Cill Einne

A black-and-white photograph that is dear to me hangs on the wall of my room. It is a picture of the Cill Einne cemetery on one of the Aran Islands off the west coast of Ireland. I bought it from a street vendor during a festival about twelve years ago.

It is not a pretty picture. Twelve tombstones in black silhouette stand below a cloud-filled sky. Tall grass hides the graves. A grey sea defines the horizon and by it one can see that some of the gravestones are not quite vertical. The tombstones have been there a long time. The picture tells of a bleak, windswept loneliness.

The Cill Einne cemetery has existed for 1500 years and is still in use. Legend has it that Saint Enda, who brought Christianity to the island, is buried in an unmarked grave. An Internet search showed that Michael Kilmartin joined Saint Enda on December 6th.

The grave markers are topped by crosses and some of them are Celtic crosses. When Saint Enda arrived, he found what is called a "sun cross" symbol consisting of a circle surrounding a cross. It was used by the people of the island in their sun worship. According to legend, Saint Patrick extended the cross outside the circle to indicate the superiority of Christianity over pagan religion.

The power of death has been strong recently. I write this article in the aftermath of the shooting at the Sandy Hook Elementary School in Newtown, Connecticut. My cousin Paul died a few days ago. My beautiful Facebook friend, Tiziana Cardillo, has died from ALS. I have lived under the specter of death from ALS for nearly six years.

Christians understand that the power of death is limited. It does not have the final word. Death itself will die and be replaced by a glorious resurrection to eternal life. As a result, our grief at the time of death is profoundly changed. We grieve, "but not as those without hope," as St. Paul reminds us. We can grieve death without denial or despair because we, like our Lord, will live again.

There is much more to the picture than stark loneliness on a windswept island. On the contrary, the grave markers are sentinels of the faith and the souls they mark are our brothers and sisters in Christ. They wait with us for the return of our Lord who will raise them from the dead. No Christian cemetery is a place of despair, but rather a place of cherished faith and hope for eternity that will one day be fulfilled.

The Great Dance

I woke up and did not know where I was. It was cold. It was dark. I was curled up on a forest floor. I shivered a little. I got up, brushed the dirt and leaves off my clothes, and looked around. I saw a light a long way off through the trees and headed in that direction.

I stopped as if struck by lightning. I could walk! I could lift my arms and work my fingers! I said, "Hello," tentatively and shouted, "I can talk!" I spent the next half hour working my muscles and marveling at my strength. Then I walked toward the light again.

I came to a large clearing and had to cover my eyes. As my eyes adjusted to the light, I was amazed at what I saw. There in front of me were thousands of people dancing. They were of every skin color, young and old, male and female, and they were all moving in a marvelous dance. All the dancers, young and old, were healthy and vigorous. They were dancing to the most beautiful music I had ever heard. I slowly and uncertainly moved forward.

The dancing appeared incredibly complex. At times it was a knee-stomping barnyard square dance, and then a statelier ballroom dance, then a rumba, and then everyone danced his or her own native dance. A woman with red hair danced an Irish jig, a Maasai warrior jumped high, and a little Hawaiian girl did a hula.



My daughter, Emma, and friends in Haiti



The light came from the dancers' bodies. Each person had a beam of light shooting upward out of his or her head and shoulders. The colors were so intense that I wondered if I had ever seen color before. An Eskimo's glacial blue made me shiver. The French winemaker's purple was so inviting I could taste the grapes. The Amazonian farmer's green was so verdant I could smell the dripping wet jungle. All of the colored lights combined over our heads to create a dazzling white light. It lit up the forest around us and those in the trees who were watching, waiting, and deciding if they would join us.

The music had the same intense reality as the colors. I could not only hear it, I could taste it. It had never occurred to me that music had flavors, but it seemed perfectly normal to me now. When the girl did the hula, I heard Hawaiian drums and tasted pineapple. The Honduran guitar music tasted like coffee. Along with the tastes came the rich smells of chocolate, apples, peppermint, and many delicious meals. The more complex the music, the more complex were the tastes and smells.

Then the Master of the Dance appeared among us. His robe was almost blinding white. We recognized his face and bowed to him out of reverence and awe. When we heard him laugh, we raised our heads and saw that he was dancing. Everyone joined his dance. I was swept along and was surprised I had rhythm! He called us by our names and danced with each of us. Before he left, he invited us to come to his Great Feast.

The serious business of this place is Joy. I think I could live here forever.

 (This article was first published in the Asheville, NC Citizen-Times newspaper and is used here by permission.)

A Life or Death Decision

The result of my breathing test at my August ALS Clinic visit was poor. It was so poor that the time has come for me to decide if I will extend my life by getting a tracheotomy or refuse the tracheotomy and die within the next year. I knew this day would come, but when it did, I felt like I had been hit in the stomach.

