January 2009

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Welcome To 2009 New & Events
VoicePoints Lisa Proper Dilemma Part III-Response Education-Med
WebWhispers Columnist Mike Burton From Me To You Experience
Voice Of An Artist Avraham Eilat From The Gut – From The Mind Art
Between Friends Donna McGary Regrets, I've had A Few Commentary
Practically Speaking Elizabeth Finchem ES-Hard To Learn ? Education
A Scottish Accent Rosalie Macrae A Happier New Year, Please Experience
New Members Listing Welcome News & Events

 

 

 

 

Welcome to 2009

It is time to write about either the old year and what we accomplished or the new year and what we would like to do. One thing we need to do is become even more efficient.

We have increased our total membership more than 400 this year and I am so thankful we have our new system in place with the database and the organized membership files kept on the members or we wouldn't have been able to handle that many new people.

Who we really need to be thankful for are the wonderful volunteers who give their time to keep WebWhispers running and we need to help their efficiency. Everything that is done in WW is done by a volunteer. That person may be a laryngectomee, caregiver, friend, someone from the medical field or a vendor. In addition to our folks who check and enter names, change information in files and on lists, we have others who read and approve each email that comes through the list, edit articles, prepare or post items on the web, keep the forum running, pay bills, send out brochures, make plans, write articles, and most of all... we answer questions.

Most common one is asking for the password. This is the same password that is published in the list email every week, without fail. It is in our weekly report. It gets you into the members area where you can look at the roster for an email address or check to see if anyone of us lives near your town. If you delete your incoming email and then want to find one that was written last week, go to the archives. The link is on the bottom of every email that comes through the list...and, yes, you will need that same password.

Your other password, the one for the WebWhispers Forum, is between you and Delphi Forums. You made it up. If you forget it, they can send you a new one. You can, however, find your forum name in the roster. Guess where that is? Under the members area and you will need your WW password. So, save it on the computer, write it down in your address book or on a sticky note.

You could give us a hand by going back to check your welcome message (if you still have it) to see if the answer to your question about WebWhispers is there. In the members area on the website, again, is a section relating to the email list that tells you the rules, how to and what is OK...and what is not.

Explore the website. Go to the home page and look at the horizontal red links across the top.
• Home • About Us • Library • Activities • Services • Suppliers • Donations • Contact Us
Click on one and it will take you to a new section. There is a world of helpful information there, especially in the Library.

Also from the home page, in the upper right corner, you can find the Members Area or the section used to Join or Update your membership information. Please use these.

Then, look at the lower right corner of the home page and you will find links to the Search or the Newsletter Indexes.

Thanks to all of the volunteers and welcome to all the new members. We are 12 years old now and during the holidays of 1996, Dutch's new site had 12 members. Who could even dream we would have over 2400 now.

Hope we all have a happy and healthy 2009.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S

 

(LisaProper@gmail.com)                      [© 2009 Lisa Proper]

 


Dilemma: Part III - The Speech Pathologist Response


Lisa M. Proper, MS CCC SLP; BC-NCD; BRS-S

 

The articles published in Voice Points, over the past two months, have presented a dilemma in which I asked for responses from the readers. Last month's issue provided the responses from the patients and what they hoped their Speech Pathologist would do, should they find themselves in this particular situation. Unfortunately, I received very few responses from speech pathologists and therefore, probably will not be able to provide the variety of responses that I had hoped for; I am hopeful that some information will be able to be of assistance to speech pathologists faced with this dilemma. I will once again, remind the readers of that particular dilemma to eliminate the need for the reader to return to Part I and Part II.

The dilemma: "A patient undergoes a total laryngectomy procedure. The patient is referred to the Speech Pathologist postoperatively either as an inpatient or as an outpatient for post-operative laryngectomy rehabilitation. The referral is for esophageal speech training ONLY. The physician is adamant that there is to be NO training in the use of the artificial larynx. Additionally, surgical voice restoration in the form of tracheo-esophageal fistulization will not even be considered until well into the second postoperative year." (If you would like additional information, please refer to the previous articles.)

The goal of this series of articles is to provide the Speech Pathologist not only with the motivation and/or empowerment to do what, I believe, is in the best interest of the patient such as noted in the "Patient Response" article but also to provide tools and ideas in which to accomplish this goal.

The Speech Pathologist Response: To no surprise, ALL the Speech Pathologists who I have talked with over the years regarding this dilemma, believed that the patient should be educated regarding the artificial laryngeal device(ALD). All wanted to provide the device to the patient, however, some simply could not, because of their working environment and needed ideas for how to "get around" the order.

The overwhelming consensus amongst Speech Pathologists (SLP) is that the SLP should try to educate the referring physician. This education may be as quick and easy as simply picking up the phone and calling the referring MD and discuss the order and how you believe it would be in the best interest of the patient to provide ALD training. This does appear to be very effective with most physicians complying with the ALD training request. If after this phone call, the MD still refuses, now what? Continue attempts at education by providing the MD with written information. Before ending the phone call, ask the MD if you could send him some information and published articles. A visit to the MDs office may also be a necessary education tool. I have actually made an appointment with the MD at his office and taken the devices and information for a "show and tell" education session. (Not only in ALD but in other areas of laryngectomee rehabilitation as well.) In the case of the ALD, it may also be advantageous to take a proficient ALD speaker with you who is also a good esophageal speaker and have the patient present the advantage of the ALD and how its use did not hinder him or her from learning esophageal speech.

