|Name Of Column
||How to read and learn from WW!
||News & Events
||James H Hall Jr, M.A.,CCC.A F. AAA
||Ototoxicity and Head-Neck Cancer
||A Very Lary Christmas
||When I lost my voice
||Losing my Voice: A Humbling Experience
|Travel With Larys
||Visiting My Family History
|The Speechless Poet
||Len A Hynds
||A Christmas Story
||Prose & Poetry
|Bits, Bytes & No Butts!
||Revisiting Dutch's column on Computers
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
How to read and learn from WW!
A great section for learning on our site is our library, where we have hints and other information categorized by these subjects. Look for Library on Home Page and choose a category.
How We Live
Hunderds of pages of hints and ideas, especially for the new lary or new problems, that are open to the public and may help answer many of your questions about becoming a laryngectomee or caring for a patient.
Whispers on the Web, our newsletter that comes out on the first of every month has archives going back many years. It has grown from a few pages with maybe one story and some hints to having regular columnists and fascinating information from larys who experiment and learn, then share. We also have a monthly column from a professional that is so good other professionals want to come to read it. And the fun column of Speaking Out for which we put a question in our email list and ask for patients and caregivers to tell your experience briefly on that subject for publication here.
If you join WebWhispers, you are subscribed to our moderated WebW email distribution list and you will begin to receive incoming email in the form of a Digest sent out every 12 hours with whatever has been written and cleared during that time.. Emails, on laryngectomee-related subjects, are sent, simultaneously, to all list members. As a member, we ask that you please keep those emails on topic, courteous and to the point. Do not return the entire message to which you are replying and you may send personal messages directly to the individual. We do not permit attachments, imbedded graphics, or using the list for commercial purposes. List address is sent to you in the welcome message after we register you to send and receive the list emails.
Other communication methods that include messages from our members are also available only to members. You may join either one or both of these as a member of WW. These two are more like social media for laryngectomees and others interested.
Delphi WW Forum Message Boards: When you join WW, the information needed will be in your Welcome Letter.
WW FaceBook Group: Send a friend request to the FB Page of Shmuel Mitchell, John Isler, or william.cross.752 with a brief message of why you want to join the WW Facebook Group. We will confirm the friendship and add you to the group.
These suggestions are a good start on educating yourself, sharing concerns, and getting answers to your questions.
Welcome to WebWhispers.
Ototoxicity and Head-Neck Cancer Treatments
Have you had chemotherapy as part of your treatment course? Have you noticed any change in your hearing? Certain chemotherapies frequently used with head and neck cancers, such as cisplatin and carboplatin, can affect your hearing. Radiation therapy to the head and neck can also damage hearing, particularly when it’s combined with chemotherapy.
One of the first signs of hearing loss from treatment may include ringing in one or both ears. (Ringing can also be caused by other drugs as well as exposure to loud sounds.) The effect of chemotherapy and/or radiation therapy on hearing is very subtle with the most common complaint being that you cannot understand what other people are saying. You might think that people are speaking very softly. This can happen in quiet environments, but is most likely to occur when you are in a noisy environment, such as a restaurant, a store, or even at home when there is a family gathering. This is because hearing is reduced in the higher frequencies, but still normal or very close to normal in the lower frequencies. (Think of a piano keyboard: the lower frequencies are below middle C, and the middle and higher frequencies are above middle C.) The words in our language are made up of low, middle and high frequency sounds that combine together to give us a perceived overall pitch. The vowel sounds, which carry the power in our language, are in the low frequencies. The consonants, which are the “identifiers” (i.e., they help us tell the words apart) are in the middle and higher frequencies.
Hearing loss from chemotherapy and/or radiation therapy typically affects the higher frequencies first, and then may have an effect on the middle frequencies. When you are unable to hear the higher and middle frequencies, it is like hearing the words, but with “holes” in them where the sounds should be. That is, you’re missing the “identifiers” that indicate what the word is. Remarkably, our auditory systems usually fill in these “holes” when there is not much sound other than the person talking. However, auditory systems lose the ability to fill in the “holes” when when you are in a noisy environment. You may be aware that someone is talking, but it sounds garbled and unclear. While there could be someone talking too softly, it is more likely that the person is talking at a normal level and that you cannot hear all the sounds you once were able to hear well. Another way that you may notice this difficulty is the need to turn the television louder than those around you in order to understand what is being said.
Are you having any of these hearing difficulties mentioned above? Did they start during or after treatment? If so, you may have hearing loss from the treatment you received. If you feel that you are having difficulty hearing those around you, or if those around you are telling you that you’re not hearing them well, you should have your hearing tested. Your primary cancer care provider or your primary care provider in your local community may refer you to an audiologist for a complete hearing evaluation. While it is possible that you may need hearing aids, not everyone does. The audiologist may be able to provide strategies to improve your ability to communicate with those around you. If testing suggests that you do need hearing aids, today’s instruments are much better than what was available just five years ago.
