How Do I Feel Inside About Losing My Voice?

I am a “people person”.  I have depended on my voice all my life: as a teacher, public speaker, management consultant, human resources manager, and executive recruiter.  I have been very active in my church, the local and regional Lions Clubs and many civic and professional organizations. 

My feelings have gone through several stages corresponding to how much of my voice I have lost.  In the early stages, a large part of my feelings were due more to my swallowing and choking problems than to the loss of my voice.  People could still understand me when I talked although my voice was slurred.  I felt that I had to give up attending any social event where food was being served because I could not socialize and eat at the same time.  This caused me to stop attending Lions Club meetings (which are primarily dinner meetings), some church functions, and going out to lunch and dinner with friends.  I want to thank my friends for trying to comfort me; but unless Esther, my wife, was along to carry the conversation, I felt it was too much effort.  I was afraid of choking and I always felt like a wallflower.

Suggestion:  If you want to comfort someone who has a similar condition to mine, arrange to visit him or her at home when it is convenient for the patient.  Don’t be bashful about going to their home; I know I appreciate visits from friends.  I can visit without worrying about food problems.

Then my voice deteriorated further where many people could not understand me.  Esther could not understand me over the phone.  In person, she had to read my lips or ask me to repeat myself until she understood me.  This was probably my darkest period----I felt like a monk who had been forced to take an oath of silence.  I withdrew from society and did not venture out much other than for necessities.  I felt that there was no purpose in life.

Along the way, the decision was made to move from our home on the Eastern Shore of the Chesapeake Bay to a smaller home near our children in the Charlotte area.  I became paranoid during this period.  I felt that Esther and our family were making major decisions about selling the house and moving to Charlotte without consulting me and sometimes against my will.  Since I could not express my ideas vocally, I felt that they were treating me like a mushroom---by keeping me in the dark and covering me with s!@#.  I became very angry.

I purchased a small white board and started printing my side of conversations so the other person could read them.  I also upgraded my laptop computer so that it could do text-to-voice synthesis; it worked, but it was too large and clumsy to rely on.  I used the laptop when I knew I was going to get into an extended conversation.  My low-tech white board remained my primary communication device.

My voice comes and goes.  I never know how it is going to sound when I try to speak.  Often, I cannot understand myself.  I am surprised when my voice is understandable and sustainable.  Over a three month period, I had two  conversations that went on for almost an hour; primarily because the other parties in these conversations were experienced in working with people with voice problems and could understand my speech which seems to be primarily grunts and growls.

We lived in a rural area in Maryland where there were not many social activities in which I could participate----even if just as a wallflower.  After we moved to the Charlotte area, I craved a social life.  I would go to Wal-Mart during its busiest times and walk around just to be near people.  We moved during the first week in December and there was a multitude of holiday church and family events to keep me busy.

I remembered that God had seen me through two previous life challenges and decided that losing my voice was just another hurdle to clear.  My New Year’s resolution was to find a way to participate in life again and to make myself useful to society.  I resolved to make an effort to “socialize” again----although at the time, I did not know how I was going to do it.  (I will discuss my efforts in a later blog.)

Since I made that resolution, my life has become much more positive.  I am over my anger and my relationship with my wife and family has improved.  My new-found positive attitude has had another pleasant side effect----I feel that my health has improved, although my voice has not.

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Good Things About My Voice And Swallowing Problems

Since May of 2009, motor neuron disease has slowly attacked my tongue and esophagus.  My tongue has gotten very weak; it is difficult to chew solid food; I have to be careful when I swallow that I don’t choke; and my voice has deteriorated to little more than a growl----sometimes I can’t understand what I am saying.  

This presents some interesting challenges.  I now carry a small white board so I can write out messages for family, sales clerks, wait persons, etc.  Or I type messages on my laptop.

However, everything is not all bad; the following is a list of the good things resulting from this disease:

1.       I am no longer called a “loud mouth”.

2.       I can really frustrate telemarketers when they call.

3.       My wife doesn’t have to suffer from my horrible singing in the shower.

4.       My friends and family don’t have to listen to me repeat the same stories for the umpteenth time.

5.       My wife is winning a lot more of our arg……, I mean discussions.

6.       Our grocery budget is a fraction of what it used to be.

7.       Cute young saleswomen fall all over themselves to be helpful.

8.       People remember me and my white board.  After just one visit to a store, I am treated like an old customer the next time I come in.

9.       I have a good excuse for not calling Verizon, the cable company, Medicare, etc. to get a billing adjusted.

10.    When I go out to eat, I bring home a doggy bag with most of my meal; it will usually provide 3 to 5 more meals at home.

11.   I have finally found a way to lose the excess weight that I have been packing on since college.

12.   I can finally wear my “thin” clothes that I have been saving for years.  Are powder blue leisure suits back in style yet?

13.   I can chow down on all of the high calorie fatty foods whenever I want to.

14.   I get a “perfect” martini the first time.  When I write out my detailed order for a martini, the waitperson just takes the white board to the bartender.

15.   I quit cussing (at least out loud).

Two Questions To Ask A Person Facing A Life Challenge

A very insightful person, who I had just met, recently asked me a simple question of: "how do I feel inside about losing my voice?"  Then this person just sat and waited while I collected my thoughts and then write my lengthy answer on my white pad.  Not only did it make me stop and think but it showed that the other person had compassion for my speech problem.

Over the last six months, I have met with many doctors, three speech therapists, the people at the ALS Clinic at Johns Hopkins, a psychologist, my physical therapist who has treated through all my challenges, my friends, my pastor (and good friend), and my wife and family; I’m sure that somebody has asked me the question before, but I cannot remember anybody waiting for me to respond before moving onto another topic.

Then this person asked another great question: "if I had the means, what is the one thing that I want to do with my life"?  (Or something close to that.)  Again, the inquisitor waited while I mentally composed my answer.  I came away from that conversation thinking of what that thing is and how do I achieve it?

My answers to these questions will be the subject of future blogs.  My point is that these two simple, but very compassionate, questions can have great positive impact on someone who is facing a life challenge----but you must wait while the person is composing his or her answer.