CHAPTER 1

A Life Filled With Blessings

Lou Gehrig, nicknamed the "Iron Horse," played 1st base forthe New York Yankees in the 1920's and 1930's. At his retirementceremony, he uttered these famous words: "Today I consider myselfto be the luckiest man on the face of the earth." At the time, he wasbattling ALS Syndrome which would come to be known as "LouGehrig's Disease."

Now in no way would I compare myself with Lou Gehrig, instature or in the severity of his illness. However, there is a sense inwhich the two illnesses are somewhat related. Individuals battlingALS over time lose muscle function, and as the disease worsens,they eventually lose the ability to breathe, resulting in their death.

With dystonia, people find certain muscles being over-active,causing them to twist and spasm in strange kinds of ways. UnlikeALS, dystonia rarely results in death. However, there is extremefrustration, difficulty in performing certain actions, and with somedystonias, chronic pain.

I must begin by acknowledging that my life has been filled withnumerous blessings. For the first 16 years of my life, I lived on afarm. I didn't particularly enjoy farm life, but looking back therewere so many wonderful experiences my three siblings and Ienjoyed which could have been found in no other environment.

I was blessed with two God-fearing parents who shared loveand modeled a strong faith to me, my older sister, and my twoyounger brothers. My Dad died in 2010, but as of the writing of thisbook, I am fortunate to have my Mom still with me.

I went to college at Taylor University where my faith maturedand became stronger, primarily due to two men. One was Don Odlewho was my golf coach for two years and one of the outstandingsmall college basketball coaches of his era. The other man was BobDavenport, a two-time All-American fullback in the 1950's, whowas the football coach at Taylor and directed a summer bicyclingprogram known as the Wandering Wheels.

I had the privilege of working for Bob and traveled with himand 40 other college guys in 1968 on a six-week, 4,000 mile biketrip from the Golden Gate Bridge in San Francisco to the Statue ofLiberty in New York. It was indeed an experience of a lifetime.

The cycling continued for the next nine years with theestablishment of my own group known as "The Spokesmen." From1969 until 1977, myself and the three members of my staff had theprivilege of influencing over 1,000 junior and senior high youth on15 major trips throughout the United States, England, and Europealong with numerous week-end bike trips.

I married my high school sweetheart just before my senioryear in college. I had ten wonderful years in education as a teacher,coach, and school administrator. It was during those years that Godblessed us with two sons, Aaron and Adam. They would grow upand marry two wonderful wives, who we think of as the daughterswe never had.

It was during the latter part of my years in education whenI felt God's call to pastoral ministry. We had three great years atAsbury Seminary in Kentucky. There I was blessed to learn underoutstanding professors and made life-long friends.

My first pastorate was in Greensburg, Indiana where I servedas the Associate Pastor for five years. The people there loved andnurtured our family, and it was during those years that I had theprivilege to take the first of three trips to Israel.

Our next pastorate was at Old Capitol United Methodist Churchin Corydon where I was the senior pastor of a dynamic congregation.They provided us with a beautiful parsonage to live in, and it wasthere that both boys finished high school. We completed a majoraddition and remodeling project at the church, and it was duringmy time in Corydon that I made the first of two mission trips toAfrica, experiences that changed my life and caused me to realizehow fortunate I was. Six people entered into full-time ministryduring my eight years in Corydon. It was at Old Capitol where mybattle with spasmodic dysphonia began in 1992.

I moved on to serve Franklin Grace UMC from 1997-2006.Despite my struggle with speaking, the church grew by 50 percent,and we built a large and beautiful two-story wing devoted tochildren and youth ministries. While serving in Franklin, I receiveda major grant from the Eli Lilly Foundation to take a three-month,once-in-a-lifetime trip through the western United States and toEngland to tour historical sites related to the founder of Methodism,John Wesley.

The people at Grace were wonderful to us, but during my lasttwo years there I developed blepharospasm and meige's syndrome,two more dystonias affecting my eyes and the muscles in my lowerface. The writer's cramp also became more severe. In 2006, thecombined effect of battling four dystonias forced me to ask myBishop for a medical disability leave.

While pastoring at Grace, I met a young woman who wasstudying at the Indiana University School of Medicine. I officiatedat her wedding to the grandson of one of my members. While inPhoenix a couple of years later, over dinner one evening with Saraand her husband, I learned she was doing an internship at the MayoClinic in Scottsdale.