A tracheotomy would be, in my case, a surgical procedure that will create an opening in my windpipe (trachea) in my neck below my Adam's apple (larynx). The surgeon will insert a tube to which a ventilator will be attached. The ventilator will take over from my weak chest muscles the work of bringing air into my lungs. For an ALS patient like me, a tracheotomy and a ventilator offer an extended life that may last for years. They also increase the chances of my reaching a locked-in state in which I cannot move a muscle.

I read an old survey that showed that well over 50% of ALS patients chose to die rather than get a tracheotomy and ventilator. If I make the same decision, I will get a doctor's referral to hospice care. I worked seven years as a hospice chaplain, so I know their compassionate and quality end-of-life care. I also know that dying from ALS can be comfortable and dignified. I would not have to struggle for breath. I would eventually fail asleep and not wake up.

This decision I have faced about dying within a few months or extending my life with less quality forced me to ask important questions. What is my life worth? What is my quality of life and what will it be on a ventilator? How much am I willing to endure to live longer? How will my decision affect my children? What do I really want? If I get the tracheotomy, am I doing it out of fear of death or to extend life? What is best for me?

At least I thought these were the important questions. There is a far more important question I must ask. What does God want me to do? I am a Christian. I am a follower of Jesus. I have given my life to God. I have not understood the full ramifications of that decision until now. My life is not my own to do with simply as I please. My life is to do with as God pleases.

This standard of behavior regarding end-of-life decisions is opposed to the spirit of our age. Secular culture tells us, "You are the master of your fate. You are in control of your life. What matters is that you are comfortable with your decision. It belongs to you alone."

Christians have a different standard for their behavior. It is not a set of rules or a philosophy. Our standard is the life of Jesus, who did all things to please his Father. His end-of-life decision was "not my will, but Thine be done." His decision took him to the cross and a grisly death. His decision was vindicated by the resurrection.

When I look at my decision in this way, it becomes much simpler. God is using me to help people, primarily through my writing, but in other ways, too. God is teaching and shaping me into the likeness of Jesus. As long as God can use me and shape me, I want to live. When the time comes that I can no longer serve God or become more like Jesus, it will be time to surrender my spirit to God.

My decision to extend my life may take me to a locked-in state. I may find myself, like Jesus on the cross, unable to move or breathe. Jesus suffered this death for me. I am willing to suffer this death for him.

(This article was first published in the Asheville, North Carolina Citizen-Times newspaper and is used here by permission.)

Families with ALS value every second of life

A few months ago, I wrote in this column, "The worst thing about ALS is knowing that if I die, I will leave my daughters behind. The best thing about ALS is knowing that they will be okay." On my blog and on Facebook I posted a picture of the two of them, now adults, hugging. One of the reasons I know they will be fine if I die is because they have each other. About a week later, I realized that I had been insensitive to my Facebook friends who are members of families that have ALS.

I was diagnosed with ALS (Lou Gehrig's disease) in February 2007. The disease has robbed me of my ability to walk, talk, eat, hug, and take care of myself. I live in a nursing home and spend all day in a power wheelchair.

Things could be worse. Things could be a lot worse. I could be waiting for and dreading the news that one or both of my daughters have been diagnosed with the same disease. About ten percent of ALS cases are called "familial" because they are inherited through family bloodlines. These families have the sad history of loved ones through the generations dying from ALS. They have the terrifying prospect of watching their children get ALS.

My type of ALS is called "sporadic" because it attacked me without any genealogical warning. My friend, Michelle Farr, is not so fortunate. Her husband's family has the mutated gene that causes ALS. Michelle writes, "The Farr Family has fought this disease for over 12 generations with at least 50% of each generation affected by the disease. We have lost count of the affected as the number grew too large over the last 400 years. This family understands all too well the devastation that this disease can cause families and many live in fear for their family members and wonder ‘who is next’ on a daily basis."




Michelle Farr, her husband, and their boys

 

Michelle and her husband have two cute blonde-headed boys in elementary school. The younger boy is mischievous and his older brother is more serious. They each have a 50-50 chance of getting ALS. Michelle writes, "We all work together to stay strong and support as best we can. We laugh every day and value every second of life."

Michelle has asked me to ask you to contribute to two organizations which work to find a cure for ALS: The Robert Packard Center at Johns Hopkins University (www.alscenter.org) and the ALS Therapy Development Institute (www.als.net).

Note: The day after this article was published in the newspaper, another member of the Farr family, Dennis Myrick, died of ALS.

(This article was first published in the Asheville NC Citizen-Times newspaper and is used here by permission.)

Is Lou Gehrig's Disease a Joke?

(This article was first published in the Asheville, NC Citizen-Times newspaper and is used here by permission.)

Movie scriptwriter Seth McFarlane thinks it is. Actor Mark Wahlberg thinks it is, too.

I am referring to a joke in the recently released movie, Ted. The Wahlberg character says, "I hope you get Lou Gehrig's disease." That's it. That's the joke: "I hope you get Lou Gehrig's disease." As of July 29th, the film had earned over 233 million dollars. A lot of people have laughed at this joke.

