Practical Speaking With the AL (Artificial Larynx)
I would like to share a few hints with those who have not had the benefit of working with a support group or a professional who is familiar with alaryngeal rehabilitation.
I hope you find some of these practical hints helpful. They represent lessons I learned while I used an AL for almost three years, from attending the IAL Voice Institute and then as an alaryngeal instructor since 1982.
How Have the Mighty Fallen
This month I want to talk about how much I love my new little babies and what joy they have brought to my life. Now, before you gag or choke, if you are NOT an animal lover, perhaps we can agree to meet here again in a month or two. And if you did happen to read my last column about sex, I trust you realize I am NOT talking about the product of my recent forays back into…well you know.
My darling son and only child just turned 30- he married his sweetheart back in September- and I couldn’t love them more if I tried. They are awful good to me and I think my son, especially, worries that I spend too much time alone. We adopted a dog from the pound when he was just a toddler and our Sheppie turned out to be the best dog ever in the whole wide world. We also always had at least one cat while Emeth was growing up and he decided I needed something warm and furry. He sent me the pictures first knowing I would melt and then brought over two little kittens- brother and sister- then only 8 weeks old.
Now before you scroll down thinking this has absolutely nothing to do with being a lary…bear with me. First of all, I live alone and use an EL exclusively. I do NOT walk around the house with it hanging around my neck. Nevertheless, I have developed a very satisfactory way of communicating with my little bunkies.
Cat lovers will tell you that you don’t train a cat- it decides to allow you to be its human. Cats have no concept of the “alpha male”. But if a kitty cat decides you are its mama, it will hear you no matter what. So I don’t need my “other voice” [what I call my pre-cancer voice] or my Servox to make my babies hear me. I use the rattle of the just filled cat food dish- universal cat talk- or smoochy kiss sounds to call them when they have hidden under the sofa- or chchchchch when they start to scratch the sofa or climb up my pant leg and I am saying, No!.... or ssttt when they jump on the counter- that needs to be followed by a judicious spray from the water bottle…lately I don’t even have to pick up the water bottle, just pretend to be pointing something at them and make a ssttt sound.
My son’s dogs are trained to hand signals but they know my “voice”. They respond to my “sh..sh…sh…when I first come in to the house and pet them and my “ch..ch..ch” when they get too rambunctious. They know if I stamp my foot, I am serious- they need to calm down and if I clap or slap my thigh they must come right now.
This is important because sometimes newbies are told they shouldn’t have pets because of the hair and allergy issues. I am here to tell you, kitties ARE fascinated by stomas…get yourself an HME or couple of bandanas…the joy you get from that warm, cuddly, curious, funny little creature is far outweighed by its dander.
Plus, if they start to annoy you in the night, just scoop them up and put them outside the bedroom door. Try doing that with a boyfriend! HA!!
Seriously, multiple studies have shown that pets are good for you…if you like animals. I had a grandmother who really did not like house pets…the nursing home she was in at the end had a cat and I can tell you that creature did nothing but elevate my Nana’s blood pressure!! Thankfully, he had a much better reception from the other residents.
My point is that if you have a beloved cat or dog or gerbil or chicken (yes, I actually have friends with pet chickens) or you want to get one, it is a non-issue for us. Let’s face it- they probably didn’t understand our spoken language before our troubles all THAT well- animals read body language and tone and frankly, cuddling is THE universal language.
I was thrilled to get one of those Ad-Vox amplifiers at the IAL in Chicago…Thank you , Bruce Medical, Richard Najaarian & Linda Rainbow, and I have had great fun experimenting with it …although my son did make some rather rude comments about where I could place the speaker for maximum effect….these kids today!! But my kitties were so startled by my new booming voice they hid under the bed until I took it off and used my “regular voice” to call them.
It appears that I am well on my way to becoming one of those eccentric old cat ladies who putters around in her flowerpots while she mutters to her cats. My son and I have joked for years that I am going to be that granny with the wild hats…the one his wife will say about as they drive over for a visit with my grand children, “You know, I love your mother dearly, but do you think you could ask her NOT to tell the children AGAIN about when she was in the cult and lived naked in the woods?”
Hmmph…my cats LIKE that story!
In My Own Words: An Altered Life
By Libby Fitzgerald
Part one of a two part series
Home improvement projects can "unearth" many things…, as did the recent painting of all the rooms in our house, including the closets. Talk about a project!! While going through piles of papers, trying to decide what to keep and what to discard, I came across the old spiral notebooks I first used after my surgeries when I was unable to speak. Boy, did they cause memories to come flooding back! These weren't journals, but my one-sided responses to conversations with lots of different people. Trying to figure out who I was speaking with and what we were speaking about reminded me of those old Bob Newhart routines where you heard one end of a phone conversation and had to figure out what the other person was saying. If you don’t know about Bob Newhart…more’s the pity…a truly great comic, but it was kind of like overhearing today's cell phone conversations only WAY smarter and funnier!