Your audiologist can provide the appropriate options for you. Remember, communication with those around us is essential for a good quality of life. Live your life to the fullest!!!
James H. Hall, Jr., M.A., CCC.A, F.AAA
Senior Clinical Audiologist
MD Anderson Cancer Center, Houston, TX
A Very Lary Christmas….
…. Or how a mangled EL word becomes a new family tale
In the interest of family traditions and “religious/cultural education”, the last couple years I have put out my Nana’s crèche which I adored playing with as a child. As an atheist now and since my son and daughter-in-law are non- religious I wanted to at least give my two grand-daughters some understanding of Christian beliefs and not just my unbeliever perspective. So, last year as we unwrap the figurines I try to explain. Once upon a time, a very long time ago, a little baby was born who grew up to be a very great teacher who helped people to be nicer to each other. He taught we should love one another and be kind and not be mean just because someone is different from us. So if someone is hungry you should share your food and if they are cold you should share your warm clothes. Some people celebrate Christmas as his birthday.
So far so good. I am explaining the pieces as we unwrap them and that Baby Jesus had to be born in a barn because the king made his mama & daddy go to a town where no one knew them and they had no place to stay. Okay - we set up the stable. All the while I keep telling the story. We find the sheep and some shepherds, more than three wise men, the star, an angel, a rather bedraggled donkey, Joseph and eventually Mary. We find the manger but no Baby Jesus. I am hunting through all the paper and Kayleigh (then 5 years old) says, “Did we lose Baby Cheezit?”
I mumble, “Apparently” as I ruffle through stuff until it dawns on me what she just asked. She is distressed and seems unperturbed that the great teacher might have been named Baby Cheezit…. until she unwraps a camel. Then she stops, and asks incredulously, “There are camels in this story, too?” That is just too much for even her. First being born in a barn, being named Cheezit and now camels. I tried to explain it was NOT Cheezit - it was Jesus and then about the camels and the shepherds and the angels and I could feel myself just losing steam. It’s actually a great story but I guess I bungled it.
I much prefer the Festival of Lights/Father Christmas/Grinch thing. Baby Cheezit –I couldn’t stop laughing. And when I relayed the mangled Christmas Story to friends and family folks felt the same way and in our little circle it “went viral” as they say. No one could refer to the baby in the manager as anything else. It wasn’t being disrespectful , really. And Kayleigh was almost reverent in her appreciation for the magical quality of the story and saw no irony in the baby’s name.
Even 6 months later when during one particularly trying moment with the girls I swore under my breath (without benefit of Servox) and Kay heard me from across the room. “ Nanny, why did you just say Cheezit? Do we have any? Did you buy some?
I shook my head wearily.
“Then why? Were you looking for Baby Cheezit? Can we get him out and play with him and everything? He’s so cute.”
By now all frustration and irritation has evaporated into laughter and I can’t even answer her.
“Why did you say Cheezit? What is so funny, Nanny?
Merry Cheezmas, everyone!
When I Lost My Voice
Ken Alward – Laurel, DE
In answer to WW question, the loss of my voice has been devastating.
I use a TEP and people can usually understand what I say. I find I speak very little these days. I'm having a difficult time getting over the "circus freak" aspect of life these days. My former outgoing ways have been lost along with my voice box.
Total laryngectomy done in April 2014. TEP placed in November 2014.
The new normal is taking time to adjust. I do have family support, but can't resume my lifelong sales career. I'm 62 and on SSD. Thanks for listening. WW has been a good resource.
Len A Hynds - Newtown, UK
In spite of everything you are told prior to the operation, you are never prepared for realising that from that moment on, your life will change dramatically, and that you will never make another sound if they are unable to fit some sort of artificial speaking aid. From that moment of exultation that you have survived the operation, and you suddenly realise that you cannot move in that recovery room, being wired and tubed. I still felt that I was breathing normally through the nose or mouth, but I knew that this was impossible, and my nerves were sending confused messages to my brain.
I thought that if I doze off again in my drugged state, would I stop breathing, thinking that there were no muscles to control it. Luckily, the Nursing Sister saw my twitching finger and read my thoughts, and said, “Don’t worry, your body will work automatically, drift off to sleep again."
They were not able to fit a TEP immediately, but family, friends and nursing staff were marvellous, and of course my only communication was by writing.
I have been a Laryngectomee for eleven years now, graduated at University since the operation, in creative writing, poetry and writing for stage and screen. And I write for editors, some eleven of them around the world. I still give talks to seminars of the medical profession, and some local universities.
In all that time, I have never met anybody making fun of the way I talk, except strangely enough yesterday at a remembrance Sunday parade, when greeting another veteran. A tiny piece of mucus got stuck in the valve, and my voice completely altered half way through my sentence of saying hello. I was struck rigid when he repeated what I said, including the disjointed words. He laughed, but not one of his close comrades did.
I felt sorry for him.
