Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
TREATING THE WHOLE FAMILY
When I began my career as a speech – language pathologist I never took into consideration that I would be treating anything other than a diagnosis. Graduate school focused on etiology, symptoms and treatment programs. There were tests to give and objectives to be accomplished. Over my years in clinical practice, I have come to realize that rarely do I treat just a disease, I treat people. I treat spouses and families. I help all those involved find peace with catastrophic events.
Communication disorders result in strong feelings that run deep through the person with a laryngectomy and their families. Speaking is basic to humanness. When it is disordered, feelings of grief, anger, inadequacy, confusion, guilt, and vulnerability can and most often do set in. If you haven’t discovered this already, let me tell you that medical professionals are not adept at dealing with emotions. This is not because of a lack of caring but a lack of training. It’s not just medical professionals that become uncomfortable at the hint of emotional display; it is our culture in general. We say things to each other like, “It’s OK” when it clearly is not OK, nor should it be. We tell people “Cheer up.” which, considering the circumstances is absolutely ridiculous. These misguided offerings of empathy and sympathy are said out of love and caring. How is it that we miss the mark? My hypothesis is that as a society, we generally feel uncomfortable with our own emotions so how can we handle someone else’s and respond appropriately?
Persons with laryngectomy and their loved ones are faced with many emotions. None of these emotions are good or bad. They just are. Emotions are central to being human and must be expressed. As a species we tend to respond in the same manner when it comes to catastrophic events. The display and content of these emotions is unique to the individual but the feeling of loss and the grief process is similar in each of us.
Laryngectomy means change and in change there is loss. For persons with laryngectomy that loss may be of job, expected future, and certainly communication. In short, it is the loss of a dream and with that loss comes grief. The pain of that loss never goes away and no one can or should try to take it away. Although the loss remains with you the rest of your life, over time you learn to control your feelings rather than have your feelings control you.
In addition to feelings of loss and grief there are feelings of inadequacy. Hospitals and medical professionals tend to fuel this feeling. From the moment you are diagnosed you lose control of your life. When you step foot in the hospital you give up your autonomy. You must function according to everyone else’s schedule and submit to medical tests and procedures that are never fully explained to you. You are told what to do by professionals who are “wiser” and “know what is best” for you. Following your surgery you wake up with tubes, hoses, suction machines, staples and stitches, secretions and holes where you thought you would never have a hole. And then, in about a week, you are sent home without a clue as to what just happened or what you should do next. Is it any wonder families and persons with laryngectomy feel inadequate to handle the challenge before them?
As a result many families and laryngectomees become angry and confused. Anger generally happens as a result of violated expectations. Expectations can include a ‘cure’, the return of ‘normal’ voice, and a return to work. Another expectation is that you will resolve this crisis easily and with little disruption to your daily routine and you will manage the change with a minimum of stress and pain. When surgery and recovery do not go as expected feelings of incompetence and weakness can be overwhelming. Whenever disability is present our options become restricted. With restriction comes a feeling of loss of control and following that loss, anger.
Guilt is another emotion that I see in the laryngectomy population. I have heard so often, “If only I didn’t smoke” or “I brought this on myself”. I have also had spouses tell me “I should have made him quit smoking”. Whenever catastrophic events happen it is human nature to try and affix blame. Guilt is an emotion suggesting power. It says that you had some negative power to cause your unfortunate circumstances. In reality, this is not true. No one has that kind of power. And the choices we made yesterday may not be the choices we would make today but I firmly believe that we make the best decisions we can at the time. No one deliberately sets out to cause cancer within his or a loved one’s body. And no amount of guilt or worrying will change the present outcome.
Following laryngectomy, feelings of vulnerability are inevitable. Deep down we all know we are mortal and vulnerable but we do not want to be constantly reminded. We all want to be as immortal as we were when we were 12 years old and we could take on the world. In reality we need to feel immortal or we would not function well in our daily lives. Without our pseudo-vulnerability cloak we wouldn’t get in a car, cross the street or get on an airplane. However, when catastrophic events pierce that cloak we become uncomfortable, scared and timid. Every lump, bump, swelling and tinge of blood sets us into a tailspin. For all of the chaos that vulnerability can cause there is an upside. We learn to take each day as it comes and celebrate each breath we take, each moment we have with loved ones. We learn to take each day for the gift that it is.