I was diagnosed, in August of 1993, with Adenoid Cystic Carcinoma. At that time we all agreed to treat this particular cancer with surgery to remove my thyroid and part of the tumor that extended into my trachea. The rest of the tumor was treated with radiation in hopes of saving both my airway and my vocal cords. In February, 1998, I had to have a trach tube inserted because of complications from a bronchoscopy and a narrowing trachea that we thought was due to scar tissue resulting from the radiation. The intention was to have a 3-step procedure to reverse the need for a trach. This first step, in early August, 1998, was for the removal of existing scar tissue. Of course, what we didn't know at the time was that under the scar tissue, my slow growing cancer had returned and fully involved my larynx. All comments in this first notebook were made with the assumption that my trach problems would soon be over. Hah!!!
Notebook # 1
[Describing post surgery] "Yesterday was not too hot! The anesthesia made me sick to my stomach and I was really wiped. Today, I had a clear liquid breakfast of apple juice. Jell-O. lemon ice, bouillon and tea."
"I used the bathroom instead of ye olde bedpan today."
"I'm still coughing up bloody gobs. Looked just like my jello."
[My daughter's wedding was in ten months and we were discussing gowns and the like…from a hospital bed]
"Do you have a picture of the dress?"
"I was surprised it was quite reasonable. Looked like top quality."
"Next, I have to look for my dress. Maybe Madonna has some hand-me-down just my style."
[Comments on my medical apparatus during a visit from the bride-to-be]
"Mostly dozed. I had to keep my arm in one position or else I'd set off buzzers."
"When I bend my arm, it crimps the IV."
"The headpiece should be your choice. Then they can work with it. Every bride has her vision and is entitled."
[During this hospital stay, I got a roommate and we exchanged brief communications. Since I was already in the room, I felt like the hostess. LOL! ]
"Would you like to look out the window? I can pull the curtain open."
"It seems so strange to eat in silence. Where are you from?"
"Today is my 34th wedding anniversary. Some celebration!"
" I'm trying to build myself up so I can go home tomorrow."
[In comes breakfast]
"Could I have regular coffee? Toast would be good too."
I am going home today, Rosemary. Good luck and full recovery! To both of us."
"It will be good to have a voice again. I'm a real estate agent."
Boy, was I wrong about that!!
[Full laryngectomy 09/18/98. Two days later … My husband was visiting and asked how I felt. Shortly before he arrived, I had looked in the mirror.]
"I can't look much worse. It can only get better."
"I definitely don't want visitors yet!"
"My fingers are slightly swollen so no rings for me yet."
"I have to be careful not to flex my neck."
"I know the suctioning sounds gross, but it keeps me from swallowing."
"Doctors said I was coming along well. Wanted me up. Pneumonia."
[I must have started feeling better, because my notes became longer and more detailed]
"When you next speak to Erin [daughter], tell her the feeding tube is a funny experience. They fill the tube, which is taped to my forehead before it goes into my nose, and I feel this cool sensation as it travels thru. That happens mostly when they're giving me my pills in water or clearing out the tube. It doesn't really bother me - some people get nauseous, but so far, I'm OK with it and the feed bag."
Overnight, I had a scary experience, where my calcium level dropped, causing my face to get numb and scrunch into spasms. The doctor would lightly snap his fingers on my face to see if it would twitch, a sign of calcium deficiency. Sure learned a lot in a short amount of time!
"Everything numb and tingling in my head, face, body."
"Why is my calcium level so low?"
[The answer was that my para-thyroid glands stopped functioning, probably a combined result of surgery and the previous radiation.]
[In answer to why I was having another blood test, probably to my husband]
"My calcium level has been low which is why they keep checking my blood. I am getting a calcium supplement."
"I thought I was having a stroke."
[In answer to someone]
"I'll earn a medical degree by the time I leave here."
[My wise guy humor started surfacing again]
"I had to leave the room with my "meals on wheels" (translation: IV pole) Some people have a BMW. I have an MW."
[Because I always did the food shopping and had to give my husband shopping hints, I suggested that he speak with a particular male friend who did his family's food shopping.]
"Ask Jim for shopping lessons."
[After seeing a Servox demonstrated]
"Maybe I'll learn how to sound like a robot."
[Typical post surgery complaints]
"This morning was not too great, My veins kept rolling and they needed several tries. Then I had a sinus headache and then slept between doctors' rounds."
"He was supposed to come this AM, but had a patient emergency or something. Was told he would stop by later."
