Friday, September 29, 2017

Broken Voices (Living with Spasmodic Dysphonia)

It was an early Saturday morning in late March of 2008 that Larry and I traveled from our home in Liberty, South Carolina and headed up to Charlotte, North Carolina, just a couple hours to the north of us.  I would be attending a symposium with a hundred or so others who had come from all over the country.  As I entered the hotel lobby later that morning I immediately noticed how diverse our group was.  It seemed pretty evenly divided between men and women, but our ages seemed to span a good fifty years between the youngest to the oldest.   And as for a dress code, there didn't seem to be one. Some wore jeans and t-shirts while others opted to dress up for the occasion.  So at first glance it didn't seem like we'd have all that much in common. That is,  until we began to talk.     

A couple years earlier I had noticed something weird going on with my voice.  Right after Christmas I had what I thought was a simple case of laryngitis, possibly brought on by allergies.  Several weeks later, however, the laryngitis had developed into a persistent rasp.  I scheduled a long overdue physical which revealed absolutely nothing.  That doctor referred me to an unimpressive throat specialist who checked for nodules, found nothing, gave me some pills to try and sent me on my way.  The problem progressed.  It was harder to get words out now, as if a fist had clamped itself around my throat.  I was still teaching music and directing our church's worship and drama ministries, but I didn't know how much longer I could keep it up.  I pleaded with God to give me a name to this thing that was disrupting my life.  

One afternoon, frustrated and desperate, I sat at the computer and went on a Google search.  I typed in everything I could think of related to the throat, looking for any clue that might solve the mystery behind my troubled voice.  Then suddenly, there on the monitor, was a list of symptoms that described perfectly what I had been experiencing over the past several months.  And it had a name. 

It's called Spasmodic Dysphonia.  My brain was sending the wrong signals to the muscles controlling my vocal cords, therefore making it difficult to speak.  Initially I felt relief. At least I now knew what I was fighting and was ready to do whatever was necessary to get my voice back.  I couldn't wait to be free from the vice-like grip that had taken hold of my voice box.  

I opted for what I thought to be the most reliable treatment available, Botox injections every few months into those out-of-control muscles to calm them down.  And they worked for awhile.  Well, sometimes.  I had good weeks, bad weeks, good days, bad days.  During the good times I was grateful that it was possible to talk without getting tired or feeling socially awkward.  I cherished those days when I could call my family or make an appointment over the phone. But there were also those times when it was easier to avoid people, hoping and praying that I wouldn't have to talk to anyone, uncomfortable at the curious looks.  At those times my voice felt like it was in a prison.  

When I traveled to North Carolina that morning my voice was doing quite well.  I was having pretty good results with my new doctor in Atlanta, in fact my speaking voice was the strongest it had been since all this had started.  But I was well aware that this was temporary.  My vocal cords would start doing their own thing again and that's why I needed to be here, to meet and learn from others who had been through this.  

As I approached the registration table, there was a cacophony of voices like I'd never heard before.  Some seemed close to normal, possibly benefiting from injections or some other procedure.  But others sounded strangled, struggling to be understood or even heard, some of them much worse off than I had ever been.  The lobby seemed like a tiny universe with its own peculiar inhabitants speaking an odd language.  Except that I was a part of this little microcosm and immediately felt a connection with these people.  Though they were strangers to me, we shared something in common. We all had broken voices.   

Before the day was over I would hear story after story of people whose lives had been interrupted just as mine had been.  There was Leta.  I had met her once before in my doctor's office in Atlanta.  Tall and striking, she had a very successful career in sales before her voice broke.  Warm and vivacious with a vibrant faith, she talked about the challenges she faced daily in her line of work.  There was the young missionary wife who had plans to go to Russia with her husband before their mission board advised them to consider another field where the people wouldn't be expecting physical perfection.  I still hear the frustration expressed by the recently diagnosed police captain who feared that his newly broken voice would be interpreted as weakness and cause a loss of respect among those under his charge.   

But all those I met were fighters.  Like the pastor who continued to preach each week by whispering his messages into a microphone and the nationally syndicated radio host who with treatments was able to continue on with her career and the teacher who showed up everyday in her classroom with an amplification device to be better heard and understood by her students. 

When we climbed back into our car that evening for the ride home I knew that God had prearranged this day for me.  During one of the sessions I had asked the question that had been most on my mind.  I had been grieving my loss for awhile and wanted to know, needed to know,  if things would ever feel normal again. Several in that room immediately rose to tell their stories, some of whom had lived with broken voices for a long time.  Unequivocally the message was the same.  Things will get better.  And I would make it.   

Things did get better.  I still faced challenges, of course, and at times became discouraged.  One of my next treatments didn't work, and because of insurance issues, I went well over a year unable to get any financial help.  But I was now better able to handle the setbacks and disappointments in part through the examples of those whose resilience and courage had so inspired me.  Their voices might have been broken, but their spirits were not.  They were the ones who said I would make it.  They'd be pleased to know they were right.  

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