Continuing with the education theme, another thought is to invite the MD to a local laryngectomee club meeting. You will probably have the best luck securing the MD's attendance by inviting him/her to speak at the meeting or invite the MD and maybe all the ORL MDs in the area to the annual club party which may have a theme of something like "Thanking the MDs". This would allow for social interaction with many laryngectomees and, hopefully, more progressive thinking ORL MDs.

Social interaction with patients and, in particular, laryngectomees is a powerful education tool. It is probably hard for most of those who are reading this to believe, but most SLPs and even fewer ORL surgeons have any social interaction with laryngectomees. Any professional who has ever attended a local club meeting or even better, the various state organizations or the IAL Voice Institute knows how much is learned at such an event. Try to provide such an event for this referring MD to attend. (It's also a great idea to have the nurses, clinical assistants, physician assistants, etc, that work with laryngectomees to attend these events as well. You will gain great allies in laryngectomee rehabilitation with their attendance to such events.)

Most physicians will respond well to education from that first simple phone call. But, unfortunately, not all will respond with the positive response that we desire. This is the case of the referring MD about whom the article was written. Now what? I believe it is worth repeating the suggestion made in the patient response article, regarding the need for the patient to directly discuss their situation with their physician. It may be necessary for the SLP to educate the patient regarding this option.

Patients may not realize it but they can have more control over their medical treatment if they take a more active role. However, in healthcare environments, many patients find themselves in a role in which they feel they have no control over anything and therefore, don't inquire or even ask the most basic questions. As SLPs, we generally encourage questions and ask the patients what they want from us as professionals. MDs don't. (Most of the time anyway). Therefore, it is important that the SLP educate the patient as to the appropriateness of their desire and need to talk to their MD. As I stated in the previous article, I do believe that most MDs when directly confronted by the patient for a reasonable request, would find it difficult to deny.

There are still MDs who will deny this very appropriate request to use an ALD. The SLP has tried, the patient has tried and still no order for the therapy or the device itself. The device itself is easy to receive without an order from the MD either in the form of a loaner device or by the patient buying the device out of his pocket. However, the SLP should not encourage this, as there continues to be alternatives to the situation.

It may be time to discuss the option of "another MD" with your patient. This does not necessarily mean another ORL surgeon, but could simply mean, using another of the patient's physicians. I have had good success at receiving orders from the patient's general family physician. This physician then becomes the referring physician for all the laryngectomee rehabilitation with this patient and our problems to the dilemma are solved. However, the problem may not be over for the laryngectomee patient. Should the patient use the ALD device ordered by his family physician when he or she visits the ORL surgeon? While I would never provide an answer to this question for the patient, I believe it prudent for us to allow the patient to think about this scenario before it occurs. The patients I have worked have chosen both routes. And I have had a call from an irate MD. I explained to him I had the written referral from the patient's family practitioner, there was little he could do, except stop sending patients to me. And for about a year he did stop sending patients to me except for the more "difficult" patients. Hmm.....?

Within the same idea of using another physician, the SLP can remind the patient that he/she is a consumer and they are always welcome to "shop around". This must be done tactfully and without making any direct referrals, but mentioning to the patient that they can seek help elsewhere, is very well within our means to provide the best patient care that we can.

As Speech Pathologists our obligation is first, and only first, to the patient in providing the best and most current medical care possible. We must provide the care we know to be the best for the patient. We are ALWAYS in a position to provide education to the patients on all forms of speech rehabilitation; there is no exception. Even to the patient who won't ever be able to use a TEP due to physiological problems, we tell them about TEP and do not deny them the knowledge. Nor should we deny the knowledge of the ALD to any patient, despite what the MD ordered.

Providing the therapy and the device, without an order, may prove to be a little more difficult depending on the working environment and government regulations. However, we, as SLPs, can legally treat patients without MD orders. The problem being that insurance will generally not pay for non-MD referred service. If the SLP is unable to secure a MD's order for an ALD and its treatment, the SLP must educate and empower the patient to take his/her medical care by the horns and get the orders for the care they deserve and the care that they want.

 


 

 


 

FROM ME TO YOU

by Mike Burton,
Middle England, UK

 

With thanks to the Beatles for the main title, the paragraph titles and lyrics.

The names have been changed to protect the innocent and in some cases save their jobs. This story is dedicated to my wife and children for the support they gave me before, during and after my ordeal.

A Hard Day’s Night

(You know I work all day to get you money to buy you things)

The sun shone brightly on the front of the four bedroom detached home that Susie and I had worked so hard for. After Thomas was born, Susie had decided she wanted to give up work and be a full time mum. She was good at her job and returned on a couple of occasions on a temporary basis. This was at the request of her employer who realised her value. Stuart arrived ten days short of two years later than Thomas. Although it was a struggle, life still went on. I would get up at around 6am, make tea upon weekdays and put a cup on Susie’s bedside cabinet before I left. Susie’s alarm would go off and she would get the boys up; the tea would probably by then be cold. She would make a fresh brew and get the boys sorted and off to school.

