Noreen Hyslop photo Rev. Vaughn Wright and his wife, Nancy, face the daily challenges of an ALS diagnosis with profound faith, a loving family and a generous and caring church community.

The Reverend Vaughn Wright pastors Dexter's First Christian Church. He entered the pastoral role there in 1992 and has been credited with much of the success and growth of the church since his arrival. He is well known in the area, not only for the inspiration he brings to his role as a minister, but as much for his subtle humor and quiet, unassuming nature that seems to instill a sense of peace in those he serves.

The reverend's name has continually evoked a sense of pride by association in the community. To know him is to know someone you know is "on the right track" in life. His marriage to wife, Nancy, has endured 33 years. They are one of those unique couples who speak to each other without words. They share and take great pride in two grown sons, Shannon and Shawn. So, it is ironic that suddenly the name "Vaughn Wright" evokes something that is very ugly; something with which we want no association at all, and yet there it is.

Vaughn Wright has ALS, also known as Lou Gehrigs's Disease. The diagnosis came from the renowned Mayo Clinic in Rochester, Minnesota in January of 2006, following nerve conduction tests, spinal taps, MRIs, EMGs and as Wright attests, "a zillion blood tests."

The onset of ALS for Wright came without warning and without mercy. Initially, he felt a weakness in his legs while attending the church's General Assembly in Portland, Oregon.

"One day I walked all around that city without a problem and the next day I was feeling weakness in my legs with every step I took," he recalls. "I attributed it to just being tired. I'd had some early morning fire calls and the full-time ministry and the trip."

Nancy Wright recalls, "I remember Vaughn coming in and telling me how tired he was and of his legs bothering him. I felt he was overdoing with his hectic schedule. We never imagined it was anything beyond being tired and overstressed."

Of his initial response to the diagnosis, Wright says, "My first reaction was fear. Nancy and I had a good cry together at Mayo. We were well aware by the time of the diagnosis what it meant, and it wasn't pretty. I recall thinking, 'Why me, God?' and I've had an ongoing argument with God ever since. But, in my more sane moments, I ask, 'Why not me, God?'"

"I'm sure I had a period of denial," he admits. "And of course, you live on the hope that you have almost anything but ALS."

Nancy recalls, "At first you're not fully able to comprehend what it means. It's almost like going into shock. Your mind and body can only handle so much at one time so you pretty much shut out most of it until a later time. All of it together is just too devastating, so I just digest a little at a time."

"Initially my reaction was to hope for a miracle and Vaughn would be healed. It's difficult to give up on hope."

Although reality has set in over the past year, Nancy Wright admits, "I still pray every day for a miracle, for healing, for a cure or treatment and I cherish each day because today is truly a gift from God."

Amyotrophic lateral sclerosis is ugly indeed. It is a progressive, fatal, neurodegenerative disease caused by the degeneration of motor neurons, the nerve cells in the central nervous system. Those nerve cells control voluntary muscle movement. Simply stated, the disorder causes the muscles to atrophy. Upper and lower body neurons degenerate and die, rendering them unable to send messages to the muscles. Eventually, the brain loses the ability to initiate and control voluntary movement. The good news, depending upon how one might view it, is that the mental capacity of the patient is not diminished. While the body cannot react, the mind remains fully functional. It is an unforgiving and unrelenting disease.

Scientists have yet to find a definitive cause for ALS, but very recent studies suggest a link between the disease and the use of statin drugs that are often prescribed to patients with elevated cholesterol levels. Wright is one of an army of patients who has taken Lipitor to correct an elevated cholesterol count. While on the drug, Wright says, he experienced extreme muscle aches and fatigue, and his blood pressure dropped to a very dangerous 70/50. He also developed an essential tremor. Doctors failed to link the symptoms with the Lipitor medication at first and Vaughn continued to take the drug from March until November of 2005. As soon as he was taken off of Lipitor, his condition improved. It was only a matter of weeks, though, that the ALS symptoms presented themselves and the diagnosis came shortly thereafter. The Wrights believe that Lipitor was a contributing factor to the onset of his ALS.