I don't think the joke is funny. I have suffered with Lou Gehrig's disease, also known as ALS, since I was diagnosed in early February 2007. The disease has taken from me my abilities to walk, talk, eat, or take care of myself. As a result, I can no longer work, drive a car, or live in my own home. ALS is a fatal illness. It will take my life unless a cure is found.

Of course, I would not think the joke was funny if it was about cancer, which my father survived, or heart disease, which killed him. I would not laugh if it was about Alzheimer's disease, which claimed my mother's mind and then her life. I would not be amused if the joke was about diabetes or rheumatoid arthritis or cystic fibrosis or Parkinson's disease or leukemia or any of the other diseases that plague the human race.

The ALS Association issued a statement describing the joke as "tasteless." The ALS Therapy Development Institute expressed "outrage." Eric Valor, a man with ALS, started a petition calling on McFarlane and Wahlberg to understand the "living hell that is Lou Gehrig's disease." They didn't think the joke was funny either.

Seth McFarlane issued a statement expressing compassion for ALS victims. He went on to defend the joke rather than apologize for it. He did not respond to requests to give money to ALS research, tour an ALS research facility, or meet people with ALS.

Maybe I should let it go. It is only a movie. Other movies are now box office leaders. There is some consolation that the words "Lou Gehrig's disease" are known well enough to be included in a movie.

But I can't give it up. It hits too close to home. It hurts people I care about.

Michelle Farr is beautiful in appearance and spirit. Her husband inherited a gene from his parents that gives him and their children a fifty-fifty chance of getting Lou Gehrig's disease. This happens in about ten percent of ALS cases. Michelle has done extensive research into her husband's family and found that over 400 members have died from the disease. She and her husband hope that their children will not get ALS. I met her through social media. Somehow she manages to smile in all her pictures.

I met a cute eight-year-old boy who has ALS. He smiles in all his pictures, too.

Lou Gehrig's disease is no laughing matter. Michelle and her children and the boy and his parents would agree.

I Love St. James Episcopal Church

(The following article was first published in the St. James Episcopal Church newsletter, The Epistle, and is used here by permission.)

I invited a friend to church recently. It wasn't hard. You should try it sometime.

She came to worship with me. I was able to look at our church anew through her eyes. This is what I saw:

* The Processional: We begin our worship when the cross is held high before us. It is an empty cross, a symbol of the resurrection of our Lord, so we know that our worship will be good news. The clergy do not lead the cross but follow it as we all do. The young people who carry the cross and the candles show that the young, the weak, and the dependent are valued among us.

* The Reading of Scripture: We value the Scriptures and believe that the Spirit speaks to us through them. We hear, read, and chant four readings from the Bible each Sunday. The Gospel is read within the congregation to show that Jesus came among us to love and save us. The words of Scripture shape our lives.

* The Preaching: We heard from Joel about the General Convention. He told us that the Episcopal Church is not perfect and that it needs to change. I am glad my friend heard this. The churches that claim to be perfect and need not change are useless. Or dangerous.

* The Nicene Creed: We recited an ancient creed that reminds us and tells others what we believe. We have received from our spiritual ancestors "the faith once delivered to the saints" and we will pass it on to our spiritual descendants.

* The Prayers of the People: We prayed for huge issues like justice and peace for the world, we prayed for individuals celebrating birthdays, and we prayed for most everything in-between. We prayed for the Church Universal and the church particular, St. James. We prayed for our president, governor, and mayor whether we liked them or not. We prayed for our clergy and the sick and the dead and those in the military who are in danger. You can learn a lot about what is important to people when you hear them pray.

* The Passing of the Peace: Then, and during the coffee hour, my friend was greeted warmly and received hugs from people who knew her. I did not have to tell her we are a loving church. We showed her.

* The Service of the Eucharist: We heard the great story of God's creation of the universe and ourselves, our falling away from God, and Jesus' ministry to restore our relationship with God. Then we ate the bread and drank the wine. My friend, although a baptized Christian, chose not to partake. She is always invited and always welcome.

* The Prayer Team: My friend joined me for prayer in the chapel at the end of the service. People who loved me gathered around my chair. They put their hands on my shoulders and arms, held my hands, and prayed for my healing with love and hope. I am glad my friend saw their loving prayers.

I do not think that my friend understood all that she saw when she worshipped with us. If she returns, we can begin to explain these things to her. I do know that we helped her. She told me so. The experience helped me, too, for it helped me love St. James Episcopal Church.

As I said, I invited a friend to church. You should try it sometime.

Of Diapers, Catheters, and Other Unmentionables

 (This article was first published in the Asheville, NC Citizen-Times newspaper and is used here by permission.)

I have tried to be honest and open in these articles but I have been holding out on you. Partly out of embarrassment and partly unsure how to write about it, I have not told you that I have been wearing a diaper for several months. Well, not the same diaper for several months. More like a series of diapers. See what I mean?

