August 2007

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Air Travel is a Rough Sport News & Events
News Views Pat Sanders Where to send WW Mail Education
VoicePoints S. Reeves, M.Ed.CCC/SLP Post Laryngectomy: Airflow Changes Education-Med
WW Columnist Terry Duga IAL 2007 News & Events
Between Friends Donna McGary On Cults And Cancer Experiences
Worth Every Penny Lanny Keithley Free Help is Seldom Worth The Price How To
A Scottish Accent Rosalie Macrae The Sound Of Silence Experiences
P. S. Bill Withers Lean On Me Inspiration
New Members Listing Welcome To Our New Members News & Events

 

 

 

 

Air Travel is a Rough Sport.

 
 
Once upon a time, there was travel on prop planes when it took a long time to get where you were going and it was sometimes a "little" rough but you would usually go straight to a destination city, making several other stops at small airports along the way to drop off and pick up passengers. People would drive miles to excitedly meet someone coming in at their nearest airport. Of course, that was when the planes were much smaller and not full loads. Same goes for the airports. The airlines were happy to see you and almost never had a full plane. You could wander about so you got circulation going in your legs and the only time you had to buckle up was if there was some turbulence or you were coming in to land... (Sometimes bounce!) They also fed you. Despite the complaints often heard about airline food, it was a lot better than none at all. I had the experience this last flight of actually getting a sealed package of pretzels with nothing in it but air. That is coming next to your favorite airline.
 
Then, we got "hubs" so that you had to go to the hub before going back out another spoke of the wheel to your destination. This was supposed to save something, time or money? Forget that. It isn't "my" time or money. We used to say that from here in Birmingham, Alabama, going to Heaven or Hell, you had to go through Atlanta.
 
Maybe I don't think the way the airline schedulers do, but to fly from here to Tampa, FL they want to send me to Houston, TX (South and a good way West) change planes and then fly to Tampa (South and a good way East) There is something wrong with my math and my geography. This is not the way I learned it in school. I have to fly 1500 miles to get 600 miles away. What happened to the gas shortage? What happened to my time when I have to be at the airport at least an hour ahead of time and leave a long enough period between flights to not miss my connecting flight? Also, what happens to the guy who follows me to make his reservations and he wants a direct flight to Houston? Since they just sold that space to get me to Tampa, they decide to send him through Memphis to get to Houston.
 
So, in spite of all this, I decided to go to the IAL this year in Burlington, VT and started checking flights. Let's see, I could go to Charlotte, Newark and Burlington. I could go to Atlanta, New York and Burlington. Chicago, D. C. and Burlington and they had a special price if I would go 4 flight legs, instead of 3...Make as much sense as the rest of it. Fly further...cheaper! Well, it could assure them that they could sell my luggage in Scottsboro, AL, where they have discount prices on all your lost possessions.
 
I finally got a flight to Chicago with a connection (just one) through to Burlington and I even had a nice layover of 2 hours so there should be no problem with making the other flight. Would you like to guess how late my plane was getting into Chicago? Three hours. Where were we? In Springfield, Mo, getting gas because we had used it all up circling Chicago.
 
I was supposed to get into Burlington at 9:30 PM. At 9:30PM, I was in the Chicago airport waiting for a plane to land that might have room for me, if three people broke their legs on the way to the airport. Forgive me, but you think I didn't pray for that? It worked! I got on the airplane about Midnight.
 
At 3:30 AM, they were announcing that we were coming into the Burlington airport and we did land safely. Of course, the hotel had stopped van service to and from the airport at Midnight. At the airport, I was with a lovely couple from California. They were also attending the convention so we taxied to the hotel and they let me register first...with the only person alive at 4AM in the morning...as I knew by a sign on her lapel...a trainee. My information and credit card went through.... 4 times, before she found the right combination to get a room assigned and a key that would work for that room. No bellboys at that hour so she got the guard with the uniform to escort me. Finally, I was in my room for the start of the IAL.
 
Nothing more to worry about. I had a well-planned 4-hour layover in Chicago going home but there was a delay in take-off from Burlington. I barely made Chicago in time!
 
It is good to be home.

 

 

Where To Send WebWhispers Mail

 
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We get a lot of mail sent to the wrong places. We are able to care for problems much more efficiently if you send them to the proper places so please take a minute and notice where to send mail:
 
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Enjoy,
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 VoicePoints     [© 2007 Lisa Proper]
Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S ( proper.lisa@mayo.edu )

 

Changes in the Body - Post Laryngectomy: Airflow Changes and Beyond

Submitted by: Susan Reeves, M.Ed.CCC/SLP
Clinical Director/ West Texas Rehab Center
San Angelo, Texas

 

 

There are multiple changes an individual and their families go through after a total laryngectomy. Many find out about these changes, along with ways to compensate, by meeting someone who had a similar experience. Some remain frustrated for months and sometimes years without having anyone sit down and visit with them about the changes that occurred to their lives after their vocal cords were removed. This article is an attempt at sharing a few of those tips.
 
Stating the obvious: the body has changed. The trachea, through which a person breathes, is now open to the outside of the neck, creating an opening, called a "stoma". This stoma will be the permanent portal for breathing. Air is no longer circulating into the mouth and nose as it did before the larynx was removed. It is this airflow redirection, which primarily changes aspects of that person's life. These include:
a. Smell/taste
b. Sipping/blowing
c. snoring
d. Swimming
 
Because air is not circulating in the same manner it was before the surgery, adaptations need to be made either to substitute with intra oral air or to realize that some activities are just different post-surgery. Smell and taste go hand in hand. Smell in many cases does return over time, but typically not to the extent the individual had prior to surgery. Using the nipple-tube, which is well outlined in "Self Help for the Laryngectomee," Dr. Zilpha Bosone outlines a simple, yet very useful notion, of rerouting air into the mouth to achieve the missing airflow, which now goes out the stoma. Getting a Playtex baby nipple and cutting off the end of the nipple is the first step. Then get about 10 inches of aquarium tubing and placing the aquarium tubing into the end of the nipple is all that is needed to make the Nipple Tube. The use is simple: place the baby nipple over the stoma and breathe out. Place it exactly over the stoma and, if needed, use your stoma housings or HME housings in order to get a good seal between the stoma and the nipple tube. Put the other end of the tube in your mouth. When exhaling, the air from the lungs will then go through the nipple tube into the mouth and then with a quick sniff, the individual can use the lung air as he/she did before and smell or blow his nose. Additionally, intra oral air, which is residual air already in the mouth, can be pumped into the nasal cavity for the purpose of blowing the nose. With a little practice, folks can learn to do this with minimal effort and soon find that they do not have to put up with a drippy nose. They soon learn to clear their nostrils in a different manner.
 
