|Name Of Column
||Never Say “Never”!
||News & Events
||Kim Almand, M.S., CCC-SLP
||What’s Happening Around Town
||“How has your cancer(s) changed your life?”
||Cancer’s Dark Treasure
|The Speechless Poet
||Len A Hynds
||How My Life Has Changed
||Prose & Poetry
|Bits, Bytes & No Butts!
||iPhone 7, Amazon Echo; How's Your Memory?
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
Never Say “Never”!
At the time of my cancer diagnosis, I had been a singer for 45 years. My speaking and singing voice had been declining for a number of months. After, five or so visits with my primary, I took it upon myself to see an ENT, knowing something was wrong when I began having pain. If cancer had ever occurred to me at that point, I had pushed it way in the back of my mind. I remember vividly how I, looking at the monitor, said, “that’s cancer, isn’t it?”. The doc, who does this all day every day, was surprised to the point that all he could do was nod his head. That was the Tuesday after Labor Day, 2013 and my chemotherapy and radiation began a few weeks later. As with all of us, there were the changes in taste and smell and countless other things that were different. I remember when I suddenly could not bear the taste of sugar or chocolate. Both began to taste like gasoline or formaldehyde. Salt left my diet for months; I became so sensitive to it that I could not tolerate the taste of anything containing even the slightest amount. A potato chip would have me thinking I had just eaten battery acid. Eventually, those effects waned and then even returned to almost normal, as far as I can remember what normal was like, anyway.
But the one thing that was most difficult for me was not being able to sing. Several months after treatment, we realized my cancer had been more aggressive than the chemo and radiation and that a laryngectomy would be necessary. I really knew nothing about it and it had not even been discussed before. Either that, or my mind would not take the idea on board. I remember the way the doctor quietly shook his head left and right when I asked if there would ever be a way to sing again. I had found myself leaving the room or excusing myself from church when presented with a song I really loved, and that would continue for months after surgery. Sometimes, I stood outside in bad weather waiting to go back in when the music stopped, the music I had loved singing for so long. The same applied elsewhere to secular favorites. I eventually came to appreciate music I loved, as an observer only, until recently. Since just before our choir went on summer sabbatical, I have toyed with the idea of rejoining the ranks of the choir I sang with for thirty years. I am relearning how to sing with the part of my voice I can find. The choir has welcomed me back and my music slot was untouched for 2 ½ years, waiting for my return. I actually get a little better each week and though it is not the same, it is doable, it is good, and I am okay with it. Sure beats crying in the rain!
Modified swimming is next.
Never say never.
Our issue this month includes personal experiences and good information, as always.
Enjoy, Laugh, and Learn,
What’s Happening Around Town
Before we get too far into the bustle of the fall season, I wanted to take a moment to highlight some of the important events of the summer. Below is a recap of two meetings that drew many of our readers together in person for continuing education, collaboration, and meeting/reuniting with colleagues, friends and family. Thank you, readers, for being a part of our community. You each have something significant to contribute to WebWhispers. I hope that this group may continue to be a source of valuable information and encouragement for each of you affected in some way by larynx and throat cancer. Our online library’s resources are large and varied. Please take a moment to refresh your memory for some of the helpful information contained within. For speech-language pathologists, I especially welcome your input in the WW library under the General Information sections: Meetings and SLP Information: http://webwhispers.org/library/general-information.asp
As always, I look forward to hearing from you!
Successful Conference Kicks Off the Start of
the Association of Head and Neck Cancer Rehabilitation
Philip C. Doyle, Jodi Knott, & Jeff Searl
On June 16-18, 2016, the 1st Annual Clinical Laryngectomy Conference was held at MD Anderson Cancer Center in Houston, Texas. This 2½ day conference was organized by the newly formed Association of Head and Neck Cancer Rehabilitation. The idea for this new organization and the planning of this inaugural conference was guided by the three authors who have more than 70 years of combined service to the community of individuals with head and neck cancer. This collaborative venture was created based on the clear and increasing need to provide regular, highly structured, and comprehensive instruction by recognized experts for clinicians and graduate students, as well as those who are treated for head and neck cancer and members of their family. This need is highlighted even further by information provided from the Centers for Disease Control and Prevention who estimate that the number of individuals diagnosed with head and neck cancer will now double every 10 years. The Association is dedicated to providing the highest level of instruction in state-of-the-art clinical practice with a particular emphasis on practicing Speech-Language Pathologists at all levels of experience, in addition to providing education to both undergraduate and graduate students.
During the 1st Annual Clinical Laryngectomy Conference, instruction included presentations by experts on the diagnosis, treatment of laryngeal cancer, as well as communication rehabilitation including esophageal and electrolaryngeal speech, and tracheoesophageal puncture voice restoration. SLPs and students had the opportunity to work closely with highly skilled clinicians who instructed those with a laryngectomy in all three methods of voice rehabilitation, as well as pulmonary rehabilitation using heat and moisture exchange devices. Those who attended also had the privilege to interact with 10 commercial vendors who provided an array of supplies and devices that improve the lives of those who undergo total laryngectomy. Clinical services were provided by the faculty and staff of MD Anderson Cancer Center and other master clinicians from across the United States and Canada. Further, students from more than six university programs also attended the conference. More than 140 individuals attended this inaugural meeting and the feedback was exceptional. In just one year, this annual conference has emerged as the premier event related to education and training in the area or postlaryngectomy rehabilitation.