[Typical wifely concern]
"How have you been sleeping? You sound like you need a nap."
"You probably should go now. Even if you can't mow, you should do some relaxing."
[To a nurse]
"Can you unplug me so I can go for a walk? Also to the bathroom?"
[A minor "pity party"]
"My nose is tingling and my upper lip too, plus my head aches. My head and back of my neck hurt. Can you hitch me up on bed and give me Tylenol?"
[Later, referring to a tough nurse]
"The ‘sergeant’ kicked me out of bed."
[Conversation with the hospital's social worker who asked about my background. My writing speed has improved and I kept up with her questioning pretty well]
"36 treatments. Columbia Presbyterian. Lived in Mahopac. 2 grown children in Boston and NYC. Teacher in Somers. Sell real estate, etc., etc."
"Would like to go home without feeding tube if possible."
Asked if I would consider going home sooner than expected, I had a slightly panicky reaction.
"I want to be realistic. There is no one at home now. If I went home early, the doctor said not to eat for a week. It concerns me. Complications. I'm a very self reliant, independent person, but I don't feel I would be ready yet. He has to tell me all possibilities with early discharge."
I then went on to describe my 7 months managing with a trach tube, explaining how I concealed the tube with light silky scarves, discussed medical coverage and other related subjects.
"I don't want to stay more than needed, but I don't want to feel unprepared at home."
Next, we discussed my full cancer history going back to the original diagnosis in 1993 and how this recurrence was unexpected by me.
"Thought radiation did the job, but I knew my vocal cords were in jeopardy. Asked doctor to spare them back then. I had 5 more years with my voice. Better able to cope now."
When asked about the originally planned TEP puncture:
"Was going to, but found more cancer which required flap at implant site. To be done later."
When asked about plans to use an electrolarynx:
"I plan to use it on a temporary basis. In Real Estate, you need more expression. Practice, practice. I'm very verbal and motivated."
What I didn't know was that it would be 18 months until I could successfully use a TEP, so I got lots of practice with my Servox.
We then discussed possible support groups:
"E-mail. Met with support group in Danbury. OK, but no one there has TEP. Will look further."
I didn't know about WebWhispers yet and since that time, other larys joined the Danbury group who speak with TEPs.
When asked again if I felt ready to go home,
"I don't want to need it (feeding tube) when I go home. I want to wait until they remove the tube. OK, but I hope I won't need it at home."
Gee, do you think I had some anxiety over that tube?
"My headache is back."
Early trach tube encounters:
"My trach tube keeps slipping out." "Trach ties were loose & tube slipped out." "Just had it tightened. Feels better."
Was told the "Good News" that I might possibly be discharged soon.
‘’Isn't it strange how we can't wait to get out of the hospital, yet the thought of going home without all that medical backup is very scary?
"I'm not ready to make decision. Uncomfortable with Friday." "If my calcium needs monitoring. I'm not ready to."
When asked to explain, I simply said,
"I'll need bigger paper."
To be continued….
Who Takes Care of the Caregiver?
What? What is that sound I hear? It is 4:30 in the morning and a train is going through! And by golly, there is another one! They aren't supposed to be coming through at this hour. Did I not hear the midnight train? Or has the schedule changed?
Now, this is worrying me. Was there a derailment? An accident? I turn on the news but the local broadcast does not start until 5:00 AM.
So I fuss and pack my lunch for the day and wait for the rest of the household to catch up with me.
5:00 AM comes and there is no news about any train problems. I start the day preoccupied. But as I start my hour commute it occurs to me that I start every day pre-occupied, and worried. And usually it is about me! That ache in the side of my neck. It couldn't be how I slept; no, maybe it is a lymph node. The weight I can't get off must be because what is left of my thyroid is cancerous. It certainly couldn't be the pasta and potatoes and lack of exercise. The fatigue is because the cancer has spread and I am as tired as I was before surgery. It couldn't be that I am much older and trying to do the job I did 20 years ago plus keep up with all of the rest of life's responsibilities. I can just ignore that comment Frank made about his ankle hurting; well, that doesn't mean anything because he hasn't had cancer. Or when he mentioned he just wasn't hungry, which is out of character for him. Well, he just did that for attention.
Bingo! Light bulbs going off! Warning, warning! Train is approaching the crossing!!!! Stop! Do not proceed!
There is nothing better than being forced to wait for a train to pass because it removes all controls from us and we have nothing to do but fume and fuss or think.