Smell adaptations need to be discussed for a variety of reasons, including: safety and hygiene. Smoke can overcome a laryngectomee, who lives alone and cannot smell the smoke. Unless someone else does smell the smoke, one is at the mercy of, hopefully, being able to see the smoke This may cause a lot of smoke inhalation before the smoke is visible. One of my patients had a house cat flag the problem before he noticed it. He was cooking and left a saucepan burning on the stove, which caught on fire. He did not notice and the house was almost engulfed in smoke before he heard his cat scratching at the screen door. Often a spouse may complain that their laryngectomized partner now wears too much cologne or does not notice body odor as diligently as prior to the surgery. They cannot notice if they cannot smell and may need to ask a trusted loved one or friend to advise in this department.
 
Sipping and blowing or cooling food/coffee is another of the changes, not life threatening, yet still annoying, which a laryngectomee must adapt to. Sipping or blowing on something that you want to cool, requires airflow. Again intra oral air can be used for this purpose and working on a variety of skills to increase intra oral air pressure is not to be underrated. Last year at the Texas Laryngectomy Association in Fort Worth, Dr. Shirley Salmon demonstrated to our entire group, the art of teaching and increasing intra oral air pressure. We brought in balloons, cups of soda with straws, party horns and whistles. We asked individuals to demonstrate how they have adapted to blowing with intra oral air versus lung air. They were superb. Everyone had a great time and all were able, in varying degrees, to accomplish something they had not tried since their surgery but they were able to adapt.
 
Mucus buildup and the making of mucus post surgery can be devastating to the new laryngectomee and their family. Unless this is managed well with a Heat Moisture Exchange (HME) system or with saline solution the whole family is held captive. No more going out to eat. No more going to church as a family. Using the HME greatly reduces the making of mucus, which is nature's way of protecting us from germs, bacteria. Keeping the stoma covered protects us from infection and mucus is another way of fighting off infection. Covering the stoma will reduce the amount of mucus. Using an HME system covers the stoma and protects the airway from infection with the medicated moisture system. If for any reason the HME system cannot be used, simply cleaning the stoma and trachea with 3-5 CC of saline solution can also keep a person from building up mucus in his lungs. It is important not to allow this mucus to harden into "rocks". Moisture exchange is important to use before the mucus hardens as it can actually "cork" a laryngectomized individual, with one good cough. Keeping a saline bullet handy is great for this reason. Should anyone "cork" or try to unsuccessfully cough to eliminate a mucus plug which has become larger than the stoma and gets stuck trying to leave the body, then the individual can moisten the mucus plug by putting saline directly into the stoma and airway. Again, only 3-5 cc is needed, if that much, and the mucus plug will moisten enough to shrink in size and will then be expelled in the coughing process, naturally. This result is much better than having to be rushed to an Emergency Room after you have passed out or because you are having difficulty breathing due to "stuff", which was never expelled through strong coughs.
 
Snoring is another of the body changes due to airflow, which should be discussed with every spouse and family member who is waiting in Intensive Care for their loved one to complete this life-altering surgery. After enduring this surgery with their partner and after waiting in the ICU for almost 7 or more hours, wondering if their partner will live, they are changed forever. After the week in the hospital, the day comes when they can finally go home and as they lie in bed with their partner, the silence and absence of snoring is deafening to them....They are scared to death and fear the partner may not be breathing. The family member was not told about snoring or the absence of snoring and for maybe only a minute or two, their own heart stops beating, afraid their partner has died! Far too many spouses and significant others experience this and educating them about "snoring" only takes a minute. If air is not going through the throat, mouth and nose, a person will not snore. No sound is generated when the vocal cords are lost as they were the vibrator for sound. That includes the sound of snoring.
 
There are other changes, which occur after this surgery, for the patient and their family, besides the airflow changes. The communication choice may affect additional areas, which need to be considered. They may choose to eat out, for example, picking a quieter, off the mainstream area, to eat. This helps, especially, if others cannot hear the laryngectomee well during meals. The family should not stop going out to eat: just alter where they sit or which restaurant they chose.
 
Activities of daily living, such as showering, need some adaptations, but one does not have to bathe in a tub forever after this surgery. There are commercial shower collars available. Many individuals learn to twist their head in a manner so that the shower water does not run into the stoma or they chose to cover their stoma with a washcloth during the shower, but they still can shower.
 
Swimming can be achieved, as well, and I have personally seen many laryngectomized individuals revel in "getting back into the water" in some manner, for pleasure. I am not suggesting that all individuals with stomas go jump in water. I am saying that I have seen individuals swim by covering the opening in their neck, while floating on their backs. I have seen individuals with stomas drop coins at the bottom of the swimming pool and then go retrieve these, while placing securely their finger or thumb over their stoma while they are under the water. The individuals know their body and how it works and how it does not. They know their anatomy. I have had the privilege of witnessing one laryngectomee help another into an inner tube and then push her around a pool, until she was comfortable or safe enough to maneuver herself independently and then I witnessed her "smile" of accomplishment during the task and afterwards. It was priceless. She understood how her body had changed and she learned how to adapt.
 
The Larkel is a swimming/snorkel device which Martha Strasser of Germany taught for many years in Germany, as well as in the states. A member of my club is ex-navy and had to leave the Navy after his laryngectomy. Learning to swim again or get in the water was very important to this man. The sense of regaining "self" should not be underestimated or undervalued, especially by those who have not walked in these shoes.
 
