O Holy Night! The stars were brightly shining

We are approaching the time of year when stargazing is particularly rewarding. If you look to the southeast tonight around 9 p.m. you should be able to see the Orion constellation. Orion is easy to find because three bright stars equal distances apart and in a straight line form his belt. According to legend, Orion was a mighty hunter. With the help of a star chart, you can see that he has a sword, a shield, and a club. In his right shoulder is the huge star Betelgeuse. It is so huge that if it took the place of our sun, which is 93 million miles away, Betelgeuse would extend beyond our orbit and almost to the orbit of Saturn. This is what I like about looking at the stars. It combines the legends of ancient people with the science of today. I have looked up and seen Orion, Taurus the Bull, and the Gemini Twins and regarded them as old friends.

Outer space is not a friendly place, however. It has frigid cold and inferno hot temperatures. It is full of black holes and dark matter, quasars and binary stars, novas and nebulae, many of which are safe only if viewed from a distance. Such distance is not hard to find in outer space. It is everywhere you look. The objects in space are so far apart that the distances between them are calculated in light years. A light year is the distance that light can travel in a year at the rate of 186,000 miles per second. Betelgeuse is 643 light years away from us. This means that the light of Betelgeuse we see today started traveling in our direction in the year 1368, over 120 years before Columbus sailed west in search of the West Indies. Even so, Betelgeuse is a near neighbor to us. The center of our Milky Way galaxy is nearly 30,000 light years away and there are billions of galaxies even farther away.

When I stretch out on a blanket underneath the stars and look heavenward, I am overwhelmed by my insignificance. What possible difference could my grain-of-sand little life make in the vast expanse of interstellar space? I have a shrinking feeling from the enormity of it all.

Three thousand years ago a Hebrew looked up at night and wrote, "The heavens declare the handiwork of God." The Hebrew people believed the Creator of the universe was involved in their lives and spoke to them through their prophets and in holy writings, miracles, and dreams. Some time later, a child was born among these people who many people believed was the Creator come to earth in human form. They wrote that "all things came into being through Him." Wise men, who were astrologers, came to see him when he was an infant. They who understood the stars paid homage to the One who created them. The child grew up to tell the people of the earth that the Creator of the universe loved them.

The Creator of Betelgeuse, the constellation Orion, the Milky Way galaxy, and all the billions of other galaxies loves us still. The message of the universe is not my insignificance, but the enormity of God. The stars show us the majesty and wonder of their Creator. The Child born under them shows us His love. It is my Creator's love that gives my life significance. That is a gift brighter than any star and greater than any universe.

"We look for the resurrection of the dead and the life of the world to come."

I started writing two months ago about the teachings of our faith that give me comfort as I face the end of my life. The first is the forgiveness of my sins and the resulting restored relationship with God. The second is the resurrection.

The resurrection of Jesus after his death is our model of what our own resurrections will be like. The authors of the gospels go to great lengths to show that the resurrected Jesus had a physical presence. He ate fish, started a fire, walked down a road, and offered his wrists and side to be touched. The resurrected body has physicality. God's experiment of joining body and spirit is not abandoned in the next life. It is perfected.

 I like that a lot. I have some pictures of myself before I became ill with ALS that I look at from time to time. In one I have just finished a kayaking trip in the Bahamas. For over a week, my friends and I kayaked from island to island, camped out under the stars, and enjoyed the beauty of God's creation. I am tanned and strong and confident in the picture. In another photograph I am out for a hike on the Appalachian Trail. It was good to be healthy, to eat good food, to hug my daughters, to kiss a woman, and stretch my legs on a mountain trail. I eagerly look forward to doing those things again.

N. T. Wright, an Anglican bishop, wrote about the afterlife in appealing terms in his book, Surprised by Hope. He emphasizes the new heaven and the new earth that we read about in Scripture. The Lord's Prayer which the Church has been praying for 20 centuries will finally be fulfilled. "Thy kingdom come, Thy will be done, on earth as it is in heaven," will be a reality. The earth will be put right and we who are willing to submit ourselves to God will enjoy a new Eden. (I assume we will have an updated wardrobe.) I like this idea, too. The earth is a beautiful place with magnificent opportunities for happiness. A corollary to this idea is that every good deed we do here and now will make a positive difference there and then. Nothing good will be lost in the new creation.

In my opinion, and I could be wrong, the streets of gold and the gates of pearl we see in the book of Revelation are a metaphor. Heaven will be so wonderful that the most precious things on earth--gold and pearls--will be used to pave the streets and for hardware on doorways. The insipid picture of heaven that includes clouds and harps and white clothing looks like a crushing bore. I look forward to a robust heaven full of great tastes, aromas, beauty, music, and adventure. (Read C.S. Lewis' book The Great Divorce for more on this.) In addition to all these good things will be the even more wonderful presence of God.

There is disagreement among Christians about how all of this will play out. Depending upon the theory they accept, there are pre- millennialists, post- millennialists, and a- millennialists. One of my professors joked, "I am a PRO- millennialist. Whatever happens, I'm for it!"

Me, too.

(This article was first published in the November issue of the St. James Episcopal Church (Hendersonville, NC) newsletter.)

