June 2009

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders More Alike Than We Think News & Events
VoicePoints Jeff Searl, PhD CCC-SLP What The Hell Is Wrong Education-Med
WebWhispers Columnist Mike Burton From Me To You-Part 6 Experience
Vicki's Midnight Train Vicki Eorio Another Lesson Learned Experience
Between Friends Donna McGary A Long Strange Road Commentary
Practically Speaking Elizabeth Finchem Sleepwalking Thru Life Education
My Neck Of The Woods Nell Davis Communication Experience
Travel With Larys Jack Henslee Voices Restored – Peru Travel
New Members Listing Welcome News & Events

 

 

 

 

More Alike Than We Think

 


In reading my morning Birmingham News, I noted a long article about a new local support group, led by a speech therapist, and it included interviews with some of the members. At a glance, I saw these interesting comments, so I settled in to read carefully what was being said. The writer starts, "For them, seemingly simple actions that others take for granted - picking up the phone, dashing to the drive-through, interviewing for a job or just introducing yourself to someone new - can be fraught with the potential for embarrassment or hurt."

The members tell experiences:

One moving into a new apartment told of the difficulties of getting utilities hooked up. "You have to call people and you have to give account numbers.... It is hell."

Personal relations can be strained because it's difficult for people to know when to help and when to let you do things on your own. "You always feel inadequate."

A man tells that dating is rough. He met his wife on the Internet. He says, "I can do everything except to speak."

One has never gotten a job after an interview but used temporary agencies to show that he can do the job.

The speech therapist explains that people have often handed them paper and pen for them to "write it down" or avoided looking at them when they are trying to speak.

People sometimes think they are not smart.

We have seen these same kind of comments over and over in our local groups or our WebWhispers list and have discussed, sometimes almost argued over, what we can do. The only answer that everyone could agree on is education. We can educate more people to our situation and maybe they would understand. But, can we? Can we educate everyone to know what to do and how to treat us?

Does that stop the telephone from being slammed down because we sound different to a stranger or the giggles from the yet uneducated. No. And we can't educate the whole world and expect them to be on the lookout for our particular problem, which they may come across only a few times in a lifetime. This says it all: it is OUR PARTICULAR PROBLEM and we are the ones who must deal with it. It is part of our situation to have to educate our families, friends, coworkers and perhaps people in the stores we frequent. It helps if we can avoid the slights and find ways around the hurt caused by unthinking strangers in the way they treat us. We must let some of it roll off and, above all, we must never lose our sense of humor.

This new local support group is much needed. It has now associated with a National group. Good for them. The members will be helped by belonging, relating, sharing experiences and learning.

No, they are not laryngectomees, as we are. Every comment above was made by a person who stutters.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

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

 

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

 


What The Hell Is Wrong?

Jeff Searl, Ph.D. CCC-SLP
University of Kansas Medical Center
jsearl@kumc.edu

 

Opening Comments from the Author:

Below are a few thoughts on what is often termed "reflective practice." Although I provide citations when possible, much of what I offer is derived from my observations of myself and other SLPs (including students in training). I want to offer two comments up front, the first being to my SLP colleagues. I have no intention of "preaching" and don't want to run the risk of being misinterpreted as criticizing others by addressing this issue. I lump myself very much in the category of one who needs frequent reminders when I am stumped to not only look at the patient but also to assess my own thinking and behaviors.

My second comment is to disclose my ties to the International Association of Laryngectomees (IAL) as the Director of the IAL Voice Institute (VI). I do so because in the article I make reference to attending the IAL VI as one way of improving clinical skills. Clearly I have some bias in thinking that the VI is a good thing.

 


Speech pathologists (SLPs) spend time and mental energy blaming our patients when those patients are unable to talk or to improve their speech. By "blame," I mean that SLPs look for reasons why that patient's communication is what it is or why progress in therapy has stalled. Most often we do what we are trained to do - assess, observe, poke-prod, measure various aspects of the person we are seeing. The focus on the patient as the source of the problem is a reasonable one. The treating SLP must know the specific characteristics of the patient and their situation in order to develop hypotheses about what might (or might not) be happening related to their speech or swallowing. Physiological characteristics and limitations, motivation, cognitive abilities, co-morbid conditions, past, current and planned medical treatments and many other patient-centered pieces of information are all essential considerations for the SLP. Ultimately, our discussions with referral doctors, colleagues and written notes are laden with comments such as: "The patient's voice was...," "The status of the patient's pharyngoesophageal segment was such that ...," "The patient was not compliant with...," "The patient's depression was ...," and so on. Any of these might be absolutely appropriate, might be the most important reason explaining the current situation or, at least, might be part of the overall picture that needs to be considered by the SLP.

The laryngectomee patient brings a lot to the situation that dictates the ease or difficulty in diagnosis and treatment, course of evaluations and therapeutic interventions, and eventual clinical outcomes. It seems obvious to say that clinical outcomes are also contingent on the SLP. However, my best guess is that we SLPs (including me) spend considerably less time assessing our own characteristics, abilities, tendencies, assumptions, cognitive abilities and styles that might influence clinical outcomes than we do thinking about the various laryngectomee patient-related reasons for our problem. The intent here is not to berate my own profession and I consider this writing to be a reminder to myself and an invitation to others to critically assess what we are doing; a reminder to focus some time and thought on how we help or hinder clinical outcomes as a function of characteristics or behaviors inherent to us as clinicians. A patient-centered focus seems to be amplified in challenging clinical situations in which speech or swallowing are not improving, or perhaps not happening at all. Speech pathologists are not unlike much of the healthcare profession in that it is easier for clinicians to identify sources of problems in patient outcome as deriving almost exclusively from the patient him/herself rather than finding flaws with our own clinical skills and decision making (research in nursing and medicine generally confirm this).

The field of medicine, as well as other healthcare professions, has seen a stronger emphasis in the past two decades on what is often referred to as "reflective practice." A number of individuals are credited with coining this term, but Dewey (1933) is most often cited; more recently Mamede and colleagues have written extensively on the topic (see references). Definitions vary, but in general the term means the activity of thinking critically and analyzing one's own professional activities, behaviors, reasoning and decision making. Although not always stated, the implication is that such "reflection" will improve the healthcare provider's clinical performance, and ultimately improve clinical outcomes for patients. Although empirical evidence is just now beginning to accumulate regarding this implication, it seems to be the case that reflective practice:

  • can facilitate the generation of accurate hypotheses in medical differential diagnostic situations (Mamede et al, 2008);
  • is an important factor in acquiring and maintaining expertise in professional practice (Ericsson, 2004); and
  • can help minimize clinical mistakes (Croskerry, 2003; Graber et al, 2002).

 

I teach in a SLP graduate training program and as a faculty we emphasize the need and ask our students to actively engage in reflective practice. We are not alone in this emphasis in graduate training programs, but data driven conclusions, about the impact of reflective practice in the SLP field, are not available in the peer-reviewed literature. However, such data seem likely to be there in the very near future (see Geller and Foley, 2009).

I am not a "touchy-feely" guy and I personally don't like the term "reflective practice" because for me it connotes passivity on the part of the clinician. Mamede and Schmidt (2004) talk about "deliberate practice" as a primary means of acquiring professional expertise. Choose what you want for a term, but I like "deliberate" because it implies that this is an effortful activity in which the clinician engages. It takes time and mental energy; it occurs partially during actual clinical encounters but also entails additional learning, self-observing, self-assessment and professional planning, based largely on past experience but also on observing others. Much of the work of deliberate practice takes place outside of clinic time.