Based on the success of this first meeting, the 2nd Annual Clinical Laryngectomy Conference will return to Houston for another 2 ½ day conference on June 22-24, 2017. Registration for the meeting opens on December 1, 2016. We look forward to hosting professionals, students, laryngectomees and members of their family next year in Houston.
For further information on the 2nd Annual Conference, our program and speakers, please contact us via email: AHNCR2016@gmail.com.
Joint IAL/TLA 2016 Annual Meeting and Voice Institute in Dallas, Texas
What happens when you mix a smidgen of Texas with some international flair? Voila! It’s The International Association of Laryngectomees and the Texas Laryngectomee Association anniversary edition of the IAL Voice Institute/Annual Meeting and the New Voices Across Texas Conference held in Dallas in June 2016. What an exciting celebration as the two longstanding organizations merged their efforts and talents to bring laryngectomees, significant others, graduate students and speech-language pathologists together for a unique experience.
The attendees came from near and far with plenty of spirit, eagerness, inquisitiveness, and down right charming personalities. The latest insights in laryngectomee rehabilitation were explored by adding a touch of engaging speakers including Eric Blom, PhD., Caryn Melvin, M.S., CCC-SLP, and Byron Kubik, M.S., CCC-SLP. The event was off to the races with this winning trifecta of guest speakers.
Laryngectomees and significant others enjoyed topics such as Ask the Doctor, Advocacy, and Ellen Frohardt’s testimonial, “Walk a Mile in These Shoes.” Healthcare professionals attended sessions on pre-operative counseling, alaryngeal methods of communication and vendor demonstrations. There were ample opportunities for the two groups to share common areas of interest and fun activities.
The laryngectomees were in topnotch form demonstrating their acquired communication skills, swimming abilities, diverse talents and relating personal success stories. Not to be out-done, the healthcare professionals rolled up their sleeves for hands on experience with Heat-Moisture Exchangers (HME’s), tracheoesophageal voice prostheses (TEP), electro larynxes and esophageal speech training. Numerous individuals volunteered their time behind the scenes. All are to be applauded for delivering an experience worth remembering.
A formidable group sampled a taste of the “Old West” at the Stockyards in Fort Worth. They were treated to a cattle drive with genuine Texas longhorns and cowboys. That is what we call a true Texas welcome! Other social events included a welcoming Meet and Greet opportunity, the annual WebWhispers Dinner, the IAL Banquet Dinner, award presentations and a live auction. A country music band had many a Texan and would-be Texan clapping their hands, tapping their feet and venturing out to the dance floor to do the Texas Two Step and the Cotton Eyed Joe.
Knowledge was gained, memories were made, stories were told, and for a brief moment in time a group of special people celebrated something remarkable. We honored those who initially developed these organizations and the countless individuals who have attended these conferences through the years.
Just in case you missed this gala affair, you can obtain the latest laryngectomee rehabilitation information, meet new friends and renew cherished friendships at the upcoming IAL Voice Institute/ Annual Meeting in Newport News, Virginia on June 14-17, 2017 or the TLA Conference on February 17-18, 2017 in Corpus Christi, Texas. Check back with the soon-to-be updated IAL website: www.theial.com for all the latest IAL news and meetings.
I was fascinated by the responses to this month’s Speaking Out question about how cancer has changed our lives. We are a pretty resilient bunch! Both Len Hynds and Noirin Sheahan also write about our “new life” so I thought I’d share my perspective as well. And as it turns out, after I got over the initial shock, I’ve been pretty consistent. Here is a FB post from two years ago -
Today I took a little walk in the very ordinary woods behind my house with my 2 1/2 year old grand-daughter. We saw nothing extraordinary. We picked up sticks and talked about the difference between white pine and fir trees. We noticed that the snow went crunch, crunch, crunch and that crunchy snow is not good for making snow angels. We had a snack of apples and peanut butter while we watched Super Why and then took a nap together. None of this would have happened if I was off on my extraordinary career. For me, and only for me.... I choose this.
And this from my column back in September 2009, when I was a new Nana to the first granddaughter.
~Earth Grandmother ~
Back in the day, I was an “Earth Mother”. Natural childbirth, breastfeeding, home-made organic baby food, grown in our garden or from the health food store, co-sleeping and cloth diapers; I even looked the part with my long hair and granny glasses as I carried my beautiful baby boy around in a denim sling at the local Bluegrass Festival.
Times change and with them circumstances; by the time I had to go to work after my divorce, I had switched to disposable diapers and McDonald’s Happy Meals. I cut my hair, got contacts, went to college and even used pesticides, albeit very reluctantly, in my garden. I stopped drinking Celestial Seasonings Sleepy Time and Red Zinger and switched to Earl Grey and Merlot. I grew up.
