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.

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*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.