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.  

Friday, September 22, 2017

Rex's Journey

Larry and me with Rex a year ago 
My brother Rex turns 65 today.  Five years ago on his 60th we traveled to Olean and helped celebrate that milestone in a pavilion at the same park where we both learned to swim when we were kids.  My mom would have us walk up to the fire hall during the early mornings of summer, and from there we were bussed to the Olean pool just a few miles away.  I don't remember how many summers we took swimming lessons there, but we both became pretty good in the water.  That pool was eventually torn down and replaced with another.  I read that the rec center where the newer pool sits had to be closed this past summer for an overhaul. Just a reminder that time takes a toll on things.

Time has taken a toll on my brother as well.  Diagnosed with Parkinson's a little over 10 years ago, the disease has little by little worn my very active brother down. As time passed, leaving for work extra early in the morning and staying late wasn't enough.  His body was simply refusing to cooperate and he couldn't keep up on the workload.  So three years ago he did what he had tried with all his strength not to do.  He resigned his position and applied for early retirement.

The first year wasn't too bad.  He was still relatively active and able to climb the stairs to his room and shower on his own in the upstairs bathroom. But life is unpredictable and many times cruel.  A stroke right before Easter in the early spring punched him in the gut and knocked him to the ground. They called it a minor stroke, but coupled with the Parkinson's, it drastically changed his life.  A few weeks in a nursing home, trying to get his strength back, was probably the low point for him.  He was eventually released to return home, but life was not the same. The upstairs bedroom had been replaced with a hospital bed off the dining room and the shower was used only on the days when he was strong enough to climb the steps with help.

But neither has life been all bad.  In adversity, good things can happen as well.  A well-timed gift can come out of nowhere.  A long-time St. Bonaventure basketball fan, the university called, offered him season passes and a spot just beyond the court for his wheelchair with a good view so he wouldn't miss a thing.  For years he has been known as the Flag Man, cheering on the international students by waving their flags when they were on the court. The school now in turn expressed their appreciation for what he had meant to them, and they wanted him there. As far as I know, he made all the games, even when he didn't think he could.    

An article on "Flag Man" Rex Marvin,  from the Olean Times Herald in 2007
The two of us didn't always get along growing up.  It had nothing to do with age, we're only eleven and a half months apart.  But our interests and temperaments are pretty different.  Music was my thing, but he'd complain when I'd break out into song on a car trip which I did a lot.  I was the oldest and thus the responsible child and perhaps a bit bossy. He had more of a tendency to get into trouble, like almost burning the garage down when we were kids.  He liked matches and fireworks almost as much as I liked to sing.  But as time passed and we both began to grow beyond ourselves, I began to really like this brother who loved loud noises and Yankees baseball and amusement parks.         

One year minus 13 days between us 
Whereas time wears away at these bodies, it can do the very opposite within the spirit of a person. Perhaps it's more the awareness of the fragility of life as we age, or as we see those that we care about slowly fading before our eyes, that we finally get it.  For me, it was also the example of my sister, a schoolteacher with time off in the summer, who drove up from Maryland and spent two weeks spending time with, caring for and serving her brother during an especially difficult time.  He ended up being admitted to the hospital. 

A couple of days later we were sitting in his room with him. He was frustrated, close to tears, wondering what had caused this sudden spiral downwards, leaving him unable to do anything at all for himself. Just a few days earlier he had been on an upswing, even feeding himself without the uncontrollable shaking that comes with the disease. And now he couldn't even hold a simple utensil that lay beside the supper that sat on his hospital tray.  With that I picked up the silverware and began to feed him, one spoonful at a time, while with each bite I talked to him and encouraged him to continue on the best he could in this journey called Parkinson's.  And when he was finished I held him and prayed over him as he wept on my shoulder.

I hear that Rex is on the upswing once again.  He's getting around better, is feeding himself again, sleeping better and feeling more positive about things.  I'm glad the road's a bit smoother for him right now.  It's a nice place to be and I hope he's there for a long while.  Happy Birthday Rex. Continue on with your journey.  You're doing just fine.  
         
Rex's birthday present--He can get upstairs on his own!

Thursday, September 14, 2017

The No Hum Drum

One of the PVC pipes lying in the grass 

Vacation Bible School was starting in a week and I had pretty much given up on getting the No Hum Drum made for the first night of closing. I was disappointed but couldn't justify paying the sixty plus dollars it was going to cost to purchase the supplies to make the thing. I'd even called one of the other churches using the same program to see if they'd like to help share the cost.  But they didn't think they'd have time to include the No Hum Drum into their evening program.  Oh well, I might just have to let this one go.  

Vacation Bible School is a big deal for our church.  A year after we moved to this area,  I did census work here on the south side of Elmira where we live. One call in particular still stands out.  I was getting ready to knock on the door of a run-down duplex when I heard a long stream of expletives directed at someone on the other side.  A young child answered the door that afternoon and I knew he and a couple of other siblings huddling in the corner of that small living room had to be the targets of an angry mother's tirade. I'd never heard children verbally attacked with such venom and it broke my heart.  I think it was at that moment that I knew we had to do whatever we could to reach as many of those children from our community as we possibly could.  They needed to know that they had value and were loved.  Vacation Bible School became a vehicle for that.

And so for the last several summers we have put everything we possibly could into making that one week in August something that the children would anticipate all year long.  Those working on the sets and props begin several weeks earlier, aiming for what they call the "wow factor."  We've had ships and caves and castles and mountains filling our sanctuary, and there is no greater reward than watching the children's faces fill with awe as they come through the "portal" on that first night.  

And that's why I wanted that No Hum Drum so badly.  Besides it being a truly cool prop, ending the evening on a high note ups the odds that they'll be back for more and hopefully bring some friends with them. But after visiting a couple of hardware stores and calculating the cost, disappointedly I figured I'd have to come up with something else.    
   
A few years ago our church bought an old building across the street and had it demolished to put in a parking lot.  At the far end of that parking lot there is a grassy area where I take Rudy the dog every morning for a few minutes and sometimes in the evening, a routine that we've been following for at least two years or more.  It was on the Monday morning exactly a week before the start of our VBS that I saw them. Two long pieces of PVC piping were protruding from the grass just a few feet away from where I stood, both the exact length and width that I needed for my No Hum Drum.

When I ran to show Larry what I had found he reminded me that the pipes had been there the entire time.  I knew he was right.  I was aware that there were a couple of dirty PVC pipes lying in the grass close to where Rudy and I walk each morning.  But on this particular day I actually saw them, I mean really saw them.  At first I couldn't quite believe that the very thing I needed to make that prop was right in front of me and had been all along.  But my Father, knowing that I would have need of that very thing in the summer of this year, already had it covered.  It just took me awhile to realize that he had.    

The No Hum Drum got made just in time.  A friend cut one of the pipes into the exact lengths I needed and another was so enthusiastic about the project that he bought the elbows needed to connect it all.  A nice bright paint job finished it off.   And as expected, the No Hum Drum was the perfect ending to that first night of Vacation Bible School.  The kids loved it. And just in case you're wondering exactly what this thing does, just ask anyone who was there. I'm sure they'd be glad to tell you all about it!       

The No Hum Drum finally completed