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A laryngectomee speaks out on humiliation and how to move forward
By Herb Simon
August 6, 1999
Reprinted with permission from the author

PART 1

Hi my name is Herb Simon and I am a laryngectomee (since June, 1995) from Silver Spring, MD. I just read your letter and can empathize with what has happened to you. If you folks are spiritual (as I am) you can tap into the strength and wisdom offered from that source. I think the best way to pursue this is to overcome it by neutralizing it and eliminating most of it by your own positive actions (take the bull by the horns). I will elaborate later in this message. I think it's safe to say that all of us ("larys" or laryngectomees) have faced similar situations at one time or another. How we react to them is what's important.

As far as the Costco incident is concerned, I think the best way to react to that is with a SMILE. A smile is the best weapon or neutralizer for this kind of behavior. This type of thing happens frequently: the looks and the head turning when you're in public. If people are not looking at you and they hear a strange or alien sound, their knee-jerk reaction is to look in the direction of the sound in bewilderment. SMILE and you immediately put them at ease. Sometimes I will even tell someone that I am fine or okay (all the while - SMILING at them).

Unfortunately, there will probably always be people that respond in an immature way. This is something that we just need to accept as an event that will likely be on-going. We can go about our lives and not let it bother us. Here are a couple of tips that I can offer that have worked for me in business:

SMILE as you speak. I speak with a Servox artificial larynx (AL). I speak very clearly and in business I am assertive (as I was before the operation). When I detect some uncertainty or strange looks or laughter from those I am addressing, I will look them straight in the eye, smile and ask "can you understand me?" I know that I need to be the strong one. I also know that I am focused on my goal and if they are not capable of dealing with me, I will move on to someone who is. Since I am in Real Estate sales, it's the nature of what I have to do anyway.

ANOTHER consideration might be for you to use the AL in business for the time being (while you work on esophageal speech). I know of some larys that use esophageal or tracheoesophageal speech and also use the artificial larynx at certain times. I am not physically capable of using esophageal or tracheoesophageal speech (I had a puncture and could not produce sound, so I had the prosthesis removed). I sometimes envy those that can.

The reason I suggest the possibility of trying the artificial larynx at work is because when you lift the AL up to your neck to speak, there is no question, even before you say anything, that you are going to sound different. If you smile and maintain eye contact at the same time, you will diminish or maybe even totally eliminate the responses that cause humiliation to you. I have personally found this to be very effective. If you live near a laryngectomee club that has a loaner closet, you may want to borrow a Servox for a week or so and see how that works for you. I am not a Servox salesman, however, I believe that in most larys, it produces the clearest, most understandable sound and tone, which is what we are trying to achieve. It is our responsibility as larys to make it as easy as possible for others to be able to hear and understand us.

JOIN a local support group if you haven't already. As great as WW is, it's still better to be able to meet and share with others in person. Try to go to an IAL (International Association of Laryngectomees) convention ASAP. It will do you a world of good.

It sounds to me as if you are progressing at a great pace. You are experiencing growing pains, much the same as a youngster does in growing up. This is a new you. "You have to crawl before you can walk". You are learning about yourself and unfortunately in some cases, about others. This is just a stage you are going through. I feel certain that with all the excellent input from WW and your personal God-given "will to succeed," you will look back on the humiliation you have just suffered as a learning experience. Try to turn this negative experience into a positive one. Everything happens for a reason. You would probably not have chosen these people who caused you this humiliation as friends even before your operation! You have joined a very special group of people. I wish you the best and hope that this is helpful. God Bless You.

PS: This is just a personal opinion, but I think that going the ADA route is a negative approach. It will just keep the hurt from the humiliation alive and you will have to re-hash it and re-live it for a long time. Think positive and act positive and you will arrive at your goal with the least amount of stress for both you and your wife. The time you will have to spend pursuing the ADA route, could be spent doing positive things like mastering your new speech, and just plain enjoying your time together -- "smelling the roses."