There are more reasons, than I have the ability to list, that justify us being self absorbed because of our "situation". It is so easy to slip into the martyr syndrome in a heart beat. But what I find fascinating, at least for me, is I expend SO much energy at work and in social situations over-compensating for being a lary. Always a smile, always a joke to put others at ease when they first meet me, always doing stoma/trach cleanup and repair and even coughing in the bathroom or behind my locked office doors. Always emerging with a smile when I know I have fooled no one. Tears of frustration only on the way home. So by the time I climb the stairs to the kitchen to be greeted with love and concern by Frank and the animals, I once again am a witch (feel free to substitute the letter "b" for "w" because that is reality.) And the cycle starts again.
How really abusive on my part! I am blessed with a caregiver who devotes himself 24/7 to protecting me, assisting with my trach care, maximizing my ability to speak with his subtle tweaking of base plates, amount and type of adhesive, timing of application, and holding my hand when I change the TEP. (I don't know who cries more when I encounter difficulties doing that). He shops for healthy foods, he always has something waiting for me like crackers and cheese since like many of us I suffer from GERD which is pretty severe and he knows that. He gets up in the middle of the night to raise my pillows so I am more upright, helping the secretions drain and the acid reflux stay put. He closes windows when the neighbors put chemicals on their lawn and again when they mow, knowing the chemicals are now really a-flying! He is on a first name basis with folks at our supplier of necessary things. He removed 3000 sq. feet of carpeting because some of it hid mold!!!!!! That took him weeks and he could only do it when I wasn't here. And then as he removed each section, he disinfected it again before I got home.
And here comes me, this self absorbed person who at times thinks she is the only person struggling and who reacts to her co-workers with more pleasantries and patience than she does with the most important person in her life.
I am not sure I like the person I just described. This cancer disease, regardless of the form it takes, affects everyone associated with its victims. It has a ripple effect. Sometimes resulting in support and understanding, sometimes resulting in isolation. But for us who have loving and patient caretakers, best we take care of them!!!!!!
When I was a nurse my mantra was, and still is, "Who takes care of the caretaker?" Best be us!! Where would we be without them? And I don't mean only the physical things they do for us but also the emotional support, the acceptance, the love, the forgiveness of our selfish actions.
We are not easy folks to deal with. We have anger and self pity and a low tolerance of others who have complaints we consider inconsequential. And most of us bury those feelings because we are afraid to bring them out in the light of day. It is so easy to build a wall and dare anyone to break it down! Now I know many, many, of you have overcome the negative feelings, have accepted life as it is and have gone on. But even for you, in the beginning you had the feelings because that is part of going through the acceptance of our situation. So this is not new information to any of us.
I have read letters from caretakers who needed advice from WW and were obviously hurting. God bless WW because the response was always overwhelming. Do we practice that every day at home or wherever our support is? The caretaker doesn't have to be part of the family. It may be a friend, a neighbor, an email buddy. Do we take the time to stop being so self absorbed and open our eyes and try to see what they are going through.........for us? And do we acknowledge it? Do we ask how they are feeling? Pat their hand, give them a hug, write them a note? If we do, it helps us as much as it does them. We get out of ourselves and see that we are not the center of the universe. And what a relief that is! Pretty heavy burden to carry that no one asked us to do. I think that is the job of God or whatever Higher Power in which you believe.
So please take care of the caretaker! They didn't ask for this, didn't need it, but 99% of the time have risen to a position close to the angels.
Now about that train, You know what? Since there was nothing on the news and so there wasn't an accident, is it possible the schedule changed? Do I need to worry about that or do I need to let go and be solicitous of that ankle pain Frank had and spend some time planning a dinner of some of his favorite foods. The smile I will get from him and when he says, "Boy! That really hit the spot.", will make me smile,too, and will make both of us feel healthier and happier.
Love and prayers,
Rosalie Macrae is a journalist from the Scottish Highlands, now living in Colchester, the oldest recorded town in Britain. She had her laryngectomy at the end of January, 2005, the day after her somethingth birthday. Some things are sacred she says, but she felt like the oldest recorded laryngectomee.
It was some way to spend your birthday, tubed up like an octopus. Mozart had his (birthday, not laryngectomy) on January 27 too, but never had to experience tubes. Tubas, yes. He included them in his symphonies. Or perhaps it was French horns.
Anyway, she was able to enjoy the Nantucket Eau Fraiche spray from one of her sons and thought that this scent (slightly redolent of seaweed and sun oil) was the last thing she would ever smell in her life, apart from anesthetics the following dawn-- operation day. But no. Two days later when same son, Daniel, came to see her in intensive care, she was over the moon to be able to smell his hair gel; equally 'heavenly' was the odour of turpentine from the trousers of youngest son Magnus who had come straight from painting kitchen and forgot to change. So the first thing she wrote in the first of dozens of notebooks was--
please don't use that stuff on your hair again, Daniel.