My illness, ALS (Lou Gehrig's disease), causes muscle weakness throughout my body. This includes the external urethral sphincter, a voluntary muscle which, when contracted, shuts off the flow of urine from the bladder. My sphincter became weak and I became like the little boy who jumped from one foot to the other, trying to "hold it," but with decreasing success. I became "incontinent of bladder." In other words, I wet my shorts and my pants and the cushion I was sitting on. It was time for a diaper.

By the way, and off the subject, I read somewhere that birds do not have sphincters. When they have to go, they go wherever they are. So if you are ever the recipient of an unwelcome gift from the sky, it is not an act of God or a bird that dislikes you. It is an accident and the bird so far as we know may be very sorry. Don't take it personally.

I started wearing a diaper several months ago. The staff at my nursing home wants me to call it a "brief," but I refuse. I know what a diaper looks like from changing my daughters' diapers years ago. My diapers are exactly like theirs, except that they are not small, pink, or have cartoon characters around the waistband. Besides, a brief is what a lawyer writes. There is a lawyer joke here somewhere regarding the contents of these two kinds of briefs. I will resist.

The diapers worked well for a while. Then the muscle weakened more. The staff had to change my diaper two or three times a day and this was after foot jumping for several minutes. A couple of weeks ago I gave in to the inevitable and requested a catheter and a bag to collect my urine. There are two kinds of catheters. A Foley catheter is a tube goes inside the body and can be a highway for urinary tract infections. I chose the option of a condom catheter that fits over me. The inside of the condom has an adhesive that holds it in place. Fortunately, it is not super glue. A tube starts at the condom, goes down my leg inside my pants, exits at the bottom of my pants leg, and goes into a bag to hold the urine.

Frankly, this new arrangement is great. No more trying to hold it while jumping from one foot to the other. No more multiple diaper changes in a day. I am free as a bird to pee whenever I want!

The Worst and Best Things about Having ALS.

(This article first appeared in the Asheville, NC Citizen-Times newspaper and is used here by permission.)

The worst thing about having ALS is not being able to tell people, "I love you."

The best thing about having ALS is hearing so many people say they love me.

The worst thing about having ALS is not being able to walk.

The best thing about having ALS is people who take me where I want to go.

The worst thing about having ALS is leaving my daughters behind if I die.

The best thing about having ALS is knowing they will be okay.*

The worst thing about having ALS is not being able to walk and talk.

The best thing about having ALS is the technology that takes me where I want to go and communicate when I get there.

The worst thing about having ALS is the friends who have drifted away.

The best thing about having ALS is the friends who have stayed.

The worst thing about having ALS was believing God was absent and knew nothing of my helplessness, my inability to move, and my struggles to breathe.

The best thing about having ALS is realizing that God is with me and knows exactly what it is like to be helpless, to be unable to move, and to struggle to breathe.

The worst thing about having ALS is believing I may die.

The best thing about having ALS is believing that if I die, the battle will be over and a new day will dawn.

The worst thing about having ALS was believing I was all alone with the disease.

The best thing about having ALS is learning that the many others touched by the disease and I can support each other.

The worst thing about having ALS is believing that if I die, my life will be over.

The best thing about having ALS is believing that if I die, my life will continue in a better place.

__________
*About 10% of ALS cases are genetically inherited. These families can name several members who have died from ALS and anxiously await the diagnosis of one or more of their children. They cannot say, as I do, that their daughters "will be okay." 

To Tell the Truth

(This article first appeared in Asheville, NC Citizen-Times newspaper and is used here by permission.)

 I have written a lot about the gifts I have received because I have ALS (Lou Gehrig's disease). I have a new appreciation for living in the present rather than regretting the past or worrying about the future. My friends and my church have given me a tremendous outpouring of love and support. My behavior and attitudes have come under a microscope and slowly but surely have improved. My daughters tell me that I am a better father. I pray more. My faith is stronger.

Words cannot adequately express my gratitude for the help I have received. Members of my church fed me, got me in and out of bed, and took me to worship when I was still living at home. I am grateful for the good care I get now that I am in a nursing home. The staff at the Carolinas Medical Center ALS Clinic have kept me alive and lightened the burden of the disease every way they can. The Jim "Catfish" Hunter (NC) Chapter of the ALS Association has encouraged me with personal visits, provided grants for in-home care and transportation to my Clinic, and been a voice of advocacy with lawmakers in Washington, D.C.

To be honest with you and myself, I must add one more thing. I hate ALS. I hate what it has stolen from me. I cannot walk, talk, eat, kiss, hug, or hold a hand. I do not have the strength to go to my older daughter's graduation from college or tell her I am proud of her except by typing it. My younger daughter, who lives nearby, has to visit me in a nursing home. I cannot kiss my daughters' cheeks, hold them in my arms, or tell them I love them.

I hate what ALS has done to my friends in the ALS community. Every week there is news of another brave soul who has lost his or her battle to this fatal and incurable illness. Left behind are grieving spouses and children, some of whom are quite young. It is the women, mostly, who stay in touch after their loved ones die, sharing their grief and attempts to move on with their lives. It makes for heartbreaking reading.