Terry Duga – Indianapolis, IN
I was very fortunate when I had my surgeries. My coworkers were very supportive and so were my bosses.
I was a litigator for the state, which means I went into court regularly. I was concerned when my voice was weak, but it soon got decent. I could use my voice as a "weapon" to throw my opponents off. In one of my first appearances, I so unnerved my opposing counsel ( who was a very decent person ) that he basically made my argument for me so I would not hurt myself.
I also had cases assigned to me so we could get continuances. The cancer card is something that gets attention.
This was during a time when the office was in flux. A new Attorney General had just taken office and she was of the opposite party from the previous AG. She was gracious when she heard about my cancer (she is a breast cancer survivor) she came to my office and assured me that I had a job and would have support. She got a very loyal employee for her kindness.
Max Hoyt – Lewes, DE
Class of 1993
As I woke up I was reminded by my family that my surgeon had told me I would not be able to talk. I had a pad and pencil given to me at that point. The problem arose when I tried to call the nurse via the call button. The aide at the desk hadn't got the word and merely shut the light off and didn't relay info to a health care provider.
It took about a month before it hit me that I was voiceless. Fortunately I was introduced to a good voice club that helped me.
John Haedtler – Espanola, NM
I was not aware that I did lose my voice! I was not able to speak for about 9 to 10 days. Only because I was told not to even try! When I got home I went to Radio Shack and bought a pocket tape recorder. Then I would read out loud then play it back to see what I was having problems with pronouncing. This helped me more than anything else!
My speech is really good for a laryngectomee. I do use a TEP that I change myself. I would not have it any other way! I recommend all Laryngectomees to try Karaoke Bars, not only do you get out but others will buy your drinks! It’s great!
Harry Hoffman – Gillett, WI
I had a great deal of help, from friends and family and interested parties. Not as much now as it has been almost 18 months since the operation.
Angeline L. Leu-Smith – Lincoln, NE
My family was there all the time and still are. For the two weeks that I had a trach, before my laryngectomy my two daughters took turns staying with me. I only had one emergency and luckily my nurse daughter was right there to take out my inner cannula when it got plugged by a blood clot. After the surgery they only stayed for a very short time because I got along great. A couple years after surgery, I moved in with my nurse daughter. That was because of financial reasons not health related. My church family has also been very supportive. I talk a whole lot less than before surgery, but I have learned that listening is more important. Now what I say has been thought through and carries more weight. I am thankful to have a close knit family that is there when I need them, but let's me make my own decisions and don't hover.
Dave Ross – Edgewater,
Class of 05
It seems the question "What was your reaction to losing your voice?" is hardly applicable to me and the reason is that for months prior to my surgery I had been fortunate in finding WebWhispers, and being retired had the time to investigate in great detail all the ramifications of laryngectomy surgery and the voicing options available. The result was that by the time I was faced with certain knowledge my voice box was going to be removed, my state of mind was not one of losing my voice but rather one of contemplating how my new voice would sound.
I had chosen TEP, and the puncture was done at time of surgery and 6 days later the prosthesis was placed. I was talking immediately and have never looked back.
WebWhispers was and has been my source of greatest support. Also I had both a great surgeon and SLP and have been fortunate to have had no reason to see either in years.
Dick Sunday - Pompano Beach,
A Terribly Lonely feeling! It was 2 months after surgery until I got my electro-larynx. During that time of writing everything down I ceased to be a real person in the eyes of many people. One group in particular, with whom I had a 10 year relationship apparently decided that I had had a lobotomy instead of a laryngectomy. Instead of empathy I got pity. It has taken me over a year to restore that relationship but I won’t forget their actions for a long time. Most of my friends and family stuck with me even at times when I was down on myself.
I just read a survey which claimed that Head and Neck cancer patients, and Larys in particular, have suicide rates more than 6 times as much as other cancer patients. For those of us that had radiation as well as surgery the rate was even higher. I can understand why! If you don’t have a fighting instinct and a strong core support group you need to find one.
Mark Swenson – Salinas, KS
After losing my voice box and thyroid. It was a little difficult at first since where I worked was pretty loud. Lots of equipment running in a production plant for making light bulbs everybody buys each day. So that made it hard for people to understand me when I had to whisper all the time. But that was the best I could do. I and others now have gotten pretty used to me using my EL, even over the phone.
Pretty much I just rely on myself for day to day tasks. Mowing the lawn, laundry etc. People have kind of stopped coming by for visits. Not sure if it's the “I don't want to catch it thing or not” but have a great new neighbor and we keep tabs on each other. So I appreciate her a lot.
I really need to move someplace else. The weather here in Kansas makes it tough at times with all the changes. Temperatures and humidity changes get me coughing a lot and not able to keep food down for at least one day. Then for some strange reason. I can't sleep for a night or two. Then right do to normal. One thing to let some know. Instead of buying Ensure or Boost to supplement things I have started using NutraFX Mass Expander mixed in a Magic Bullet blender. So when I want a little extra get up and go I use that and it's chocolate flavored which is a plus.