It was Saturday morning and as I lay there, Susie started to stir. Meanwhile I could hear the kids playing on computer games in their bedrooms. I really needed that first cup of tea and swung my right leg out of the bed followed quickly by my left. Now sitting upright and without looking, I fished around with my feet only to discover that I was trying to get my right foot into my left slipper. With all of this movement and fidgeting, Susie finally awoke. Coming around from her slumber and rubbing her eyes, she said that she would make tea since she had to hang out the washing that was done overnight, almost immediately getting up and going downstairs to do so. I released my partially badly put on slippers and as they landed on the carpet, swung both legs back under the duvet and snuggled down again. Susie returned some time later, washing now out on the line; she held a tray with three cups of tea upon it. Thomas, our eldest son, did not really like tea, preferring to drink fresh orange juice or fruit squash. Susie called Stuart to inform him of the tea’s arrival which he acknowledged and then promptly ignored, engrossed in the game he was playing in his room. By the time he had been reminded again about the tea’s existence, it was cold. Although we had nothing to prove otherwise, it was Susie’s and my belief that it was unusual for any child to drink tea, let alone a cold cup of brew. That did not stop him as the tea disappeared in one effort, making both Susie and I still lying in bed shudder at the thought of it. “Tea is tea”, he said, putting the empty cup back onto the tray and disappearing back into his bedroom to continue with his game where he had left off.

This was a reasonably ordinary Saturday in our household, but my god, how it would change over the coming months!

I was diagnosed with cancer of the throat and as a result of my surgery I became a neck breather. I was in hospital for two months, which included a three week course of hyperbaric treatment to aid healing. This was followed by 30 session’s of radiotherapy, which in a way surprised me- why do they, in effect, give you cancer in an attempt to cure it?

At that time, I could hardly speak anything audible and was heavily scarred and disfigured. On my chest were wavy red lines starting from my nipples up to my shoulders where stitches and staples had been put in. I also had skin removed from both thighs resulting in similar red coloured squares on both of my legs. My neck and jaw on the left side were a complete mess due to the surgery, plus the fact that the maxillofacial unit had to break my jaw to gain access for the surgeon to do the business end of the procedure. These things would always remain although there had been a marked improvement in my appearance since I had left the hospital. Nothing would ever come back to what it was. I also now had no teeth, but managed to get by.

Susie had lost weight since the start of it all. She was, now, both mother and father, even as she worried about me undergoing not only the surgery we had been advised of but the corrective surgery which had not even been considered previously. Susie also had the unenviable task of keeping the other family members informed of my progress. After all of the surgery, to this day, I have no idea how long I actually spent in ICU or the HDU (high dependency unit). I have never asked the question and do not really want to know the answer, as it is history and of no real importance. What I do know is that each day relatives and family wanted to be kept informed with as much as Susie knew. The hospital said little and it appeared you had to force the information out of them. If you didn’t ask the precise question, no information of apparent use would be forthcoming. It was like pulling teeth. So, there was Susie in a position where she was trying to do her best, but not coming out with all she wanted to know. Raymond (whom you find about soon) also got involved towards the end. The table bashing by them increased until they were happy.

Ultimately, this was going to pay dividends. Sometime later Susie’s mum was taken into hospital, strangely enough with a growth in her throat that, as it turned out was not cancerous. Susie travelled, at my suggestion, to Norfolk, and she went in to the hospital to speak with the surgeon. Going in with her dad, with all guns blazing, she was not putting up with the bullshit twice, for God’s sake. Susie knew what questions to ask and would consider if what came back made sense. Her dad sat beside her, in awe- he was gobsmacked. Her questions were definitive and the answers she required, in her opinion, were expected to be the same, not the normal UK NHS crap. And it worked! The remaining members of the family, who had made the trip to see their mum, sat outside the meeting room (as only two were allowed in) and were briefed accordingly when Susie and her still shell-shocked dad had finished. Susie was happy with the outcome thus far.

Susie’s mum made a full recovery. Some months later Susie, the kids and I went to see them. Although she did try it on at times with regard to, I can’t do this and that, Susie would stand none of this rubbish and let her know it in no uncertain terms.

“Get off your backside and get on with life, for God’s sake, mum”, she would say. “Come and help me prepare the vegetables for dinner. You can still peel a carrot”.

Her mum would get out of her chair and try to make it obvious that it was all an effort, which was a waste of time as Susie was in no mood to take prisoners, even with her own mother! Her dad and I kept our heads down. The rest of the family had gone over the top and would pamper her something rotten and loving every minute of it! Who wouldn’t? She was no longer ill, just making the most of it!

Back there, in the beginning though, with me, there were three sets of relatives to keep informed; both sets of parents and also my son Raymond, from a previous marriage, who lived with his partner Jenny, soon to be his wife. None of these people lived close, so they all needed to be updated by phone; it was the same story almost word for word, times three. None of them lived within 90 miles of Susie and me. Then of course, there was Susie visiting to fit in around the children’s school times and housework. Me, trying to write as quick as I can in order to reply to someone who can speak was a big problem. Most of it, due to drugs, was probably misspelt rubbish anyway! I didn’t really have a clue, just trying to get my point of view or statement over.

I remember nothing about my surgery, what was done and when. The only thing I knew was the date I appeared at the hospital, worrying about the operation and being taken to the theatre in the morning.