My son also grew up and married a wonderful woman. They are a rather astonishing amalgam of Red-Neck-Techo-Geek-Throwback. They love motorcycles, RV’s, computers and their gadgets, garden with enthusiasm and adore animals. They even drink herbal tea as well as designer coffees and both seem to be sadly deficient in the “neat gene”. (I, on the other hand, have recently unearthed mine.)
They would be kind of annoying if I didn’t love them so much and if they had not produced the most beautiful little baby girl you could imagine. And I get to take care of her every day. The Earth Mother is reborn… rekindled… rejuvenated. I kid you not - this is the best thing that could have happened to me and it wouldn’t have happened if I hadn’t gotten cancer.
That is not an easy statement for me to make. I have heard other cancer survivors make that claim over the years and it always rubbed me the wrong way. They seemed to be saying cancer was a good thing, which, of course, it is not. I do understand how overcoming the challenges we face during treatment and recovery can make us stronger, better persons and that becomes a positive force in our lives as survivors. But some survivors seemed to be saying something different, something deeper, something more fundamental - that the cancer itself was a positive force. I think I finally understand what they mean.
When I was diagnosed in 2000, I was 47 and had just started graduate school. I joked that I had finally figured out what I wanted to be when I grew up. Those plans were derailed because of numerous setbacks during my treatments. It was a big disappointment. By the time I was well enough to go back to school and pursue my PhD, the prospect was overwhelming and I had lost my drive. During my recovery, instead of studying theories of aging, economics and research methodologies, I had actually worked with the elderly in retirement communities and in their homes. I saw a lot of well-meaning caregivers infantilize the frail and condescend to the old. I saw the damage done when you segregate people by age and the anguish families feel at their sometimes limited choices as a loved one ages and needs additional care. I began to rethink the value of a PhD in Gerontology when it came to addressing the real problems facing the elderly and their families and caregivers every day.
Meanwhile, my son married, I moved back to Maine, my parents had some health issues of their own, I puttered around in my garden, built an addition on my son and daughter-in-law’s home for my apartment and drifted aimlessly, albeit quite cheerfully, along.
Then, came Kayleigh. I told the kids I would watch her for the summer so they didn’t have to deal with the hassle and expense of daycare for a few months, anyway. After that, I had some traveling to do. It has been wonderful. She IS a lot of work, but even more fun and joy. Last weekend my son had the flu and he is, like many men, a big baby when he is sick! Poor Cori (my DIL) was struggling with a fussy baby and a cranky husband when she asked if I would mind watching Miss Kay while she ran to the store for cough medicine, ice cream and diapers.
It had been a muggy day and Kayleigh and I were both hot and sticky by the time it started to rain that evening. We went out on the deck and reveled in that refreshing soft, warm summer shower. She was delighted and fascinated by the sounds of rain pattering down on the metal table and the feel of it on her skin. We turned our faces up to catch the drops and she crowed with delight the way only little babies do. After I brought her in and wrapped in her favorite blankie, she fell asleep in my arms. We sat in the rocking chair and as I looked down at those wet curls and felt that warm little body nestled in my arms, I knew magic.
Dr. McGary, doing innovative research on cognition in healthy elders, would not have known that magic. She would not have had the time to be the earth grandmother playing in the rain with Kayleigh her first summer. I like to think “Dr. McGary” might have made a contribution to the issues we face as our population ages and I like to think she would have had a stimulating and exciting career as a gerontologist. But she would not have known this and whatever recognition and awards she might have garnered, she would not have found it more rewarding.
My generation is famous for thinking we “can have it all”. It is a romantic and destructive myth. Life simply does work that way. It is full of choices, some we make, some which are made for us, but with each choice comes consequences. Treatments, voices, partners, careers, colleges, houses, mates – life choices we all must make – each resulting in at least one “Road Not Taken”. Cancer forced me to make some hard choices. But the path I chose as a result has been unexpectedly satisfying.
“Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference."
“How has your cancer(s) changed your life?”
Mike Rosenkranz - Plantation, FL
My first cancer (prostate) turned me into a gentleman of leisure. I had planned to retire at 70, but retired on my 68th birthday. My second cancer (larynx) was a true learning experience. This was readily seen by others and I found myself putting folks at ease because they were unsure how to react to my loss of voice. I joined WW in ’99, became a volunteer in 2000 and that was the start of my second career, full-time volunteer. My third cancer (kidney) is monitored quarterly. No change since diagnosis last fall. My cancers have made me appreciate the extended life I have been given. I try to live that life to the fullest extent possible, and encourage others to do the same. Life is too precious to waste time on the negatives. Enjoy the extended lives you were given by your lary surgery. I am always making plans for my next adventure. This year it was an Alaska cruise. Next year, Scotland.