If I was asked to give an after-dinner speech

I am honored to be here with you this evening. Thank you for your invitation to speak and for the delicious meal. I hope that no one will take offense that I did not eat it. For the last two years I have gotten all my food in liquid form through a feeding tube into my stomach.

I have an illness called "ALS." It is also known as Lou Gehrig's disease after the great New York Yankees' first baseman whose career was cut short by the disease. ALS destroys the nerve cells that control voluntary muscles. As the nerves die, so do the muscles they control. The person with ALS loses the ability to walk, talk, eat, and eventually, to breathe. During my work as a hospice chaplain I held people's hands and prayed with them as they faced their deaths. I can no longer speak or hold a person's hand, and now I am the one facing death. The average ALS patient dies within two to five years of diagnosis for there is no cure.

I am not here tonight to talk about how terrible ALS is. I am here to talk about the good things that have come into my life and the lives of others because we have ALS. Jeff Lester was diagnosed with the disease eighteen years ago. When he was diagnosed, people told him to prepare his funeral and to put his affairs in order. He writes, "Something happened on the way to my funeral. The day of my diagnosis marks the turning point in my life. I began to understand the true beauty in life, what is important, and it marks the moment I began truly living!" Kevin Connell is the 51-year-old father of five children. He was diagnosed with ALS a year ago. He writes, "Today I choose to focus not on what I've lost, but on all that I've gained: a closer walk with Jesus, many new friends, appreciation for the simple things, and the outpouring of love and support from family and friends."

Tom Ohlson was a member of the United States diplomatic corps when he learned he had ALS. He writes, "Probably more than anything, ALS has taught me appreciation--of others, of our wonderful world, my friends and family, and even of myself. Most of all I now recognize, cherish, and appreciate the gift of life." A self-acknowledged workaholic, Rob Tison was forced to slow down by ALS and spend more time with his family. Rob writes, "ALS may take my children’s father from them, but will leave them as stronger, more caring, more independent children who take few things for granted and make the most of every day. I try to lead by example by staying positive and continuing to do as much as I can; making the best of each day I am given."

My time with ALS has taught me to treasure the present moment rather than wait for happiness in the future. My life is surprisingly good despite my illness. That amazes me. It is evidence to me that God is at work bringing good out of evil and joy out of despair.

Every person in this room will face hardship. We can use hardship to become better people. When a loved one dies or we get bad news from a doctor, when our children get in trouble or our marriage ends in divorce, we can look for the opportunity to grow. We may be put into the fire, but God can use that fire to refine us and make us stronger people. We will know that God is with us, redeeming our hardship, preparing us to help others undergoing similar hard times, and giving us hope for the future. God is with us and at the end of our lives we will realize that this is all that really matters.

(This article was originally published in the Asheville (NC) Citizen-Times newspaper on 6 November 2011.)

My Language is What I Miscommunicate With

Do you know what you call someone who knows three languages? "Trilingual." Do you know what you call someone who knows two languages? "Bilingual." Do you know what you call someone who knows only one language? "An American."

Take me, for example. My Facebook page asks me to list the languages I know. So far, I have left the answer blank. If I was honest, I would have to write, "I know English, usually. I also know enough of four other languages to make a complete fool of myself."

The language that I know least badly, in addition to English, is Spanish. I had a good reason to learn Spanish 22 years ago. My wife and I lived in Spanish-speaking Honduras for six months while doing mission work. In preparation, I learned as much Spanish vocabulary as I could. I memorized the Spanish words for "giraffe," "igloo," and "pagoda." As it turned out, these words had somewhat limited usefulness in a Central American country.



I wonder if these West African women could understand my Spanish?



Nevertheless, I plunged ahead with my Spanish learning and speaking in Honduras. I learned a rare dialect of Spanish, so rare in fact, that I was the only person in the world who could speak it or understand it. A highlight came when I was curious about what the Honduran people called the constellations. One night I looked and pointed up and asked a Honduran man, "What is the name of the stars?" I made a little mistake. Instead of asking the name, "nombre," of the stars, I asked him for the number, "numbre," of the stars. Despite this little slip-up, the man was impressed with my question because he said I was a "loco gringo." Another Honduran told me this was an expression of praise and respect.

Now I find myself in a nursing home because I have ALS (Lou Gehrig's disease). The staff who serves me includes people from Mexico, Sweden, Colombia, and Polynesia. I feel like I live in the United Nations building! They take good care of me, so I want to thank them. I am a little rusty (completely ignorant) of Swedish and the Polynesian languages, but I have seized the opportunity to impress my Spanish-speaking caregivers with my knowledge of their language.

Not long ago, I wanted to thank my Mexican CNA for her excellent care of me. She gets me up and out of bed, dresses me, shaves me, brushes my teeth, and puts me in front of my computer. We have worked out a routine that goes smoothly. Although she knows English well, I thought it would be fun to thank her in Spanish. This is what I intended to write: "Thank you for everything. I am sorry, my Spanish is not good. I am embarrassed." This is what I actually wrote: "Thank you for Toto (the dog in The Wizard of Oz). I am sorry, my Spanish is not wealthy. I am pregnant."

