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.