Various authors have tried to spell out how clinicians (doctors, nurses, etc.) can become deliberate practitioners. I think in the past, folks talked about "master clinicians" and the characteristics those described as such (Kelly [2003] provides an excellent reflection specific to SLPs). This type of deliberate self-evaluation seems to fit nicely as one small part of what it takes to rise to the level of what others decide is a true master. Here is a list of concepts proposed as central to deliberate practice (Ericsson and Charness, 1994):

  • The ability and willingness to engage in inductive reasoning when faced with a clinical problem. The idea is that we as clinicians will use the information available to us in a clinical situation to generate a set of reasonable hypotheses.
  • The ability and willingness to engage in deductive reasoning. That is, use of logical deduction of what each hypothesis would entail in terms of supporting signs and symptoms, as well as the means of gathering more information.
  • The ability to actually test the hypotheses. This means that the clinician cannot fake the actual clinical encounter. They have to have the knowledge and the skill to evaluate the patient, manipulate behaviors (the patients and their own), and work logically from one set of outcomes to the next. A knowledge of underlying anatomy, normal speech production, impacts of various surgeries and oncologic treatments are essential in alaryngeal speech rehab along with the ability to execute a diagnostic or therapeutic session that provides valid data.
  • An attitude that encourages self-reflection. Kelly (2004) and others note that master clinicians understand their own weaknesses and are not afraid to address those. There might be a lot of psycho-babble that can be cited about what self-reflection entails. At the heart of it, for me at least, is acknowledgment that there are clinical weaknesses. This fourth concept is truly intended to imply that some clinicians have, and others don't, a mindset and a sufficiently small ego to allow critical evaluation.
  • The ability to "think about one's own thinking processes and to critically review one's own assumptions or beliefs regarding a problem" (Mamede & Schmidt, 2004, p.1304). This is often termed "metacognitive skill." The fifth step goes beyond the attitude that allows one to self-reflect (item four in this list), and talks about the ability to actually engage in the self-evaluation. If you don't have number 4, there is no number five that even enters your mind.

 

This is where my ramblings begin to run into a bit of a dead-end. We have limited information about the best way to help clinicians (I am talking about any healthcare worker) get better at being a deliberate practitioner. Some seem to be naturals at it. Others fall anywhere along a continuum from having very poor insight into how they practice to others who over analyze to the point of 'paralysis by self-analysis'.

More and more clinical experience, on its own, is not enough to develop into a deliberate practitioner. In fact, there is an interesting paradox that shows up in the medical training literature that is pertinent here. Several studies have reported that reflective practice actually decreases with more years of clinical experience. We might have expected that as we do this more we become smarter and better able to practice in a given area with ever improving patient outcomes. The physician training literature suggests that clinicians might simply become more set in our ways.

There are a couple of viewpoints. As clinicians see more and more patients over the years, there are patterns of symptom presentation and patient categories that one develops. This is not necessarily bad; in fact, it likely promotes efficiency in routine clinical situations. Rather than an item-by-item analytic approach, physicians and others may engage in more of a gestalt process of pattern recognition in clinical encounters. In fact, the empirical studies, of medical decision making, suggest that this does occur and the non-reflective practitioner can have similar patient outcomes to the reflective one for routine, non-complex cases. Clinical outcomes in more complex, problematic situations tend to be better for those who demonstrate deliberate practice compared to those who do not. As a general rule, more experienced physicians (and I am suggesting this might be true for some SLPs) have been shown to prematurely close a clinical case without considering a complete set of alternative hypotheses(Eva, 2002), deny that they do not know something (Heath, 1998), report discomfort with being evaluated as a clinician by others, and report higher levels of certainty and satisfaction with their own level of performance even if this might not be justified. The best SLPs that I have seen working in the area of laryngectomy care present just the opposite - a willingness to never be satisfied with what they know, exhaustive consideration of alternative explanations and careful thinking to rule each one in or out for a given patient, encouragement for peers to evaluate what they are doing and toleration of the discomfort that is inherent in dealing with difficult situations.

Unless an inexperienced clinician is simply too dense to recognize that they don't know it all, or too cocky to care, they are, almost by necessity, forced to think back on their own performance during the start of their professional career. Our graduate students in training surely get tired of supervisors observing and evaluating them, but as supervisors we see it as a major plus when a student is able to not only take our criticism and feedback, but can also show us self-analytic abilities.

At this point, I make a request to SLPs working in this area do a little reading regarding reflective or deliberate practice (my citation list is one place to start). I will make a specific call to those who have been doing laryngectomee care for quite some time - I put myself in this boat having done this for the past 17 years. I always remember folks like Ed Stone, Jim Shanks and Dan Kelly (part of the master clinician crowd in my books) saying out loud to folks that they learned something every single year going to the IAL Voice Institute despite their years of experience and the many CE events they had attended. I think they would say that about any of the laryngectomy related conferences that are out there - there are always ways to improve your knowledge, skills and abilities. I've certainly found it to be true that I learn a lot every year at the VI conference and I hear many of the other experienced VI faculty saying the same thing. After reading the work detailing how, with clinical experience, reflective practice tends to decline, I am even more inclined to push us all to make overt attempts to re-evaluate how we provide care in this area.

It would not be appropriate for us as SLPs to include the following types of notes in our clinical charts: "I lacked the knowledge I needed today to help my patient," "I was working too quickly without considering...," "I was not thinking logically ... I made some poor assumptions in Mr. Smith's case that caused ...," "My attitude didn't help motivate the patient today," or "My patients weren't my highest priority today, I was distracted by...." "I had some preconceived notions about what this gentleman could do and unfortunately it caused me to overlook some potentially helpful therapeutic strategies."

While I don't expect or want those to show up in my own clinical notes or those of my students, these are the comments and thoughts that need to show up in my head or on the feedback sheet I give to my students. Attending continuing education opportunities, specific to laryngectomee care, is one means of gauging (or re-gauging for those who have done it for a while) how you are doing. The VI is one such option that I particularly like because there are experienced clinicians around who can work with you and others in small group, supervised clinical situations with individuals who have had a laryngectomy. Other conferences led by Dr. Blom, training conferences sponsored by Atos, and other regional or state conferences also typically offer such clinical encounters. The beauty of these meetings is that not only is the fact-based knowledge being presented, but the opportunity to observe other experienced clinicians at work is quite valuable. Having them looking over your shoulder at what you do can facilitate your self-evaluation skills along with your actual clinical skills.

Besides seeking out CEU events, what is clear in reading the reflective/deliberate practice literature as it pertains to nurses and physicians is that deliberate practice requires setting aside time to actually think about what we are doing, how we are approaching situations, how we are thinking through problems. Unfortunately, insurance companies do not pay for our time to sit around and think. So, this requires a professional commitment to make the time. I tell (threaten?) my students in the classes I teach that they should expect an email from me in about two years asking them: "What's your diagnostic model for voice disorders?" - and I don't mean what are the test or scales that are used. I mean, how do think your way through information that gets you to an accurate diagnosis and appropriate treatment plan.

I also tell them that after they have spent some period of time in clinical practice (maybe 6 months, then a year, another year later and, after that, forever more), they need to set aside a chunk of time and maybe a bottle of wine, and write out their thinking - on paper - how do I make decisions clinically for such-and-such, what do I do well, what makes me uncomfortable, should I feel as comfortable as I often do when working in this area, etc.

I am not as good as I need to be at asking myself these questions on a regular basis, but reviewing literature in this area has invigorated me to do so. As a final thought about becoming a more deliberate practitioner - consider taking on a SLP student in the area of laryngectomee care if you have the knowledge, skills and supervisory skills to do so. The medical training literature is pretty clear that when an experienced clinician is forced to teach in their area of expertise, most reflect in detail on how they practice in that area in order to figure out how to pass along knowledge to another.