Maybe I should stick with English. After all, I know it the goodest.

Thank You Party

  Friends and family have helped me so much over the past four-and-a-half years of my bout with ALS. When an opportunity presented itself to thank them with a party, I grabbed it. My great CNA and adoptive mother Miriam offerred to prepare the food. She did a wonderful job, as you can see.

  Around 80 people came to the party, including my friends Jill and John. Jill was a social worker with the first hospice I served as chaplain. Friends from East Tennessee, Charlotte, Asheville, and Raleigh joined my friends from Hendersonville, North Carolina. Rob and Kelly Tison joined us. He also has ALS. Sue Humphries of the Jim "Catfish" Hunter (NC) Chapter of the ALS Association came. She is working on starting an ALS Clinic in Asheville.

  My daughters, Catherine and Emma, came to the party. I made a couple of "speeches" with my portable computer thanking my friends and then Miriam for her help and love for me the past two years. I projected my computer screen onto a large screen on the wall. The crowd was able to see what I was writing. Then Emma and Catherine did their own presentation to thank the people who had helped me.

 Garry Smith and Roger Bailey provided music from The Great American Songbook. They are in the back of the picture. In front are Catherine and her boyfriend Andrew and Emma and her boyfriend Ian dancing to music that was written at least thirty years before they were born.

 It was a great, fun party. From left to right in the picture are Andrew Hayes, Catherine Swift, Tom Swift, Emma Swift, and Ian Lee.

The Spirituality of Waiting

     The last full week of August was an exciting and discouraging time for PALS (Person with ALS) like me. First, the news that a common cause for the various kinds of ALS had been discovered electrified the ALS community. As reported in the journal Nature, a malfunctioning protein called "ubiquilin2" was not doing its job of repairing and recycling other proteins that help the nerves to work. The science of the research paper is well beyond me, but a Facebook PALS described it creatively. When sanitation workers (the ubiquilin2) go on strike, the garbage (the unrecycled proteins) piles up and clogs the streets. Eventually, no traffic can move, similar to the inability of the nerves to send messages to the muscles.
     We were excited about the news of this discovery. I sent a message to all my e-mail friends and family that perhaps a cure for ALS might be coming soon. I started thinking about what I would do if I was cured. I would return to my work as a hospice chaplain, live in an apartment, and drive the new 248 mpg car by Volkswagen.
     As the week wore on, we learned there is a big gap between finding a cause and creating a cure. The development of a curative drug is a lengthy and expensive process. In our excitement we thought a cure was just around the corner. The reality, so far as we understand it now, is that a cure based on this discovery is years away.
     So, we return to waiting, a practice we know quite well. There is a spirituality to waiting under trying circumstances if we are open to it. My friends and I in the ALS community are learning how to live. We have learned to focus on the positive rather than the negative, on what we can do rather than what we cannot do. We have learned to enjoy the present moment rather than wait for fulfillment in a future that may never come. We are loving and being loved by family and friends, getting involved in ALS fundraisers that help others more than ourselves, supporting each other with caring messages and prayer, and keeping our eyes open to see the humor and happiness of life. We are making peace with God. ALS is a terrible disease, but we are becoming better people because we have it.
     If a cure is found that will help us have a second chance at life, we will be ready. If no cure is found and ALS kills us, we will be ready for whatever is next. Despite "the slings and arrows of outrageous fortune," despite the suffering that we and our loved ones must yet endure, we see good overcoming evil in our lives. We who have ALS are some of the most noble and blessed people on earth.
(This article was originally published in the Asheville N.C. Citizen-Times newspaper on 4 September 2011.)

No More Nursing Home Blues

            I have learned to be grateful about living in a nursing home.

            When ALS (Lou Gehrig's disease) forced me to look into nursing home care, I had lots of questions. From my work as a hospice chaplain in nursing homes, I knew that some were better than others. Some were terrible. A nurse with whom I worked described one as a "hellhole." This knowledge combined with my fears about going to any nursing home at all made me nervous. I visited several local nursing homes with the help of friends. My visit to Hendersonville Health and Rehabilitation was encouraging. The place was clean, bright, and had a sense of liveliness that the other facilities did not possess. I was impressed.        

            Still, I had my questions, fueled by anxiety more than anything else. I had the administrator's e-mail address and asked her my questions. We had e-mail problems and my messages did not get to her. This was frustrating to me because I had a time limit imposed by my dwindling finances. To my surprise and gratitude, the administrator, Cookie Romeo, came to see me at my home to answer my questions. She also became satisfied that her facility could provide the care I needed. I moved in not long afterward.

            I was angry when I arrived. I was angry at a disease that had taken away my ability to walk and was stealing my speech. I was angry that I had to leave my home and move into a facility where I would lose my independence and privacy. I was angry that I had a fatal illness. Underneath the anger was fear: fear of the unknown, fear of dying, fear of helplessness, and fear of losing myself. As a result, I ranted and raved at the staff when they could not understand my garbled speech. I disagreed with decisions that were made about my care, such as making me a total lift from bed to chair. If anyone made a decision for me without my involvement, even simple ones like choosing the shirt I would wear, I complained loudly. My reactions and anger were understandable, maybe even necessary at that time in my life, but I eventually realized it was time to move on to acceptance and gratitude.

