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!?