I’VE FALLEN AND I CAN’T GET UP!!
We’ve all seen these public service announcements or commercials. Most of us have probably laughed at them from time to time, but I think we all know it’s not really funny. Sometimes, we just need help. Not everyone needs a medallion with a button to push to call for help. There are other ways to get help.
This is about support groups. I don’t really like to define myself by the health situation I have been through, but unlike some situations, mine left me pretty fully exposed. This is not, however, a “poor me” segment. The truth is I’m pretty lucky and lead a rather charmed life.
After losing my vocal cords, I didn’t really take time out to feel sorry for myself, so there’s no point in doing that now. I’ve had people ask me how I got through such a difficult thing. Well, there are lots of answers to that question, but a support group made a huge difference for me.
I fought this idea for a long time. My speech therapist encouraged me to join a support group of other people who had lost their vocal cords, but I just didn’t think I needed it. I guess I pictured people sitting around in a circle trying to outdo the previous story teller and swing the group to feel sorrier for them than they did for the last speaker. Nothing could be farther from the truth.
Of course, not all support groups are the same. While the group that I joined was made up of people who had lost their vocal cords, not all of them used the same kind of speaking device. It’s a very personal thing, really. I went through a year with an entirely different system of speech, but in the final analysis, it just didn’t work for me. For a long time I resisted the battery operated device that I presently use. I didn’t want to sound like a robot. Going from a singer to someone who could only buzz my words was just too much for me to handle. Children usually think it’s “cool,” but clearly they don’t understand the limitations of speaking with a battery operated instrument.
Learning to use such an electro larynx is a fairly lengthy process, which takes lots of practice. Just getting the device tuned so that it sounds sort of like I sounded took me a very long time. I realize that I’m more sensitive about the exact pitch of the instrument than others might be. When my battery starts to fail, for example, it drives me crazy. Other people don’t seem to notice it, but I do.
Losing one’s voice is extremely isolating. At this support group, I learned that people deal with the loss of their voices in different ways. Eventually I heard a fellow Vietnam veteran about my age using an electronic device, and he was really good at it. He spoke clearly and quickly and just acted as if it were completely natural for him. He actually inspired me to try the electronic gadget. I figured that if he could do it, so could I.
Still, I resisted the electronic device. The thought of sounding like a robot really bothered me. I had heard other people use such devices and some of them used no volume discretion. Then my support group had a Christmas party. I didn’t really want to go, but finally gave in. Sitting around the table with a number of other laryngectomees in a purely social setting was quite enlightening to me. I realized that everybody sounded different. Even though we all used basically the same piece of technology, we each had a unique sound. One man had a British accent. It was an epiphany for me. I think that’s when I started to give attention to the precise tuning of my device. I also switched devices and chose an option that offered variations of inflection controlled by thumb pressure. If I pressed harder, the pitch of my voice would rise slightly to place emphasis on a word or a phrase. Then I had to work on just how much of that to use. Over use of the inflection button caused me to slide from low pitch to high pitch, which made me sound a little drunk.
The fellow veteran who inspired me to try the electronic device was quite sensitive about his situation. He got angry when people didn’t understand him. He could hear himself and knew that he was speaking clearly. People sort of decide in advance that they’re not going to understand you. I once had a taxi driver in Hawaii who asked me five times where I wanted to go. Each time he said he didn’t understand. Finally, I told him he knew perfectly well what I said and to just drive and leave me alone. He drove me right where I wanted to go. Maybe he just wanted to hear someone speak in an unusual way. I still run into people who just looked at me blankly, even though I knew I was speaking clearly. In convenience stores, the people behind the counter assumed that I was also deaf and would scream and act out what they were saying. I would tell them I wasn’t deaf, I’d just lost my voice.
Speaking on the phone is another issue for those of us who speak with an electronic device. Many people just hang up on me. Others laugh and then hang up. There are some things that are more difficult to articulate than others. In order to distinguish between a “d” and a “t”, I have to put the t first, almost separated from the rest of the word like, “Do you want me t-ooo t-ake out the t-rash?” With a word starting with d, I could just run it together. “Do you think I’m dumb?” The d is a softer consonant. On the phone when I’m spelling things out for people, the letters C, G and Z sound the same to them. I have to say C as in Cop, G as in Gofer, and so on. All of these things I learned from my support group and my speech therapist.
I learned from my doctor that my condition was caused by exposure to Agent Orange in Vietnam. He encouraged me to file a claim with the VA, which is something I knew nothing about, but has made life a good deal easier for me. Going back to work at the age of 55 was impossible to comprehend, especially since I had lost the ability to use the very sense on which my career was based. I was a singer. I taught people to sing and I directed choirs. I knew that selling myself as a choir director who could not even speak was going to be a real challenge. I still had the ability to write music and a facility for playing piano, but making a living with either of those abilities is a huge challenge even for a young person.