There are more changes which occur and which laryngectomized individuals have learned to adapt to. They can do anything they did before and then some. Dr. Stuart Gilmore used to say, "If a laryngectomee told me they could fly, I'd start looking for their wings," because they can do anything!
 

 

 

 

 

IAL 2007

Terry Duga
 
 

July 10

 
Ah the joys of flying. Actually, my trip to Burlington went quite smoothly. A friend drove me to the airport. The plane left Indy on time (what a wonderful concept). The plane was full and the air vent above, did not really work, so take off and landing got warm. But, we got to Philadelphia on time. My connection was almost three hours away. The gate was just across from where we got off the plane. It was a little after 11 am. Soooooo, it was lunchtime. I didn't care for the choices in my terminal, so I took the shuttle to another terminal.
 
Had a nice lunch at TGI Fridays served by a pleasant waitress who understood that extra napkins are essential when eating a brisket dip sandwich. I was going to get some exercise and walk from terminal A to F, then I saw the sign that warned that those of us who wished to get such exercise would have to go through security, again. I had taken my shoes off once, and had no desire to do so again, so I turned around and took the shuttle back to Terminal F.
 
At the gate, I met some members from Puerto Rico, including Sra. Vasques. The plane loaded early and actually left the gate prior to its 1:40PM departure time. And, the plane was not crowded, so I had two seats to myself. We arrived without incident in Burlington at the designated 3:05 arrival time. By the time I deplaned (see George Carlin for a discussion of "deplaning") and made a pit stop, my suitcase was waiting for me at baggage claim. I had met Zilpha Bazone on my way to the baggage claim. We went to the hotel shuttle and rode a short distance to the hotel while the really nice driver told us about the rainstorms that had been pelting the area. A little rain was spitting while the sun shone.
 
At the hotel, the key machine was not working. I checked in and was given directions to my room. They lead me up the stairs, and were wrong. I returned to the desk and this time got an escort, up a flight of stairs, dragging my suitcase to my hot room (I turned on the air after getting in). Of course, after walking the long way, the nice girl pointed out the elevator that would have made my trip easier and shorter. Mmmmmmmmm. The hotel is nice, but is being renovated. The common areas are a bit warm. We shall see what tomorrow holds.
 
In the meantime, I start my exploration, only to meet larys in the lounge off the lobby. We chat. There is much talk about the up coming Delegates meeting and the issues to be decided. This is new - delegates caring about what they are going to decide. I find it healthy.
 
It is "beer thirty." I join Bob and Leslie Herbst and head for the bar. We are soon joined by Ed and Barb Chapman. Then Mike Csapo and Lisa join us. Then Rita Burfitt, and Dave Maguire, who had also been in the lobby (gee it is good to see Dave again), then Zilpha Bozone and Mary Jane Renner. Others come and go. We all chat and have libations (both with and without alcohol). Dinner is a decent fish and chips.
 
As others leave, Sapp Funderburk, Caryn Melvin and John Ready show up. Then Mike Dreisbach. I end up chatting with people until around 9:30 when I retire to get out my contacts and take some pills a bit late. By this time the air conditioning has cooled my room.
 
Tomorrow we will be taking a cruise on Lake Champlain then going to the meet and greet. The meeting is starting.
 

July 11

 
OK, it is 12:17AM on July 12, and I am just getting down to writing my journal for the 11th. It has been a full day. I slept in to about 8 am, which, I am sad to say, is sleeping in for me these days (gee it's rough getting old). I wander down to the registration desk and get my pack of stuff. Now I am legit. I grab a chocolate croissant from a stand (actually from another groups meeting, but hey, it was there and tasty). I run into Fay Flanery who asks how we are getting to the boat for the lunch cruise on Lake Champlain (a really good, though not Great Lake). I tell her to meet us at the entry at 11 but that everyone is on their own.
 
Pat schmoozes and gets us a ride from the hotel shuttle. Our driver is Dan O'Sullivan, an Irishman (no kidding) from Boston, and a true delight. Dan gives us a short but interesting guided tour to the boat. His first wife was a laryngectomee before all the advances in speaking. He is my sympatico. He takes great care of us, and becomes, to me, the beacon that the rest of the hotel staff must aspire to.
 
The lunch cruise is delightful, despite haze and a soft rain. We take up almost 50 seats. The meal consists of cold cuts (beef, ham and turkey), cheese, nice fresh bread, condiments, a leafy salad, a really nice pasta salad and tomato artichoke bisque that is wonderful. Then there are the fresh cookies for dessert (wooooooooo).
 
The cruise takes about 1 and 1/2 hours. It is smooth, quiet sailing. We have a great time talking.
 
When we get back, Pat calls Dan, our savior, who comes and takes us back to the hotel. He refuses any additional tip. What a guy!
 
After getting in, Pat heads for a nap (she got in bed at 4:30 in the morning). I go to my room to brush my teeth. I wander down to check out the availability of Internet access. Alas, no go. You must pay an exorbitant price to play. I check out the sweatbox they call the Internet room and check my e-mails, briefly.
 
Barb and Bob Stratton have come. They are looking for Pat, who is napping. We sit in the outer area of the pub and chat. Mike Csapo and Lisa are there. Pat joins us about the time Mike tries to call her. Donna McGary arrives, the world is getting full and interesting.
 
I change for the meet and greet which is held outside the exhibition room. The food is meatballs, mini quiches, bread to be dipped in a spicy cheese sauce, and interesting appetizers being passed. There is a cash bar, but I don't care for the brands. We chow and chat. We end up in the bar to have drinks. There are tables of people chatting and talking in various tones. Pat and I join Ed and Barb Chapman. Donna McGary joins us lured by my offer of a drink. Steve Israel shows. The next table fills with Bob & Leslie Herbst, Tony Talmich and wife, Laura, Charlie and Nancy Blair and some new people I don't know. Lauder arrives, in force, as do many others, and the room is basically laryland. We discuss the politics of the day and blues and bad jokes. Camaraderie. Finally we depart for rooms to await the opening ceremonies tomorrow.
 

