngectomee.
As a matter of fact, they are completely opposite. In their journey into our world they have been fortunate in having had relatively few complications or problems in adjusting their lives.
They are most likely the TEP or esophageal speakers who have now returned to work and pretty much the same social and business life they had prior to their surgery.
This would be totally admirable if it were not for the fact that they are so busy living their lives to the fullest that they don't have the time or desire to offer help to those less fortunate.
This is especially sad because these people have so much to offer their fellow laryngectomees if they would just take the time to think about it.
Again, like the first example, these Type B laryngectomees would probably believe that this writer is "all wet."
The bright side of this entire picture is that I have found that the majority of laryngectomees fall in the last category, "OK, Now Let's Get On With Life."
These are the individuals who, first of all, realize that their laryngectomy has probably granted them a second chance at life.
They will readily admit their part in causing the problem in the first place, and constantly go out of their way to help other people, especially the children, from making the same mistakes they made.
These are the laryngectomees who are active in their local support groups or will start one if a group is not available.
If the area is rural enough that a regular group is not feasible, these folks will think nothing of driving 50 or 60 miles to help another laryngectomee or to consult with a person facing laryngectomy surgery.
And their concern is not "hit and run." Once they become involved, they usually stay involved.
These are the folks who make up WebWhispers and the International Association of Laryngectomees.
These are the laryngectomees who will spend their time and money traveling to schools to educate children on the hazards of tobacco use.
They are the people who, again, at their own time and expense, will drive miles, if necessary, to see that a new laryngectomee has an electro-larynx to use until they can obtain their own.
They will go out of their way to pick up other laryngectomees to get them to support group meetings or radiation treatments or whatever else may be necessary.
Like the Type B laryngectomee, in many cases these laryngectomees will return to work and pick up their social lives where they left off before acquiring their "special voice."
Many times, they become more socially involved than they were when they spoke "normally."
They do not consider themselves handicapped nor do they expect pity from anyone. They are usually too busy trying to make someone else's life better.
Does this sound like a heroic group of people? It could.
Do these people consider themselves heroes? Not a chance! They only think of themselves as fortunate to have gotten a second chance at life and are trying to make the most of it.
So, my friends, this is just one laryngectomee's spin on what our "special" community is like.
I've written this primarily to provide some insight for the new "special speaker" in the hopes that, should you find yourself asking, "Am I my brother's keeper?," your answer will be “yes.”
And if you’ve been a "special speaker" for a while, maybe you'll want to reconsider how you view things.
LIVE LONG AND PROSPER
(Stan Mruk lives in Exeter, Pennsylvania, and works part time representing the Swedish owned company, ATOS Medical, which makes the Provox prosthesis.
He can be reached at firstname.lastname@example.org).
Reaction to "Which Type are You?"
Stan was kind enough to agree to share the above and invite some reactions from members.
What follows are a few observations:
"The definition of 'total laryngectomee rehabilitation' is to return, as close as possible, to the place in one's life where it was interrupted by laryngectomy and cancer.
Examples A through C are found in every sector of society. The miracle may not be survival, but the lessons learned from the experience."
I read the article, but do not necessarily agree or see myself in any one category. People are a little more complex than that, I think. (Dave Greiwe)
"My . . . estimate of percentages for the three types of larries is as follows:
A-30-40% Especially among the very elderly
B-15-20% A lot of people refuse to join any group
C-40-50% The active majority." (Bob Herbst)
"I wish we could cease trying to separate laryngectomees from the rest of the population. Some of Stan's remarks would be true for anyone who has experienced a traumatic illness that necessitates some life style changes.
I see a well rehabilitated laryngectomee as someone who returns to the activities (career and hobby) that he/she enjoyed before surgery having successfully adopted some coping mechanisms."
(Mary Jane Renner)
Agent Orange Linked to Diabetes
A number of laryngectomees are veterans of the Viet Nam war in which the defoliant "Agent Orange" was used.
A recent ruling by the VA states that veterans who have Type 2 Diabetes may be eligible for disability payments based upon a link which has been demonstrated between exposure to the defoliant Agent Orange and this type of diabetes.
While the rules permitting this have not been put into operation at this point, any veteran in this category should apply now for disability payments since, when the rules go into effect, payments are likely to be retroactive to the filing date.
Address further inquiries to your local VA or Jack Henshaw at
Servox-Maker Announces New Rehab. Institutes
Siemens Corporation, maker of the Servox artificial larynx, Chattervox voice amplifier, and many other products, recently announced the creation of the Institute for Rehabilitation of Laryngectomees - USA.
The not-for-profit Institutes are modeled after the German company's European programs.
Antje Hinrich, an SPL from Germany, will serve as Program Director of the Prospect Heights, Illinois-based Institute.
The Institutes will provide seminars, teleconferences for SLPs, hospital in-service training, newsletter and telephone "hot-line."
The IRL-USA foundation Board of Directors includes SLPs Jane McDonald, Paula Sullivan, and Dr. Ed Stone.
Dr. Stone currently also serves as the Director of the IAL Voice Institute.
by Judy Greiwe (email@example.com)
Welcome New Members
We welcome the 18 new members who joined us in February:
|Geraldine Boddie - SLP
Rehoboth Beach, DE
Calgary, AB, Canada
Silver Spring, MD
Darlene Houston - SLP
Averill Park, NY
Cedar Rapids, IA
Cherry Hill, NJ
Lisa Stober - Nurse
Tracey Taylor - SLP Student
Charles Vaughan Jr.
South Hill, VA
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