Scott Sysum - Concord, CA
Lary Aug 2008
Well it was noted by my ex-girlfriend that I didn’t speak that much before the surgery, so the difference was minimal. During most of my hospital stay I used pen and paper. Before I left the hospital I met with an SLP, and we tried various electrolarynx devices. Due to my prior radiation, I could not find a sweet spot, but the Cooper-Rand worked well. I was speaking again that day. Yes it is a mechanical sound, but it works most of the time.
Dean Robinson - Fonthill , Canada
I really got to say, maybe I’m one of the lucky ones.. STRONG Support from family, really don’t have many friends, three dogs is all I need.
Jack Leng –Tacoma, WA
My reaction to losing my voice was not as hard on me as I thought it would be. I had my family and friends, but most of all I had my computer which for me being 84 years old was the best help I could ever imagine.
I was diagnosed with throat cancer in 2006, they scraped my throat and I had 28 days of radiation. In 2013 I started to get hoarse, went to my throat doctor and he checked my throat again and found a sarcoma brought on by the radiation I was given 7 years ago. When they told me they had to remove my vocal cords it scared me a little, but when I checked the computer and read what would happen and what I could do afterward I knew what to expect. My family and friends were a big help, but my computer was the best.
I have a TEP which works but I also use a Servox as a backup. I sometimes get very frustrated but it is better than nothing. All in all I know I will never have my voice back, so I just am adjusting.
Ed Kuszajewsk - New Stanton, PA
Hey everybody. Ed K class of 2014 here. During the process of diagnosis I was still hopeful that it wasn't the C word. From the time of my first visit to the ENT until the scheduled scope I was optimistic. But when they tried to put in a breathing tube there was no room due to the size my tumor had grown.
My ENT and speech pathologist have been great. When we had questions or concerns they treated us like their family. My family has been very supportive as well as a few close friends. I have gotten to the point of accepting where I am and who I am now. I do miss singing, though. I used to do a mean Tom Petty. So I have been told on occasion.
Julius Akemu - Nigeria
Speaking out has not been generally easy. The stress of holding my throat to speak has been embarrassing but I don't have options.
I was fortunate in that I had a trach years before I had to have the laryngectomy. I know it's not the same but it gives one the taste of being voiceless and a neck breather. I consulted with a psychologist before surgery as I felt I already had frustrations about challenges to be heard, from being told to speak up in public situations, to being asked what was wrong with my voice, and when would my voice improve. The person was clueless to be able to relate to being voiceless and so could not help with tips or techniques on how to deal with situations without frustration.
My surgeon's SLP suggested I join WebWhispers, which I did. I must say the process to join was laborious. Once I started getting postings I felt out of place. So, I withdrew from the group.
A few months ago I met, online, Louis (Lewis) Trammell. He notified me of a laryngectomy support group at the very medical facility that I go to for my lary care. You can imagine my surprise that the SLPs didn't know about a lary group in their own facility. Through one of the HNC survivor’s Facebook groups I met John Isler. John encouraged me to give WebWhispers another try, which I did. I really enjoy the postings by Shmuel Mitchell.
At this point, one year post laryngectomy and esophageal reconstruction, I feel I've settled into life as a lary. I have another esophageal reconstruction coming up in December so the post-surgery swelling and healing with start all over again, but I've done it before so know what to do.
I am working with my local PCP and a different ENT surgeon to get a lary care program started as an alternative choice for our area. Today the facility I go to is the only one in the region. The next closest facility is a 5 hour drive away. We feel bringing some competition to the area will result in improved lary care and support.
I have no family in this country. I have a few good friends who are supportive in that they tell me to not try to talk. I live alone so I have to go out to get adequate socialization and practice talking. I have been told my voice quality is good. From my perspective as long as I can get myself heard, no matter how, I'm happy. I carry my boogie board everywhere with me in my backpack as in noisy environs my voice cannot be heard.
Henry Large - Southborough , MA
I had a ton of help from my better half, family and friends. My surgeon and the SLPs were fantastic. Mass Eye and Ear is, in fact #1! It still shook me, having always been a spontaneous talker. It still, on occasion, shakes me but I'm getting used to the hands free operation and it's getting better. Keep on keeping on, Webbies.
Almost a year now, cheers!
Doug Smith - Saint Clair Shores, MI
I had a great natural voice. At one time my friends use to call me "Mr. Radio," because my voice had that DJ quality. I could be loud without any effort and only needed a microphone in larger rooms. So being told that I had a tumor on my vocal cords and that surgery was the best option for survival was of extreme concern to me. I wanted to live, but I did not want to lose my voice. My doctors and I tried every possible method to rid myself of the disease. Unfortunately the tumor was resistant to theirs and my efforts and would not go away. Total removal of my voice box, some lymph nodes and part of my thyroid was the final solution left to me.