Hating something gives it power over oneself. Every moment spent hating is one less moment loving others and enjoying life. Hatred hurts the hater more than the hated. Hatred is not good for the soul, yet I find that I must express my hatred of ALS on occasion. They say, "Depression is anger turned inward." If I hold all my anger inside about ALS, I get depressed and sick. I know it is time to get angry when all my good humor and serenity in the face of this devastating disease begin to sound hollow to me. The good humor and serenity are true, thanks be to God, but they are not the whole story. I have tried to be truthful in these articles and I will continue to tell the truth as well as I can.

To tell the truth, I hate ALS.

The 2012 Charlotte Walk to Defeat ALS

We won the award for "Best Team Bandana."

The Swift Walkers team raised over $5500 for the Jim "Catfish" Hunter Chapter of the National ALS Association. Along with my daughter Emma's fundraising of $2000, we contributed $7500 for research, patient care, advocacy, and awareness of ALS (Lou Gehrig's disease). I want to thank the over 100 contributors who made this possible.

I have lived over five years with ALS!

Something over 2000 people participated in the Walk. The final numbers are not in, but at least $250,000 was raised by 120 Walk teams. It was a great event. See you next year!

A Simple Act of Love

(The following article first appeared in The Epistle, the newsletter of St. James Episcopal Church in Hendersonville, North Carolina.)

ALS, also known as Lou Gehrig's disease, attacks the nerves that lead to the voluntary muscles. When the nerves die, the muscles atrophy and become useless. The sense of touch is unaffected. I can feel a kiss on my cheek but I cannot raise my arms to hug or shake a hand.

The disease has chipped away at my body since I was diagnosed in February 2007. I enjoyed being six foot three inches tall and able to hike and kayak. When I started using a walker, my sense of physicality began to erode. This erosion continued through successive stages of using a wheelchair, a scooter, and now a power wheelchair which someone else has to move for me. The most recent blow to my appearance and sense of self is that I have started to drool. When I was looking for a nursing home to move into, I turned one down because there were "too many droolers in the hallway." It is an ironic lesson to me about my judgment that I have become a "drooler" myself. I hate it.

I take an anti-secretion pill before I come to worship at St. James. Sometimes it works and sometimes it doesn't. Several weeks ago I was alone and started coughing during worship. I was choking on my saliva. When I got my coughing under control, I had drooled on my chin and shirt.

As I was sitting there with a wet chin and shirt and wondering what to do, a woman came to me and asked if I was alright. When she saw my plight, she got some tissues and wiped the spittle off my chin and shirt. She was not embarrassed and since she wasn't, neither was I. As she was doing it, she said, "We love you, Tom." Then she stood alongside me for a moment, not staring at me because that would have been awkward, but stood watching the worship. She was making sure I was okay before she left. I was okay and filled with gratitude. She checked on me again a few minutes later.

A lot of wonderful (full of wonder) things happen at St. James Episcopal Church during worship on a Sunday morning. We rise to worship and sing praises to God. We hear several readings of scripture and hear a message of application and inspiration. We pray together and pass the peace. We confess our sins and receive forgiveness. We eat and experience the glories of the Eucharist. Finally, we are sent into the world to serve our Lord. If you stop and think about what we do on a Sunday morning--communicate intimately with the Creator of the universe--it is spectacular.

Also spectacular was the simple act of love the woman, my friend, gave to me when she wiped the saliva off my chin. Many of you give me similar simple acts of love. These deeds of lived faith lift me up far beyond six foot three inches. I think that is full of wonder, too.

Happy April Fools' Day Nursing Home Humor

(This article first appeared in the Asheville, North Carolina Citizen-Times newspaper on 1 April 2012 and is used here by permission.)

Few people would consider a nursing home a hotbed of hilarity, but humor can happen. Here below is what happens when you have happy happenstance. Hooray.

My hands and arms are mostly useless due to ALS, so when I need the urinal, I call for help. As soon as I feel like I need to go, I press a button with my head that rings a bell in the hallway outside my room. I have noticed that when I hear the bell, suddenly I REALLY NEED TO GO! I have decided that I must have Pavlov's bladder.

An older gentleman was walking down the hallway one day with the zipper of his pants wide open. A nurse noticed and told him about it. He said, "Honey, when the horse can't get out of the barn, there is no reason to worry about leaving the barn door open."

A CNA (Certified Nursing Assistant) was brushing my teeth and said to me, "I have worked here for three months and this is the first time I have brushed teeth inside someone's mouth."

CNA students from Blue Ridge Community College get hands-on experience by helping with patient care in my nursing home. Several have shaved my face, although "shave" is not the right word. They are so gentle they barely wipe the shaving cream off my face. I assumed that they were worried about cutting me with the razor but I was wrong. Prior to coming to shave me they had practiced shaving a balloon. They were not worried about cutting me. They were afraid I was going to pop!



I live across the street from a llama farm.



I get my nutrition through a feeding tube into my stomach. A pump regulates the flow rate, usually 125 cc per hour, and the number is displayed on front of the pump. One day I was behind on the amount so the nurse doubled the flow rate to 250 cc per hour. A CNA came into my room, saw the increased rate, and said, "Oh, you are getting fast food."

