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)