Croskerry, P. (2003a). Cognitive forcing strategies in clinical decision making. Annals of Emergency Medicine, 41, 110-120.
Croskerry, P. (2003b). The importance of cognitive errors in diagnosis and strategies to minise them. Academic Medicine, 65, 611-621.
Dewey, J. (1933). How we think: A restatement of the relation of reflective thinking to the education process. Heath: Boston.
Ericsson, KA. (2004). Deliberate practice and the acquisition and maintenance of expert performance in medicine and related domains. Academic Medicine, 70 (Suppl 10), 70-81.
Ericsson, KA & Charness, N. (1994). Expert performance: Its structure and acquisition. American Psychologist, 49, 725-746.
Eva, KW. (2002). The aging physician: Changes in cognitive processing and their impact on medical practice. Academic Medicine, 77 (S1), 1-6.
Geller, E. & Foley, G. (2009). Expanding the "Ports of Entry" for speech-language pathologists: A relational and reflective model for clinical practice. American Journal of Speech-Language Pathology, 18, 4-21.
Graber, M., Gordon, R. & Franklin, N. (2002). Reducing diagnostic errors in medicine: What's the goal? Academic Medicine, 77, 981-992.
Heath, H. (1998). Reflection and patterns of knowing in nursing. Journal of Advanced Nursing, 27, 1954-1959.
Kelly, DH. (2003). Some thoughts on what is a "master clinician." Current Opinions in Otolaryngology: Head & Neck Surgery, 11, 143.
Kuiper R & Pesut, D. (2004). Promoting cognitive and metacognitive reflective reasoning skills in nursing practice: Self-regulated learning theory. Journal of Advanced Nursing, 45, 381-391.
Mamede, S. & Schmidt, H. (2004). The structure of reflective practice in medicine. Medical Education, 38, 1302-1308.
Mamede, S. & Schmidt, H. (2005). Correlates of reflective practice in medicine. Advances in Health Sciences Education, 10, 327-337.
Mamede, S., Schmidt, H. & Penafore, J. (2008). Effects of reflective practice on the accuracy of medical diagnoses. Medical Education, 42, 468-475.
Schon, DA. (1983). Reflective practitioner: How professionals think in action. New York: Basic Books.

Editor's note: Information may be found concerning the current year IAL Annual Meeting/Voice Institute on the IAL website at http://www.theial.com/ial/


 

 


 

FROM ME TO YOU (Part 6)

by Mike Burton,
Middle England, UK

 

With thanks to the Beatles for the main title, the paragraph titles and lyrics. The names have been changed to protect the innocent and in some cases save their jobs. This story is dedicated to my wife and children for the support they gave me before, during and after my ordeal.
 
In my life
(There are places I’ll remember all my life…… thought some have changed)

 

A letter arrived from the hospital explaining that my surgeon wanted to see me again. Susie and I both attended the meeting, where there were a number people present. My surgeon introduced us to them; there was the head of Radiotherapy, the McMillan representative, the head of Max-Fax and a couple of nurses. Then the news was broken- it was Cancer. Susie shed tears. I sat there stunned, but in a strange way not surprised, my tears were to come later. They went through what was going to happen to me. In hindsight, the surgeon could not have been more out of touch with reality; everybody else’s input proved to be correct. We left his office, with not much being said between us, but had to put a brave face on for the kids. From that moment on, knowing that it was Cancer, my relationship with Susie diminished rapidly.

Arrangements were made for the day of my operation. I had to turn up the afternoon before to insure that I was nil by mouth. I was also booked into theatre for 8am. During the operation somehow they managed to lose my wedding ring even though this was taped to my finger prior to the surgery. Thank god they managed to find it! That would have been a disaster! Susie would have probably gone mental. I would have waved my pad in anger!

I remembered nothing about the operation after I was taken to the theatre, and they put my lights out. I remember virtually nothing about ICU or HDU. Coming around now and then, there was a strange sound I could hear, like a bus conductor ringing the bell off and on all the time - bloody annoying! I was having various dreams and hallucinations. I seemed to remember a person having his or her head worked on with blood going everywhere. What I can say for sure was that I was not on this planet.

After returning from my stays in ICU and HDU and back on the general ward there was one occasion when I went into stress mode and pressed the panic button frantically. No response from the nurses who carried on with their work. I was still wired up to bits of kit and could not move from my bed. Fortunately this was during one of Susie’s visits and she went to get a nurse. Upon her arrival it transpired that it was not plugged in anyway, which she immediately corrected and apologised. Susie was not the least a bit impressed at all and went to demonstrate her anger on some poor thing in a striped outfit. What was the point of an unplugged panic button?

Afterwards, when I wanted to get a nurse’s attention on the ward I would write my request and wave my arm or pad. Mostly this was ignored. The panic button had been turned off yet again, don’t ask me why and by whom; you can’t believe how frustrating this was as I tried to get their attention. I began to give up. However, day by day bits and pieces were being removed, after the morning rounds by the doctors were done. Machines, staples, stitches and various other bits being removed including a tube inserted into my back , which up until now I had no idea of its existence, but by then at the same time the morphine was taken, sigh…………….

Getting sleep on a plastic covered mattress was always difficult; mostly I just dozed both night and day. One time, about 1 in the morning, a chap who had been recently brought onto the ward flat lined. I was listening to the radio and didn’t realise what was going on because of my headphones. The ward lights partially came on, which was unusual, and there was a lot of movement. I removed my headphones out of curiosity. My curtains were not fully closed and I sat bolt upright watching almost a scene out of a TV hospital drama. They had the full business out, a machine with the pads etc. “Stand clear” the doctor on call would shout, and the nurses did as they were told and I watched this chap’s body twitch after receiving a dose, with the doctor shouting at the patient at the end of each, “Can you hear me, Fred?” I didn’t know his name prior to this. There were conversations going on between the “on call” doctor and the nurses but the doctor after making repeated applications obviously had made a decision. Fred’s machine beside him was still making the same noise, and eventually, he and his bed were wheeled out of the ward. I finally got some sleep after listening to the radio for a bit longer until tiredness got the better of me.

I wrote on my pad the next day after ward rounds “Is he still alive?” pointing to the replaced empty bed where a vacant space stood last night and showed it to the Reverend, who was in the bed opposite me. “Yes, I understand he is, but he is in ICU”, he said. I will mention more about the Reverend later. Never found out about Fred but he never came back onto the ward during my stay. Hope he made it though.

The wounds from the surgery around the left neck and shoulder still refused to heal. I had lost count of the amount of pricks, and I do mean needles, not the people deeming them to be necessary in case I was a diabetic. Every time they did a test I would write and tell them I wasn’t, but their readings were showing differently. This went on for some time before it occurred to them it could be due to the diet that I was being given via my “peg”. This was a tube that had a universal valve on the end, which had been inserted into my stomach sometime earlier, so that I could receive nourishment and drugs, post operation.

Having established that my wound was not healing properly, the Gerbil (AKA my doctor) decided a course of hyperbaric treatment was required. The only problem was that I would have to be transferred to another hospital, as this one did not have the equipment to do it. Arrangements were made accordingly. Nobody really explained what this entailed exactly, except that it aided the healing process. Typical!

The day had finally arrived to be transferred; the crew was given a bag of stuff to take with me as I sat in my wheelchair. Upon our arrival, I was surprised how modern the other hospital was. I was taken to the ward 12 reception desk where the ambulance crew announced that Mr Burton had arrived. Behind the desk sat Jenny, who stood up and smiled in welcome. She was, I think, in her mid thirties, she was about 5ft 2ins in height with short neat dark hair; she was slim, with stunning looks, and breasts you could die for. I guessed about a ‘DD or maybe E’ cup comparing them to Susie’s. I had always preferred women with large breasts. God, she was something to die for!

Jenny led the way and the crew followed. The journey was very short, no more than twenty feet where upon arrival I was gobsmacked, as to my surprise I had my very own room! This was much more like it I thought to myself. Jenny proceeded to get me settled in and told me that my first session of hyperbaric would be at 1pm. That was only an hour away. Many hours during my stay were spent with me thinking of what I would like to do to Jenny, not that in my state she would come anywhere near me. I doubt she even fancied me anyway. I had and have never been unfaithful to Susie - funny what drugs can do to your head.

Sure enough, just before 12.45 a middle aged man came into the room with a nurse. He was both a well dressed and spoken man about the same height as my surgeon but without the gut.

“Mr Burton” he said, offering out his right hand for me to shake, “So you’ve been sent here for us to sort you out. My name is Doctor Read, you can call me David, everybody else does around here, probably a lot more that I don’t know about as well, and this is Mary,” he said pointing to the nurse standing just inside the door frame to my room, who had her hand half covering her mouth trying to hide the snigger at David’s last comment. I was only to see David on a few occasions during my stay at the hospital but he had a pleasant bedside manner and general good demeanour. I was always pleased to see him, which is more that could be said of my surgeon who could have done with a few lessons in patient therapy and bed side manner.