Carl Strand - Mystic Connecticut
February 10, 1993
Of course I had the change in voice, taste, sense of smell that all laryngectomees face, some more than others. The most important change for me, though, was my relationship with others. I am a Coast Guard officer by training and an engineer by profession. I have always been an introvert and very confident of my ability to figure out things for myself. My laryngectomy brought (or maybe forced) me out of my comfort zone. In the first place, the major outpouring of support I received made me realize that my introversion was not a barrier to the people I knew and worked with. In the second place it made me (I think) a kinder, gentler person who is more tolerant of others and their failings. Finally, it made me realize I needed to reach out to others both inside the laryngectomee community and outside in the community at large, which really put me outside my comfort zone.
It has been a rewarding, if not always comfortable, 23 years.
Kevin Berry - Ontario, Canada
Class of 2001
It was a beautiful sunny fall morning the day after the twin towers came down. It was the morning I kissed my then 15 month old daughter and walked the 20 minutes from my home to the hospital to get my larynx removed.
By 3:00 pm that afternoon, I was wondering if was worth going on. I was horribly disfigured, stripped of my voice, and emotionally decimated.
15 years later I see things a little differently. I was given 15 years to watch my daughter grow. I was given 15 to fall in love again and spend 12 fabulous years with my new partner. I was given 15 years to learn a little humility and I was forced to listen as well as speak.
15 years later I am not as pretty, well spoken, or as wealthy as I was, but 15 years later I feel I have had a chance to become a better man. What else could a man wish for.
For those just starting the journey, try not to despair over what you have lost, try to rejoice in the new opportunities you have been given. It may often not seem like much of a gift, but every day on this side of the daisies, is gift far too valuable to be squandered.
Len Hynds – Newtown, UK
Your whole life starts to change from the moment you are told that you have a cancer, not only in life style, but also in the emotional aspect.
In lifestyle, I ran my own business selling car parts, for the car repair industry, employing a few people, but with about 200 customers throughout the two counties of Sussex and Kent. I was 74 at the time, with no intention of retiring, but the news was rather shattering as I had so many people who were dependent upon me, especially my dear wife, who could not run the business, so I decided to give it to the two most senior people, as a gift.
In settling the paperwork, for a tidy handover with no debts for them, I tried to send in my tax returns six months in advance, only to be sent a cheque a few days later, by the Head of the local tax department saying that I had money owing to me. This could not be possible, as I was always most careful. To leap ahead to close this particular incident, some four years later whilst I was at University, we were all listening to a tutor who was complaining bitterly about a Tax Inspector, and I told the story of my experience. A lady present in the refectory, interrupted, saying, “I know of this. I am a friend of the wife of your inspector, who was the head of department. I was there when he told us of your letter, and showed it to us.”
She went on, “He never told either of us, that on that very day he had been told he had a lung cancer himself. He told his wife after I had left. He died a few months afterwards.” I am convinced that the cheque he sent me, was written in a moments compassion, and as he was in what he thought was a similar position.
The consultant Surgeon to do my operation, was most interested to perform on somebody who had metallic heart valves, a pacemaker and various other bits and pieces, but he performed perfectly. That was nearly thirteen years ago, and you slowly learn to live this new life, and thank your lucky stars that you are a survivor.
John Haedtler - New Mexico, USA
This may sound crazy, but getting cancer was one of the best things to happen to me! Please don’t shoot me! Just listen! I learned more about medicine and doctors than any one of us want to know! I learned more about myself then most of us do! I found strengths that I never knew that I had. So bottom line getting Cancer has helped me!
Before getting cancer I never would have thought of speaking to groups of people. I’m just a big chicken! But I have spoken to SLP students in their class on voice restoration! And I have let Students change my prosthesis. The classes are so great. You can watch the students as they realize what the books and videos were talking about. To be able for them to see and touch a real Laryngectomy is Amazing! I’m not sure who gets more out of it???
Getting Cancer has taught me to be and stay Positive! I really feel that the Positive attitude does more for us then any Radiation and Chemo! I also was taught by the best! Every single employee at the University of New Mexico Hospital! They all saved my life! I’m sure some people that know me are mad at UNMH, but that is their problem not mine!
I wish all of us an enjoyable ride through all of this. Remember …This is just one more stage of life! It can only be positive if we make it positive!
Colin Lovering - Northam, Bidefor - UK
Having a laryngectomy has given me a new lease of life. I am 80 years of age and am fitter now than for the 3-4 years previous to the Op. O.K. I have lost my voice, but I have a TEP, and an electric SolaTone
I have lost the sense of smell, but sometimes that can be a good thing. For some reason, I know not why, I no longer like 3 or 4 foods that I used to enjoy, but I still enjoy plenty of other foods, just have to remember to eat smaller bite sizes and chew slower, not to wolf it down like I used to. I still forget sometimes not to bend over after eating. My wonderful specialist nurse said at the beginning "Your stoma will heal up, persevere.” After 6-7 months I did not believe her. Then just under the year it suddenly healed up. now it is firm and does not shrink up.
I had a wonderful surgeon, a caring consultant, a super specialist nurse to follow up with me.
Finally, a lovely understanding wife who pops in my button or tube for me because of my arthritic hands.