            It has taken effort, prayer, and the willingness to let God work in me to change my behavior. I am making progress by thanking the staff when they help me and quickly forgiving their mistakes. My life is a lot more pleasant. And you know what? Now that I am trying harder to get along with people, they are having an easier time getting along with me! Funny how that works.

            My nursing home staff has kept me alive and helped me live well. There are moments of great tenderness, too. A couple of weeks ago, a young CNA washed my face prior to my going to bed. She was so gentle, I looked at her and smiled. She smiled back and said, "This is the way I wash my little girl's face." I am grateful to be alive and living in a nursing home.

The Grouch in Room 512 Learns How to Pray

            When I worked as a hospice chaplain, I visited nursing homes. "Mrs. Smith is so sweet," the staff would tell me, or, "Mr. Jones is such a kind man." It seemed that every nursing home had a special resident that all the staff loved.

            I am not one of those people.

            I arrived at Hendersonville Health and Rehabilitation as an angry man. I was angry that I was leaving my home to move into a nursing facility (nursing "home" still does not suit me). I was angry about the loss of independence, privacy, and quiet. Above all, I was angry that I had a disease that had crippled me and was rapidly stealing my ability to talk.

            Saint Paul wrote, "Be angry, but do not sin in your anger." That is pretty good advice. It is too bad that I did not follow it. Instead, I vented my anger at people who helped me. The people who have borne the brunt of my anger have been the staff that has taken care of me. I upset one young woman so badly that she refused to work with me for several months. We made up and get along fine now, but I had no business behaving that way in the first place. A number of people felt the wrath of Tom. I became the grouch in room 512.

            The fact of the matter is that I have been treated in a caring manner since I arrived. The staff has bathed me, fed me, dressed me, wiped my bottom, and helped me exercise. We have had some bumps in the road, but I would not be alive if I was not here. When I think about my time here that way, I can only be grateful.

            I felt badly about my unfair anger. My conscience bothered me. To put it in other language, the Spirit convicted me of my sin. I was not consumed with guilt--what good would that do?--but I did not like my behavior and I resolved to change. Yet I found that I could not change. Try as I might, I could not find peace, but only more anger. So, I prayed about it.

            I remembered that the Spirit is working in me to produce love, joy, peace, patience, kindness, gentleness, and self-control. In my prayer I asked the Spirit to help me be open to the Spirit's work in me. I asked the Father to help me be the man he wants me to be. I asked Jesus to show me the way.

            Slowly, but I believe surely, I am improving. Bragging about being a better person is like bragging about being humble. If you do it, you aren't. So I will not brag but write that the Spirit is doing a good work in me and I am cooperating.

            Here is what I have learned about prayer. I have prayed a lot for my healing, as have some of you. God has not answered these prayers in the way I want, but God has answered my prayer to start becoming a better person. My growth into righteousness may be more important in the eternal scheme of things than my healing. At least it is for now. My greatest good and my greatest prayer may be to become more like Jesus. Who can get angry about that?

A Reason for Courage

Joe Gorman, his friend Jolie,
and a wheelchair provided by Joe's
mission, Compassion for Africa

My friend Joe Gorman is in West Africa. He is a professor and minister in the Church of the Nazarene. His mission group works with local pastors to dig wells, build school buildings, and provide small business opportunities for young women who would otherwise be forced to marry much older men in order to survive. Joe was in a serious automobile accident a few days ago in Ghana. The public transport van he was riding in was going much too fast. The van struck and killed a boy on a bicycle, turned onto its side, and spun in a circle. Joe survived with severe scrapes and bruises. I wrote him, "I am relieved that you are safe after the accident. It is good to know that when we do not survive these threats from death that we will be reunited one day."

I believe in the resurrection of the dead and the life of the world to come.

A young woman joined the ALS Facebook community shortly after a family member was diagnosed with ALS. I have been writing her messages of encouragement for over a year and she has responded with the same to me. She wrote that I am like a "big brother" to her. I answered, "I think a lot about heaven these days. We will meet there one day. We will give each other a big, happy hug. Then we will take a walk and hold hands. You will tell me about your life and I will tell you about mine."

I believe in the resurrection of the dead and the life of the world to come.

My daughter Catherine drew a picture for me a few years ago after I was diagnosed with ALS. The picture is divided into thirds. The top third is blue sky. The middle third is yellow. This shows the dawning of a new day under the blue sky above. The bottom third is green grass. It is a simple picture with three horizontal bands of blue, yellow, and green stretched across the picture. There is one additional element that tells the story and makes the picture precious to me. A sword is stuck into the ground. The meaning of the drawing is this: The battle is over and a new day is dawning. One day my battle with ALS will be over and Catherine and I will wake to a new day.

I believe in the resurrection of the dead and the life of the world to come.