After the surgery my wife brought me some yellow legal pads and several pens so that I could ask questions and communicate with the doctors, staff, and visiting family and friends. She also got me a white board which I used to make daily lists of what I wanted to do. When I was able to go home I continued to use the pads to "talk," and when I went out I carried a small spiral notebook with me so I could ask for things at the stores. I also used a text to speech app on my phone and I used the technology in some situations (I set the voice to sound like the President's), I had a saved message that I could play over the phone in case I had to call 911.
I was surprised at how well all that went. Everyone, including my very young friends and complete strangers were very kind to me and very patient. Store clerks made an effort to help me get what I wanted and everyone was sympathetic and accommodating. In social situations I would write stuff down and have someone read it out loud to the group. Although, sometimes it was frustrating to hand my remarks to them and have them read it but not out loud and then give it back to me. I guess they were looking at it as if I was passing them a note under the desk in a classroom.
I came away from this experience with a real appreciation for the generally good nature of my fellow human beings. I was and am somewhat amazed at how natural the process of writing instead of verbalizing became and at how well it was accepted by the people around me. My wife didn't yell at me knowing that I couldn't "talk back." I never got the feeling that I was being treated differently because of my disability. My family and friends would even make fun of me, "Come on Doug speak up, we can't hear you," a true sign of acceptance. When I think back to those conversations I don't remember all the writing, my memory is that of me talking, I know that didn't happen, but that's how I remember it. I talk today with the aid of a TEP implant. I have a new voice, way different than the old one, but it does beat writing and now they can't shut me up!
Dee Davina Cook - Monroe, MI
What was my response? Would I still be alive to see my grandchildren? That was my response. And would I be able to go back to work.
I got cancer because I smoked, nobody's fault but my own. I was proud that I could still do what I did with some modification. 4 years later I will never speak again, because of major complications, but I'm still alive. Thank you God, and the doctors that did surgery
Herman Iscrupe - Talahassee, FL
Well at first I was very lost. I didn't think that I could go on. Then there was my mother. She is 82 yrs. old and she came to where I live in Tallahassee. Her and my boss got me to where I'm at now. Back to work and doing good.
I still get mad because some people can't understand me because they say I talk too fast. So I'm still learning. That was 9 months ago. I speak with an electro larynx. Getting better every day.
John Longval - Grande Pointe, Canada
For myself I never had any support from nobody. In 15 years people working for me never visited me and my wife left me. When I got surgery some of my kids never visited me in 15 years. I don’t think because we don’t have a voice we are monsters, we are people like everybody in this world.
Mohan Raj - Bangalore, India
Lary Mar 2010
I had Partial Laryngectomy [PL] first, mainly to save voice. I ended up with a whisperous voice after the PL. The PL failed, as cancer reappeared and I was left with no other option but to have Total Laryngectomy [TL]. My surgeon would keep encouraging me by telling that TEP fitment after TL would give me a much better voice than the whisper I was doing after the PL. That prepared me to accept losing voice.
My reaction to losing voice was therefore 'Acceptance'. For, after all, I accepted a major catastrophe of becoming a victim of Cancer. Losing voice to stay alive, was a small price to pay. I accepted it wholeheartedly, when it became inevitable.
I therefore neither looked for nor did I need any support from either professional, family, or friends?. Five years on, I have become well-adjusted to this so called 'loss of voice'.
Life goes on as ever.
Carl Strand – Mystic, CT
Laryngectomy, Feb 19, 1993
I had sung in church choirs and other choruses since my voice changed at age 14. I was a second bass and a pretty good one. I was singing a Beethoven choral work with a combined chorus of about 100 voices in early December 1990 when I got hoarse. Throat lozenges and cough drops did nothing. When I was still hoarse six weeks later, I saw my doctor and was referred to an ENT.
At that time I was singing in church choir and two community choral groups. The usual schedule was Sunday morning and three nights a week of rehearsal.
Her initial diagnosis following a scoping of my larynx was that I was a voice abuser and she referred me to speech therapy. This was followed up a month later with laser surgery to remove the lesion on my right vocal cord. When the biopsy showed cancer both she and I were devastated.
Recommended treatment was 35 radiation sessions. Following that I returned to speech therapy and gradually reduced the raspiness of my voice, even returning to church choir. Speech therapy continued on a follow up schedule.
When the hoarseness returned in the late fall of 1992, the ENT scheduled another biopsy which found cancer in the soft tissue of the larynx. A hemi-laryngectomy could have been done, but after a consultation with the Yale-New Haven Head and Neck Tumor Conference, a total laryngectomy was recommended. The members of the Conference also stated that I was probably a good candidate for a voice prosthesis.
The speech therapist immediately gathered a collection of electrolarynxes and explained that this would be one, and maybe only, method of communicating after surgery. I tried the various brands, which were much more limited that today, and settled on the Romet.
As a result of all this consultation and information, I never considered the possibility of not speaking again. I did have a sense of profound loss, knowing I would never sing again. I consider myself as pretty resilient mentally, and was able to resign myself to what would happen.