Apart from not being able to whistle as I used to all day, ------ I am blessed
Branton Holmberg – Wauna, WA
I’ve been a lary since August 2010. They first removed ½ of my thyroid in 2000 and with a radioactive iodine treatment and it looked like I was cancer free until early 2010 when there was a sudden spike in my thyroglobulin blood count and the cancer became very aggressive again. The decision was made to remove the rest of my thyroid gland, believing that would be all that was necessary. When they operated in August they found the cancer had spread to my larynx and trachea and they removed the larynx and 4” of my trachea. The result was that I have a deeply recessed stoma and the only communication device I can use is an AL.
I was retired when I had the 2010 operation so I did not have to face the issues of earning my living with my voice which I found fortunate because I was a university professor, business owner and business consultant during my career. What I found deeply troubling though was once again having to deal with issues of clearly communicating with my voice. I was born with a cleft lip and palate and my childhood was plagued with many of my peers mocking my nasal speech. When I entered graduate school in psychology I was fitted with an obturator which cleared up all aspects of my nasal speech and made all the difference in the world to me. I went on to have a career I would have never dreamed possible before I got that fantastic speech aid. I’ve written of those experiences in a memoir.
Then in 2010 I found I was thrown once again into the world of trying to clearly communicate verbally. All the early years of my life returned with a vengeance and I retreated from interacting with others and kept my social interactions to a minimum. My biggest concern was communicating with my grandchildren and great grandchildren whom I dearly love. They were all in their early childhood years. My wife and children had no problem understanding me but my grandchildren and great grandchildren did. Although they loved the Mr. Robot sound of my voice, prolonged communication with them was difficult.
From this frustration I found a whole new dimension to my life. I became an author and began writing adventure, and science fiction/ fantasy, stories using myself as one of the main characters and family members, grandchildren and great grandchildren as characters as well. I’ve written a series of 57 adventure books in what I call my Saturday matinee book format. The books run between 65 and 110 pages or so on a 6” X 9” printed page, and can easily be read in an hour or two which is about the amount of time I sat through a Saturday matinee movie when I was a kid. I loved those matinees and they’ve been a big influence on the stories I’ve written
Many of the books are written to a young adult audience which is the audience the Harry Potter books were written to. A lot of the stories have elements of the Indiana Jones type of adventures to them.
I continue to write and I must tell you I’m having more fun than I ever thought possible. My grandchildren, and great grandchildren, are enjoying an aspect of their grandfather, and great grandfather, I’m very proud of.
Bless each and every one you my fellow larys. I hope each of you find your way to have fun too.
Trevor Hutson -UK
It all came as a sudden shock, from first going to the docs to having to have an emergency trachy, then a huge 6 week wait in hospital while they decided the best course of action for me, eventually followed by a laryngectomy and another 3 weeks recovery but thank God I did not have to have chemo or radio therapy.
They fitted a TEP same time as the operation.
How has it changed my life is a huge question. My background was catering and I was also a lecturer and a performer so a very hands on people person.
Food was an important part of my life and not just from eating. Now I have a very limited sense of smell, I really miss the smell of the morning, of rain, mostly the smell of my wife’s hair.
Taste is slightly better. I can sometimes taste all major groups but only if strongly flavoured like loaded with garlic etc. but other times it’s just going through the motions to fuel the body. Very difficult to talk and eat so mealtimes can be difficult especially if out with friends as joining a conversation is difficult as by the time I have swallowed and forced whatever down the conversation has moved on to totally other things which can be frustrating.
Lots of other problems which I know you all face so enough said by me.
Overall I am lucky to still be here to experience it all and for that, I thank God every day for giving me another one. I will stay strong and positive and I realise that I just do things differently now.
Stay positive and yes, sometimes it is hard but the good bits outweigh the bad.
Good luck to you all and good health to enjoy it.
Next month’s question is:
“Do the season changes affect you?"
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out
Cancer’s Dark Treasure
How has cancer changed me? Good question. At one level not too much. Although I sound very different and can’t contribute so easily to conversation or function so well in complex situations, I have the same personality, a fairly similar life-style as before, the same friends, the same interests, the same sore-spots. So at the surface, a lot of me is very much the same.
But deep down it’s changed me profoundly. Losing my natural voice gave me a bad shock. But that shock brought a hidden treasure, and I’m definitely the better for it.
It was all very peculiar and unexpected. During the first night after the operation, my skin was literally crawling with fear. I practice mindfulness meditation, and followed the standard process of noting the moment-to-moment experience. As I did that, I sensed a dark space open up inside – just where my voice-box used to be. I could feel sensations round the edge of the space, but nothing at all within. It was like the edge of my known universe. And yet that dark space seemed so alluring, so gentle and soothing by comparison to the frenzy of fear boiling in my body and mind. Exploring the whole experience mindfully I found that the streams of fear that were making my skin crawl, could, if I breathed in a certain way, be directed into that dark space where they would fade away. Although another stream would shoot up a moment later, it too could be escorted into the darkness to fade away. It was like finding the deepest treasure – the hidden place within where all fear and dread can come to an end.