If You Don't Mind, I Think I'll Go Crazy Now

I wear a BiPaP mask at night to help me breathe while I sleep. It needed adjusting during the night recently, so I called a CNA for help. I wanted her to move the mask to the left but could not tell her because I cannot speak. After several questions about my legs, my arms, my pillow, etc., she asked, "Is it your mask?" I nodded, "Yes." "Do you want me to tighten it?" I shook my head, "No." "Do you want me to loosen it?" "No." "Move it up?" "No." "Move it down?" "No." At this point, I thought she was on the right track, so I nodded my head to the left, indicating which direction I wanted her to move the mask.

On the wall to my left I have taped a step-by-step guide for the CNAs on how to use the urinal. When I nodded to my left, the CNA started reading the guide and asked, "Do you need to use the urinal?" "No."  At this point she told me she could not understand what I wanted and went to get help.

They say that neurotics build castles in the air, psychotics live in them, and psychiatrists collect the rent. As the CNA left the room, I decided a small tent would be enough to meet my neurotic needs.

She came back with another CNA who said, "Do you want your leg moved? Arm moved? Pillow moved?" "No." "No." "No." "Is it your mask?" "Yes." I nodded my head to the left. She read the guide. "Do you need to use the urinal?"

Make that a circus tent.

The first CNA went to get more help while the second CNA continued to read about how to use the urinal. The third CNA arrived. She had worked with me a lot and could always figure out what I wanted. I knew she could help me. "Is it your mask?" "Yes." Do you want me to move it?" "Yes." Oh joy, she almost had it! I nodded my head to the left. "Do you need to use the urinal?"

On the other hand, a two-bedroom, one bath cottage would do nicely.

One of the CNAs turned off the BiPaP machine. The air flow stopped suddenly, I yelled "No," and someone said, "Get the nurse! Quick!" By the time he arrived, the machine was back on. He started asking me if I had enough air. Then he asked, "Is it a problem with your mask?" Unfortunately, at the same time one of the CNAs asked if I needed to use the urinal, so I shook my head, "No." He thought I was answering his question. He said, "If it is not your mask, what is it?

A three bedroom, two bathroom, brick ranch house seemed like an even better idea.

Then the nurse asked the first really helpful question of the evening. "Do you want an Ativan?"

Another nurse wandered in. Now I had five people, three CNAs and two nurses, asking me questions at the same time.  "Do you want me to move the mask?" "Yes." "Move it up?" "No." "Move it down?" "No." I nodded to the left. "Do you need to use the urinal?"

Then again, the Biltmore House, the largest privately owned home in North America, has 250 rooms.

Then, the last nurse who came in, a veritable vision of loveliness, a goddess in scrubs, said, "Do you want your mask moved to the left?" I nodded my head, tentatively, hopefully, "Yes." Oh, sweet surrender! Oh, what joy! The group, in chorus, said, "So that is what you want!?" One of them adjusted the mask to the left. The angels sang. The crowd cheered. I drifted off into a gentle sleep.

I awakened the next morning, refreshed and ready to face a new day, but with one thought on my mind.

Does anyone have a castle for rent?

(This article will appear in the Asheville , NC Citizen-Times newspaper on 3 July 2011)

In Memory of Edythe: Aunt, World Traveler, and Occasional Witch

My aunt Edythe died two weeks ago from complications related to Alzheimer's disease. She fought the battle for many years and her passing is a release to her and a relief to all who love her.

I saw a family picture made in 1942 of my mother, jaunty in her WAC uniform; older brother handsome in his pilot's uniform; youngest sister grinning from ear to ear as she still does; and their proud parents. Then there is Edythe, about eighteen or so, and she is absolutely gorgeous. She is smiling, but with her lips together, and she projects the serene beauty that would make her a model on Miami Beach. Edythe was always beautiful and elegant, but never in a snooty or aloof way. She had a great sense of humor, a laugh that was a delight to hear, and she loved me dearly.

Her life was not all beauty and elegance. She endured and was shaped by tragedy and hardship. Her brother, the pilot, was killed in World War II; her three-year-old son drowned in a swimming pool; and she and her first husband were divorced. Like all of us, she made mistakes, but she found forgiveness and a deeper meaning to life in God. When I knew her, she was happily married to her second husband Warren, who adored her. Edythe and Warren became world travelers and she brought back and gave to me small treasures that made me dream of distant places: a wall clock from Switzerland, a set of nesting dolls from Japan, kimonos in which my cousin Paul and I looked silly but my cousin Kay looked lovely, and a Carnaby Street mug from London.

(L-R) My mother and aunt Edythe, 1962

I saw a different side of Edythe and certainty of my mother one Halloween when I was a little boy. They decided to dress up as witches. I vaguely remember going to the store with them to buy their costumes. They found black satin sheets for their robes, green food coloring to dye their faces and hands, stringy white mops for their hair, heavy black eyeliner for their eyes and mouth, black cone-shaped hats, and brooms to carry. They drove around Miami in Edythe's convertible with the top down, went to a couple of hotel lobbies, and played their roles absolutely straight with no smiling or posturing. They were two witches out on the town and how else should they behave?

