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.