“Would you object if I called you Mike?” I immediately gave him the thumbs up. “Did anybody explain to you about what we do here?” I shook my head from side to side. I sat and listened intently to what David had to say. “Well the earth's atmosphere normally exerts 14.7 pounds of pressure per every square inch of your body. During treatment, the pressure is increased by up to two atmospheres so that your entire body is totally immersed in 100 percent oxygen. This increases the oxygen dissolved in your body tissues and fluids to a much higher concentration than if you were to breathe the same amount under normal conditions. The treatment itself is relatively painless. It’s usually used for people who suffer from the bends after surfacing from deep water too quickly. Once you are in the cylinder and the door is closed, the oxygen begins to circulate and we start a gradual increase in pressure which is called flushing and compression and generally takes around 20 minutes. When the interior of the cylinder reaches the required pressure, the sensation in your ears will cease. Near to the end of the treatment, the pressure will gradually be decreased; this is called the decompression phase, and generally also lasts again up to 20 minutes. During decompression, you may again have a slight popping sensation in your ears as the pressure decreases. As the cylinder is made of perspex full vision is maintained of you at all times, as well as a panic button should you require it. We also provide a TV for you to watch whilst you are having your treatment so you don’t get bored. The best news of all is that I will be giving you your first course of treatment, can’t say fairer than that now can we?”

At which point Mary did give out a burst of laughter that was very audible. “The treatment usually lasts around one hour but seeing as I am doing it who knows how long it will take?

Again Mary laughed and I gave him a toothless smile from my disfigured face. Normally that type of comment would have scared the shit out of me but in some strange way I felt good.

“Let’s take Mike round to the unit then, Mary, shall we? Oh by the way, I think it’s only fair that I tell you that there can be a slight side effect with this treatment on your eyesight. It will not be that noticeable at first but may be so as we get further into your course of treatment. If this does occur it is not permanent, your eyesight will return to normal but you should wait at least ten weeks after treatment before thinking about ordering new glasses and just cope for the time being”.

Mary then went outside the room and returned with a wheelchair. “Don’t think that you are going to get this first class treatment every time”, she said “check your bearings on the way. I will send someone to fetch you tomorrow and after that you will be coming to us at 8.30 sharp every morning Monday to Friday, young man!” Nice comment, I thought, as I guessed she was at least 15 years younger than me, maybe more.

It was not far from my room to the hyperbaric unit where upon arrival Mary told me to put my pad, pen, glasses on a metal trolley. I was shown into a cubicle and told to strip naked and put on the ill-fitting gown that had been placed in there for me. On this, and only one occasion without realising it, I had put my gown the wrong way around, so walking out with gown flowing all my bits were in full view, not that they were much to look at. Mary laughed and pointed at my mishap which made it shrink even further. Embarrassed, I went back to the cubicle and changed the gown around. God knows why I did this as she had now seen everything I had downstairs, so to speak, and no reasonable chest to look at.

I still found doing the gown up back to front difficult up until to the day that I left them. Susie could put her bra on with her eyes closed; I was in no man’s land, never been there before and never quite mastered the trick of doing things up back to front.

Walking out of the cubicle again this time with gown donned nearly properly, I saw two cylinders before me. I was led to the one on the left hand side of the room. Mary told me to remove my slippers, and invited me to lie on the trolley located outside but an integral part of the kit. After Mary had made sure I was comfortable I was pushed into the cylinder and the “panic button” was then handed to me. This was followed by a dull thud as the door closed behind; it sounded like the hatch closing in a submarine. I looked around the room from within the cylinder. In front of me high up on the wall to my left was the promised TV, which was switched off, and to my right (centrally placed in the unit) was a clock and below it a desk with a PC mounted. Further right was the other cylinder which also had its own TV high up on the wall, similar to mine but this was also turned off, probably as I was fitted in at an awkward time as the department should have been shut for lunch. David took his place beside the cylinder and said he would talk me through the stages. The machine started and I was told that flushing and compression was taking place. This was soon followed by a whooshing sound, and I could feel some pressure building in my ears. Then I reached a restful, calm period, and for a while I wanted to drift off to sleep, but as this was all new to me I resisted the temptation. David who had been talking to me off and on throughout the session pointed out it was time to decompress. The strange whooshing sound started up again but the pressure on my ears was far greater, almost like landing in an aeroplane multiplied two or three times. Then it all went quiet. The door of the cylinder was opened, the “panic button” taken from my hand and I was withdrawn, being told at the same time by Mary to lay there for a minute or so before attempting to get up. I did as I was told and Mary went to get a small step on which she placed my slippers. When told to, I sat up and swung around and put my slippers, noticing David sat at the desk located between the two cylinders making notes in a file.

“Ok that‘s your first session over. You can go and get dressed now.” I went back to the cubicle and removed the gown and replaced it with my clothes. I came out and went to retrieve my pad, pen and glasses from the trolley.

“Where’s your gown?” said Mary. I pointed to the cubicle. “Oh no you don’t, young man, it goes in there,” pointing to a metal framed canvass bin, “We don’t clear up after you around here you know!” Now firmly put in my place I retrieved the gown and did as I was told. Again, I never made that mistake again.

I was returned to my room by Mary, this time on foot. As we entered my room there was another nurse who Mary introduced as Julie. “Hello Mike, I will be attending to that wound each day after hyperbaric have finished with you”. Mary left the room.

Julie was a lovely lady. I imagined that in her heyday she would have given Jenny a run for her money, looks, build etc. I bet she was a belter in her younger years, don’t ask me why, it was just a gut feeling, just without the breasts.

Julie worked unusual hours, compared to the other nurses who seemed to work some sort of shift system that I never seemed to, being drugged up to the eyeballs, fully understand. Julie worked 8am until 4pm Monday to Friday, and took an hour for her lunch, almost like an office worker. I now realise that probably she had forgotten more than most of the temporary or fully employed nurses knew. The contents of the bag I was given when I left the other hospital were emptied on to the bed. This contained medicines and dressings and diet instructions that they had been using to date.

“How often do they dress your wound, Mike?” I answered with a reverse ‘V’ sign to save the trouble of writing. “OK, let’s have a look at what we have then.”

Julie, after reading the notes, left the room for a short while and returned with a trolley, scrubbed her hands and removed the existing dressing from my wound and discarded it into the bin located beside the sink. She then proceeded to open the first package which contained a bag for rubbish, a paper type cloth for the trolley and a pair of gloves for her to wear. She then re-scrubbed her hands dried them and put on the gloves supplied. Looking closer at the wound which had been packed with Sorbsan, a material to fill the wound, she removed it with a pair of tweezers that she had brought in and then discarded the material in the bag that had come with the pack she had recently opened. She then emptied a couple of thin tubes containing saline into the dish and gently cleansed the area.

I wrote, “How big is the wound?” on my pad. Julie shrugged but realised that the pack of Sorbsan provided a measure printed on the lid. After opening it, she used the part of the lid to take a measurement. As I was interested in this I pulled back my pad and pen and wrote “Let me know what they are, please”. Julie said nothing but placed my head so that I was facing forward and straight. She proceeded to take measurements. “Well, it’s nearly 7cms long and it’s over 1cm wide but I can’t really tell the depth because that’s not consistent.” I wrote this down as I did every day (except weekends) so that I had a full record if I was improving or not. Julie continued to dress my wound until she was happy with the finished product. “See you later or if I am busy today I will be in to see you tomorrow”, she said leaving the room.

I still have that pad with the list of measurements in a drawer to this day God bless her.

I took this opportunity to get a credit for the TV/radio and also get some headphones from Jenny and, over the length of my stay there, I would take every opportunity available when she was on shift to find a reason to see her looks and breasts. Not that I could do anything, nor that should would me want me to; it’s a man thing I suppose. Nothing was happening downstairs.

After Julie had finished, another visitor arrived. “Hi, my name’s Helen, Mr Burton, or can I call you Mike?” at which point I again gave the thumbs up. “I’m your dietician.” Helen was tall woman, slight in build and with blondish hair. Although not as stunning as Jenny she was still attractive. “Now let me see, what have they been giving you so far?” She started to read the notes she had been given in the pack I had brought. “Well! That’s not good enough at all, is it!” I did not have a clue what she was talking about. “Only one bag of normal feed per day with the pump set to 100. That’s hardly going to help you heal. Right! As from tomorrow you are on hi-energy bags at 125 on the pump and let’s see if we can get you up to 200. Also, I am recommending a collagen supplement to help build you up. I will tell the nurses what I want and will drop in on you now and again to monitor your progress. Have you any questions for me?” I shook my head. “Fine, between the hyperbaric unit and me we will have you as fit as a fiddle in no time” she said, disappearing out of the door.