July 12

 
I had every good intention of making an entry each night, as the day is fresh in my head. So much for good intentions. So, now I must try to remember Thursday. I am running late. I had a little too much camaraderie last night. I get up and get to the meeting while Dr. Singer is giving the keynote address. I have missed the opening ceremonies. Later, Zilpha fills me in on some of what went on, but, because I did not witness it myself, I will leave the reporting to someone else.
 
Jan Lewin is next. Jan is THE SLP from MD Anderson in Houston. I have known Jan since the IAL meeting in Indianapolis. It is always a pleasure to see her, and today is no different. She gives the Dutch Helms Memorial lecture. What a speech! (OK, I am very biased, but, really, it is good). She speaks of Dutch and talks about lifestyle choices that larys should make. She was a friend of Dutch's and her speech is both moving and informative. In typical Jan fashion, she worries that she has not done a good enough job. She doesn't need to worry. I take pictures. Pictures of Jan are always a challenge because she dislikes having her picture taken, which, in turn, means that I have to try, but I also have to try to take good, flattering pictures. I succeed (it is easier than she thinks).
 
After the lecture, Donna McGary and I decide to do some exploring and to walk to Lake Champlain. The weather, after a couple of days of rain and thunderstorms, is perfect. The sun is out. The day is warm, but not overpowering. The lake is at least a couple of miles from the hotel. It is mostly downhill, though not completely. We walk through the campus of the University of Vermont, a lovely school. Champlain University is also in town, next to UV. The town is lovely. Mountains surround the city. The lake anchors it. Homes are well kept.
 
We eat lunch at the Ice House, a restaurant on Lake Champlain with a deck from which we can watch the lake. Dan O'Sullivan had recommended it the day before. It is pleasant. I have a cup of clam chowder and a Reuben sandwich. The chowder is disappointing. It is adequate, but only adequate. The Reuben is quite good and makes up for the chowder.
We walk back to the shopping area. The street has been closed to traffic and people wander between stores and restaurants. I purchase small bottles of maple syrup to give the support staff at the office. I am tempted to purchase a bag of "heavenly manna snacks" made by contemplative nuns. The snacks, low in fat and sodium, are the baked leftover dough from which communion wafers are cut. I don't buy them because I am afraid that they will get crushed in my luggage. We walk back to the hotel through the campus, returning a different route than we went, so we see another neighborhood.
 
Thursday night is the Bruce Medical reception for the Voice Institute. I sign in, get my magic light up smiley face blinky ring and board the bus. We drive a short distance to what appears to be a large country estate. The Inn is the site of the Culinary Institute of New England (or maybe it is the New England Culinary Institute, whatever, you get the idea). There is an open bar and servers bring around trays of yummy appetizers. But, BONUS, we get to take a tour.
 
Taking the immediate tour means delaying having dinner, but how can I deny myself the pleasure of touring. My group has some lovely, charming SLPs and our host, Richard Najarian. We go first to a private kitchen. We taste special salt, then are offered a special cheese that is just hiding in the refrigerator. It is like eating butter, but better. (And no, not every tour group got to sample the cheese, but we were with the host). I take copious pictures.
 
Then we tour the downstairs kitchens. What a place. We even get to see the working kitchen that is providing victuals for the two fine restaurants at the hotel. They are busy.
Back at the reception, I have dinner. A really nice salad with balsamic vinaigrette dressing, salmon, pork loin, sliced roast New York strip and veggies. A wonderful treat after the tour. But there are also two desserts. There is a chocolate creation that is sort of a flourless cake that is rich and dense and dark chocolately. Dutch would have been in heaven. There is also a trifle.
 
After dinner, Richard has asked me to assist him in giving away two iPods. I get to do the drawing. Fortunately, I don't draw my own slip. Then we banter about what the other people are going to get, and he hands out incredible "favors." It is time to return. I still have a glass of Makers Mark. I am loathe to dump good bourbon, but don't want to try to chug it. Ah, the bartender to the rescue with a coffee cup and lid - a sippy cup to go!
 
Back at the hotel, I go to the bar (where else to find wayward larys?). I join the long table of Jim Lauder. Danger Will Robinson, Danger. Jim is there, as is Gunter from Servox and Jon (don't know if that is spelled right) from Fahl. Donna is there as is Jewell Hoffman and Jeannie Tibbits. Ed and Barb Chapman are at a nearby table. Bob Herbst joins. I am working on my sippy cup.
 
After the bar closes, a group moves to Lauder's room. Jim shows off his iPod, which has 10,000 songs on it. The rest is the rest. I don't repeat my attempt to keep up that I tried a few years ago in Anaheim. I think I am wise.
 

Friday, July 13

 
The 13th comes on a Friday this month. Oh well. I get up a little late and head for the restaurant. It is open and has a breakfast buffet for $10. So, I stock up on eggs, bacon (mmmmmmmmm, bacon), hash browns, some fruit and rolls. I then work my way to the WW table to see what is going on. Pat and Michael and Len are working the table, giving information on WW, chatting with members, and taking donations. I have a presentation in the afternoon so I cannot completely disappear to the city. But, about noon, the troops at the WebWhispers table need food. Donna has heard about Al's Diner and its great burgers. We go on a road trip. Al's has a classic diner front. Booths L around the front of the insides. Two lines start with cashiers who take our orders. There are burgers and hot dogs and much more. After ordering, we join the serving line. We can see the food being prepared. The servers will dress the food to our liking. Donna and I have our food there. Then we go through the line again and get burgers and a quart of fries for the troops. The food is a hit!
 
Next, I participate in a panel discussion. Andres, Elizabeth Finchem, Charlie Blair and I discuss speaking the lary way. The audience is small but does ask questions, which helps. We are winging it because we were asked to participate at the last minute. After the discussion, I return to my room to rest a bit, to get another shower and to get ready for the WW banquet. I put on a new seal for my hands free valve, just to be safe. I also write the checks for the VI Project. This is the $100 grant we give to WW laryngectomee members who attend the voice institute. The money comes from the Edmund Lauder Support Fund, which, in turn, is primarily funded by Lauder Enterprises. I put the checks into marked envelopes (I made labels at home because I cannot trust my handwriting). I also divide the other awards so that they can be presented at the banquet.
 
