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.)