She was in hospital for six weeks, as she had to have stomach pull-ups at the same time because of cancer spread. That procedure meant she could not have a TEP. But talks as much as she ever did, with her Servox and TruTone. Maggie, her speech therapist, is delighted at the way the Scottish accent can be easily picked out. Which is why we have decided to call her ‘rambles’:
WITH A SCOTTISH ACCENT
by Rosalie Macrae
Grandmother Macrae would have been horrified if I'd presumed she could suck eggs, even capercaillie* eggs, let alone be taught how to do it, as the old homily goes. Murraymints yes. Especially, noiselessly, in church unless they stuck to her wallies. Wallies being Scots for dentures. Departed granny only comes into this because for a new lary like myself to be presumptuous enough to teach anything about cancer of the larynx would be like a small town math teacher telling Einstein his views on splitting the atom.
Or telling the fabled grandmother** how to. You know the rest.
We larys are all, obviously, the same in just one way. Larynxless. But mostly, thank goodness, totally different, or who could I turn to for advice? I wonder for example, how you would deal with these teenage girl bullies who are making walks in the local park with my black greyhound/lab, Sally, a bit of an ordeal since the start of the school holidays. The poor things are bored out of their minds despite all the electronic goodies in their bedrooms. Boudoirs they call them round here. Any resemblance between the exquisite Marie Antoinette and this bare-midriffed, dingy denim lot being purely coincidental.
Take yesterday. I unleashed Sally, friendliest dog in the Western hemisphere--and they'd find her very tasty in the East. She zoomed away to les girls in the distance. They always seemed so interested in her. Asking the same questions every day mind you. Did she bite? What was her name? And making funny mistakes when told it was ' Sally'.
They wandered over to me, happy dog capering beside them. Asked if she would bite. No. Never. Asked her name. I said it was Sally and spelled it out.
Ah, the gang leader nodded. She was called Lally. Smirk. No, said her sidekick. The lady said Pally. Soft girly hand over mouth and a giggle. The third one looked me in the eye, and apologised for her friends. They knew it was a boy called Sammy, she said.
Gratified shrieks, and they looked at me. Waiting. Usually I just shrug and walk away pretending a kind smile. But yesterday I had been paying the bills and was on edge. As one is on these days of the month. No. Not these days back then. These days.
I heard myself, to my horror, coming right down to their level and saying clearly--I do good Servox--that no boy called Sammy or anything else for that matter would look at such a bunch of sad girlies, and if I were them I'd run home before they were late for their milkshakes. I stood there and stared them out. Leader dropped her eyes first.
'C'mon, ' she said to her pals. And they ran off, actually not tittering for once. But I suppose I let them win. Today I took Sally in the car and went to another park, further away from home.
Then, in this new world of, to me, unknown situations came something unexpected, charming. I have a newish friend called Carol. Another Sally connection. When I was in hospital having the operation she called round to my son living nearby and asked if she could take the dog out. No dogs were allowed in the apartment block where she lived. It was a Wednesday. She has been round every Wednesday afternoon since. Sally and Carol have a mutual adoration society. She baby-sits my young grandchildren and the older ones invite her to their parties.
Today she handed me a huge parcel. It was a painting of a wistful girl with a rag doll, a Gainsborough copy, done by Carol's artist father who died two years ago. For once I was speechless. She said that it was too big for her bedroom with Beyonce as well. Dad had painted a good likeness of her and she preferred Beyonce.
Carol is a couple of years older than the 'baddies'. I haven't told Carol about the gang as she is good at martial arts and anyway I must go on fighting my own battles.
I have another battle today. An article for a magazine about some disastrous holiday experiences. Only the second piece since becoming a laryngectomee. The first one, the breakthrough. After total journalistic block, has been to you. I felt it was an encouraging web out there, and thank you from the bottom of my stoma.
*Capercaillies, massive Scottish grouse, are very rare now and as protected as the Crown Jewels. I saw one on a cousin's farm two years ago and the hairs on my head stood up like a capercaillie's fanlike tail. They are huge, and have dark plumage and their name in Gaelic means 'horse of the forest'. Tetrao urogallus. And their eggs Well, they are, quite simply, simply priceless and sucking them would earn immediate internment in Edinburgh Castle. Even if you were a grandmother.
**Grandmothers and egg-sucking: it appears that this gradually crept into the lingo in the days when people had pretty pastimes like decorating empty eggshells; toothless grannies were better at sucking without damaging the delicate shell, than grandchildren with 32 sharp molars!
Recently, much has been written by many of our members regarding disability income. Please keep in mind when reading the following thoughts, that I am fully aware many of us do not have a choice.