I get my camera and head for the banquet hall. When I get there, a small group has already gathered in the hallway outside the hall. Richard Najarian, of Bruce Medical, is there making sure that the bar Bruce is sponsoring is ready. I enter the banquet hall. The hotel staff is working its magic to convert the ballroom from a meeting room to a banquet room. I put the awards and my file folder onto a safe table. Libby brings in the Casey Cooper Award and a box containing the "fun" awards (the farthest and closest guests). The crowd outside is growing. Soon, the bar and snacks are open for the pre banquet reception. Bruce Medical supplies happy blinky rings for the participants. They are passed out and soon fingers are blinking. Cliff Griffin's doesn't blink. So, what does an engineer do? He takes it apart to see how it works. Alas, it does not go back together.
 
In the room, the magic continues. We have a small table set by the podium to display the Casey Cooper Award, an engraved pewter bowl. This year, as has been announced, the winner is Frank Batten. He will not be at the banquet, but he will still be honored, deservedly so.
 
I take pictures out in the hall. The crowd is growing. People want to get into the room, but it is not ready. Tables are being set, chairs materialize. Tablecloths appear, as do place settings and candles. Soon the room is ready. The crowd enters. Some people don't know where they are going. We bring the large chart into the room and put it on the stage so people can find their seats. I grab a glass of wine for later and put it at my seat. Herb Simon gives the blessing. Then, the orderly line to the buffet begins.
The food is excellent. There are fresh greens, mashed potatoes, veggies, a veggie lasagna, seafood Newberg, wonderfully moist chicken and seafood chowder. The desserts are also tempting (make that a quick return trip to save some cheesecake, though the chocolate also looks good. We eat and chat.
 
As eating slows down, Pat starts the program. Herb Simon reads the laryngectomee prayer and reads the names of those who have gone on this last year. Bob Herbst rings the bell after each name. We continue this tradition to honor those who are no longer with us. At the end, I take my untouched glass of wine and, commenting that he is probably enjoying an ice-cold glass of Stoli (his Vodka of choice), I toast our late founder, Dutch. A new tradition begins.
 
Pat gives a talk about how WebWhispers came to be and introduces John Ready, the only one of the first 10 members to be at the banquet. She also tells how we grew through those early years.
 
Then the awards. I get to give the Phoenix awards. Pat, Len, and Michael are there to receive this certificate, awarded because of their dedication in getting the new site up and running. Others will receive their certificates via mail. They will go to Barb, John, Sunny, Jeanne, Randy, Mike R and Logan for their work. I also present Pat with an award of merit for her work in overseeing and directing the rebirth of WebWhispers. All of the certificates given were made up by Len Librizzi and he did a great job.
 
Libby, who made the arrangements for the banquet, gets to give awards to Jobeth Seder Erickson and Richard Najarian thanking InHealth and Bruce Medical for their support in underwriting the banquet. Without their continued support, the cost would be much higher than the $30 each person pays. Libby also gives the "fun" longest and shortest distance awards.
 
Pat presents Jobeth with an award thanking InHealth for originating and funding the Dutch Helms Travel Grant. This was designated to help those who work to keep WW running to attend the IAL. This year, the inaugural grant went to Michael Csapo who has taken over much of the work that Dutch did.
 
I get back up and it is Lauder time. I get to present Jim Lauder with an award thanking Lauder Enterprises for funding the Edmund Lauder Support Fund. The fund allows WW to give a $100 grant to each laryngectomee who attends the Voice Institute according to our rules. This year we have 16 recipients. Jim calls the people down and hands out checks.
 
The evening has been a success.
After the dinner, we move to, where else, the bar for a night cap and chat.
 

July 14 - The Meeting

 
Saturday comes and I get out of bed. I am thankful that I confined my imbibing to one sip of wine and one Jack Daniels last night. Nevertheless, I hurry to get showered and dressed to make the 9 AM delegates meeting. The room is divided between delegates and observers. The seats in the delegate section are filling as we enter. We get a row in the back. Andres is chairing the meeting. He has a professional parliamentarian sitting beside him. This bodes well, because there are many proposed amendments to consider and there is real interest in them for a change. Andres has no need to apologize to anyone for his English or his ability to express himself. His English is excellent (I wish I could say the same for my poor Spanish) and he runs the meeting with a firm, yet controlled hand. He keeps the discussion on track. Roberts Rules of Order make you go through specific steps to legislate, but they keep matters on point.
 
To say the least, there is no rubber stamp by the delegates. Most proposed amendments are debated, some in depth. Proposals are amended. Votes are taken. Not all amendments pass (I had favored an amendment that clarified the Delegates' ability to recall any elected officer or director. It failed to pass. Maybe next year.) Two amendments, which would allow the board to confer by e-mail, are tabled to allow further work on the wording. I have agreed to give suggestions to Mike Dreisbach. He hopes that I will join the IAL By-Laws Committee. I decline publicly, and still decline to do so.
 
The meeting is long. At one point, Pat stands for a point of personal preference and asks for the group in the back to be allowed to move from a chair to a place with a table where there are plenty of openings if they will just move the velvet cord. We reconfigure. We break for lunch. We come back after lunch and continue the discussions. This has never happened before.
 
Elections follow the by-laws. Dr. Doyle is elected to a Director at Large Position joining Dr. Caryn Melvin. Sapp Funderburk, Wendell Radcliff, Janice Hayes, and John Ready are elected to other director seats to join existing BOD member, Michael Dreisbach. Terrie Hall is the new secretary, Tina Long is president and Andres is vice president. Ian Milne remains Treasurer. We adjourn about 3 pm. The drawings and fun show are delayed.
 
I return to my room to rest. It has been like a day in court. But, soon it is time to clean up and dress for dinner.
 
The final banquet is nice. The rooms have been transformed to an eating and dancing room. The meal is excellent (what a concept for a banquet.) really moist chicken with a nice, lemony, sauce, some sliced roast beef with gravy, veggies, a nice salad and CHEESECAKE for desert (do you get the idea that I like cheesecake?). The DJ plays a nice mix of music that is not too loud.
 
After dinner, the auxiliary drawings are held. Then Richard Crum auctions off some art. He shows what a prosthesis and hands free valve can accomplish. I take sound movies of a couple auctions.
 