Every weekday was more or less the same old routine. Woken at 6.30am (even if I had a crap night which was usually the case) for early morning drugs, then I would lie in bed until 8.10 listening to the radio. I would then get up and have a quick wash, then get to the hyperbaric unit at 8.30 for treatment. After that, it was the same old routine every day but in no particular order-

Julie to measure/dress wound.
Go to the hospital shop and get daily paper.
Top up TV and radio credit if necessary.
Write letters.
Afternoon drugs for those required 3 times a day.
Have evening drugs.
Watch TV or listen to more radio.
Maybe the odd snooze

There were obviously visits from the nurses, the dietician and doctors to check on my progress etc.

Every day was the same except Friday. That was the day that the UK NHS cut-backs really kicked in. They would close Ward 12 and merge it with Ward 11 for the weekend. So from around 5pm to about 7pm Friday evening all of the contents and patients were moved and then Ward 12 was plunged into darkness until Monday morning. Some dickhead liked a TV programme called the “X Factor” which boomed out of the room next to me, not that I could say much. What also occurred was that the hospital shop did not stay open. I would, however, manage to find one of the nurses who was working the weekend shift (and that was no easy thing with no voice I can tell you) and arrange for a supply of weekend newspapers that way. Julie only working Monday to Friday, meant that some other poor nurse was called in to do my dressings on Saturday and Sunday. As much as I tried I could not get them to take measurements of my injury. Not that it was important in the great scheme of things, but a minor irritant as far as I was concerned, as was the end result, because the dressing was usually uncomfortable, nothing like Julie’s work, who was a superstar. As I had to write everything down they would usually ignore it. Not because they were being nasty, it was that it was either the X factor programme or one ward’s staff dealing with two ward’s patients.

The hospital was a long way for everyone to get to, so I had very limited visits during my stay. It was over 40 miles away for Susie and she was the closest. Trying to fit visits in with the kids doing their own thing proved difficult. Susie managed a visit on two occasions; Raymond and Jenny, now his wife managed it once. It was memorable as they managed to get me to write out 24 sheets on my notepad. It was then that, using my pad, Raymond told me Jenny was pregnant, and I was going to be a Grandad. He used my pad to do a drawing of a pregnant woman with an arrow pointing to Jenny’s tummy as the baby was called for the time being Bungalina.

I still have that piece of paper. Jack was born in the following June. They threatened to do worse on their next visit which never occurred because of their commitments; my treatment by then had finished. Most communication was by badly written letter, a bit like my story - if you have got this far.

There was an email service provided by the company who offered the TV and radio. All you needed was a second mortgage on your home and you could wish someone Happy Birthday!

When Monday morning finally arrived I would have my early morning drugs, wash and leave for the hyperbaric unit from Ward 11 and return after my treatment to Ward 12. Julie would normally be waiting for me to tend to my dressings but on Mondays the new intakes took priority. It was about lunchtime on Mondays when Julie finally got around to seeing me. I had been there a week now and Julie came up with a brilliant idea. She would still continue to measure the wound physically, but they had a camera in a department down the corridor and suggested to one of the doctors that a picture was taken at regular intervals for their records so that signs of improvement could be seen. The doctor agreed and shortly after and before applying the dressing for the day a picture was taken and printed. They continued to do this and at the end of my stay, they had five in all. The first one scared me to death! I had never seen such a large and gaping wound.

My children visited only once since I looked so bad. They would ask questions at home though, which Susie would have to be diplomatic about with the answers. I saw them only the once during my stay when they were on their way to see Susie’s Mum & Dad in Norfolk for a week. I was nearly at the end of my hyperbaric treatment when I was feeling better, but nothing like my former self. Susie spoke briefly, but in a bitter way. I replied in writing, the kids watched my TV instead!

Then when David and Mary were reasonably happy with my improvement, they contacted the Gerbil, or should I say surgeon to come and see my wound. He said that he would make an appearance either on the following Tuesday or Wednesday to agree that I could go back. He finally turned up on the Wednesday afternoon. Upon entering my room, the Gerbil said, “Nice hospital, I sent you to Mr Burton” (yeah bloody right mate I thought, as if he had done me a favour!). He then leant over, pulled back the dressing on my wound and looked at it. In one pivotal movement replaced it and said, “That’s a bit better,” and left the room. Surgeon’s total time in room, one minute! It beggared belief. No bedside manner at all. Freakin’ gerbils didn’t deserve to be dragged down to that level I thought to myself.

Everything that they had forecast upon my arrival had come to fruition. I had put on weight, felt better generally and was finding climbing up and down stairs a doddle, whereas upon my arrival everything was hard. Going now to get my daily papers now was a piece of cake.

On the day of my departure, whilst waiting for the transport to take me back to the Gerbil and closer to home, I secretly wished that I had received all of my treatment at this hospital. Julie had already told me that my wound had improved by her physical measurements but she also showed me the vast improvement from the pictures they had taken and placed in my file. Already written on my pad was, “I want to give you a hug and kiss in thanks for all you have done”, which I showed to everyone I could. Jenny had told me that she would not be on duty on the day I was due to leave, but I made damn sure I pressed myself up firmly against her to recognise those pert breasts against my chest when I gave her my kiss upon her cheek. I had also given Mary a kiss after my last dose of therapy in the cylinder. I never got a chance to thank David (I wouldn’t have kissed him anyway) or Helen as she was elsewhere. Julie, God Bless, even made sure she was disturbed on her lunch break to give me a kiss before the ambulance crew wheeled me off and wished me good luck.

I had promised them all sometime earlier that when this was all over I would come back and haunt them. I did. I drove the 40 miles each way only to find that they were not on duty. I did establish though that Julie had retired.

To be continued next month...Nowhere Man
 

 

 

 

ANOTHER LESSON LEARNED

Vicki Eorio


Perhaps many of you have already experienced what I am about to write. It made such an impression on me that I wanted to share it. It is called volunteering. Atlanta has a wonderful and very active group of larys who make hospital visits. However I have not been able to participate in that program given the location of my home.

As many of you know, I experienced a stroke two years ago. In fact it was right after the Memorial Day weekend that it happened. Almost two weeks hospitalization and months of therapy followed. There are residual effects but I continue to learn to compensate for the deficits.

Glancy Hospital is the rehabilitation hospital where I received such wonderful care both as an inpatient and outpatient and is just about a mile from our home. It is part of a large hospital system in Georgia. Several times I received notices of support group meetings but did not go. To tell you the truth, I had enough of support groups except for WebWhispers. In addition, I had a spinal fusion following the stroke so if you even mentioned “hospital” or “doctor” to me, I would break out in a cold sweat. But I was foolish, foolish, foolish.

So one day when I was in the middle of a good pity party, I decided to do something to get out of my funk. I called Glancy and asked if I could volunteer. That started the wheels turning. After several weeks they called and told me that classes were starting for what they called “peer visitors”. I thought, why would classes be needed? All we were going to do was visit people and hopefully show them that recovery after a stroke was possible. What was the big deal? Well, I was so very wrong.

Three of us attended four hour classes for four Saturdays before we got our badges and graduated. I learned so much about myself and life and the human spirit. I learned that all my experiences as a lary helped me relate to another group of people with disabilities or deficits or whatever you might want to call the effects of a life altering health experience.

Let me tell you a little about my classmates. Ron is a relatively young man with seven children. "Heck, that alone could cause a stroke," he joked. Ron wears a brace on his left foot and has very little use of his left arm. He was a very talented IT professional but since he suffers from short term memory loss similar to mine, he no longer works full time in that field.

Steve is in his thirties. Handsome young man who shows no outward signs of having a stroke but has some trouble finding the right words. He told a story of returning too early to work as a mortgage broker. He said all the numbers were in his head just as before but he couldn't get them out in a smooth manner. This made him appear as if he didn't know what he was talking about since he hesitated so frequently when talking to people. The frustration of working the numbers with lightening speed and then not being able to communicate effectively made him feel as if he was a failure. With more therapy however he is doing much better.

