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.)