Then dancing. After dancing, how can we not go back to the bar for one last drink? The bar is almost out of good bourbon. Tragic. Is it the Red Hat Ladies who have descended on the hotel? Who knows?
We discuss the IAL. I comment that the IAL needs to do more to court the vendors. They are losing the goodwill of the vendors and that could be a serious problem. I am not happy that the next meeting is the week leading into Labor Day weekend and that it is in Little Rock, Arkansas. I am thinking that I won't be there next year. We shall see. When I return to my room, my key doesn't work. I go to the front desk. They seem to think that I was checking out that morning. I state that I have reserved my room through Saturday night so I could leave Sunday. There is no problem, my key is revived and I get to my room.
 

July 15

 
Sunday I rise early. I have a 9:30 flight. I go to the restaurant hoping to have the breakfast bar. Alas, it is not open until 9 when they have Sunday brunch. I can't wait that long, and don't feel like ordering from the menu. So, I go back to my room and decide to get to the airport early.
 
I put two separate tips in my pocket. One for the driver and a slightly larger one if the driver is Dan O'Sullivan. I am in luck, Dan is our driver. He is, without a doubt, the hotel's best ambassador.
 
The airport has free WiFi. I log on to check my mail. Then I read and wait for the plane. The plane is a small jet. I am in row 14. A lady is sitting in my seat expounding that she is in row 13 and that she is in the row behind row 12. There are two problems with her argument. There is no row 13, and her ticket puts her in row 17 (I guess that 7s look like 3s sometimes). The flight from Burlington to Cleveland is non eventful. As we approach the Cleveland airport, I remember that Dutch's grave is in the path of airplanes flying into and out of the airport. I, silently, say hello.
 
I grab a quick bratwurst in the airport. The plane from Cleveland to Indianapolis is a 39-seat propjet. I have not been in a propeller driven plane in a few years. The flight is smooth, uncrowded, but a bit noisy. About 1:40 pm I land in Indianapolis, and am glad to be home.
 

 

 

 

On Cults and Cancer

 

When I was 18, just graduated from high school and not even considering going to college (much to my parents' consternation and considerable embarrassment.... my father being the newly appointed State Commissioner of Education), I did what any self-respecting and rebellious young woman would do, I ran away and joined the circus. This being America in 1971, my circus would be a religious cult.

 

This particular circus was a group of born again Christians and our ringmaster was a charismatic little fellow named Brother Julius. He claimed to be the second coming of Christ, the Sinful Messiah and why I believed him or stayed with him for ten years is more the subject for therapy than a column. However, from time to time, these many years later, I think of him. My best friend is a product of those times, as is my beloved son, and some very important life lessons.

 

I had lunch with some new friends today and I used the circus metaphor with them for the first time, as we chuckled and groaned over our pasts...it only came to me as I said it, but I knew immediately why. I just, last night, finished re-reading John Irving's "Son of the Circus". It is worth a second read...not something that can be said about everything in my library, as I am starting to realize!

 

"Son of the Circus" is, simplistically, about the outsider/immigrant experience. In every culture and every country there will always be those among us who cannot or will not be assimilated. They will forever stand out and, for good or for bad, they will remind us of the fearful possibility of being different. Generally speaking, we (and by this I mean the whole human race) are pretty uptight about being different.

 

What we tend to do is join a group that is different, like us. That way we can feel separate (and, sometimes, secretly superior) while we are different with people who are, in fact; just like us. How disconcerting and yet utterly human.
 
That is, of course, what I did when I joined a cult, but Julius had his moments and the one I thought of tonight was his sense of humor. In the early days, before he became crazed with the power and the glory, he told his "conversion/Saul on the road to Damascus" story. In it, he was in the Navy, a 19-year-old Jewish kid from Brooklyn newly stationed on Midway during WWII. He was asleep in his top bunk and he hears a voice calling his name, "Julius". He looks around and asks "Hello...who's there?" The voice answers, "This is God". Julius responds, "What is your name?" Pretty astute question for a non-practicing Jew. The voice replies, " I am Jesus, Son of David". Julius thinks, "You are kidding, Jesus was a Jew? I thought he was a Roman Catholic!" Now, for all I know, Henny Youngman did that routine in the Catskills. The more I think of it, I AM SURE he did, but none of us knew that then. Julius would have made a great stand up comedian if he hadn't decided to start a cult.

 

And that is my point. Who knows where life's twists and turns will take us. Julius may have told some funny stories but he was a dangerously deluded man and I consider myself one of the fortunate ones who escaped his ungodly clutches.
 
I also escaped the clutches of cancer, which has never been charming or charismatic and, unfortunately, has no sense of humor. It can be ironic but that is decidedly not the same. Actually, Julius and cancer changed me in the same way. I learned first of all, that the world is dangerous and I probably won't recognize the first assault. I also learned that it is much more difficult to get out of a bad situation than it is to get in it. But it does get easier. Julius was the first real mess I got myself in. I got out somehow. Cancer was the second...and it doesn't matter whose fault it was, it was another mess I had to get through and sometimes it just comes down to being stubborn.

 

Now, I am an outsider because I breathe through my neck and talk funny and I belong to a club I wish I never heard of. But there is that something to be said for being different.
Because I sound differently when I talk, I now think differently. Sometimes I forget and try to be like everyone else. I will never be like everyone else again. Losing your voice changes everything. My friends all say I still sound like me. Not to me, I don't.
 
I have lost an essential part of me. I once had a boyfriend who called me his "big toe"...I still think it one of the best compliments I ever had...even if we did break up! My natural voice was my "big toe". It grounded me...it gave me confidence...it allowed me to step out and try something new. Losing it was a real blow.

 

But here I am...I found a new big toe...writing. And like Brother Julius would have said, "You have to lose your life to find it". Go figure.
 

 

 

    Practically Speaking ...
                                                                                
By Elizabeth Finchem, Tucson, AZ
 

 


 

 

 

 

 

Free Help is Seldom worth the Price...