That miraculous discovery was the most exhilarating and comforting experience of my life. It showed me that earthly troubles cannot hinder us at the deepest level of our humanity. It gave me hope that losing my voice could also prove the start of a beautiful new phase of life.
Nowadays the darkness regularly shows up when I need to make peace with something. Does someone ever press a button, and you go into a tizzy of rage? That’s when the darkness can come to make things right again. Here is a recent example. For reasons too long to explain, I now wear a wig and my head is almost bald. The wig is very realistic and I don’t think anyone has guessed. One night my elderly aunt (who didn’t know I wear a wig) was staying. She went to bed early, but later, as I was climbing into bed, I heard her knock on my door. Both my voice (I use an EL) and my wig were at the other side of the room. So I couldn’t say ‘Wait a moment”. As I made a dash for the wig I saw the door opening and her head come peering around. I felt both distressed and furious – as if I’d been caught naked by a gawking intruder.
It was one of the few times in my life I’ve really wanted to shout “Get out!” (a lot worse than that to be honest!), but, because of laryngectomy, I couldn’t say a word. Instinctively my right hand shot out, palm upright, like I was a policeman directing traffic and saying “Halt!”, while the rest of my body turned away in a kind of cringing stance, with my left hand covering my wincing face as if I was trying to protect myself from blows she was aiming at me.
She got the message and quickly withdrew. I sat down for a while to try to recover some composure. It felt as though a volcano had erupted within! Indignation, blame, anger were all hurtling out in curses and swear words that Donna would have to censor, so I won’t go there! There was shame too, at having been seen as a baldy. But at another level, I knew my reaction was OTT and that she hadn’t meant any harm. After a while I could also giggle a bit at the daftness of it all – I mean, why get so het up about three inches of fibre we call hair? But the fury would return the moment after the giggle stopped, so I knew I needed to go deeper.
These are the times when trusting to that dark space within can really help. What I have to do is keep encouraging myself to calm and take it easy, which is easier to do nowadays, knowing help is at hand. Once emotional energy isn’t being whittled away in repetitive thoughts and curses, it becomes physically concentrated in my body to the point where I feel I’m about to explode. But the contrasting darkness also appears – the empty space. My fury and indignation can come right up to its edge, try to batter it black and blue. My shame can try to hide away from it. All they get back is a gentle non-reactivity. Gradually the edge of the emotion softens and melds with the quiet darkness, while the volcano shrinks towards its core.
That night too, the darkness crept towards the source of the volcano, gently absorbing all the curses it met along the way. When it got there, it was as if a veil fell from my eyes. I suddenly realised that my fury had nothing to do with my aunt - It was because I couldn’t say those simple words “wait a moment”.
It was the first time since laryngectomy that I’d really needed to use my voice to protect myself. What I was raging about was the helplessness of being dumb.
Although I’ll be coming to terms with that for a long time yet, I felt relieved to know that my rage was not at my aunt. It made it much easier to forgive her for coming into my room uninvited, and think more kindly of her, and of the fright she must have got on seeing my bald head and weird half-policeman, half-agonised stance. I realised she might be wondering did my baldness mean the cancer has returned (it hasn’t). So I decided to tell her all (it’s a long story so I’ll save it for a different newsletter). And in the course of our following conversation, a deeper trust was built between us.
Without the help of that darkness, most likely I would have swallowed my anger in coldness, and then put up a bright and breezy front when I met her, as if nothing had happened. And if she had asked about the wig, perhaps I would have retorted “that’s my business”. Or if I had felt pressurised into explaining, there would have been a new bitterness because she had prised a secret from me. Either way our relationship would have suffered. And the memory of the incident would come back again and again, pressing its rage and misery buttons. Thanks to that wonderful darkness, which first appeared on the night after laryngectomy, our relationship has instead deepened, and the memory doesn’t trouble me.
The deeper source of trouble – the fear and rage at being unable to use my voice when I really need it – will take a lot longer to heal. But I don’t doubt that the darkness will eventually swallow up all the curses and tears I hurl into it on that account too. And while I still have fantasies of a miracle-cure where I go back my old fluent voice, I know, deep-down, that I wouldn’t trade the most beautiful human voice for the dark treasure that laryngectomy exposed.
Recently I asked Len to write something a bit different for his column. He is not one to toot his own horn, preferring to let his writing “speak” for him but I thought our readers, especially the newer ones might like to know a bit more about his remarkable life. Since this month’s Speaking Out question had to do with memorable laryngectomee moments I thought this was an appropriate time to share his story with you all. Working with Len and becoming friends with him is one of the best things about being involved with Whispers on the Web. Read his story and you, too, will understand just why both Pat and I think he is such a treasure.
~ This article first appeared here in May, 2014 but it seemed so appropriate for this month given the Speaking Out question I wanted to re-print it. ~ Donna
HOW MY LIFE HAS CHANGED
As a laryngectomee, I never truly realised how my life had changed, until that day in University, just before graduation. I was in my third year and my tutor, famous author and poet, John Whitworth, MA. B.Phil.(Oxford), after reading aloud some of my work to the class, said, “ You know, Len never really spoke until he lost his voice.”