Going through the process of laryngectomy leaves us with many legitimate emotions. Understanding why you feel the way you do is but a first step in the coping and healing process but where do you go from here? The following guidelines may be of some help as you, and your family, begin your healing work.
The first step to coping with a catastrophic event is to realize that all emotions are legitimate. All feelings should be expressed and accepted without judgment. Remember that cancer happens to family and friends, not just the laryngectomee, and they deserve the same freedom to express their emotions. This can be difficult when everyone in the family is in need of help. Lost Cord or New Voice clubs are tremendous support for families trying to cope. If a support group is not available, a counselor specializing in family and marriage counseling can also be of assistance. You are bound to have feelings of inadequacy as you deal with the changes to your body and your life and the emotions that result from those changes. Asking for help during this difficult time is not a sign of weakness but of strength and a desire to move forward.
Empathy, caring, and judgment-free listening go a long way toward healing. Persons involved will not necessarily move along in the healing process at the same rate. This, too, is ‘OK’. There is no timeline for healing. Be gentle with one another and give each other permission to express emotion in an atmosphere of acceptance and love.
Understand that the laryngectomee does not have to like his new voice now or ever. He or she can accept it but they don’t have to like it. Remember there are no ‘bad’ emotions and ‘not’ liking something is perfectly legitimate.
Know that there is NOTHING that you have done to willfully bring this upon you. We all make choices that we think are the best for us at the moment. How can we possibly know all of the consequences? George Bernard Shaw, an English dramatist, said, “A life making mistakes is not only more honorable but more useful than a life spent doing nothing”.
Stop and smell the roses; appreciate the day before you. Understand that we are all vulnerable; we are all terminal. I particularly like the quote from Dr. David M. Luterman, an audiologist and professor at Emerson College in Boston; “If we live long enough something bad will happen to us, and if we don’t live long enough, then something bad has already happened.” At first this may seem a bit harsh but it reminds us of the truth and encourages us to live each day to the fullest.
In short, allow yourself and those around you full expression of their emotions. Listen without judgment, listen with love, and listen the way you would like to be heard. Live in the here and now. I wish you peace and understanding in your journey. And I welcome your thoughts and invite you to share your stories.
Caryn Melvin, Ph.D. CCC-SLP
Dorn VA Medical Center
6439 Garners Ferry Rd.
Columbia, SC 29209
803 776 4000 extension 6458
In addition to being a speech-language pathologist at the Dorn VA Medical Center, Caryn Melvin is an Adjunct Assistant Professor at the University of South Carolina and is currently working on an Ed. S. in Counseling with an emphasis on marriage and family.
BE AWARE by Pat Wertz Sanders
We should be educated about what is and has happened to us with cancer and, because of the Internet, that information is plentiful and easy to obtain. Actually, some new laryngectomees may be getting advice that is far beyond what they can use or need. It reminds me of the 5 year old asking her mother where she came from and after listening to a long detailed explanation of how children are born, the little girl said, “Well, I just wondered because my friend Mary said she came from Alabama.” Sometimes we get an overload of information.
I see this overload on the email lists, where we can read more in a month from the folks who have been there, than we can in a year of research on our own. BE AWARE that all statements are not true for all people. I have seen messages written in to ask a simple question and the answers get so far afield that you have to go back to read the question because you forgot what was asked. And then there is the person who reads the answer and addresses that answer instead of the original question, and in three or four messages, we are so far off the original topic that no one remembers what the question was. This can get confusing to the new lary.
Learn from other larys but know there are differences in us and in the way we need to take care of ourselves. If a diabetic should tell you that staying away from sugar and taking insulin will cure what ails you, would you go ask your doctor for insulin, even if you are not diabetic? No, of course, you don’t do that. However, read carefully and remember that many of us first learned that we needed a blood test for thyroid problems after we read about it on the lists. Sometimes the doctors do not even think about there being such a need. All doctors are not created equal in lary information either.