By Lanny Keithley
 
 
A concept that ends up causing unnecessary troubles for many, is one of accepting offers from people, usually friends or family, to do some work or activity at a less than normal market price. You may think you have saved all sorts of money by having friends or family do things for you, like taking you someplace, going shopping, going out to eat, running errands, or maybe even cleaning your house. To have someone do these types of things for you is fine. Just keep in mind that nothing is free and be sure you know what is the real 'cost' of these acts of kindness. There is always an implied payment. Is it worth it? It is usually much better to get all such issues resolved before hand, so there will be no hard feelings later, on either side.

 

There are jobs or activities that must done correctly and/or on schedule. They include such necessary things as: home enhancements or repairs, car repairs, getting you somewhere on time, and whatever else you need done the right way, on time, and guaranteed.

 

Let me tell you a story to elaborate my point. Back some forty years ago, I was a young computer programmer for a local school district. We were one of the few school districts in the nation fully utilizing computers to manage all the daily activities of the schools. Because of all the new capabilities the computers provided to our school administrators and teachers, they wanted to try new things. Many of these new ideas required that we redesign our student attendance computer system, without the budget funds to do.

 

Within this progressive school district, we had large and active student 'computer clubs' in each high school, consisting of very smart future computer 'nerds'. They even had their own computer in our data center and terminals in all their classrooms. They wrote their own computer programs and were doing great student level computer things throughout the district, and had received national recognition for their work.

 

They came to us, through their teacher/advisors, and offered to write the new student attendance system. All of the school administrators and management thought it was a great idea and felt they did have the capability to do it. So, even though we, the professionals, had concerns about it, it was approved and we were tasked to provide all necessary guidance and structure so it would fit within our overall district wide systems.

 

We managed the overall design but they had full control over writing all the programs and designing all their own data files. They were a little over schedule, but we kept them under close watch and it turned out to be an impressive endeavor. The system was started and was a great success for all concerned.

 

Then, shortly after the students had left, changes and new requirements were needed in the new attendance system. We started looking into the details of how the programs were written and how the data was stored. If there was a more complicated way to do something, they took it. There was no way to change the system without redoing the whole thing. The concept of having to allow for changes, or even considering the possibility they might be needed, hadn't been part of their thought process or system design. When I presented our director with this news, he looked up at the folks in the meeting and said, "Well, once again, this proves that Free Help is Seldom Worth the Price."

 

That was the first time I had heard that saying. Since then, it has come to be proven many times for me. I cannot count the number of times I have taken a friend's offer of doing some repair or construction project which ended up costing me much more money, time, and frustration. I have come to fully respect and realize the value of what that saying really means.

 

People are selfish, goal striving creatures who have a reason for everything they do. Out of all the possible options they have available, at any given moment, they end up selecting one to do. This is done 'selfishly' and I am not using the term 'selfish' in a negative way at all, it is just that all choices and selections are made personally. The person's goal might not be immediately obvious, but there is an expected reward, of some type, in every offer of help given by everybody.

 

There is an old saying "Anything that is worth doing, is worth doing right". And, there needs to be some value or reward to them for their effort if you have any expectation that they will put in the effort to do it right. Without the specific reward and expectations being known by all up front, the opportunity for frustration and failure is high.

 

Usually, inherent in 'Free Help' is the lack of proper credentials, skills, materials, and/or tools necessary to do the work - compared to the 'professionals'. The lack of these skills and materials necessary to do the job correctly is usually what causes most of the failures and resulting recovery/repair costs.

 

Schedule is also a major consideration in certain work. Can you go without your car being fixed for a week, or go without a toilet? Choosing non-professionals to do any schedule sensitive job is a problem waiting to happen for you.

 

What if something doesn't go right? What if someone gets hurt on your property? What if anything that could possibility happen, does? How will these problems be resolved and who will pay for them?

 

Finally, the ongoing problem of supporting or guaranteeing the work must be considered. What if their labor, or some of the materials that were used, fail in the future? Will they have the resources to fix the problems without causing you a lot of additional expense and trauma?

 

Assume that "Free Help" doesn't even exist, except for a few very personal situations. It all works out much better for all concerned if there are no surprises on either side when the task is
done.
 

 

"There is No Such Thing as a Free Lunch"
 

 

 

 

 

The Sound of Silence

by Rosalie Macrae
 
 
Far be it from me to suggest that larys in Finland are different from the rest of us. Like other Scandinavian countries, they often surpass us... They have wonderful clinics and researchers. In fact the other day Dr Stina Syrjanen, from the university of Turku in Finland, linked throat cancer with some kinds of romantic habits. But we won't go into that here, as this is a family newsletter. Why I am mentioning this will be revealed...
 
The point is that the Finns are the most silent people in the world. They go for hours without speaking. They have evening classes in Helsinki teaching them how to talk to each other at parties. At Easter they give a silent 'hei' by greeting each other with a swipe from a whisk of willow twigs. The harder the swipe the stronger the emotion. It is perhaps logical, therefore, that depending on a TEP or an EL to be heard might not be such a major trauma... And I don't think they would have much use for oesophageal speech because they don't use their larynxes too much apart from downing fair old swigs of Finlandia vodka, which make the Russian stuff seem like barley water. But I may be wrong. Sweeping statements like this cause wars.
 
The other day, I was comparing the strong, silent Finns, after reading some words, from the biography of the late actor and laryngectomee, Jack Hawkins, that hit me with a jolt. I had come home twitchy, uneasy, not happy, after an upsetting little incident in a local lingerie department. Nothing risqué. I was just buying a boring sports bra. But it did happen to be black, which is borderline, saucy, I suppose.
 
Anyway, as I was saying, Hawkins—Ben Hur, Bridge on the River Kwai, The Cruel Sea, he of the rich, deep resonant voice who had his speech dubbed pretty hopelessly after the loss of his larynx, had written about his time at drama school: "Above all, I was taught to love and respect words. Each word had to be the right word and each had to be spoken in a way that its weight and importance demanded." A bit like the willow twigs. And the fields of quiet Finns picking their acres of cloudberries right now.
 