One of my CNAs is absolutely convinced that I will be cured of ALS. She prays for this every day. Although she hopes for a miraculous healing, she realizes the cure may come through medical science. Referring to the story of Balaam in the Hebrew Scriptures, she said, "If God can use a donkey, He can use a doctor."

The funniest thing that has happened during my tenure in my nursing home occurred during the first Christmas season I was here. A CNA came to give me a bad bath. She was singing Christmas carols as she worked. At the same instant that she rolled me on my side to wash my bottom, she sang, "Do you see what I see?" I burst out laughing. She went through incomprehension to shock at realizing what she had done to embarrassment to finally, laughter, when she saw I was not upset. We laughed together for at least five minutes. It was a great Christmas gift.

Who knew a nursing home could be such a funny place!?

I Have ALS but ALS does not Have Me

(The following article first appeared in the Asheville (NC) Citizen-Times newspaper on 4 March 2012.)

Amyotrophic Lateral Sclerosis (ALS) attacks the nerves that lead to voluntary muscles. When the nerves die, the muscles they control wither away to uselessness. The illness ended the career of Lou Gehrig, the great New York Yankees' first baseman. It is also known as Lou Gehrig's disease in the United States and Canada.

People with ALS (PALS) lose muscle function throughout their bodies, leaving them unable to walk, talk, swallow, or move their limbs. Mental ability is left intact for most PALS and so is the sense of touch. They watch their bodies deteriorate. They feel the itch that cannot be scratched and the cramped leg that cannot be moved. A great deal of research into the cause and cure for ALS is in progress but so far neither has been found. There are 30,000 people in the United States with ALS and most of them will die from the disease within two to five years of their diagnosis.

When I was diagnosed with ALS a little over five years ago, I thought my life was over. I remember thinking that everyone else was "in the land of the living," but I was "in the land of the dying." I told my daughters and friends that I would "live as long as I can as well as I can." I had no idea how long that would be. I did not think I would live five more years. I made arrangements for my funeral.

I have reason to celebrate now that I did not foresee when I was diagnosed. I have lived beyond the five-year mark of having the disease. I have read that only 20% of ALS patients do that. I grieve for those who have died, especially my friends Jill H. and Jimmy M. I thank God for each new day of life.

The other reason for celebration is that there is more hope for a longer life and for a cure for PALS than ever before. Several drugs are in clinical trials to see if they will safely and effectively slow the progression of the disease. Stem cells have been created from adult skin cells. There is hope that stem cell therapy will cure ALS and even reverse the effects of the disease. I hope to see this in my lifetime.

An earlier Charlotte Walk to Defeat ALS. Come join us this year!

I would like you, my readers, to celebrate my passing of the five-year mark. Come join me as I take part in the 2012 Charlotte Walk to Defeat ALS on April 28th. There will be lots of teams and around two thousand people walking in this upbeat and fun event. We will be raising money for the Jim "Catfish" Hunter (NC) Chapter of the National ALS Association. The Catfish Chapter has helped me in many, many ways. I am most grateful that the Chapter pays for a van service that takes me to my quarterly ALS Clinic visit in Charlotte. I would not be alive without the Clinic and I would not get there without the help of the Jim "Catfish" Hunter Chapter.

My team is the Swift Walkers. Come join us for the easy 1.8 mile walk. Make a donation to the Catfish Chapter that will be used to help people like me, to fund research for a cure, and to raise awareness about the disease. Search on the Internet for the Charlotte ALS Walk to learn more about the event and go to http://webnc.alsa.org/goto/swiftwalkers to join my team or to make a donation. Thank you and see you at the Walk!

Healing Prayer

(The following article first appeared in the St. James Episcopal Church newsletter, The Epistle.)

With friends at St. James Episcopal Church, Hendersonville, North Carolina

If you attend the 9 o'clock service at St. James, you have seen me come to front of the sanctuary at the end of the Eucharist. I do not like drawing attention to myself in that way, but it is a sacred trip with a holy purpose. I come for healing prayer.

My helper drives my power chair into the chapel. There I am met by 4 or 5 people. Others join them and they gather around me. It feels good to be surrounded by people who love me. They put their hands on my shoulders and head and hold my hands. Then they pray for my healing from ALS. They tell me that they love me. They show me that I do not fight my illness alone.

These people are the St. James Intercessory Prayer Team. They pray with gentleness. They asked me first if they could touch me and how. They talked to me in advance how I would like them to pray. Two or more people who pray together in that way form an intimate relationship. Aware of this, they make sure that I am comfortable with what they are doing.

Although gentle, they are also bold. They accepted my request to pray for my physical healing. Each Sunday they pray that some part of my body will show returning strength or that my breathing will improve. A sign of improvement will encourage me and encourage them.