Mark is physically a big man who has the type of smile that lights up a room when he enters. He seems to love everyone and is quite physical in displaying his affection. He was in the hospital at the same time I was and I remember him very clearly. When he saw me for the first time in two years, he slapped me on the back almost sending me head over heels. With that smile that went from ear to ear, it didn't matter. If I ever need help coughing or expectorating, I will call on him. One or two loving slaps and I would be cured. Mark looks to be in his 40's and is the picture of health and success. However Mark has severe aphasia so while he understands everything said to him, his vocabulary is that of about a two year old. He is excellent with hand gestures and since I frequently rely on them also, we got along well. Nothing, and I mean, nothing dims that smile of his.

So that was our rag-tag group of stroke survivors. Each bringing something unique to the group and eventually to other stroke survivors. Each of us looked at the other person and thought, boy, how could I live like that? What is that story about a group of people each putting all their troubles in the middle of a circle and wishing they did not have them. They seemed so heavy to bear especially when compared to others. But when learning about others who put their troubles in that circle, each person picked up their own bundle, not wishing to trade their bundle for anyone else's. Well, that is how I felt. I sensed my classmates did too.

Our instructors were excellent. They included occupational therapists, speech therapists, case managers and social workers. We learned about the right side of the brain functions vs the left side. Depending on which side we had our brain insult (don't you love that term? Brain insult?), our reactions to everything in our lives were affected. As I went through the classes, I thought about the Whisperers and all we do for each other. I thought about all of our commonalities, not just within the group but with others. Depending on the type of surgery we have had or the speech rehab we have had or the support system we have had, we mirror our brothers and sisters who also have chronic health “challenges” and live with the fear of cancer recurring or a stroke hitting us again. We share visible and invisible scars and deficits. Our worlds have been “insulted” requiring never ending therapy of mind and body. Relationships, family ties, jobs, have been tested. Some have survived, some have not. But somehow we have survived. And where voids were created by disease or cardio-vascular insults, other things have over time rushed in to fill those voids. We have modified our lives, we have adjusted our homes and our hearts to accommodate our “deficits” and our new skills and our new opportunities.

Lately, there have been many postings on Whisperers sharing what we miss now that we are larys. I am sure the same conversations and thoughts go on between stroke survivors or burn survivors or a host of folks with chronic health challenges. Challenges that go to our core and can tear us apart. Or challenges that can be embraced and used to help others. What I discovered was something I didn't know I missed. That was reaching out and sharing, using what the Whisperers have taught me and that it can be used for the good of others.

There are fewer trains going through my little suburban Georgia town but the whistles are loud and long and strong. And reassuring. Just like my new lessons learned.

 

 

 

 

 

Long Strange Road


I recently joined Facebook, somewhat reluctantly since I have grave reservations about the long-term ramifications of this Internet culture, but I have to admit I am a fan. As a matter of fact, I may become a poster child for FB. I have reconnected with old and dear friends I had thought long-lost to the archives of fading memories.


Friends from high school, although personally I think adolescence is a circle in Hell, never visited by Dante. However, I did have some good friends then, who are wonderful people now, and I am very glad, indeed, to get to know them again.


Friends from the cult days (the ten years after high school). That has been both rewarding and disturbing. I have learned that one very dear friend is dead, another reveals abuse that I apparently turned a blind eye to. I am horrified now at our deliberate denial of the truth. Yet, here is a picture, taken last week at my home, of a 30 year reunion with still another old friend, holding my grand-daughter, Kayleigh. I last saw Sia when our own babies were toddlers and we were all in the cult. I love it because this casual snapshot captures beautifully the connections that survive personal change, distance and time.


I have had what is sometimes called a “checkered past”. That is probably the most diplomatic way to say it, anyway! I prefer to think of it as colorful. Either way, from it, I forged my own particular philosophy, which has served me well. The central tenets are:

  • Adversity builds character
  • Hate begets hate
  • We have seen the enemy and it is us
  • A well developed sense of humor covers a multitude of sins


I had harbored the thought for many years that my personal ups and downs, brought on by my own foolish and reckless choices were my fault alone. I thought a stronger, smarter woman would have done much better. I have recently learned that is not true. Women with fewer husbands (and boyfriends of dubious background), more education and better career paths also have troubled children, troubled relationships and troubled health.


I have heard from more than one of the accomplished women from my past, not only the ones who are troubled but the ones who are successful and happy, that my three-generational household sounds wonderful. Admirable, they say, even as I was feeling a bit awkward about explaining my living arrangements, in this modern “mother-in-law” apartment, over my son’s garage.


Somehow it always comes back to the sustaining strength of family and friends.
Neither God nor the troubles of life are respecters of persons. My son’s best friend and his wife also just had a baby, six weeks early, and he is in the NICU. When he was born, that little boy was less than half the size of our Kayleigh and he is struggling to survive. Now that is an agony.


Cancer…pshaw…do it with one eye closed.


I am so lucky; the worst that has come from all my bad choices and foolish ideologies over the years is a meager financial portfolio.


I hate the hole in the neck as much as, some days even more than, the loss of my voice. But I have learned about things lately that I hate a whole lot more. I am very lucky indeed that my best work is yet to come and cancer has only a bit part.


I do not want to trivialize our cancer experiences, by any means. It is a life changing, sometimes life shattering, experience; something that not everyone lives to tell about. The consequences of our treatments can land us in the ER at 2AM; other times they are nothing more than an inconvenience.


Yet, as I reconnect with these old friends and we try to play catch-up for the last 30 years, cancer is just one of the mileposts along my long strange road. Everyone of us has encountered bumps and detours and potholes and highway robbers…along with gorgeous vistas, kind innkeepers and exciting, interesting, fellow travelers.


And, in the spirit of lesson number 4, in the immortal words of Gilda Radner, “Like my father always said to me, ‘Rosanna Anna Dana”, he said, “If it’s not one thing it’s another.’

It’s always something.”

 

 

 

 

 

Sleepwalking Through Life?

 

Recently a friend saw the movie “Sleepless in Seattle” for the first time, and shared his appreciation for the story and the music with a group of us during a WebWhispers Chat. It has been a favorite of mine since it was first released and I’ve enjoyed watching it several times over the past few years. It is now considered a classic along with “When Harry Met Sally”.

As we discussed the love story, and the now familiar music, it occurred to me, for the first time, that I had really not paid much attention to the underlying meaning of the delays that kept the main characters from finally meeting. The adults seems so preoccupied with schedules and problems to be solved they ignored what was right in front of them and resumed something less important to their lives. Thanks to the child’s instincts and tenacity, he played a major role in bringing about what he wished for so keenly. Was this faith, fate, or people brought to a situation where it was imperative that they finally pay attention to the boy’s welfare? The father was usually distracted, and thought his son was just a boy who didn’t understand adult matters. Meaning he was thinking about a totally different outcome for them. The woman the son preferred was very careful. She checked out the information in the boy’s letters and phone calls. She even Googled the father’s background before flying to Seattle to check out this scenario in person. She was cautious, but conflicted also.

There are scenes where they notice each other briefly, but ignore what they felt and saw. Instead they continued on auto-pilot to complete their mission of the moment. It reminded me of just how often we pass by people and situations in a blur. We are so focused it is as though we are wearing blinders, like horses are fitted with for races so their vision to the right and left is blocked - tunnel vision. When we are focused straight ahead we are inclined to miss the people around us who deserve our attention, or at least a greeting to acknowledge their presence.

Call it good manners, empathy, or compassion but there are those who practice contact with the people they meet in a special way that lets the other person know they are aware of them, and their humanity. A few months ago I had a lovely moment with the elderly fellow who was my AARP tax preparer this year. As we finished our business, he took a moment to ask me about the book I had with me. We talked about the author and subject of the book. He took a few minutes out of his day to make mine more enjoyable. Sadly, it so seldom happens anymore that people will take time to converse, this was an unusual event.