As it happened, my ENT did a primary puncture at the time of my laryngectomy. I had my own Romet a few days after surgery, even if totally unable to get intelligible voice from it with the oral adapter. I did eventually get some rather gurgley, barely understandable voice with it before leaving the hospital.
I was fitted with a voice prosthesis four weeks later, managed to say aaahh and my wife cried. I returned to speech therapy and continued that for another three months. I returned to work two weeks later and stayed in my job as an engineer for four more years before taking a Golden Handshake.
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out
Losing my Voice: A Humbling Experience
When I first heard the news that I was to lose my voice, I felt weirdly composed. I went through all the options with the surgeon and agreed to everything he suggested – major surgery in two weeks to remove the larynx, pharynx, oesophagus as well as the surrounding muscles and tissues. For the next couple of weeks my mood varied from depression to a kind of elated bravado. But outwardly I was fairly rational and calm – telling friends the news, making arrangements, updating my will and other legal matters, recording my voice in case this could be used afterwards, eating, exercising and relaxing as best I could so as to be strong for the surgery.
But when I woke after the operation, it was into a nightmare of fear, horror and anxiety. A stream of sensations – horrible, stinging ones – surged upwards from my throat into my head, and an avalanche of thoughts insisted again and again that this can’t be happening. On the outside, I was functioning as well as anyone expected after 12 hours of surgery, but inside it felt as if all the goodness had gone out of life. An unexpected emotion was shame. I felt, irrationally, as though I had done some awful wrong and had been punished by being struck dumb. I wonder if this happens to some extent for all laryngectomees who were brought up with the biblical story of Zachariah being struck dumb as a punishment for his lack of faith? For me, it felt as if I’d entered a hell-realm.
Basically I hadn’t taken in what ‘losing my voice’ would entail until it happened. I’ve heard it said that to lose ones voice is a loss of self. I think that’s true. I didn’t know who I was anymore. The old Noirin, who could chat easily, chuckle when someone made a joke, call out for help – that Noirin was suddenly gone. My personality couldn’t function. I couldn’t say ‘hello’, couldn’t say how I felt or express myself anyway naturally. I remember the nurse giving me a whiteboard and marker, and the thought trickling slowly through my mind: “Oh … this is how a person communicates when they don’t have a voice box”. In a sense I was a baby, learning life from scratch again.
But I had great support from friends. I’m not married and there is only my mother in my immediate family. She was so distraught by my news that I asked her not to call or even get in touch directly, as her distress only made my anxiety worse. My friend Margaret sat by my side for hours during the first days in ICU. She had enough wisdom to say very little. Whenever anyone spoke to me, it brought back the shock of being unable to respond as normal. She just sat there patiently, quietly, holding my hand. At blessed moments I sensed some calm energy flowing from her hands into mine and the stinging sensations and anxious thoughts stopped. Even though it was only momentary, the relief was profound, and gave me hope that all was not lost.
After a day or two, I knew I needed to give Margaret a break and take the step of meeting other friends. It’s sad and ironic that friends, who are indeed a great support in times of trouble, can also pose such a challenge to the new laryngectomee. The attempt to socialise demonstrates how much we have lost. I felt more threatened by men than women, and particularly by the energetic ‘doers’ amongst my friends. So I drew up a list of people who would have a calming rather than a stimulating effect and Margaret organised a rota for visiting hours. I told them to bring in a book or whatever, so as I didn’t feel pressurised to ‘chat’ (with my whiteboard). I sometimes asked people to come to the hospital, find somewhere to sit down, and then text me. This meant I could rest in the assurance that they cared and were nearby, without having to face the horrible reality of being unable to communicate normally with them.
Gradually, I learned to live in this new life and find happiness and meaning within it. I can’t pretend it’s easy. I still have to steel myself to ask for something in a shop for example. A sudden hush often falls as people nearby take in the mechanical drone of the electro-larynx. I don’t get the same enjoyment out of conversations when I have to repeat myself frequently. On the other hand, I can make easier connection with strangers nowadays, because there is a ready subject of interest – why I talk funny!
But the main thing I’ve gained from laryngectomy is wisdom. With the loss of my voice came the loss of some level of illusion and self-importance. That ‘come-down’, though painful, makes for a quieter mind. I practice meditation regularly and deeply appreciate that extra degree of silence. Also, having a handicap shows me the kindness and patience of others. It’s humbling as well as uplifting to see how readily people accept my vocal limitation and work around the challenge. As a result I feel more genuinely friendly nowadays and can empathise with other people’s troubles more compassionately. And although I would still love to have my old voice back, my thoughts usually come around towards: “well, if it has to happen to somebody, why not to me?”