If only I had used this wisdom in buying my gardening bra from the skinny Saturday shop assistant, using words in the way that weight and importance demanded... Instead of pointing to my bosom in business-like fashion, and saying it was 34D, or, even better, writing it down in case I got a 44, I had to go and make a big deal out of it. The poor girl went into in a state of confusion when I told her—why oh why?—that even I was bigger than she was and I hoped that she wouldn't do anything silly like slimming, as she was just right... She thought I meant I wanted a bra like hers and went bright red, shaking her head, and saying she never wore one.
 
No, no, no, no, no. I smiled reassuringly, and pointed to myself. Now I had information about the unfortunate lass, which was of no relevance whatsoever. How to extricate myself? Her department boss came over to help—we would have managed perfectly if I hadn't complicated things—and I had the bra I wanted before you could say Victoria's Secret. I had been so much to blame for a small crisis, trying too hard to be normal, emphasize that I could be a paid-up member of the shopping world like anyone else, make jokes and be one of the girls.
 
I told all this to Amik—a man I know—when he came to help with my garden. He gave an exasperated kind of nod, and said I was learning the hard way that I didn't have to prove myself all the time. He had noticed that I had fallen into a maddening habit of interrupting, shaking my Servox to butt in. Other recent conversations with different people came pouring into my mind. People who had been too polite, because of my 'status', to tell me to hush and wait. Or, more succinctly, belt up. I decided to behave like a Finn in the future.
 
The next day I put it into practice and belted up in the local olde worlde camera shop. Instead of admiring the trendy new hairstyle of the boss's son, I arranged to pick up the pictures in an hour, and only allowed myself a tiny chat to tell Charlie how nimble he was in managing to develop them so quickly... And on a Saturday too. When I told him it was for a special occasion he put in the new film himself. He has seen too many pictures of my headless family.
 
The special occasion was the annual barbecue in the wonderful white garden of a woman called Maggie, a speech therapist of some renown in this part of the world. Her daughter lives in Paris with her French husband and nine-year-old daughter. Three years ago the little girl was diagnosed with leukemia. She was very, very sick, yet she smiled through tough and heartrending treatment. Maggie flew over to Paris every weekend. The last news was that her grand-daughter was so improved that she had come over here on holiday.
 
The night before the barbecue I had a telephone call from Byn, a lary friend... His normally strong, much envied TEP voice was thin and raw. The barbecue had been cancelled. Maggie's grand-daughter was ill again in a London hospital.
 
Silence was the only option.
 

 

 

 

 

This month we inaugurate a new column, one we hope makes our newsletter even more readable and enjoyable. We welcome contributions...indeed encourage them. Should you come across something you would like to share, please send to editor@webwhispers.org and put PS in the subject line. It can be just a short quote or an anecdote. It can be poignant or wise or funny or, best of all, maybe all three. It can be original or it can be something you heard or read somewhere else.
 
To start us off, I thought of these lyrics and I think they sum up the Web Whispers experience.
 
 
Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there's always tomorrow
 
Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on
 
Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you don't let show
 
Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on
 
If there is a load you have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me
 
So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'd understand
We all need somebody to lean on
 
Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Till I'm gonna need
Somebody to lean on
 
Lean on me...
-Bill Withers
 

 

 

Welcome To Our New Members:

 
I would like to welcome all new laryngectomees, caregivers, vendors, and professionals to WebWhispers! There is much information to be gained from our website, especially our Library, and from discussions held by our members on the email lists. Needless to say, we also hope you will revisit our newsletters.
 
Pat Sanders, WW President
 
 
We welcome the 44 new members who joined us during July 2007:
 

Frank Batten
Virginia Beach, VA
Albert T. Brown
Bunnell, FL
Anthony Thomas Budd
Clinton Township, MI
     
William Budge - (Caregiver)
Hillsborough, CA
William A. Chandler
Farmerville, LA
Joe Chmeleck
Mascoutah, IL
     
Marianne Chmeleck-(Caregiver)
Mascoutah, IL
Jim Currie
Naperville, IL
Bill Fairbairn
Duncraig, Western Australia
     
Gladys Yvonne Friday
Saline, LA
Herbert Fruitman
Toronto, Ontario, Can.
Jeffrey Fruitman - (Caregiver)
Toronto, Ontario, Can.
     
Robert J. Gentry
Elkhart, IN
Bill Gieseking
New Brighton, MN
Doris L. Gifford - (Returning
Member) - Renton, WA
     
Lillian Guthrie
Parlin, NJ
Francisco Guzman
Cambridge, MA
Kay Hehir
Coff's Harbour, NSW, AUS
     
Cris Irwin - (SLP)
Clarksburg, WV
Michele Jaworski - (Caregiver)
Milford, CT
Darlene Katz - (Caregiver)
St. Clair Shores, MI
     
Ron Katz
St. Clair Shores, MI
Hamdi Kuþçu
Izmir, Turkey
Jan S. Lewin, Ph.D. - (SLP)
Houston, TX
     
Linda L. Mall
Canton, MI
Emily Markstrom - (SLP)
Midland, MI
Pat Martin - (Caregiver)
West Columbia, SC
     
Pam McCaig - (Caregiver)
Whittlesey, Peterborough, UK
John F. Mc Nulty
Orland Park, IL
Nicole Moseley - (SLP)
Albany, GA
     
John Nicols
Clifton Springs, NY
Jeff Porter
Deltona, FL
Jack Schaefer
Kaukana, WI
     
Janice Smith - (Caregiver)
Covington, TN
Mary Spremulli, (SLP)
Punta Gorda, FL
Margaret Sweek - (Caregiver)
Huntingdon, UK
     
Paul Sweek
Huntingdon, UK
Heather M. Taylor - (SLP)
Austell, GA
Donna Theberge
Weymouth, MA
     
Anthony Tyrone Stateman
Cheaspekae, VA
Carol Jorgensen Tolejano - (SLP)
Milwaukee, WI
Shirley Weaver
Albany, GA
     
Phyllis Wheeler
Cass City, M
Deborah Wilson - (Caregiver)
Atlanta, GA
 

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.

For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
 

 

 

Disclaimer:
 
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
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.
 
  © 2007 WebWhispers
Reprinting/Copying Instructions can be found on our WotW/Journal Index.