My mother died of the same disease that killed Edythe, so my aunt's death hits close to home. It is hard to understand why these things happen. Just this week, my friend Karen wrote me of the difficult decision she made to place her dear husband on the Alzheimer's unit of a nursing facility. I close with her wise and hopeful words: "I know now, as do you, that we don't get to choose our road, but we do have to travel it.  That is just the way it works.  It isn't fair, but it is our path, and we can be resolute and make the best of it, and even discover strengths and blessings along the way. Obviously you, my husband, and I have chosen to embark on our separate journeys and make the best of them, knowing that we do not travel alone. So onward we go, looking for God's next wonder."

(This article appeared in Asheville (NC) Citizen-Times newspaper on 5 June 2011.)

"I Consider Myself the Luckiest Man on the Face of the Earth”

Seventy years ago today (June 2nd), Lou Gehrig died of amyotrophic lateral sclerosis (ALS). He was one of the greatest baseball players of all time, but the disease ended his career in 1939 and killed him less than two years later.

He was known as the "Iron Horse" because he played in an incredible 2130 straight games, a record that stood for 56 years. Gehrig still holds the record for the most Grand Slams by a Major League baseball player. He had a lifetime batting average of .340 with 1995 runs batted in and 493 home runs. Baseball fans voted him onto the first seven All-Star Teams and gave him the highest number of votes for any player selected to the Major League Baseball All-Century Team.

He retired from baseball of July 4th, 1939 and gave his farewell speech before a packed Yankee Stadium. He described himself as "the luckiest man" alive and thanked his parents, his mother-in-law, and his wife for their support over the years. When he was finished talking, he received a standing ovation that lasted nearly two minutes.

ALS, now also known as Lou Gehrig's disease in Canada and the USA, is a fatal illness with no known cure. It attacks the nerve cells that lead to voluntary muscles and causes muscle weakness. Over time, the typical ALS patient loses his or her ability to breathe. Mechanical ventilation can prolong life. Then a "locked-in" state can occur in which the person with ALS cannot move a muscle.  Mental ability is rarely impaired, so the patient is aware of the itch that cannot be scratched or the cramped muscle that cannot be moved.

I was diagnosed with ALS in February of 2007. Several months before on a chilly fall morning I could not pick up a pencil to write my name. I was able to continue my work as a hospice chaplain for another year and a half thanks to the help of co-workers and friends. During that year and a half, I went from walking with a cane to using a walker to driving a power wheelchair. I live in a nursing home now and require twenty-four hour care. The average life expectancy for an ALS patient is three to five years. I have lived with the disease for over four years. If the three to five year prediction is true for me, I will not live to see my daughters graduate from college, escort them down the aisle at their weddings, or hold my grandchildren.

My story could be told 40,000 times by ALS patients across Canada and the United States. We are grandparents, parents, and children, ranging in age from our teens to our nineties. If we are veterans, we are twice as likely to get the disease as the general population. We may be your friends. We may be your family.



Lou Gehrig during his ceremony saying
farewell to baseball, July 4th, 1939

 We need your help. "ALS" and "Lou Gehrig's disease" are names that many people have heard but know little about. With your help, we can change that and a greater awareness of the disease can lead to more funding and a cure. Please remember these three things about ALS: (1) It is a fatal illness with no known cure, (2) it destroys muscles, and (3) everyone is at risk for getting the disease. Only ten percent or less of ALS cases are hereditary. I have no family history of the disease. It struck me quite unexpectedly. So remember ALS is "fatal," "destroys muscles," and "everyone is at risk."

May I ask you to do one other simple thing? Share this article with someone else and tell them the three things you have learned about ALS. Doing this will help you remember the three things and will spread the word farther With enough awareness and the additional funding that can result, we can find a cure for this terrible disease.

For further involvement in the fight to defeat ALS, go to the websites for the ALS Therapy Development Institute, the National ALS Associations in the United States and Canada or your local chapter of the ALS Association, and ALS Guardian Angels. Thank you.

A Small Decision with Big Results

Emma Swift and Enoch Nyador in Ghana, West Africa, May 2011

My daughter Emma is in Ghana, West Africa. She is there due to a series of events that started thirty years ago when I accepted an African man as my roommate when we were in seminary.

I was raised in the Deep South by parents who were steeped in a culture that was prejudiced against blacks. Like many Southern whites, my parents respected individual blacks, but disliked the race. I remember my father yelling at the television and using the "n word" when a member of the NAACP demanded equal rights with whites.

For that matter, I told "n jokes." It was part of the culture. Prejudice was in the air I breathed and as taken for granted. If I could get a few laughs from friends or the approval of my father for telling racist jokes, it was well-worth it to me.

In my second year of college, the Christian faith I inherited from my parents became my own faith. I transferred to a college to prepare for ministry. I started to take the social implications of the gospel seriously and I realized that racism and following Jesus were mutually exclusive. Two events helped turn this realization into action. The first came on a metropolitan transit bus in Atlanta, Georgia when I surrendered my seat to a black woman. The second came when I accepted Enoch Nyador of Ghana, West Africa as my seminary roommate.