I was personally faced with the decision of whether to apply for disability income or not, back in July, 1995. That was one month after my total laryngectomy, and I had just been declared indigent by a Social Worker for the State of Maryland. He recommended that I apply for disability income and said that I should not have a problem being approved for it. I thought about this and it sounded good, however, I also thought that being declared indigent at this time was a bit premature. I thought of all the various scenarios and decided to wait until I was more rehabilitated before making the important decision that had such dire long-term effects. To me it would have been like ‘throwing in the towel’. As it turned out, I am glad that I was not impatient in this matter. In late October, 1995, I was able to wean myself from the oral adapter that I had needed to use, due to radiation side effects. Once I was able to place my Servox to my neck area and speak, I was clear and understandable and ready to try to be financially productive again. I returned to my position as a Sales & Marketing Director for a Builder/Developer. I had never communicated with them vocally during the entire time I was rehabilitating --- only by fax, as I wasn’t into E-mail yet!
Below is a WW message sent to our founder and webmaster, Dutch Helms, back in 1998. Dutch then sent the message to the mail-list (less than 100 of us at that time). His message is followed by the original inquiry that came to him, and then by the response I wrote to that inquiry. I have not doctored these in any way; so you are able to see both the original(s) and the response, exactly as they appeared in the very early days of our wonderful support group.
Received the below E-mail inquiry this morning from "Lisa B". If any of you
have any words of wisdom for her or "John", please drop her an E-mail at her
E-mail address of: "firstname.lastname@example.org". Thanks and God bless. DUTCH
In a message dated 11/14/98 10:25:45 AM Central Standard Time, Lisa writes:
Subj: E-mail from Larynx Cancer Pages
Date: 11/14/98 10:25:45 AM Central Standard Time
Hi there -- my name is Lisa and my friend John had a partial laryngectomy in 3/98, but now the tumor has grown back -- large in size -- and he will be meeting with a radiation oncologist next week to discuss radiation and/or total laryngectomy. My question is, he has always been a salesman of some sort -- mostly car sales -- and with the total laryngectomy (if it comes to that) he will not be able to do that type of work. Do you know where he might be able to inquire about the possibility of social security disability if he can't work? Have you heard anything about whether a total laryngectomy even qualifies for any type of disability status? I'd really appreciate any info you might have.
Thanks, Lisa B
Subj: Re: E-mail from Larynx Cancer Pages
Date: 11/16/98 1:33:25 AM Eastern Standard Time
My name is Herb Simon. I am a laryngectomee. I rarely write much on-line but your friend’s story really hit home for me, and I feel that I need to share some of my thoughts and just hope that they will be helpful. I will start by saying that I realize that all laryngectomees are different, just as I realize that all people are different. I too thought of all the alternative methods of income and also I thought that if I could ever sell again, I could make a lot more money than disability income would offer. If John was a good salesman up until now, he has a good chance to be just as good or even a better salesman after a total laryngectomee. I sold and managed in the car business for more than 10 years, earlier in my sales career, so I am knowledgeable of what it takes to be successful.
I am now a Real Estate salesman in MD and VA. I was diagnosed with Cancer of the larynx in October, 1994 and underwent 6 weeks of radiation that killed the cancer. I was radiated every weekday morning at 7:30am and worked my regular schedule during this time. My voice returned to normal for a short time until the cancer reappeared in May, 1995. It was spreading fast! I had a total laryngectomee in June of 1995. At that time, I actually thought that I would never be able to be a salesman again. I thought that without my natural voice, which was deep and resonant, I would be rendered ineffective. I might add that in the months preceding my operation, my voice had been reduced to a whisper and that I had already resorted to writing my thoughts on a few occasions. I worked up until the day before my operation and had already prepared for the financial drought that I thought lied ahead. I had made enough money in the months prior to my operation to know that I had enough commissions coming in to pay my bills for the next six months. I had mentally prepared myself to concentrate on getting my physical self recuperated. I walked and walked and walked. From the third day after my operation, I walked the halls of the hospital, rolling the stand with my IV tubes in it. One lap the first time and progressing to about ten laps five times a day until my release from the hospital after 10 days. Although I was getting physically stronger, I was suffering from the fear of the unknown about my new voiceless self. I was speaking at that time with a Servox electro-larynx (EL) with an oral adapter. I was embarrassed when I went shopping and would use handwritten notes rather than draw attention, weird looks, and laughter from those within earshot. It didn't take me long to figure out that they didn't have a problem with the way I sounded, I DID! I began going to a support group in August. I joined the Nu Voice Club of Northern Virginia. That was a great boost to my morale. In September, I joined the Laryngectomee Club of Montgomery County (LCMC) in Maryland. I highly recommend this for any laryngectomee whatever his/her situation is. I am still an active member of both clubs today.