Jesus was a healer. He healed the blind, the sick, and the lame. He healed people who were possessed by demons and those who had seizures. He even raised the dead. His followers continued his healing ministry with great power as recorded in the book of The Acts of the Apostles. The healing ministry of the Church was frequent and widespread over the next three or four centuries. Although less reported since then, the Church has always exercised the gift of healing.

Jesus said about prayer, "Is there anyone among you, if a child asks for bread, will give a stone? Or if the child asks for a fish, will give a snake? If you then, who are evil, know how to give good gifts to your children, how much more will your Father in heaven give good things to those who ask him!" He told his disciples "to pray always and not lose heart" and "Very truly, I tell you, the one who believes in me will also do the works that I do and, in fact, will do greater works than these, because I am going to the Father. I will do whatever you ask in my name, so that the Father may be glorified in the Son. If in my name you ask me for anything, I will do it."

Prayer is a mystery in many ways and even more so is healing. We have nevertheless decided to take Jesus at his word about prayer and healing. It is a bold experiment of faith. I will let you know what happens.

Two Women Give Me a Shocking Experience!

I went to my ALS Clinic to get a nerve conduction test back in December. The test was to determine if I was a candidate for a Diaphragm Pacing System which is something like a pacemaker for my lungs. The test involved putting electrodes on my ribs and shocking a nerve in my neck. The shock was noticeable but not bad. I have done worse to myself when I replaced a wall outlet but forgot to flip the circuit breaker. That should explain my decision not to be an electrician.

The doctor and the nurse who administered the test were women. My arm was in the way when they put the electrodes on my ribs, so the attractive nurse who was assisting held my arm. She was also turning dials so she put my hand on my knee. At some point during the test I realized that a woman had placed my hand on her knee and another woman was shocking me with an electric current. This was a mixed message, to say the least. I have the following thoughts:

(1) I am sorely tempted to make a broad philosophical statement about the behavior of women. I will abstain because I am the father of two women, have many female friends, and most of my nursing home caregivers are women. Any such statement could be injurious to my health. Suffice it to say I have dated women like this. Ouch.

(2) I will never put my hand on a woman's knee again. Having reached that conclusion, I think we may have an addition to high school sexual abstinence programs. Bring teenaged boys one by one into a dimly lit room and seat them next to an attractive young lady. Turn on some mellow jazz heavy on saxophone. As soon as the boy touches the young lady on the knee or anywhere else, zap him. Repeat until the boy runs screaming from the room. In no time, the rate of teenaged pregnancies will drop, all the high school sports teams will have more than enough players, and stock in the electric company will see a meteoric rise. If we elect enough Republicans this Fall, I will present this idea before Congress.

(3) There may be a wee bit of exaggeration in this article. The staff at my ALS Clinic always treats me professionally and with care. I wish I had said to the attractive nurse, "I realize you are married, but when I had my hand on your knee I could swear I felt electricity!" I hope she reads this and laughs.

In other news, please help me raise money for the Jim "Catfish" Hunter (NC) Chapter of the National ALS Association. The Catfish Chapter is having a Walk to Defeat ALS in Charlotte on April 28th. Come join me at the Walk, contribute money for the cause, or become a fundraiser yourself. To find out how to do these things, contact me at tmswift1 at gmail.com. Thank you!

(This article first appeared in the Asheville, NC Citizen-Times newspaper.)

Unconditional Love

Valentine's Day celebrates romantic love. I want to write about a love that is deeper and more powerful. I want to write of unconditional love.

Unconditional love can support and sustain all other loves. It can hold a loving couple together when romance fades and companionship is strained. It can maintain a friendship when there are hurt feelings and all affection is gone. It can cement family relationships when differences in politics, religion, and lifestyles threaten to tear it apart.

Unconditional love is a decision to be made, not an emotion to be encouraged. It is an act of will to love "no matter what." There is no falling into this kind of love. It is a choice and, because it is a choice and not a feeling, it can be commanded. We are told to "Love God," "Love your neighbor," and even "Love your enemy."

Unconditional love is not easy to give. It is most easily recognized when it is given with self-sacrifice. The supreme example of unconditional love is the crucifixion of Jesus.

Unconditional love is not easy to receive because we do not trust it. We do not trust it because we believe every gift has a price, but unconditional love is a gift with no strings attached. We have learned through hard experience that declarations of love can be used to manipulate and subdue, but unconditional love wants only what is best for us. It seems too good to be true.

Unconditional love is not easy to receive because it can lead to a feeling of unworthiness. We shrink from this wonderful love because we know we are not wonderful. We do not deserve it. In time we learn that deserving this love is not the issue and, in fact, we cannot deserve it. We can only accept it.

Unconditional love depends upon the worthiness of the giver, not the recipient. Receiving unconditional love makes the recipient worthy. The unworthy recipient is transformed by unconditional love into a worthy giver, for once it has been received it can then be given.

Unconditional love is the most powerful force on earth. When we think of power, we think of bombs and bulldozers, but unconditional love does not force its way upon us. It can be rejected. When accepted, it has the power to change us from self-centered creatures into sons and daughters of God, bright shining as the Son.