Enoch was a graduate of Ghana Christian College and came to prepare himself to return to Ghana to serve his people. I was dating a woman whose father ran a medical mission organization. Bob Reeves worked with indigenous people around the world to bring medical care and the good news of a loving God to people who had neither. I introduced Enoch to Bob and good things began to happen. Enoch graduated with a Master's in Divinity, returned to Ghana, and Bob worked with Enoch to establish a Ghanaian based mission organization. Ghana Christian Mission has baptized thousands of people into Christ, started over thirty churches, and provided medical care to tens of thousands of people.

Now, thirty years later, Emma is in Ghana with Enoch and his family. She is working on a project to start small Ghanaian owned businesses that will sell solar panels at low cost to villagers without access to electricity. The panels will provide power for light bulbs, radios, and to recharge cell phones. She will return to the USA at the end of June and continue working on the project in Indiana. Emma sent me an e-mail after she arrived in Ghana. She wrote, "I've certainly been noticing and thinking a lot about the huge ripple effects that have been made possible because you decided to room with an African." I made a small decision to follow Jesus. God has made much of it. Thanks be to God.

I Miss My Fingers

(Someone asked me to write about the value of our fingers and what it means to lose them.)

My fingers stopped working three years ago. I could grasp a steering wheel and hold a fork with an overhand grip, but I had neither the strength nor the dexterity in my fingers to type. This was bad news because I worked as a hospice chaplain and needed to enter notes into a computer for the rest of the hospice team to read.

The loss of my fingers, which is essentially what happened, came about because I was diagnosed with ALS (Lou Gehrig's disease) in February 2007. It attacks the long nerve cells, called "motor neurons," that lead to the voluntary muscles. When the nerves die, so do the muscles they control. The result is paralysis, leading to a locked-in state in which the victim cannot move a muscle but is mentally alert. The locked-in ALS patient feels to a maddening degree the itch that cannot be scratched and the cramped muscle that cannot be moved but is helpless to do anything about it.

My inability to type did not come unexpectedly. The first symptom of my illness came on a fall morning in 2006 when I could not hold a pen well enough to write my name. I was sitting in a hospice staff meeting and I had to ask a coworker to write my name on the sign-in sheet. Looking back, I realize I had ignored other symptoms, but this one I could not ignore. So it came as no surprise when I could no longer type, but it concerned me. It was vital that I recorded my visits with patients. As we used to say, "If it is not recorded, it never happened."

At the time, my difficulty walking was foremost in my mind. I went from a cane to a walker to a wheelchair in less than a year. The loss of the use of my fingers was just as devastating. Not only could I not type but eventually I could not feed myself. I could not hold my daughter's hand. I could not sign my name except with an "X." I could not turn the pages in a book. I could not button my shirt or zip my pants. I could not shave, brush my teeth, or brush my hair. I could not point at something I needed. I could not push the buttons on a phone to speak to a friend or to call for help. As it has been noted many times, we do not fully appreciate what we have until we lose it.

Yet, here I sit, typing this article with ease. I have an amazing and free computer program that helps me called "Dasher." It is a product of the Inference Group in England. I also use a head mouse that allows me to move the cursor with head motion. I glide the cursor over the letters I want to type and they appear on top of the screen in the sentences I create. Dasher "remembers" the words I have typed often and, along with other word prediction features, I type more rapidly and with fewer errors than I did the old standard way. It is surprisingly easy to use and I learned it quickly. So long as I can move my head and squeeze a mouse with the remaining strength in my right hand, I will be able to communicate. When these abilities are gone, I will have to move to a much slower system.

Our fingers can move mountains with the stroke of a pen, seal a friendship with a handshake, signal "V for Victory" or a peace sign, and when intertwined with other fingers can express love. They are a gift from God. Let us not forget the miracles they can do.

(Tom Swift has written an article about living with ALS for the Asheville, North Carolina Citizen-Times newspaper for the last four years.  He lives in a nursing home in East Flat Rock, North Carolina up the road from a community college and across the street from a llama farm.)

My Friend Anne Writes a Letter to Mr. Webster

Dear Mr. Webster,

Your dictionary is the authority on definitions.  There is no argument about that.  But when I looked up the word courage, I was taken aback.  Why?  Because it says:

“That quality of mind which enables one to encounter danger and difficulties with firmness, or without fear, or fainting of heart; valor; boldness; resolution.”

Photo by Anne Prettyman

Where are the names of people that have ALS?  EVERYONE WITH ALS SHOULD HAVE THEIR NAMES LISTED BESIDE THE WORD “COURAGE.”

My friend Tom is about the noblest man I know.  Tom and I were in high school together 35 years ago.  Tom was the tallest guy I had ever seen, a standout on the basketball team and an academician and I was just a cheerleader, cheering him on to victory from the sidelines.

We graduated, our lives went their separate ways and thanks to the Internet, we reconnected.  I noticed a wheelchair in his profile picture, then the news came that he had ALS.  How could it be?  We were so young….even 35 years later, we were still young.  As Tom and I talked on the computer, I got the most sobering note from him I had ever gotten from anyone…

 “Anne, I cannot walk, talk, eat or sit up by myself. I cannot use my hands.  I live in a nursing home.” At age 48, Tom was diagnosed with ALS.  How much courage does a father need to swallow that bitter pill?  One day, Tom was ministering to his hospice patients, loving his daughters, hiking and swimming, in the fullness of his life and the next, he gets this diagnosis.  How do you summon up the courage to breathe?  To think?  To tell your girls?  To live to the next day? 