I vaguely remember a vision of Susie and her brother-in-law, Andy, in ICU, who came to see me when at some point they thought it was all over. I understand, after talking about it later, I was not a pleasant sight to look at. She cried and Andy gave her the support she needed, for which I thanked him later.

Raymond, Jenny and Susie would visit when they could. Raymond told me later that when I was in HDU he would hold my little finger and talk to me. Apparently, I would try to talk back to him. Laughable in hindsight, considering the surgery I had undergone; a waste of time and energy, but under the influence of drugs I was still giving it a go.

Neither Susie nor I were entirely convinced that the anger and depression we had endured for the past months had gone. We were still having good days and bad days. Prior to my surgery, in over twenty years of marriage, I could count on one hand the amount of arguments we had. After all of this there could be one or more in a single day.

I found it strange questioning myself when I awoke what today would be like, obviously hoping it was going to be a good day and not a bad one. I expect that most couples never thought like this, except if yesterday day or night had been a particularly nasty one.

Our two children must have been affected by it all, but being children, they did not let on their fears or reservations very easily. Whilst I was in hospital, they had suffered sleepless nights, complained of headaches and various other aches and pains. Was it as a direct result of everything that had happened with my surgery? Was it just the boys just being boys and trying to seek attention, or that Mum and Dad did just not act in the same way anymore? Even to this day I do not know.

Whilst I was in hospital, we were advised that counselling was the answer to the family’s needs. During and after my stay, Susie had numerous sessions. Even when asked the question, she was not sure if they had helped, but she probably found it easier to speak to somebody who had an unbiased opinion of the situation. The boys were told by Susie that a lady would be coming to ask them some questions too. They dismissed the idea initially, but were persuaded by Susie to go ahead. It was obvious that they were not interested in talking to an unknown person about anything, especially about their Daddy, and they didn’t either, with the lady leaving with about as much information as she had arrived with, in the first place. As for me, an invitation to attend a course finally arrived through the post. After all I had been through; I was now finally being given the opportunity to try to get my head sorted out. This was now four months after leaving hospital and caused by presumably a long UK NHS waiting list, but after all of this time would it help? I wondered if I could be bothered with it at all. I refused the appointment.

Positions in the household had now changed dramatically. I was no longer the breadwinner I had been for twenty plus years; the responsibility would now fall on Susie. She had not worked for a long time and needed to get back in the market place again. This was not going to be an easy task; we both knew this. I would now be the house husband, something I knew I could do but was not proud of. I had been, and wanted to remain, the breadwinner but the odds were stacked against me. The trouble was that I had been signed off sick.

Even knowing that, I had three things on my mind: firstly as an accountant, I could earn more than Susie, secondly even if I was able, could not find work until I was signed off by my GP and lastly, would anyone want to employ anyone who was not appealing to the eye and could not speak properly? After all, I thought to myself, I was no lesser an accountant than the day before my operation, but that’s the way it goes, I suppose.

At my previous company’s request, I had a professional photograph taken to go into our company “Report and Accounts” for the shareholders, with me making a move playing chess. The idea behind this was that the two combined in that you needed a analytical brain for both. They gave me a framed copy. I found it one day when clearing out a wardrobe and realised how much I had changed. This photograph had been taken 5 years ago and that was a real reality check!

After my treatment, Susie did not like to be seen out with me anymore as facially I had changed so much. I was not the man that she had married. I secretly nicknamed her “The Queen” on the basis that I had to be at least three feet behind her if we were to be seen walking out together to do shopping. I did not like this but had and would have no argument at the end of the day.

Lovely Rita

(Rita, Rita, meter maid where would I be without you?)

Prior to my surgery we carried on with day to day life. The only real thing that had changed was that my cough was getting worse, producing phlegm more often and now for the first time, I was finding it difficult to swallow food. Although she thought I was a pain in the backside, Susie realised I still needed to be fed after all. My diet was changing to accommodate this. Over two months had elapsed since my GP had told me I was to be referred to see a surgeon at the hospital. Then one day in late April, when I returned from work, the letter of appointment had finally arrived. My appointment with the surgeon had been fixed for mid-June. This would now be four months since the date my GP had originally referred me to see him. I sat back in a chair looking at the letter in disbelief. If I had been with my previous employer (prior to being made redundant due to a management buy-out) I would have been covered under private medical insurance; these months would probably have been days. After the buy-out was completed the five Directors walked away sharing GBP 43 million between them. I did get a reasonable bonus after all of my efforts in the buy-out plan, plus redundancy. I knew that the countdown over the next two months or so would involve more worry. But I managed to get some temporary work which helped to take my mind off the situation for a while.

The day had arrived. The country was in the middle of a heat-wave and today was no different; it was going to be another scorcher. The appointment had come around too quickly for my liking. The last two weeks leading up to it seemed to fly by but I knew that really it was all in my imagination. Susie took me to the hospital, not only to give me some support, but also at my request knowing that I would be a danger to other road users in my current state of mind.

Upon arrival at the hospital, Susie was getting increasingly frustrated in finding a place to park the car. I was silent, fearing what was going to happen. It appeared that there were more parking spaces for the staff than visitors. Eventually we found one. It seemed to be a long way from the ‘pay and display’ machine, but ultimately transpired to be even further away from the surgeon’s office. I got out of the car to stretch my legs, improve on my suntan a bit, and lit a cigarette. Taking a long drag on it to help calm my nerves, I watched Susie walk off into the distance to get the required ticket. Not more than a few minutes had passed and two wardens approached. One started to open her pad and select a fresh page.