It was her assistance that enabled me to quickly get into theMayo Clinic there (I had spoken with the Mayo Clinic in Jacksonville,Florida, only to find the soonest I could get an appointment was in 18months!). When I returned to Phoenix in November of 2005, theydetermined I would be a good candidate for Deep Brain Stimulationsurgery, a surgery they were beginning to do on patients sufferingfrom multiple dystonias.

During my eight years at Grace, I was also fortunate to becomegood friends with the wife of a retired Bishop in the UnitedMethodist Church. She provided the funds to cover the medicalcosts not covered by my insurance along with helping out with myexpenses during the month I spent at Mayo for DBS Surgery. I willbe forever grateful for her kindness.

I tried to return to ministry about a year after the DBS surgery,serving part-time at Dearborn Hills UMC. The people thereshowered us with love despite my disabilities and helped me tolearn that "I was not my illness," a lesson I find myself continuallyneeding to re-learn.

However, with the four dystonias, even this limited ministryproved too much for me to handle, and we had to leave the churchin 2010. God once again provided for our needs, helping us tolocate a lovely, three-bedroom home at a price we could afford inMooresville, Indiana.

I have often remarked at funeral services that there areultimately three things in life that truly matter: family, faith, andfriends. I have been extremely blessed with all three of these thingsgiven to me in abundance by a God who uses even our weaknessesfor His glory. I don't like living with my dystonias, but I can honestlysay that I have been richly blessed. Like Lou Gehrig, I can say today,"I am among the luckiest men on the face of the earth."

CHAPTER 2

The Onset of SpasmodicDysphonia

It was a warm Sunday morning in the spring of 1992. Myparents were visiting our family in Corydon and attended themorning worship service. The sermon was well-received and mycongregation was attentive, but I noticed I had great difficulty ingetting out my words. My voice had been somewhat "shaky" attimes during the past several years, but I attributed this simply tonerves.

Following lunch, my Dad and I were sitting at the kitchen table.I said to him, "Dad, I'm really scared. My speaking is getting worseevery day." To a preacher, one's voice is how he or she makes aliving.

By the following Sunday, during the early part of the service, Icould only get out about two of every five words, and what speech Ihad was very strained and required great effort on my part. I askedmy associate pastor to read my sermon that day and the followingthree Sundays while I searched for answers to the problem.

I went to an E.N.T. Doctor who did a throat exam and testedme for allergies. After about three weeks had passed, a lady in mycongregation came to me and said, "Rev. Mike, you sound just likemy husband did before he went for an experimental treatment atJohn's Hopkins Medical Center. Their family were among the firstpeople I had ministry with upon arriving at Old Capitol. The wayhis voice sounded, without any answers as to "why" this was takingplace, caused him to simply take off driving before returning homea couple of days later.

His wife gave me material to read about spasmodic dysphonia.I remember driving on the interstate in Louisville on the wayto making a hospital call as Mickey read the indicators of S.D.(spasmodic dysphonia). To each indicator, my answer was: "Yes,that's true of my condition."

I ask you, what are the odds of a member of my congregation of300 having the same rare illness as I did, an illness that affects lessthan ½ percent of the entire population! When I went back to thedoctor the next week, I said to him, "I think I know what's going on.I think I may have spasmodic dysphonia." The doctor agreed andscheduled an appointment for me at the Vanderbilt Voice Center inNashville, Tennessee.

When I arrived in Nashville, the doctors at the Voice Centerconfirmed the diagnosis of S.D. They explained that currently therewas no cure, but that injections of botulinum toxin into the smallmuscles that controlled the vocal chords would give me relief for aperiod of time. They said I was fortunate to have received a quickdiagnosis.

They told me that the average patient spent more than twoyears going from doctor to doctor trying to find out what waswrong. This illness was not well known in the field of medicine,and thus they received numerous incorrect diagnoses. In the end,many folks were told that the problem was simply "in their head,"and they were prescribed various psychotic medications. Theytold me of one lady who would literally shut herself in a closetat times because she could not speak in a way that others couldunderstand!

They set the date of my first botox injection for the followingday. Ironically, it was our 22nd wedding anniversary.

CHAPTER 3

Botox:The Poison That Helps

I distinctly remember going for my first botox injection. Surelybeing injected in the throat was something that would be painful.The nurses were pleasant and called me back into a room wherethey attached the end of two wires to my neck and forehead, leavingthe wires dangling around my neck.

