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.