“Is there a problem?” I enquired.
“There’s no ticket on this vehicle.”
“I’m not surprised... that’s my wife,” I said, pointing into the distance, “She’s gone to get one.”

Stupid person, I thought, taking another drag on my fag. I was not in a frame of mind, bearing in mind what I was there for, to be nice to anyone at the moment...after all, it wasn’t rocket science was it? Maybe it was for her.

With that, Susie walked away from the ticket machine but not back in the direction of the car.
Now, even I was confused. Susie then disappeared behind a high sided white vehicle. I knew she had gone to get a ticket but her actions were not supporting my argument. The warden walked over to talk with her colleague. I took yet another drag on my now diminishing cigarette, eyes still firmly fixed on my last sighting of Susie, but with no positive result.

Licking fingers to moisten them, the warden started to flick through the pad to find the original page prior to our brief conversation. Having found it she was just beginning to write when a voice came from the rear.

“What the bloody hell do you think you’re doing?”

It was Susie brandishing a valid ticket in her hand, which she was shaking at the now surprised wardens. “Half your ruddy machines are not working at all. You have to do a tour of the car park to find one that is.” she added.

I knew Susie disliked traffic wardens in the first place. The warden ripped out the half written ticket, screwed it up and threw it down onto the gravel coated car park.

“That’s not our problem, love, we only ……”

“…..don’t call me, love, and for God’s sake, have some consideration for those who have to find a place to park let alone a parking ticket”, Susie said before the warden had a chance to finish.

Now, where was the litter warden I thought to myself? I don’t think they had one.

Susie opened the driver’s door and placed the ticket on the front shelf for all interested parties to see. The wardens turned and walked off in search of their next victim, not seeing the repetitive V signs that Susie was gesturing behind their backs. I could not help but smile at this, my 5ft 4in bundle of dynamite putting them in their place. I then proceeded to light another celebratory cigarette as we commenced the long walk to the Surgeons surgery.

 

 

 

 

From the Gut – From the Mind

 

I am sometimes asked, when a piece of my art seems to be difficult or disturbing, whether it was created after and influenced by my experience with cancer. The answer, in most cases, is no, it has nothing to do with it; this is an earlier work. In fact, much of my art after going through the trauma of a laryngectomy in 2000 bears no trace of this event that I am aware of. Of course it is possible that, subconsciously, I create art differently because of these changes. After all, every experience leaves its imprint and in the case of an artist, it might seep into his work.

One day, toward the end of the 1980s, I went to my local post office. The last thing I remember is standing in line waiting for my turn. When I woke up a couple of days later, in a hospital bed, I was totally confused and disoriented. I was told that I had fallen down. The ambulance was called and took me to the hospital and when asked, I didn't know who I was. They could identify me only thanks to a document found in my pocket.

The doctors couldn't decide what had happened and it remains so until this day. All that is left of this strange event is an envelope with CT images of my brain taken at the time.

A few years later I worked on a series of drawings entitled "Head". They were simple universal shapes that for me represented the head, and inside them I implanted jagged patches of black paper that acted as a reminder of the human vulnerability to unpredictable threats which ambush our body behind every corner.

Avraham Eilat, two head drawings, 1991


While working I suddenly recalled the CT brain images I kept after the event described above, and decided to check if I could use them in my work. From my experience with photography in the past it was clear to me that those transparencies were, in fact, a negative of which a photographic image can be printed. However, I wanted to get from the prints something that could go beyond a simple image and turn them into a more complex visual work. Everyone familiar with printing photographs knows that a scratch in the emulsion side of a film is printed as dark line on the print.

Avraham Eilat, My Brain,

scratched C.T., 1992

Avraham Eilat, Birth of Language,

scratched C.T., 1992

   
Avraham Eilat, Right-Loose, 1992
Avraham Eilat, Lucy, drawing & collage, 1991
   
Avraham Eilat, Juicy Lucy, etching, 1992
Avraham Eilat, Lucy, etching, 1992
   
Avraham Eilat, Lucy with Hunters, etching, 1992

 

Thus I began scratching the CT film. While doing it, I was thinking of what the art historian, E.H. Gombrich, wrote in his book, "The History of Art". Trying to explain why, in some of the stone age caves, marks of hits made by sharp tools in the painted animals were found, he suggests that the cave men believed that injuring the animal's image might help in hunting them. Even today, similar beliefs can be found in different cultures that use Voodoo rituals. In order to demonstrate the psychological effect of such activity, Gombrich suggested we should try to find out for ourselves if we, enlightened people of today, are able to damage a photographic image of a beloved person.

Animals, Lascuax cave, 15000 b.c.

And so, while scratching my own brain image, I asked myself if what I am doing was not dangerous, a kind of playing with one's destiny. But, the impulse of creating art took over. I continued working on the negatives and printed them as photographs. I scratched very elemental symbols, something that might be the beginning of a written language, something between instinct and intelligence- the birth of consciousness.