While I was recuperating, I made myself do positive things. I had recently bought a computer and at first I only knew how to turn it on. I pushed myself to learn how to use the computer and walked a lot as I mentioned earlier. I tried to do positive things and not let myself be overcome with negative thoughts. I thought that if I couldn't be a salesman anymore, possibly I could earn an income with computer skills. I didn't know how I was going to make ends meet, but I never lost faith that everything would be all right, no matter what. The first week in October was the first time I was able to speak with the EL and not use the oral adapter. Suddenly, as if a miracle had occurred, I was able to speak and be perfectly clear and understandable to most people. All of a sudden, my self-confidence began to return. I returned to selling Real Estate on October 20, 1995 and made my first sale on the day before Thanksgiving. I sure had a lot to be thankful for. Once I had made all the adjustments and learned about my new self and produced my first sale, I completely let go of any fears about the future that may have remained. Today, I still speak with a Servox Electro-larynx. I have been successful since my operation. I am active in the two Laryngectomee Clubs that I mentioned earlier because I feel it is important to help other larys that come after me. A member of the Virginia Club, Gary McLean sells New and Used trucks at a Ford dealership in Northern Virginia has also picked up where he left off before his operation. He is probably at least as old as I am and I will soon be sixty. He also speaks with a Servox EL.
What I am trying to say is that we are still salesman. Although we have lost our natural voices, we have not lost our knowledge of sales, our determination or our ability to communicate. We may sound different, but what we say is much more important than how we say it. After most customers (people) have talked to us for a little while, they don't even think about how we sound. There is a chance John can be at least as successful as he was, or maybe even more so, if he uses his new way of speaking to his advantage. As a salesman he has learned many skills over the years and has also learned that he must maintain a positive mental attitude (PMA). He has an uphill battle, but with a strong will and determination, he can weather the storm if he has a successful operation and recovery.
In my experience with laryngectomees since my own operation, I have come to realize that most of us are just like we were before the operation. By that I mean that we have the same strengths and the same weaknesses as we had before we lost our larynxes. All of us can do whatever we put our minds to, if we have the faith and will to do it. I hope this helps some and will be very interested to hear how John does. I wish John all the very best of luck in the future and will be including him in my prayers.
Silver Spring, Maryland
I realize that many fellow laryngectomees who read this, will not have the option to go back to work after surgery. I never had a response from Elsie or John, so I don’t know what ultimately happened in their case. I did however have much response and positive feedback to my response.
When reading the recent thread of messages regarding disability income, I thought this message might help someone or some to realize that they may actually have a choice of whether to try to receive disability income, or to return to their former or even a new position.
SIMON SAYS: By choosing to go back to work and become productive again, when fortunate enough to be faced with this choice, will in all likelihood enable the decision-makers to live a better quality life and lifestyle, feel good (better) about ourselves, and set a good example for those around us, especially children and grandchildren.
Looking back on September 29, 2005 - A Day of Infamy
My Life's Retrospective
As the one-year anniversary of Hurricane Katrina came upon me, I began to feel very anxious. I never realized, how much the way I "reacted" to challenges, was always met the same way. When I look back at Hurricane Camille, as an 11 year old girl who's family lost everything, although there was much sadness in the loss, there was also much hope for the future. I remember first entering our home and trying to open the door. There was 4 inches of thick mud that almost prevented us from opening the door. As we entered the house, we could see all of our ruined personal belongings. I remember my Mother being so brave. She kept saying that everything would be okay. The roof over the kitchen had been ripped off, and I can remember looking up through the roof, at the now blue sky. As we worked our way through the house with all the muck sloshing around, I wondered just how we would ever be able to live there again. We had lost everything that was important to us; pictures, papers and letters...all gone. My mother sent my brothers and me away to New Orleans with family, while she put all the pieces back together. When we returned, although Long Beach was devastated, there was optimism that we would rebuild the coast again.