I love to people watch while waiting in airports, bank lines and doctors’ offices. Ever notice their reaction if you give them a friendly smile when they notice you? They usually smile back, and may even exchange a few words in conversation. It makes you more approachable. Not too long ago, I spoke to a couple in line behind me at the bank, and their reaction surprised me. They looked at each other, and then she said to me,”You must be from the Midwest”. I responded with, “You must be from Arizona.” I don’t think it was my accent. It is unusual to speak to a stranger here. I doubt I’ll be changing my open, friendly way to speaking to folks. After all there are lots of snowbirds living here part time. Perhaps I’ll meet one of them while waiting. It happens.

There is another example of our sailing along on auto-pilot. We assume we don’t need to read the directions. Have you ever opened up something new and started assembling it or just turn it on without reading the directions first? If we lose the manual there may come a moment when we have to have the information contained in it to operate the gizmo properly.

For some reason whenever I think of this sort of human experience I think of my early relationship with cars. During our engagement and as newlyweds, my husband taught me to drive his 51 Ford. NOT recommended. It was a means to an end. I hated it. Stick shifting on hills at traffic signals, waiting to make a left turn, was the worst case scenario for me. I’d cry out of fear and frustration. “A lovely Sunday drive” my foot! Not recommended for building a relationship or learning to love driving.

Over time driving our family grew and my driving became a necessity. However, we had also graduated from our VW Bug to the Nash Rambler. With five children and settling into the Centennial Farm we had purchased I used it like today’s SUVs to haul kids and stuff. The Rambler had constant carburetor problems. Usually at the worst times: in the middle of an intersection, or in the rain. With assistance from good Samaritans, I learned to do two things that saved me from calling a tow truck more than once. First, park up under the kitchen windows so I could roll down hill to get the car started. Second, always carry a screw driver, or a pencil to use as a prop to open the carburetor if it stalled in traffic…which it did constantly. Nobody told me that learning to drive meant I also had to learn to be a mechanic. No, I didn’t have the manual to refer to, but I did have to listen and learn when I needed to take care of myself. Sometimes there is no other way, but to learn as we go. “Live and learn.” I’ve thanked many a fellow who took the time to stop and help a stranger in a tough spot.

Be careful of the lure of “multi-tasking”. Some brag they can do this stunt well. I catch myself doing this and realize I am not really paying full attention to some aspect of one of the tasks. Even it is working on a crossword puzzle and listening to the TV news. I’m giving half my attention to one or the other. It makes me appreciate meeting people who are living fully in the moment. Being present and alert can become a habit when practiced.

Multi-tasking today can mean talking on a cell phone or texting while walking or driving. We know how that can end up. Eric Schmidt, CEO of Google, gave the Commencement Address at the University of Pennsylvania in Philadelphia on May 18, 2009. I’ll paraphrase his closing remarks. He advised the graduates to turn off their computers and electronics and spend some time out in the world to see what is needed. That was his recipe for success. A sure fire plan, I think.

As laryngectomees we are no different. Sleepwalking? Information goes in one ear and out the other in the beginning. We don’t always remember what we were told. We may have taken home a good deal of written information that we don’t get around to reading until weeks later when we really need it. We can only absorb as much information as we can tolerate in the moment. We have other things to focus on that seem to be unavoidable deadlines. We have people to take care of, appointments to keep, or a job to maintain. Perhaps we just aren’t ready to deal with the truth and all of the anatomical changes we’ve survived. With time we heal. We eat and speak in a new way. What I hope we have learned along the way is that there are new laryngectomees every day, and we can be there for them. The WW Chats and postings are there to help us reach out and communicate. Participating in a local support group and the IAL should not be underestimated for their face to face support. You may attend with the expectation of getting a specific form of help for yourself, or later helping others, and end up receiving more than you give from a new friend.

Elizabeth Finchem
 

 

 


 

Communication


On the first Sunday of June for the past 100 years there has been a homecoming at Pleasant Grove Community, located five miles northeast of Elgin, Texas. A beautiful well-kept cemetery is there, a two-room school built around 1924 that is now used for family reunions or community gatherings, and a large arbor that has tables and benches for “all day dinners on the ground.” The oldest gravestone has the date of death as 1871, but the earliest log school was built in 1860. People who grew up in the area or have relatives buried there come for the homecoming each year. My first ones to attend were many years ago when two or three hundred would attend, but in 2008 there were maybe only a hundred. There is always a brief program during which the names are read of those who have been buried the past year, a prayer is given, and some special quartet will sing some songs. Then we have a big potluck meal made up of dishes brought by the different families. After lunch, the afternoon is spent in visiting with different family members.

Relatives usually sit together for the meal, so this year there were family cousins sitting at the table where my daughter Judy and I sat. Several cousins, like me, were 88 years old this year.

Cast of Characters:

Cousin Pauline – a former army nurse who had a complete German town and soldiers surrender to her and her medical unit right before World War II was over. Pauline wears a bothersome hearing aid today.

Cousin Tommye – a WWII nurse, Tommye also taught navigation to young pilots who were flying the Pacific. Tommye is almost blind from macular degeneration, but she still navigates for her husband Kelly, who is still driving at age 90. Kelly was in China part of World War II and came back to work with the Atomic Energy Commission when it was formed.

Cousin Fay – also a former nurse in the South Pacific suffers from dementia and doesn’t always know where she is or what day it is.

Cousin Marjorie – a civilian employee during World War II, she’s the Cousin Clown who keeps everyone laughing even though she’s almost deaf now and her speech is so slurred that it’s almost impossible to understand her.

Before the start of the program at Pleasant Grove, Pauline removed her hearing aid because it was squealing. We were also looking for another cousin who was due in from Houston. Marjorie is slurring her question of “where’s Gayle?” Tommye is shouting that she’s at the next table, but Marjorie can’t hear a thing she’s saying so repeats the question several times. Since I can’t speak because of a laryngectomy, I’m trying to communicate using my Servox, but no one can understand me so I resort to writing on my Magic Slate. Tommye, of course, can’t see what I’ve written, and Fay is wandering around trying to find someone to talk to.

As the solemn program begins, Pauline, who has just removed her hearing aid, loudly announces “I can’t hear a word they’re saying.” When it’s time for the prayer, Marjorie asks loudly, “Who are they praying for?” It was so loud that I believe people in the next county could have heard. There were a few raised eyebrows, but then the people laughed, understanding our communication situation.

By the time lunch is served, we’re all laughing at how we old people communicate.

All the cousins came to Pleasant Grove to communicate their love for the others and to show respect for their parents, grandparents, and great-grandparents who are buried there. We had a great time in spite of being handicapped.

But there is a way of communicating with people by writing a story for future generations. Back in 1972 I helped write the centennial story of Elgin -- A History of Elgin, Texas 1872-1972. We had 2000 of them printed and they were all sold through the years. No other history had been written since that time. In January 2008 Sydna, my other daughter, decided it would be good for the Elgin Historical Association to earn money to help support the local museum by having another book published. She had an announcement in the Elgin Courier, the weekly newspaper, that short stories were needed for a book by people who were born in Elgin, or attended school here, called “Elgin, Home for a Time”, or remembered special things about the town. The Association hosted two writers’ workshops to encourage people to write their recollections. For several weeks that announcement was in the paper.

Stories began to pour in. Some were written on tablet paper in pencil, some written in ink, some arrived by email. Everyone had a story to tell. There was excellent response from the community, and when the number was outgrowing the number of pages that were agreed to with the publisher, the announcement was made that there were enough for the book. So my daughters began to edit the stories. Over 70 people had sent in their stories and the book was published. Some of the stories will make you laugh. Some will make you cry. Some will bore you. But that is Elgin. The book Elgin, Etc. was published. The signing party was held in the old high school auditorium that was built in 1928 and had been beautifully restored. There was an excellent crowd in attendance. A print run of 750 was ordered and in three months the books had to be reordered. People were buying them as gifts to send to people who used to live here, and those who lived away were ordering them by mail. This was a very successful money making project. This was a way that the history could be passed on to other generations, a wonderful way to communicate with others they would never know.

As members of WebWhispers we use our ability to speak in various ways to help others who have had cancer and no longer have their natural voice. We give and receive help and become friends though we may never meet in person. I thank all of you who have made this possible for us. We are truly blessed.