Later on, the shapes of the eyes and nose area in the CT image reminded me of pre-historic statuettes of women, known in the professional jargon as "Venuses", images that represent fertility and plentitude. Following this discovery, I made a series of works that combined the very ancient primitive instinct with the up to date technology.

The Venus of Willendorf, 24000 bc
 
Avraham Eilat, Scroll of Venuses (detail), 1995

 

This is how I work. One thing leads to another. Everything can serve as a source for new ideas and thoughts. Time loses its meaning when very ancient creations merge with very modern technologies.

 

 

 

 

 

“Regrets, I’ve had a few…”

 

New Year’s resolutions, despite all their optimism, are tinged with regret. After all, you wouldn’t be resolving to do something if you already had done it, now would you? But, lately I am startled by the things I regret and the resolve they inspire. While house-sitting this past week I scoured my friends’ bookshelves for some new reading material and came across a collection of Opus cartoons from 1984…how could I have missed this stuff the first time around? I get all the references to the big issues of the day and I am pretty sure my small town Maine newspaper carried this strip, but, sadly, I missed it. I missed out on a daily chance to laugh and commiserate and snigger knowingly.

I especially love to snigger knowingly. It helps to compensate for all those times I must weakly smile unknowingly. I don’t mind not understanding why our economy is in freefall due to incomprehensible stock options and regulatory issues even after they are patiently explained to me by earnest economists, but I do hate it when I don’t get a joke. I suspect that a well-developed sense of humor is going to go further in getting me through this current crisis than a well-developed understanding of why we are going through it in the first place.

So, in the spirit of “Few Regrets” or in my case “No Regrets That You Will Ever Hear About”, here are MY 2009 New Year’s Resolutions (not necessarily in order of importance, since resolve and self-discipline have never been my strong suits):

Pay more attention to my cats. While I was house-sitting I also came across Cleveland Amory’s “The Compleat Cat” (yes that is how it is spelled) and since it was published over a decade ago- once again I missed out, but better late than never. I should get extra credit for reading him back in the Saturday Review days, as a child, I might add. Regardless, I was house-sitting and although their dogs are very friendly DUH! – the cat is “Her Elusiveness” and so I was missing my cats who are very social but perhaps not as intellectually discerning as Mr. Amory’s Polar Bear. I resolve to work with my cats on their vocabulary.

Flirt more often, even shamelessly, if necessary. Not with the bag boys at the grocery store- that is disgusting…but there is a nice looking man (of suitable age) in the produce department. Probably a retiree looking for extra income and, hopefully, not a recent parolee. Although, with my track record, one can never be sure. Flirting is a good way to re-assert one’s place in the human race.

Write something every day. I am one of those people who think she “has a book in her”. So do my friends and family- god bless them- and they have been struggling mightily to deliver me of this offspring. Being from New England and heralding from a long line of Red Sox fans whose anthem was “Wait til next year”…of course, that curse was broken…maybe this year?

Stop being embarrassed by my voice. This is going to be difficult. I have a grandbaby due in March- the first for my son and his wife. I am already missing the idea of a Gramma’s melodious voice reading bedtime stories. But I have decided that I will not be Grammie or Nana- I will be Buzzy- and I WILL read to the little babe. And when I am really old and she is grown, she will call me, affectionately, The Buzz and say I was “a real character” and mean it in a good way.

Laugh every day…even if I don’t exercise or eat right or…horrors – floss… at least find something to tickle the funny bone. Re- read Calvin and Hobbes, The Far Side, Mark Twain or James Thurber…re-read those letters sent home from camp or watch old George Carlin. Watch Tom and Jerry or Charlie Chaplin…laugh at the great cosmic mystery of life.

Tell the people you love that you love them. Never underestimate the power of those words…no matter how you utter them.

Pay attention…it all goes by so very fast.

 

 

 

 

 

Esophageal Speech: How hard is it to learn?

 

Since we are beginning a New Year perhaps it is time to take a fresh look at what could be, for many, the answer to a prayer. Currently we are all looking for simple inexpensive solutions to practical problems. Esophageal speech is the stated goal for some of our newest members. I’d like to share some information to gain a basic understanding of how esophageal speech works.

First, let’s deal with why some of us, without question, accept the statement that “esophageal speech is too hard and takes too long to learn”. Compared to what?
Assuming it isn’t necessary to restate here that we are all as different now as we were prior to our laryngectomy surgery; the cancers and the necessary therapy were also very different. The one thing the majority of us have in common is a laryngectomy.

For speech options you probably met with a speech/language pathologist (SLP) prior to surgery or soon after. This is a very critical time for several reasons, because it can set the tone for your post-op rehabilitation and the rest of your life. Most SLPs, as graduate students, had limited classroom instruction and lab time to deal with alaryngeal voice in communicative disorders classes. Six hours is average. They are lucky if they have one of our outstanding mentors with PhDs, who are clinicians as well as teaching professors and who have worked first hand with laryngectomees during rehabilitation.

In some cases the doctor ends up in a position to make decisions for us, especially when it is an emergency surgery. The doctors may have been instructed on how to deal with laryngectomy surgery, and the quick solution of primary puncture for TEP as part of the laryngectomy. When there is a little time pre-op, some doctors include the patient (and family members) in the decision making with a pre-op visit to an SLP, and/or a local laryngectomee support group where they can observe the various methods of speaking without vocal cords used by well rehabilitated laryngectomees. This one hour visit can make a huge difference in how the whole family imagines the recovery and future.