In a "100" year flood that took place 12 years ago here in Slidell, my home was devastated. We lived right on the French Branch Bayou, and the rain that ensued, lasted for two days. Sometimes we don't realize the danger that is lurking, because it comes upon us so slowly. The next thing we know, we are trying to make decisions that will save our lives. I remember waking up at 2 a.m. hearing the rain beating like hammers on the roof. It had rained the day prior, but had accelerated throughout the night. I went into the master bathroom to rinse off my face, and the carpet was sloshy wet. I awoke my husband. He went to get the utility vacuum to suck the water out of the carpet. As he continually cleaned up the water, and dumped the residue into the tub, we began to realize that the water was entering the house. My five children were sleeping, and I rushed to wake them up. Everyone jumped into action, picking things up off the floor, and trying to move furniture away from the approaching water. We didn't know it then, but it was all to no avail. We spent hours going from room to room, lifting furniture and putting it on bricks, that were just outside the back door. We had planned to build a BBQ pit with them. When the carpet started to lift up and wave in the flow of the water, I think that is when we realized that we needed to try to leave the house. By then it was morning. My Mother had just moved to stay with us for the summer, to take care of my children, while I planned to attend college. My daughter Christina had just had surgery on her foot, and was sporting a cast. As the water surrounded our house, I could see a strong current rushing past the side of the house. At this point, I had all of my children, and my poor Mom, sitting on the island counter in the kitchen. I told my husband it was time to go for help. He left with my son, while we worried. I was very concerned about the current, and the Water Moccasins in the water. Well, he returned with some neighbors and a boat, and we were all taken to safety. Our family of 7 lived outside of our home for almost 9 months while I dealt with the contractor and his workers. We all experienced our own losses. We had just adopted my cousins' three children, because she had been killed in a car accident and her husband had died of cancer. Unfortunately, photos from their childhood and their Mom had gotten wet. We worked furiously to take apart and lay out all the photos in the sun to dry. I didn't realize that my great-grandmothers trunk had gotten wet. All of my "treasures" since Camille were inside - memories from Jr. high/high school and college - sopping wet. If it had not been for two very dear friends pulling out every piece of paper, photo and trinkets to lie in the sun, I would have forgotten, and they would have been lost to me too. You see I was in charge of orchestrating the process of removal of furniture, and pulling up carpet, and getting the big things done. Our house was a 4,000 square foot ranch, so "everything" we owned had been compromised. Eventually we all moved back in, and life resumed its hectic flow - we were changed - yet we were the same.
In February of 2005, we had moved back to Lakeview in New Orleans, where we had first started out as a married couple. All of our children were either graduated from college or in college. We began caring for my Mother-in-law who has Alzheimer's and she came to live with us. I was in charge of getting the house in Slidell ready for sale. We had emptied it out of most of our personal effects, and I was doing some upgrades to help the house sell quicker. Little did we know that on September 29, 2005 the levees would fail to hold and we would lose everything. I think you all know that story, so I won't go into it. Ten feet of water stayed in our home for three weeks. A month after Katrina we were able to return to our home. The funny thing is, no matter what you've experienced before, how could you ever think you'd be prepared for something so catastrophic. I had learned that my Father had safely landed on the beach in Biloxi, on his 48 foot boat that he had rode out the Hurricane in, via CNN, and that my 82 year old Aunt, and 84 year old Uncle, had been rescued through their roof. My Mother, my Father, many family members and friends, from the Gulf Coast to New Orleans, had lost everything, but were all safe and alive. We rented a U-haul and tried to save what we could. I had been in California getting my daughter settled for college, and buying her new clothes, while we were unable to get back into New Orleans. My husband was able to get back to our house in Slidell, that only had roof damage - thus we had a place to live. I asked him to get the pool cleaned so that we could use it to "disinfect" the things we were trying to save. I had him purchase plastic laundry baskets, so that we could put our items inside, and lower them down into the pool. The items were scrubbed in the pool, and then came to the back door where I took them inside, to again clean them in the kitchen sink. That lasted for almost five solid months, all day long, day after day.
No doubt, when I had my surgery when I was 22, my Mother's example had been an inspiration to me, and the spirit of survival. It also helped me to endure three more natural disasters (we were flooded one more time, but not as bad, before we finally sold that house). I think that we can all relate to the feelings that pass through us, at a time of challenge. We learn a lot about ourselves, and who we are. Sometimes we are impressed with ourselves, and other times we are disappointed. Sometimes we are just tired, and cannot meet a challenge head on. If we are honest with ourselves and can examine our actions, we can all become better people. No one is perfect. Not everyone can "always" rise to the occasion of tragedy, or unique challenges. The thing is, as long as we all continue to "hang in there" and do the best that we can, and not ever give up, we can forgive ourselves for those times that we don't meet the challenges like we "think" we should. In the mean time, that is what family and friends are for - to lean on. Even the strongest of us, need to sometimes step back and regroup, and allow others to care for us. This is something that I am still learning today. It is hard to be stripped naked of your self-truths, but even the most courageous of us, must face it at times. The thing is, it is in this most vulnerable time, that we truly find ourselves, and discover who we really want to be. Being humbled can be a life changing experience.
A year later, I look back at all of my challenges - not just the challenge of Katrina, and can really see myself as a survivor. I now know that I have that "hang in there quotient." Even though at times I may have made poor decisions, I have truly learned from them, and I guess that is what the journey of life is all about. Hang in there; the best is yet to come!!!
Above courtesy of Mike Reed
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