I was 78 then and had been studying creative writing, writing for stage and screen and poetry, and was due to graduate with all those young people in Canterbury Cathedral in just a few weeks’ time. I had been a laryngectomee for four years then, and for the first six months unable to have a [TEP] valve fitted, so my only communication was by writing. I found that so terribly frustrating. I went to Adult Education Classes to speed up my writing, but was told that I had a gift for storytelling and poetry and should go on to University.
That was initially laughable; then quite daunting a prospect, as I had quite illegally left school at the age of 12, after a very haphazard education. During the early part of the war in 1939 we had been bombed out of our London homes on three occasions; the very first one I was buried alive for four hours, with my head trapped between masonry, until dug out. What schooling I had was learnt in underground shelters or church crypts, the coffins having been moved out to make room for us. So at the age of twelve I convinced mum that I should take up work, by putting my age up to 15, as the authorities seemed to have lost me, probably thinking me killed in the bombing. I had to promise her that I would educate myself at the local library some three miles away, every Saturday afternoon. She eventually agreed and I obtained a job with the Express Dairy, driving one of their horse floats, on daily milk deliveries. I was a casual relief driver, so they didn’t delve too deeply into my background.
I then enrolled in the Heavy Anti-Aircraft Regiment in their cadet company, telling them I was fifteen, and after training went out as a signals runner with one of those large guns onto the streets of London as they were firing at the swarms of enemy bombers overhead. On being promoted to Lance Bombardier I guided parties of servicemen from one main line train terminus in London to another whilst a raid was in progress and all surface transport had stopped. I transferred to two Light Infantry Regiments (Cadet Section) and as a Sergeant in the Buffs’ Royal East Kents I was attached to the three Bofors guns on the cliffs at Ramsgate. Plenty of action there, with me firing the Twin Vickers machine guns at marauding enemy planes.
I was called into the army proper at seventeen and a half and eventually posted to the Royal Corps of Military Police, where after training was posted to Egypt. I was then a London policeman until transferred to the Flying Squad at Scotland Yard (The Sweeney).
So my whole background was of straightforward no- nonsense writing; to even consider poetry would have been laughable. Yet since graduation my life has changed enormously! Not only have I been writing for Web Whispers since 2009, gaining so many friends throughout the world, but I write for laryngectomees in Australia, India and the UK. I have talked at training colleges for police and firemen, as the possible first responders to the scene of an accident, to ensure that if a neck breathing person is unconscious, oxygen is fed into the right place. I help out at Macmillan Cancer Nurse’s Seminars by talking to the delegates, mostly General Purpose Doctors, District Nurses and Dentists, the people out there in the field who normally know very little about Head and Neck Cancers.
There are seven editors in the UK who use my work on a fairly frequent basis. I tell them all to use my web site if they are short of copy, with no reference to me or cash re-imbursement, as I am only interested in telling as many people as possible that we laryngectomees do exist and we still have a lot to offer.
Never think that because you have lost your voice that your life is finished. Mother Nature has a way of compensating for that loss, sometimes in the most remarkable way. I obtained, much to my surprise, the main award for Outstanding Achievement in Education, since losing my voice, and I was really a duffer at school.
I rent a bungalow from a rather large organisation called the Southern Housing Group and when invited to a London Hotel I thought it was because I had volunteered to supervise a group of teenage offenders in building and creating gardens in old peoples’ homes and teaching those teenagers how to make mosaic pavements. In the beginning they all thought it a bit much to be supervised by an ancient laryngectomee but I won them over and we all became friends. It was at that London function when I was called up onto the stage and awarded the Ashley Bramhall prize, which is only granted every ten years. So never give up. There is nothing that you cannot achieve.
New iPhone 7, Amazon Echo and How's Your Memory?
WHOA... Amazon Echo Dot Has ESP?
Amazon isn’t satisfied with a home run; it has to have a grand slam. The e-commerce giant seems to have hit one with three blockbuster releases of its voice-powered personal assistant. Read on to learn about the newest member of the Echo family. And does it have ESP? Hmmm...if you own an Echo you probably love it or hate it...depending on your expectations versus your usage. I have owned one for about 2 years now and I am somewhere in the middle. I use it daily but if it died I could live without it, since I can use my PC for many of the same things.
Amazon has recently announced the release of the Echo Dot 2 on 20 October and for fifty less than the original dot.
What's New With Echo Dot 2?
First came the tall, speaker-rich original Echo ($179); then the hockey puck-sized Echo Dot, priced at just $99; and now a second-generation Dot that does everything the original Echo did, and more, for only $50. The Echo Dot 2 is slightly smaller than the first Dot. Its speakers are equivalent to a smartphone’s - not high-fidelity, but adequate for close-range communication. But you can also connect the Dot 2 to your own speaker system via a 3.5 mm plug or Bluetooth for surround-sound weather reports.