Let’s go back to the question of “how hard is it to learn esophageal speech? (ES) That’s esophageal – “gee-al” as in gee whiz, not “geal” as in geese. Esophagus, as in “Gus” - two different “g” sounds due to the vowel that follows -E or U. Forgive me, but while we are diverted, I really have to cover the other mispronunciation that is common. This is for the newest members who want to learn everything about their new experience. The word larynx is pronounced “lair-inks”, not “lar-nicks”. In my neck of the woods I was taught the wrong way of putting the y after the n (larnyx instead of larynx). I had to get with the program when speaking about my situation. Don’t take my word for it. Look it up in the dictionary. Yes, even professionals mispronounce these words. We teach everyone we talk to about our surgery and rehabilitation. We didn’t know much about all of this before out surgery and we can help by teaching others as we adjust.

If you are lucky the first mention of ES is during the meeting with an SLP since this seems to be the most common scenario. Remember they are people too, and as different from one another as we all were pre & post-op. I understand where they are coming from, and why they arrive at these assumptions after trying to produce ES themselves. We also have to keep in mind they may have been told that ES is” hard to learn”, and, by implication, hard to teach.

Their physical problem with ES is that they still have a larynx. Yes, they can close their vocal cords and achieve some esophageal voice for demonstration. It is possible. Some are really good at uttering a complete sentence in ES. Now, imagine the resistance your larynx presented when you recall speaking on a long burp after a meal or drinking carbonated beverages. Although this gaseous air is moving up the esophagus very powerfully this is not what we mean when we refer to esophageal speech. For those who use the electro-larynx (EL), you may hear a double phonation while you’re speaking and a rush of air with a burp creates another voice at the same time. That air may be from a meal or air from the consonants you’ve been exaggerating while talking with the EL, or mouthing with the hope your listener will read your lips or hear your “almost whisper”. A “K” from the back of the tongue is like shooting a cannon full of air straight down into your esophagus - powerful enough to go straight to your stomach non-stop.

There are so many physical changes for us when the larynx is removed and the resistance from cartilage and tissue are no longer there. It is much easier for us to get air into the esophagus and release it up and out if we know the next step to keep it moving dynamically north instead of south. An example I use while teaching is the balloon. To begin, put your lips together and let the air in your mouth puff out your cheeks. No lung air is necessary for this step. If you have a small balloon to work with…fine. Or, you can imagine moving the air from your mouth into the neck of the balloon to inflate it one mouthful at a time. Do not remove the neck of the balloon from your mouth to re-inflate your cheeks. This air is coming into your mouth from your nose. Surprise! Your nose is still connected to your mouth. You may even have an increased sense of smell doing this exercise. An important part of this exercise is to observe the air in the balloon that was under pressure and how it escapes on its own. Use this fundamental concept to allow the air to move up your esophagus, and out of your mouth as sound. Speak the names of things around you if this happens.

For a simple ES exercise put your hand in front of your mouth and feel the air that come from making the letter “P” sound. Really press your lips together to pop the P sound. Understand that the same amount of air is also going back into your mouth and will under this pressure enter the top of your esophagus…no “swallowing” of air necessary here. If you do this in front of a mirror you will probably be able to see the air inflate your esophagus just like a balloon.

The next move is to learn to open the top of the esophagus to allow the air to pass upward and out into your mouth to be shaped into a sound like “P-ie” or “P-ah. The top of the esophagus is the sphincter called the cricopharyngeus, or swallowing sphincter. Now, remember…with the balloon we didn’t have to swallow anything. Swallowing is when we move saliva, food or liquid down toward our stomach. Air can be moved into the top of the esophagus in small amounts under very little pressure that is more like tucking, pressing, or moving about a tablespoon of air - that amounts to a mouthful or less. The target is where the larynx used to sit. Imagine now a figure 8 of dynamic air that goes down into the esophagus and in less than an instant it returns up the esophagus, vibrating the walls of the esophagus (like the neck of the balloon) all the way up as a sound generator.

Once you master how this feels, and how it works for fluent, continuous ES, there is nothing more to charge, buy or have replaced by someone else. You can travel the world with hands free speech. A goal that I believe is worthwhile. It is entirely possible to use ES, TEP and ELs, and the Tokyo, each at a different time for demonstration or need.

In future articles I plan to offer a list of very practical hints that will make the concept of esophageal speech less “hard” for those who wish to master the technique.

Elizabeth Finchem
 

 

 

 

 

A Happier New Year Please.....

writes Rosalie Macrae



By the time you read this 2008 will be a memory, the usual potpourri of great joy, family traditions, pregnant silences, Gaviscon and double meanings, and the inevitable post-mortems from the wiseacres who knew it always happened when you put these two together in the same room. The tree will look diminished in the corner, soon to be recycled in some faraway place where they have their own quaint rituals like December 25.

But this January is different, grossly so, in my bit of the galaxy this year. It will be countdown time until they hold the inquest in a couple of weeks. The coroner---who only has a pile of reference documents in black ribbon to sum up a life of 37 Christmases---will make her pronouncement on why my friend's son, Harry, took his own life in its prime. The postman who knew him as 'that nice gentleman' had wept when told why the mail had piled up.