To end with a happy story. Before laryngectomy I had taught meditation. But when I heard I would lose my voice I thought that phase of life must surely be over. However my meditation teacher was having none of that nonsense! He gave me a year to recover and then, this year, scheduled me in to teach three retreats – each lasting a full week - as well as many evening-meditation classes. He was right – I was able to find ways around the difficulties – mainly by getting others to do the talking for me. I got some lovely feedback afterwards, including the remark: “when something tragic happens, we can all work together and something quite wonderful fills the gap”. How true.
Visiting My Family History
Oh my, what a summer! For many years I have wanted to go to both Ireland and England. I have known for many years where my mother’s ancestors came from in England, then a couple of years ago I discovered that my 6th great grandmother was from Cork, Ireland. I planned, researched and made my reservations on line. I discovered that I had enough points on my credit card to buy my round trip tickets for only $450.
My trip started with an overnight trip to Dublin and a 2 hour bus trip to Cork. IT is a very interesting city. Only 30 minutes from there to Blarney Castle. I just had to kiss the Blarney Stone. First there was a steep hill and then steeper spiral steps of stone. I made it ¾ of the way up and my knees (68 year old, not replacement) decided that was far enough.
Back in Cork the sights and shopping were grand. I had an interesting tour about the Viking history. Even saw the oldest continuing operating pub in Ireland. A 2 hour Train ride back to Dublin was uneventful but got to see some of the beautiful countryside that I had heard so much about. That shade of green is amazing.
Dublin is a modern city with a real interesting history. There was something to see around every corner. They had a playoff match for the Irish Rugby championship with the Dublin home team against the Mayo Team. It’s a huge rivalry, at least as big as I have seen. There is very little parking so not much place to “tailgate.” BUT there are plenty of Pubs along the way and the fans make full use of them. They were spilling onto the sidewalk and in some cases into the street by at least 4 hours before the match was to start. I decided to go to a pub in the Temple Bar Area. Those folks really know how to have a good time.
The next day there was a protest over the cost of water. It started on O’Connell St., where Michael Collins started the “Troubles” in 1915 that lead to Irish Independence in the early 1920s, and went to the National Capitol with lots of chanting, singing and signs.
I flew from Dublin to Birmingham, England then a short train ride to Cheltenham. A wonderful small English City with a history that goes back to Roman times that’s not far from Bath. My mother’s ancestors came from Leckhampton, a 15 minute bus ride, to Virginia in the early 1600’s. The house is still there and many ancestors are buried in both the church and in the grave yard of the church. The house is now part of a hospice center. Lunch that day was in an Inn started by a family member many years ago and has retained the family name.
London was a very interesting city—huge, expensive, too much to see. I did get to see the major sights such as the Tower of London, Changing of the Guards, Tour of Buckingham Palace and British Museum. My favorite was an all day tour to Windsor Castle, Bath and Stonehenge. My favorite was Stonehenge. I simply was not prepared for its impact on me.
I planned and went on the trip totally by myself but never felt alone. Almost everyone was friendly and transportation was easy. Their buses and trains were frequent and not too expensive. In London the “Tube” was wonderful and, other than late at night, very clean. The weather was great.
I was surprised at how many people knew about laryngectomees either a relative or a neighbor. I’m ready to go somewhere else next year. France, Spain, and Peru are all candidates. If anyone has some extra money I would be most appreciative.
~ This column first appeared here in 2010. We re-printed it last year and a number of you wrote in saying how much you enjoyed Len’s holiday story so it is now a tradition- maybe our own “It’s A Wonderful Life”. ~
A Christmas Story
The onset of these darker evenings, and the thoughts of Christmas which is now only a few weeks away, remind me of those halcyon days of childhood which are so strong in my memory. I was seven and could only dream of wonderful presents. I knew that mum and dad could not afford what I so dearly wanted, that wooden fort in the toyshop window. For two years I had stood outside, just gazing at it, and those marvellous Scots soldiers in their kilts, red coats and white helmets lining the ramparts. The youngest of seven children, with very little money coming into the household, you soon realise that your own personal wants are not even mentioned, so I never told anyone of my heart’s desire.
Let me convey you to our darkened bedroom on the evening of that Christmas Day. My two brothers were asleep. I lay between them in our large bed, and being the youngest, I had to sleep at the opposite end between their feet. Charlie was always on my left, and with him being shorter than Alf, I could get a clear vision over the top of his covered feet, so I always slept on my left side. What a day it had been. I loved Christmas; it was always so exciting. And this had been one of the most thrilling days of my life, and as it was drawing to a close, we had been sent to bed.
I lay there, looking over Charlie's covered feet, at the faint glow at the window which was coming from the gas lamp outside. Even Jack Frost knew it was Christmas. He had made his own decorations on the inside of the glass window panes, as our breath froze into the most wonderful shapes. They were like sparkling diamonds, and I wondered what part of that pattern was my own frozen breath, and if it was forming those intricate close knit patterns because we were brothers.
