A Few Words In Closing

**One of Tom's final wishes before his death was to write one more article for the Asheville Citizen-Times, and to edit a version of it for the St. James Episcopal Church newsletter. He asked that the St. James version of the article be posted here after his death. Tom died gently and peacefully at the Hospice Elizabeth House in Hendersonville, NC on January 24th, 2013. A memorial service will be held Monday, January 28th, at 3pm at St. James Episcopal Church in Hendersonville.**

This is my last article for the St. James Epistle. I developed pneumonia in early January and I did not recover fully. By the time you read this, I may be dead. I realize that is blunt, but I want to be clear. Here are a few thoughts before I go.

I would like to thank Amy Williford, the editor of the St. James Epistle, for reminding me each month when my article was due and being gracious about it when it was late. Thank you to all of my St. James family. You have given me the love of God these last six years that I have been ill. You have been Jesus to me and I have been Jesus to you.  You fed me when I was hungry, comforted me when I was lonely, gave me shelter when I was lost,  and befriended me when I was dying. You have sacrificed yourselves in a hundred little ways and brought healing. You have been magnificent.

I decided not to get a tracheostomy and ventilator because I would had to move away. A feeding tube crisis in December convinced me I needed to stay near friends who could help me. I had made bold statements about living as long as God could use or teach me. They were modified by my fear of dying alone.

Why didn't God heal me? I prayed fervently and frequently for my healing, as did many others, but healing did not come. Perhaps God saved me from the Alzheimer's disease that started to take away my mother's mind when she was my age. Perhaps God taught me to find hope in hard times. Perhaps God could use me best as a man who is dying rather than living.

I am not afraid of dying and death. I am not afraid of dying because I am in hospice care. The caring and professional staff will make sure I die in comfort and dignity. I am not afraid of death because I am in the care of God who has promised my resurrection to eternal life.

I feel sad about leaving my daughters and their futures behind. They will be sad I will not be there for their weddings, children and love. I hope they will take comfort in the words of C.S. Lewis, "there are far, far better things ahead than any we leave behind."

My daughters, Emma and Catherine, were tucking me in bed here at hospice and Catherine was concerned about the position of my head on the pillow. She asked, "is your head in a good place?" As soon as she said it we all laughed at the double meaning. Yes, Emma and Catherine and everyone, my head is in a good place. Thanks be to God. Amen. 

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.