Nell Davis
 

 

 


 

Voices Restored – Peru

Jack Henslee (jhenslee@comcast.net)

 

Ever since I was eleven years old, I have dreamed about someday visiting the ancient Maya, Inca, and Egyptian ruins, and more recently the Angkor Wat site in Cambodia. Last year I finally made it to Chichen Itza, and Tulum in Mexico. This year I was supposed to go to the ancient lost city of Machu Picchu in Peru, and while there I planned on visiting with the Peruvian Laryngectomee Association in Lima.

However, due to some concerns about my ability to handle the altitude and the extensive walking at this time, the plans had to be changed. So I made a reservation for a 15 day cruise from Chile to San Diego, CA, with plans for visiting the Chile, Peru, Ecuador, and Costa Rica associations at their respective stops. Plus the price was fantastic at only $849 per person for 15 days.

Even though I had four different email addresses for Chile contacts, plus two knowledgeable sources for both Chile and Ecuador, I was unfortunately not able to make contact with anyone in those countries. Chile was just plain frustrating because they have or had a laryngectomee organization at one time, but in Ecuador’s case there simply may not be any type of organization. It is a fairly small and poor country.

Peru was not a problem because I had made contact with Dr. Mariella Poblete, Peruvian Cancer Hospital, who is in charge of laryngectomee rehabilitation in Peru. Mariella and I have been communicating for 4-5 years now and it was great to finally meet her. Earlier this year I had sent 6 donated electrolarynx units to her (it is not an easy task to mail things of value to Peru), and on this visit, I hand carried 6 more units.

Mariella and her daughter Laura ( who served as a great translator) met me at the Port and we proceeded to the hospital to meet with her group. Due to our late docking which was caused by swine flu concerns, we had a very tight schedule so sightseeing was limited to what we saw while driving. Lima appears to be an interesting city with a staggering population of 7 million which is 1/3 of the country’s population. The streets appeared to clean and well maintained but traffic basically turned it into a giant parking lot.

The hospital is only 9 years old, clean and modern. Our meeting area was very small and we were greeted by twelve laryngectomees and an equal number of medical students. They provided a nice snack of “typical Peruvian food and drinks” which we all enjoyed during a Q&A session that lasted 2 hrs. There were several excellent esophageal speakers, 4 used an EL, and one used TEP. That person was Dr. Victor Repeetto, MD, who had his laryngectomy 9 years ago and was one of the first TEP speakers in Peru.

One lady, María García Tarazona, had received one of the donated TruTones sent earlier. Before her laryngectomy, she had been a swimming instructor, and with the loss of her income and her voice she had become a recluse. She is now a very active member of the organization and her speech is great. The next step is to somehow find her a Larkel so she can resume swimming and maybe become employed again.

On the way out, we stopped for a short visit with the Deputy Director of the Peruvian Cancer Hospital, Dr. Raúl Cordero. Dr Cordero, as with all the people I met, was very appreciative of the donations and stressed how much they are needed. Unfortunately, Peru does not provide free medical and as a result there are not a lot of laryngectomees in Peru. They either die from no treatment, or survival is short term because it’s diagnosed too late. The late diagnoses also leads to difficulties with speech rehab and swallowing because a lot of radical, extensive surgery is involved, such as with the Peru Association’s Treasurer, Ana María Matushita, who has no tongue. A good perspective is a comparison to Costa Rica. Peru has triple the general population but probably less than half the number of laryngectomies!

On the way back to the ship we made one last stop for a late lunch at a Peruvian buffet. That was just what I needed…. More food just in case I wasn’t getting enough on the ship! Turned out to be an excellent lunch however with about 20 different “local” dishes to pick from.. all you can eat of course!

The next stop was Ecuador, where I had no agenda other than some limited sightseeing. It is very poor country and not a lot to see. At least not in Manta where I was. Manta is famous as the home of Bumble Bee and Star Kiss Tuna, and near where the famous Panama hat is hand woven. I’m sure that they have a need for some laryngectomee assistance but that will have to be another mission. One interesting fact though is that “voting” is mandatory in Ecuador. If you don’t vote, you are fined, cannot have a driver license or passport, things that are taken for granted elsewhere.

Finally, I got back to my home away from home… Costa Rica. I was met at the dock by my friend Marcos and his daughter. They took me to a restaurant several miles away and we joined about 10 other members of ALARCORI for a nice lunch and visit. I had also hand carried another 6 donated ELs for them which as always were much appreciated. This was a great visit but it was more social than business. We briefly discussed their quest for some office space, the status of those that had been taught to speak last year, and their quest for a donated laryngoscope. Dr Ana Vilalobos wants a scope so they can concentrate on early detection and prevention, which of course is the best cure. If any of you have any known sources for a used system please let me know. The ALARCORI members have also started a school visitation program, and they are working on their second Lary Conference for this November.

As with most trips, or even local patient visits, there is one thing that stands out and reinforces your commitment to help others. In this case, they gave me some bittersweet information about two of the men we gave voice to last year. Both of these men had recently died, and one of them was relatively young. After their deaths their family returned the donated ELs so others could use them, and they told the club how important it was to them and their lost loved ones to have been able to speak with the family before they died. They did not die in silence with unknown feelings, and that pretty much says it all.

 

Jack Henslee, Marcos Salazar

and Dr Ana Vilalobos'.

The Radiance of the Seas is in the background.

A shot of the CR group at lunch in CR

   

Jack Henslee, Mariella Poblete, Laura Poblete , Ana María Matushita (clockwise)

Medical Students and 2 Lary's

   
 

Jack with Members of Peru Association

 

 

 

Welcome To Our New Members:

 

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

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 46 new members who joined us during May 2009:

 

Linda Barnett
Aberdeen, OH

Ghulam Hussain Butt
Muzaffarabad, Pakistan

Becky Castor - (M.S., CCC-SLP)
Woodward, OK

     

Dennis T. Clemente
Waltham, MA

Emile Dicker
Timmins, Ontario, CAN

Tom Dodson - (Vendor)
San Antonio, TX

     

Karen Goodman, M.S. CCC-SLP
Orange, NJ

Lisa Hale - (SLP)
Jonesboro, AR

Michael Hines
Huntington, WV

     

Roger Lee Hines
Richmond, VA

Rachel Jenkin - (Medical)
Willetton, Perth, Western AUS

Boris Jovanovic
Tucker, GA

     

Bill Kavan
Rancho Cucamonga, CA

Kevin Kloppenburg
Daytona Beach, FL

George Kralle
Linderwold, NJ

     

Michele Kralle - (Caregiver)
Linderwold, NJ

Stephen C. Krueger
Sun City Center, FL

Vicki Larabee -(Caregiver)
St. Joseph, MO

     

Robert Lockward
Hope, NJ

Ernie Lovell
Inglewood, CA

Penny Lovell - (Caregiver)
Inglewood, CA

     

Douglas A. Mahn
Holland, MI

George Marinek - (Caregiver)
Boardman, OH

Frank E. McCarthy
Killen, AL

     

John McComb
Hollywood, CA

Rishen Moodley - (Caregiver)
Amanzimtoti, S. Afica

Ronald. J. Momeyer
Bradenton, FL

     

Tim Olsen
Redway, CA

Izzie Pardo - (Caregiver)
Grand Terrace, CA

Edgardo R. Raneses
Antipolo City, Philippines

     
Ramona Ines B. Raneses - (Caregiver)
Antipolo City, Philippines
Bryan B. Rayburn
Edmond, OK
Sandi Roth - (Caregiver)
Rockaway, NJ
     
William Serianni
Horsham, PA
Ron Sexton
Madison, TN
William Bruce Sherrill
Salilsbury, NC
     
Hannah-Louise Smith - (Caregiver)
Manchester, UK
Pauline Smith
Manchester, UK
Demmie W. Stephens - (Caregiver)
Madison, GA
     
Kennie L. Thompson
Sangerville, ME
Andy Wade
Brownwood, TX
Beverly M. Ward - (Caregiver)
Decatur, AL
     
Carl F. Ward
Decatur, AL
Gregory Dean Webb Sr.
Pensacola, FL
Larry Williams
Madison, GA
     
Amy Zeller - (SLP)
Nashville, TN
   

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
 

 

 

Disclaimer:
 
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
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  © 2009 WebWhispers
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