Before falling asleep, Charlie had blown out our candle, but I could still see my present in the faint glow from the window. It was the wooden fort, with its ramparts lined with those Scottish soldiers. I could not believe it when I had been given it earlier that day. I used to stand outside that toyshop for such long periods just gazing in, that nearby stall holders, wearing mistletoe in their woollen hats, and faces glowing from their acetylene lamps, would nudge each other, and say to me, " You'll get it if you’re a good boy".
Well I was good, or so I thought, but would miserably say to myself, ' I can't even tell them what I want.' The man from the toy shop came out and spoke to me on a few occasions, and I asked him what regiment it was, and after peering in, he said, " Why, they’re the Camerons, a Scottish Regiment and they’re fighting in a country called Afghanistan right now."
My sister Kit had read us several stories written by a man called Kipling, and one story was about those Afghans sweeping down the Khyber Pass to ravage and ransack India, and they had been doing this for hundreds of years. As he spoke, I was with that regiment marching up the pass, kilts swirling, bagpipes playing, returning the fire from the mountainsides.
When Dad had carried that fort into the parlour with the soldiers lining the walls, I could not believe my eyes. They were the Camerons. I was so filled with emotion that I felt tears coming into my eyes, but brushed them away, knowing that boys don't cry like girls, but wondered how on earth did they know what I had wanted. Mum said, " The shopkeeper told us what you wanted, and how you had been so good for business just gazing in. He sent you these as a present." She produced another box with a further 12 Camerons inside.
Dad said, " There was this one who had a leg broken in the shop, and was going to be thrown away. I told the shopkeeper that you might like him." As I took this one, the one with the leg missing, I realised that here was a hero. He had lost his leg fighting those Afghans. I looked at my fort in the faint light and there he was, in a position of honour standing to attention in the uppermost tower.
British troops are still fighting those Afghans all these years later, and now they have their American colleagues with greater fire power to stand beside them.
It was the following summer, the exact circumstances elude me, but during a visit to our home by some relation, I was given a whole sixpence to spend, and I went to the market to buy something I had long coveted. As I crossed the road to enter the market, I saw a man sitting on the pavement with his back resting against the wall. A crutch leant against the wall beside him.
The poor man only had one leg, which was stretched out in front of him, and beside it a soldier’s Glengarry cap which had a few coins in it. The poor man was begging.
As I was passing, he picked up the cap to take out the few coins, and I saw the most beautiful silver badge on it. I read the word Camerons. I put my sixpence in his cap.
Frank is out this month, sadly because of a death in the family. He will return next month
I went back to 10 years ago to see what Dutch was writing about computers then.
You can find past issues at :http://webwhispers.org/news/WotWIndex.asp
This one is from Dec 2005:
Dutch's Column - revisited
Internet Becomes Central To Our Lives And Economy
A U.S. Census Bureau report of computer and Internet usage, based on 2003 data, was released last month and showed the Web has become integral to both our daily lives and the economy. According to the study, 40% of U.S. adults used the Web to obtain news, weather, or sports information -- up from 7% who surfed the Web in 1997, when the Bureau conducted a similar study. 47% used the Web to find information on products or services and about one-third purchased a product or service -- compared with only 2% who did so in 1997.
Demographics effected the rates of usage. For example, households in the western USA were more likely to have access to the Web than those in southern states. Alaska ranked the highest with nearly 70%; Mississippi the lowest with fewer than 40%. In 2003, about 68% of Asian households and 60% of white households had Web access, while only about 36% of each black and Hispanic households had it. 92% of U.S. families with an annual income of $100,000 or more had Internet access, compared to 31% of families with incomes of $25,000 or less. Email use has also exploded between 1997 and 2003. More than 55% of adults used Email in 2003, compared to 12% in 1997.
Analyst reports done this year show Web usage has grown considerably since 2003 and continues to do so. Predictions show that broadband Internet access alone will more than double this decade, reaching 71 million U.S. households in 2010. In 2004, 39.5 million U.S. households shopped online - 3.5 million more than in 2003. Researchers say that broadband, laptop, and home networking adoption will help drive online research and purchasing to more than 55 million households by 2010.
I guess the WEB is the current and future "PLACE TO BE!"
Dutch went on to write about discovering how to use your computer from a remote location and to complain about MS bugging him with Windows XP....
Now it is Windows 10. Some things never change!
Currently, the stats are out for 10 years later, 2013. A Sample:
• In 2013, 83.8 percent of U.S. households reported computer ownership, with 78.5 percent of all households having a desktop or laptop computer, and 63.6 percent having a handheld computer
• In 2013, 74.4 percent of all households reported Internet use, with 73.4 percent reporting a highspeed connection
• Household computer ownership and Internet use were most common in homes with relatively young householders, in households with Asian or White householders, in households with high incomes, in metropolitan areas, and in homes where house- holders reported relatively high levels of educational attainment
• Patterns for individuals were similar to those observed for households with computer ownership and Internet use tending to be highest among the young, Whites or Asians, the affluent, and the highly educated
For much more info and the tables.
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