Then they moved me to another room where I waited until itwas time for my injection. It was comforting to see the hallwayslined with gold records autographed by country music stars whohad been to the Voice Center for treatment of a variety of voiceproblems. Ironically, a man walked by the room where I waswaiting. Dressed totally in black, he stuck his head in the door andsaid "good morning" and then moved on. I turned to my wife andsaid, "That was Johnny Cash!"

Finally they came and got me. As they were walking me to thetreatment room, I wondered if this was what it felt like when beingescorted to the electric chair! When I arrived at the treatmentroom, they connected one wire to the syringe that held the botoxand the other wire to a device that recorded the sound of muscleactivity.

After discussing what dosage to put into the muscles on bothsides (a unit represents the amount of botox that would kill onelaboratory mouse)they decided on 2.5units per side, arather standardoption for a firsttreatment. Thedoctor injectedsome numbingmedication andthen inserted theneedle containing the botox. After about three minutes, the doctorfelt the needle was in the correct muscle and asked me to hold outan "eee" sound. I could hear a distinct crackling sound of increasedintensity coming from the device that recorded muscle activity. Thebotox was injected, and we moved on to the muscle controlling theother vocal chord. The entire process took only about fifteenminutes with hardly any discomfort. I was given a form to evaluatefour qualities related to my voice on a weekly basis, and then I wason my way home.

Over the next 20 years, botox and I would become very goodfriends. I came to realize that it was a treatment, not a cure. In simpleterms, botox works by creating a barrier between the muscle andthe nerve endings for a period of time. This barrier prevents theimpulse coming from the nerve to the muscle telling it to respondfrom being able to get through. Most people have a very weak voicefor about three weeks; then the voice becomes relatively normal forabout six weeks; and then the strain and effort to speak returns.

At that point, it is time to return for another injection. In onesense, it is similar to riding a roller coaster. At first you go up along hill (the weak and breathy stage), then you experience thethrill of the ride (the time when the voice is fairly normal), and thenthe coaster slows down and returns to its original starting point(analogous to the return of the strained voice I had at the beginning).I have ridden this roller coaster over 100 times during the past 20years.

I used to believe college professors who worked in researchwere wasting their time. I believed they should be in the classroomteaching students. But who would believe a toxic poison couldbe used to help treat a currently incurable disease! I now betterappreciate those devoted scientists, who through trial and error,help us find treatments and develop new medications to fight avariety of illnesses.

I was ecstatic when I returned home. I had a voice once again,free from the strain and effort I had originally experienced. Beforegoing to Vanderbilt, my doctor had asked if I would work with aspeech therapist for a few weeks. I felt foolish in her office as sheasked me to read children's books, even though I had great difficultyin getting out the words. Before my first botox shot, I was convincedshe believed my problem was all psychological in nature.

When I went back to see her three weeks following my injection,I walked into her office and said, in a clear and strong voice: "Pam,what would you like to talk about today?" Her jaw dropped as shewas shocked at the improvement in my voice, and she immediatelyreached for her tape recorder to make a recording. She was one ofthousands of trained professionals in the field of medicine who hadnever heard of spasmodic dysphonia.

I returned to preaching, but we soon discovered that in my casethe botox would last only about six weeks before the strained andeffortful voice would return with a vengeance. After about threeyears of this, in consultation with my doctor, we decided to do anerve avulsion surgery to paralyze one of the vocal chords. Thiswould leave us with only one "monster" to deal with after thesurgery instead of two!

Following the surgery, if the paralyzed chord ended up too farfrom a midline position, there would be a space between the twovocal chords when I spoke and my speech would be too weak andbreathy. If it ended up past a center position, the two vocal chordswould bang together resulting in a strained and effortful voice. Dr.Netterville explained it this way: the surgery was kind of like tryingto balance on a thin wire fence. Two subsequent medializationsurgeries were required to get the paralyzed vocal chord into aproper midline position.

However, with botox and the follow-up surgeries, combinedwith the help of my oldest son, a sound engineer who helped mefind the best headset microphone available, I was able to stay inministry for almost 20 more years.

Due to my voice limitations, I was now forced to learn a moreBiblical way of doing ministry through empowering the laity fortheir ministry. There was a quote that I would often use with mycongregation. I would tell them, "I may not be able to play myinstrument as well as before, but I can still conduct the orchestra!And an orchestra makes far more beautiful music than a soloist."

It may not always be perfect, but I had a voice once again thanksto the skilled doctors and nurses at Vanderbilt and a poison namedbotox—"a poison that helps!"