I didn’t want to just stop living. I could no sooner take music out of my life than I could become an astronaut at the age of 55. This is where I had to just turn things over to a “higher power” and trust that I would have some kind of meaning in my life. I ended up taking on the Kirksville Community Chorus, but the entire process was serendipitous. Several people helped usher me into the position I have held since that time. Here, I tip my hat to Dr. David Nichols, who had been one of my professors in graduate school. He was directing the community chorus, but was ready to move on to other responsibilities. He never, at any time, suggested that the absence of a voice might impede my ability to direct the chorus.
Support comes from more than one direction, and I had incredibly caring and helpful personal support, not only from Dr. Nichols, but from other people in my life. But some of the things I had to learn about, they had never experienced. That’s when the support group took on a special significance for me. The most important thing about a support group is that you realize you’re not alone. You learn that everything you’re going through has been experienced by others. That doesn’t mean that all the difficulties go away, but only that you too can survive whatever it is you’re dealing with.
In my situation, there were questions about how to take a shower and avoid getting water in my stoma. People who have had a laryngectomy breathe through a hole in the neck. The hole in my neck is called a stoma. If water goes into the stoma, it goes directly into the lungs. Even a small amount of water in the lungs can lead to pneumonia. This is only one example of things I had to learn. Most of the hurdles have by now become so second nature that I find them difficult to remember. I realized at one point that if I did fall, I couldn’t yell for help. This notion came to me when I was at the top of a long flight of stairs, and it was a pretty sobering thought that I might be sailing through the air without being able to yell for help. Even if I stub my toe in the night, I have to find my speech device before I can say “ouch.”
There’s actually a great deal of education to go through. Even some of the doctors who cared for me just didn’t seem to understand exactly what was going on. Frequent trips to the ER became necessary in the early months after my surgery. On some of these trips I would run into interns who had never met anyone with a laryngectomy. They quite simply didn’t know what to do. Even these days, every doctor I go to asks me to say “Ah.” Of course I know what they mean, but I sometimes wonder if they realize I can’t say anything.
My support group discussed carrying a sticker attached to my driver’s license. If a policeman stops me on the highway, I don’t want him to wonder what it is I’m reaching into my pocket for. We were also advised to let flight attendants know that we are neck breathers. If the oxygen mask drops from the ceiling, it has to go around my neck, not over my face. I’ve even had procedures in the hospital in Columbia when I had to explain that they were putting the oxygen mask on me incorrectly. It’s important for them to know this in the event that there’s a problem.
As I mentioned, initially I thought I didn’t need a support group and fought with myself over it, but finally decided to pay a visit to one of their meetings. I guess I pictured everyone sitting around wrapped in self-pity, which is just not how I wanted to handle my situation. Sure, there are tears from time to time, but the important thing is that these are just good people trying to find their way through a difficult situation.
Soon after I got involved in this support group, I was elected president. I guess with me it’s either all or nothing. We had people come in off the street who had not communicated with their own family except by writing notes, sometimes for as long as two years. I quickly learned that we could have them using a device like mine and talking in just a matter of minutes. It was truly inspiring to see what a difference it made in their lives.
That’s the way it works with support groups. The people who have been around for a while teach the new participants. After a while, those who were once new members are able to step up and provide help for the people who come later.
Support groups provide help for people with ailments, addictions, emotional difficulties and so on. This harkens back to the old adage, “There’s safety in numbers.” Just knowing that you’re sitting in a room with other people who have faced the same difficulties is somehow reassuring. There are even support groups for the families of those who are dealing with difficulty, such as Al-Anon. One thing I learned by participating in the support group is that often the caretakers of those who are in distress need support more than those who are more directly affected by the malady.
I guess there will always be problems that I will face with my voice situation. A noisy restaurant pretty much eliminates me from conversation. I wonder if that’s why people only ask me out to noisy restaurants. I have learned that speaking with a device is sort of a safety valve, however; it works better than counting to ten before saying something I might regret.
One important thing is that I learned about many of the pitfalls from my support group before I actually had to face them. This is true of groups like Alcoholics Anonymous where a twelve-step program is offered to help an individual purge themselves of the wrongdoings they have committed during their time of insobriety.
Ultimately, we are responsible for ourselves, and support groups do not substitute for figuring out the solutions to problems that will work for us. But it’s good to know that there’s somewhere to go to help find answers to questions that may arise.
Maybe the public service announcement should be, “I might fall, and if I do, I might not be able to get up.” But that’s a little cumbersome. Perhaps the author of that phrase was in a writers’ support group. Truthfully, not all support groups are successful, and certainly not for all people who try them out. The good news is that participation in a support group doesn’t require a lifetime commitment. Once you get past the need, you can go on and conduct your life, carrying with you the lessons you have learned.
I still get the opportunity to share tips with people suffering from the same effects, and every year I speak to the graduate students who are studying to be speech therapists at Truman State. This is due to another example of serendipity since the instructor for these classes is my neighbor, Sheila Garlock. I truly believe that no one can do everything alone. Sometimes we just need help or luck or both. I’ve only mentioned two people by name that have played a special part in my ability to live a full and useful life. There are many more I could name who have contributed significantly to my rehabilitation. I only hope I can in turn use my experience to help others without a natural voice return to active lives.