Anne Cushman Prettyman, in back
second from left, 1975

  Maybe you need to come up with a new word for these ALS survivors. They are survivors in the truest sense.  Every minute they live is the embodiment of courage.  What they do with those minutes is a testament to who they are.  Being trapped in a body that is failing while their mind is still vibrant requires a courage that is beyond human ability…It is God-given. Of this, I am sure.

Tom is on a mission.  He was diagnosed four years ago.  Due to his age and physical condition at diagnosis, he had 103% lung capacity when diagnosed.  Today, he has 19% lung capacity.  His mission is simple yet huge….He wants to be a voice for those afflicted with ALS.  He writes to raise awareness about the disease. But do not think that you are going to get a dry, medical, approach to ALS.  Most of Tom’s work will make you laugh out loud…he writes of funny things that happen in his nursing home.  Read the story about his bathroom escapades!  He writes about his CNA’s.  He writes about memories, about his daughters and about his dreams.

I cry out “Where does that humor come from?  Tom, I am weeping for you and you are making me laugh…”  That is part of his mission.  He is making ALS real for those of us that do not live with it on a day-to-day basis.  Once you read his work, you are forever touched and cannot ever go back to ignorance.  I saw him recently and the first thing he wanted to talk about was my cheerleading uniforms from 35 years ago!  PLEASE… I am looking at my friend confined to a wheelchair and dependent on an incredible computer program to communicate and he is seriously talking about cheerleading uniforms….

So here we are, Tom is still a big man and he uses his gift of writing to help us all understand the disease and I continue to cheer him on, maybe not from the sidelines anymore!  Please, Mr. Webster, put your people to work and correct your dictionary to show the correct definition for courage:  people afflicted with ALS.

Sincerely,
Anne

(This article was written by Anne Cushman Prettyman as a note to me and is used here with her permission.)

A Disease Whose Time has Come-- to Die

The month of May is National ALS Awareness Month. Forty thousand people in the USA and Canada have amyotrophic lateral sclerosis (ALS). ALS is also called "Lou Gehrig's disease" after the great New York Yankees first baseman whose career and life were cut short by the disease. There is no cure. It is a fatal illness and most of its victims die within three to five years of diagnosis.

ALS is a motor neuron disease because it attacks the long nerve cells, or neurons, that lead to the voluntary muscles. As the neurons die, the muscles they control atrophy and weaken to the point of uselessness. First symptoms of the disease vary for different people and include difficulty walking, inability to perform tasks like buttoning a shirt, and slurring of speech. As the disease progresses, ALS patients lose their ability to walk, talk, eat, get in and out of bed, and lift their arms. Most die of pneumonia or suffocation because their diaphragm and intercostal (between the ribs) muscles become so weak they cannot cough or breathe. Life can be prolonged by accepting a tracheotomy and mechanical ventilation, although many ALS patients choose instead to receive hospice care and die. If life is extended through artificial means, the deterioration of muscles continues, leading to a locked-in state in which the victim is completely unable to move.

The mind of the ALS patient remains clear and alert. In less than five percent of cases is there any cognitive impairment. Victims of ALS are completely aware of their bodies decaying to immobility and helpless to do anything about it. Their senses of sight, hearing, taste, smell, and touch are unaffected. They feel to a sometimes maddening degree the itch that cannot be scratched and the cramped muscle that cannot be moved. People with ALS are trapped in their bodies until they die from a disease that some of them call "the Beast."

I was diagnosed with ALS in February 2007. Eight months prior to diagnosis, I climbed scaffolding to build a house in post-Katrina Mississippi. Eight months after diagnosis, I started using a walker. Two years prior to diagnosis, I kayaked in the Bahamas. Two years after diagnosis, I moved into a nursing home. I spend my waking hours in a power wheelchair. I get my food and water through a feeding tube into my stomach. I communicate by typing with my eyes on a computer. I cannot hug my daughters, enjoy a meal, or hike along a mountain trail. ALS has not only shortened my life, it has narrowed it.

I grieve for the young parents with ALS whose children will see their lives poured out like water and evaporate before their eyes. I grieve for the young and beautiful women with ALS who will shrivel and die like cut flowers in the hot sun. I grieve for the mothers and fathers and their children who have grown up to be their best friends. They will be separated by a disease that is unmoved by friendship or love but mows people down like a scythe in a field of wheat. Six thousand people will be diagnosed with ALS this year. Six thousand others, having fought their fight, will die from it.

If you or someone you know has ALS, sign up for the national ALS Registry. Contribute to the National ALS Associations in Canada and the United States. Get involved with your local ALS Chapter. Contribute to the ALS Therapy Development Institute. Contribute or get involved with the ALS Guardian Angels. ALS was first described as a distinct illness in 1869 by French doctor Jean-Martin Charcot. We have learned a lot about the disease in the intervening 140 plus years, but ALS continues its destructive rampage among our friends and families. It is time for this disease to die.

(Originally published in the Asheville (NC) Citizen-Times newspaper on 8 May 2011.)