For some, it has been the best of times. For others, like my bereaved friend whose second name is, with a cruel irony, Dolores, it will always be the most sad. They had not seen each other for seven years, Dolores and her son, after a huge disagreement. Around Cbhristmas. Nobody knows what the row was about. Apart, that is, from the coroner who will reveal all she has discovered, as it is her job. My journalist daughter is relieved that the story will not be on her patch. It has details which are bound to make the headlines. Friends have no special treatment.

I am not a strong enough character to evade this suicide tragedy, tiptoe around it, and change the subject or do more than touch on the tight feeling in my head when I went to pay the gardening lad to find that he had given all my carefully nurtured whispering winter grasses a short back and sides to give me a nice surprise. And, yes of course, I tipped him.

One odd side effect of my becoming a laryngectomee is being treated as a really close confidante, entrusted with dark family secrets which people like getting off their chests. This is very hard to live up to when your lips are no more sealed than anyone else's. Just a Jo average. In the old days I had a warm Scottish voice which was a great gift for a writer and opened many doors. It also attracted lots of five-star good klatch. So much so that I found these secrets very burdensome to keep, and wished people would tell somebody else. Now I have become that somebody else. It seems as if speaking with an EL has empowered me with discretion. There is a sort of tacit feeling that you will listen and not tell. It would indeed be difficult to whisper indiscretions with my Servox although some larys of my acquaintance do it to save their batteries.

When a young 42nd cousin, recently accepted that she was fonder of Eves than Adams, she took me out for lunch, just to listen and not project what her conventional family would say. I was so wise these days, she said. So understanding. If only she knew that I was the same Rosalie and would be on the phone to my daughter as soon as I got home. Don't tell anybody dear, but.... This cousin has five sisters but they would all have talked at once and Maria knew that they would have suggested clubbing together to pay for treatment. Yes, treatment.

The suffering of Dolores is on a different level and too sad to put down on screen. I have been listening harder than I ever have in my life, trying to make sense of what the young man did. I cannot advise and my silence is the only solace I have to offer. This is what she seems to need. But I know it is not enough. Perhaps a man of whatever cloth will get to the depths of it and know what to do. How she can get some peace. Perhaps even smile again. At the moment she is controlled, frighteningly so. I remember telling a chosen few about my own crisis while waiting to have my voice taken away and the most helpful were the listeners. They did not tell me I would soon get used to it. One granddaughter helped me to make a last tape and I sounded so hoarse and sore that we agreed anything would be an improvement.

Dolores is trying to focus on the happy boyhood times, how her son collected all sorts of things. When she went through his rooms she found a collection of Harry Potter books. One thing at least she knows they had in common. She will try to blot out the rest, and go back out there she says. Perhaps she might save someone else from giving up. I think it is too early and she herself is going to need a lot of help.

I suppose that what her son did in deciding to end his life was, in its heartbreaking way, no more remarkable than deciding against laryngectomy, as some do. They tell the throat surgeons to put away their tools, although surgery is the only way to slowly become a paid-up member of the human race again. Thank goodness there has been enough strength in most of us to choose life.

We may never know this Harry's gremlins. They were darker than anything dreamed up by JK Rowling; or, thank heavens, by larys in our most sombre bouts of the miseries.

 

 

 

Welcome To Our New Members:

 

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 40 new members who joined us during Decrmber 2008:

 

Kindra Alaimo
Framingham, MA

Jerry Alexander
Fort Ogden, FL

Leticia Luciano Antolin-(Caregiver)
Milano, Italy

     

Sandy Barner
Martinez, CA

Giovanni Bedin
Milano, Italy

Joeann Bowerman
Danville, AR

     

Brad Bradley
McAllen, TX

Connie Brewer - (SLP)
Manning, SC

Mike Burton
Norrthants, UK

     

Lore Cailor
New Castle, PA

Jim Eitel
Telford, TN

Mary Ellen Cullen
Lake Havasu, AZ

     

Peewee Edwards
Shiloh, NC

Vircy Evans
Jacksonville, FL

Mohammad Farooq
U.A.E (Dubai)

     

Roy George
Chicago, IL

Ralph Hidalgo
Anaheim, CA

Linda Hill
Corning, NY

     

John Hines
Cascade, VA

Mona Huckaby - (Caregiver)
Copan, OK

Clarence "Ray" Kelley
Red House, WV

     

John Kries
McHenry, IL

Mary Lane
Columbus, IN

John McIntosh - (Caregiver)
North Branch, MI

     

Mike McQuade
Yuma, AZ

John J. McTeague
New Port News, VA

William H. Mehring
Albertville, AL

     

Frank Wayne Meligan
Spring Hill, FL

Terry Mitchell
Woodcroft, S. Australia

Jim Murphy
Staten Island, NY

     
Douglas F. Nusberger
Harlingen, TX
William M. Patberg
St. Petersburg, FL
Albert Reeves
Gardendale, AL
     
Sharon Rhodes
Lithonia, GA
Alfredo Soto
El Paso, TX
David W. Springer
Hopwood, PA
     
Nina J. Springer - (Caregiver)
Hopwood, PA
Shane K. Todd
Davenpot, IA
Craig Walker
Dayton, OH
     
John Wicks
Sacramento, CA
   

 

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
 

 

 

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