All of Christianity is a response to God's unconditional love for us because God is love. God became human so that humans might become like God. In no other way is this more evident than by our ability to love as God loves. When we are filled with God's unconditional love, and it overflows from us to others, the world will be transformed and the Kingdom will come.

(This article first appeared in The Epistle, the newsletter of St. James Episcopal Church in Hendersonville, North Carolina.)

I Have Decided to Live, or Die Trying

 (The following article first appeared in the Asheville (NC) Citizen-Times newspaper.)

When I was a hospice chaplain, one of the people I served said to me, "I don't know whether I should prepare to live or prepare to die." For the past five years that I have had ALS (Lou Gehrig's disease), I have been preparing to die. I have had a change in plans. I have decided to prepare to live. There are several reasons for this change.

First, there are exciting developments in ALS research and treatment. For the first time in many years, there will be new drugs available to fight ALS. Four drugs that have shown promise in delaying the progression of the disease are in clinical trials. Stem cell research is proceeding well at Emory University in Atlanta and gives hope for reversing the effects of ALS. I do not know when these treatments will be available, but when they are, ALS patients will have hope for longer lives and a cure.

Second, the FDA has approved a Diaphragm Pacing System which is similar to a heart pacemaker. The System stimulates the diaphragm electrically to help the person breathe. It can delay the necessity for a tracheotomy for many months. I have been tested to see if I am a candidate for the System and I await the results.

Third, I have a Swedish mother and an Alabama sweetheart who are absolutely convinced that I will overcome ALS. When I get discouraged they encourage me with their hope, enthusiasm, and unconditional love. I have thought that unconditional love is the greatest force on earth. Now I know it.

Fourth, I have become a better advocate for my health care. This advocacy is both a cause and a result of my decision to live. I have pushed for small changes like getting a comfortable toilet chair to big ones like getting tested for the Diaphragm Pacing System. I am learning to take a more active role in my treatment and the results are good.

Fifth, I have decided to expand my faith in a healing God. I have decided to take God at His word and take seriously all the verses in scripture about the power of prayer. I have started to pray for my cure from ALS with more hope. I meet regularly with members of my church who pray for my healing.

When I told a friend I had been diagnosed with ALS, he said, "I don't know anyone who is more prepared to handle this than you are." God's gift of faith and my experience as a minister and chaplain have helped me accept the eventuality of my death to ALS. There is, however, a difference between accepting my death and being resigned to it. ALS may still kill me, but not because I have given up hope. Instead, I will be full of hope and faith and the love of friends, family, and God. If I go down, I will go down fighting.

Worship Defines My Reality, Not ALS

 (The following article first appeared in The Epistle, the newsletter of St. James Episcopal Church.)

For the last five years, ALS, also known as Lou Gehrig's disease, has been a constant presence in my life. It is a fatal illness characterized by decreasing muscle strength. I have watched myself lose the ability to walk, talk, eat, and lift my arms out of my lap. I had to resign from work and move out of my home into a nursing facility. My life is punctuated by quarterly trips to an ALS Clinic in Charlotte where the progress of the disease is assessed and treated. I sleep every night with a machine that helps me breathe. I spend much of every day connected to another machine that pumps nutrients into my stomach through a feeding tube. ALS is ever present, deciding for me what I can and cannot do. Some people might say that ALS determines the reality of my life.

They would be wrong. Worship at St. James Episcopal Church determines the reality of my life.

When the bell rings at the start of worship, a profoundly different reality begins. We enter into an experience that transcends time and place as we commune with our spiritual ancestors and descendants. A foretaste of heaven is spread before us. We sing praises to our Creator and God. We hear the words of God spoken to us and we speak our words to God in prayer. We eat spiritual food in the sacrament of Jesus' body and blood. We join the crucifixion and resurrection of our Lord. We await His return with eager expectation, for we are already partakers of eternal life. We are sent forth to serve our Lord with gladness and singleness of heart. We are strengthened to live as citizens of heaven on earth.

It might be more accurate to write that God determines my reality. While true, it is in worship that I experience the majesty of God in the liturgy, vaulted ceiling, and stained glass windows. It is in worship that I experience the intimacy of God in words heard and sacrament consumed. I associate with people I might not know otherwise who turn out to be my sisters and brothers in the faith. I learn that God loves me just as I am and helps me to become better than I am. In worship I am confronted by the tremendous mystery of a loving God. All of these things shape the reality of my life.

I have bet my life on the reality of God I find most fully expressed in worship. Every Sunday I vote with my presence in worship that the reality of God will be my reality. Not ALS or even the joy I find in friends and family will become more important to me than God.

I sit in the back at St. James in my power wheelchair and watch my brothers and sisters arrive for worship and take the sacrament. We have our stories of diseases to fight, children and grandchildren to love, marriages to make and sustain, lost loved ones to grieve, work struggles to overcome, loneliness to endure, and all the other circumstances of life that try to consume our attention. Distract us they will, but consume us they will not, for we have decided that our worship of God will define and create the reality of our lives.