BE AWARE that all information is not equal nor does it necessarily pertain to you. If someone writes a message about a piece of equipment or a new gadget, don’t assume that you have to have it to survive or that it will be a miracle worker for you. For instance, if you have difficulty coughing up mucus, a suction machine might help, might be a daily necessity, or needed in an emergency but, unless you have special problems, before you get dependant on another machine, ask your doctor and try the simple way. Get enough moisture in your body to thin your mucus. Drink enough water, irrigate, and use humidifiers. Sound too simple? For most, it works.
Aaah, a humidifier, another machine furnishing something we need! A humidifier puts moisture in the air. So does a kettle boiling on the stove. I personally like having this machine in the Winter, when the indoor air is dry, but BE AWARE that, if you don’t have enough money for your medication or food, it is not important to spend $200 for a humidifier or to have a whole house unit. You can put the kettle on the stove or buy a simple humidifier at the drug store for less than $20 and guess what it does? It puts the same humidity (water) in the air as the $200 one. The cheaper one may not be as pretty or have as many settings but they both have to be cleaned and refilled and they both work. If you have the money, then this is not a problem. Buy the one you like the best. If your humidity in your home is low even with a humidifier running, you should add humidity to the stoma area because the house doesn’t need as much humidity as your trachea does. Wearing a damp stoma cover in addition to the basics, mentioned above, will up the moisture content of the air you are breathing. BE AWARE that new larys, whose bodies are not accustomed to the new way of breathing, need more moisture than old timers so when we old timers say, “I don’t bother with that”, you may need to “bother” with it at your stage of recovery.
Another handy-dandy machine is the speech amplifier and I have had people ask me about it because they had been told it would make talking easier. It makes talking LOUDER so if you have a very soft voice and need to be loud enough to reach a group of people or have to talk over machinery noises, it is very effective. But it does not talk for you and it doesn’t clear up your speech. If you run one word into another and are hard to understand, your speech will be just as hard to understand with an amplifier, but it will be louder and have a volume control.
The key is to know which products and machines will help your problem (other than ones that are prescribed for you). Don’t buy because someone else uses one. Don’t buy because it is on sale (unless you had planned to buy one anyway). BE AWARE that a vendor is not responsible for what you buy, since they don’t know if you need it and they are in the business of furnishing what you order. Our vendors are not snake oil salesmen and most of them will tell you straight. Let’s face it. We are a small community and word gets around if one pushes a product that doesn’t work or is useless. We have had those experiences and that is when BE AWARE becomes BEWARE. No vendor wants to put themselves in that position.
I am the great believer in education so that you know what has happened to you and much of how to deal with it for rehabilitation. I am constantly involved. I work harder than I did when I got paid for it, writing messages and articles, editing a newsletter, running meetings, attending others, making speeches, calling on patients. Being a lary helps me understand the people I work for and associate with. I love learning from my friends in my local support group and members of the support groups on line. Sometimes I feel that we qualify our answers too much with constant warnings that we are different or recommendations to see your doctor, but we must do that as a reminder to all newcomers who might think that we all do have the same experiences. It is our way of saying to always BE AWARE.
LEARN TO SMELL?
I can't tell you how many pots and pans I've burned in the past until I learned to smell. I will share with you how I learned and taught others to smell. Hold a bar of scented soap up right under your nose and sniff, keep doing it 'til you get the scent. It needs to be developed so keep trying! When you sniff or talk the airflow is enhanced and the velum (back of upper palate) moves pushing air into the nasal passages. This should work for all types of larys. I am for anything that is natural appearing and unobtrusive. Frances Stack, Laryngectomee & SLP
ONE SERVOX - TWO VOLUMES!
A hint for Servox Digital users that do NOT choose to use variable pitch settings: Set the pitch on BOTH buttons the same. Set the volume on one for normal speech volume and the other for "quiet" talk. Jim Lauder, Lauder Enterprises