"What is so striking here ," Nancy reports, "is that Vaughn's cholesterol levels were just borderline. It wasn't that his counts were soaring."

At the time of his ALS diagnosis, Vaughn Wright was in unusually fit condition. "For years, I got up at 4 a.m., drove to Poplar Bluff to swim one and one half miles and was at work by 8 a.m." He also made it a practice to walk or hike at least two miles almost daily, and besides his ministerial duties, he was a volunteer and chaplain for the Dexter Fire Department, a position he still holds. So, the transition from the level of activity to which Wright had been accustomed to the confines of a wheelchair has not been without emotional pain, not to mention the physical toll that ALS takes on its victims.

"I can still walk very short distances with a cane," says Wright, "but I have a balance problem and prefer someone holding my right hand as I walk with my cane on the left side."

Expounding on the frustrations that come with the ALS package, Wright says, "You wake up for a new day to discover that what you could do yesterday, you can't do today."

"I have a cane, two wheelchairs, two electric wheelchairs, a couple of lift chairs and a scooter," he explains.

One of those chairs was obtained through the MDA organization, whose job it is to help secure appropriate devices for ALS patients in order to make the day-to-day experience of living with the disease a little easier. It's the "Cadillac" of wheelchair devices and comes at a staggering cost of $48,000.

"It drives much like a forklift," explains its pilot, "and so it's taken me quite awhile and several scratched doors in the learning process!"

Incredibly, the chair is such state of the art that, according to Wright, "It can do about anything including run from just your breath or the blinking of an eyelid. It can stand you completely up or lay you down so that your feet are higher than your head."

"It's an amazing piece of machinery," says Wright, "and I'm so honored to have it at my disposal, but I'd give anything (except Nancy)," he chides, "to not need it."

Of Vaughn's access to treatment, his wife says, "We are so blessed to be close to St. Louis. We report to Washington University Advanced Medical Center to Dr. Alan Pestronk, one of the leading ALS doctors in the nation."

The Wright family, a close-knit society of their own, has come together in support of their son, brother, father and husband. Even when their physical presence is not apparent, their messages help to carry Vaughn through the difficult days. His own mother gave him something that hangs where he sees it several times a day. It reads, "Lord, help me remember that nothing is going to happen to me today that you and I cannot handle together."

"That's the way I live my life now," he admits.

Without the help of his congregation, friends and family, Wright explains, he cannot begin to imagine getting through the onset, the diagnosis and thus far the daily living with ALS. "Dexter is a wonderful community filled with a lot of loving and compassionate people. I thank all of them for the prayers, the support, the food gifts that have been shared and for encouraging me and being there for me."

An anonymous benefactor has even covered nearly all of the medical expenses that were not picked up through the Wright's insurance plan over the past year. ALS is a financially draining disease.

"It's a most humbling experience, Wright explains, "when you know that you've been given so much. I am a blessed man."

"I get by with a lot of prayer, mine and others," he says. "It means a lot to a person to have so many people praying for you. I can feel it."

"We all know that at some point in this life," this humbled minister states, "we are all going to die. We cover it up with a lot of life's activities and the things we think are important in our society. But the reality is we are human beings and God is God."

Wright continues, "We all picture God differently, but when I think about God I think about God's unconditional love for us. Then I think of God's forgiveness for all our transgressions. Then I think of God's 'everywhereness,' God's universal knowledge, God's infinite power and merciful nature, the infinity of God, the eternal perfection, God's justice and righteousness and back again to God's universal love. I think that a God like that can surely take care of a poor preacher."

Reverend Vaughn Wright says he gains inspiration from his faith, family and friends as he faces the daily challenges of ALS. Little does he realize how, with every ounce of inspiration he gains, all who know him are inspired tenfold.

Noreen Hyslop can be reached via email at nhyslop@dailystatesman.com or you may comment on this story at www.dailystatesman.com.