If you’re looking for more info on purchasing the Echo, click here.
Do You Need More Memory?
If someone tells me their PC has slowed down and seems sluggish, I immediately ask about the amount of RAM they have installed. Normally they don't have a clue (can't say that I blame them). But so they'll know I try to explain to them just what RAM is and why it is important. If your desktop PC seems sluggish, the problem may be too little RAM (Random Access Memory). But “add more RAM” is not the solution to every case of poor performance, and buying more RAM than you need or can use is just a waste of money. Today's more sophisticated operating systems have mostly eliminated the need for huge amounts of memory to achieve decent performance for the average user. However, many of the older PC are still around and are beginning to show their age. This is where an additional bit of RAM can make a world of difference.
Read on to learn the ins and outs of RAM and how much RAM is the “sweet spot” is for most computers.
How Much RAM is Right? RAM is the memory in which a computer temporarily stores things it needs to access quickly for the task at hand. Don't confuse RAM memory with hard drive storage, which is where your computer stores programs, documents, photos and other files. When you turn off the computer, your RAM memory sits empty, but files stored on the hard drive remain. Your web browser and certain parts of the operating system needed to show you this page should be in RAM right now. When you open a document in your word processor, both the program and the contents of the document are loaded from hard drive storage into RAM.
When you don't have enough RAM memory, that's when things tend to slow down. This may happen if you have several programs open at once, or if one of those programs needs to open a very large file. Rather than displaying an "out of memory" error and giving up, your operating system creates "virtual memory" by using a special file on the hard drive. It's the job of the operating system to move data between physical RAM memory and virtual memory in a way that maximizes efficiency. But all of that data movement involves reading from and writing to a hard disk drive, which slows everything down.
If the “disk activity” light on your PC is constantly flickering, you may need more RAM. I say “may” because a RAM shortage is not the only cause of excessive disk activity. The operating system does lots of behind the scenes tasks that involve accessing the hard drive. Damaged physical sectors on a disk, a corrupted file, or a mixed-up File Allocation Table are some other potential causes. You should run CHKDSK to find and fix such errors before buying more RAM. See my article, Windows 7 Hard Drive Errors for instructions.
For the Apple Fans
Apple has finally released the new iPhone 7 and as usual the fan base has been very happy with the new features and availability. As of our press deadline there are not many reviews in that have reflected everyday use so we'll cover that next month. If you have purchased an iphone 7 and would like to share your thoughts with us please drop me a note: FEEDBACK@webwhispers.com for inclusion in next month’s newsletter. I am sure that Apple has released another excellent version of their highly popular phone and just in time to take advantage of Samsung's battery woes.
Do you Yahoo?
If you are a Yahoo user for email or news or any of the Yahoo services that require you to sign into your account then you need to know that your password and info may have been compromised. Yahoo finally release the news that they had been the target of a humongous hack which resulted in over 500 million passwords being captured. Change your passwords now if you have not done so in the last 2-3 weeks. The folks at CNET have been following this since it was announced by Yahoo and recommend you change your password now even if you weren't a regular Yahoo user...better safe than sorry. Follow the link below for more specifics.
Do you stream your media?
Do you know what streaming is? No matter - I'll try to beak it down for you. It can be fun and will certainly give you more entertainment options. Streaming is the ability to "cast" a video or your PC screen to your TV. There are many services now that offer you videos and entertainment media to add to your channel line-up and they want to be sure to get your business. Amazon offers their prime videos to Prime members as part of the Prime membership benefits. This is a service similar to Netflix or Hulu. The services are all the same basically, however costs and some features do vary.
So the next thing is the player you use. If you have a "Smart TV" you already have all you need. If you would like to get into streaming a service then this article from Bob Rankin goes into more detail comparing the various players and the costs for each. Read on to get the advice Bob offers.
By the time you are reading this we will have one less month of election news to be bombarded with. Of course the amount of noise you get from the candidates depends on where you live and just how many electoral votes your state carries...kind of like paying full freight then being sent to the baggage car. But in this case I'll cheerfully sit it out and let the noise go by since I, like many of you, made up my mind who I would be voting for many months ago. If you think about that, then think of all the good things they could have spent all those advertising dollars on.
The WebWhispers Facebook Group is our meeting area along with the WebWhispers Forum. Many of our members are on Facebook, so we knew it was time to have a Facebook home. We invite all our members to join us in our Facebook Group and the Forum. If you are not a Facebook user then you might enjoy a visit to our Forum, hosted on Delphi, it is a members only group which limits the access to only those of our “hole in the neck” group. You can read over the questions and insights of other Larys as well as ask questions and get answers from our knowledgeable members.
And for our newest members remember to visit our library for answers to many of your questions. The WebWhispers library http://www.webwhispers.org/library/general-information.asp is one of the most complete collections of information aimed specifically at the Laryngectomy Community...in fact it may be the only one. Taking the time to browse the library and become familiar with the contents will make it even more useful for when you do need to find out a piece of information.
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Editor - Jack Henslee
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