David Johnson’s pale, blue eyes scrutinize the words typed on his computer screen. There is a period of silence while he collects his thoughts.

Johnson is writing a book, entitled “Chosen in Christ,” and this week he’s composing a chapter on usage of the words “elect” and “chosen” in the Bible.

Pat Mathews, who shares these weekly writing sessions with Johnson, waits patiently at the keyboard as the cursor blinks and Johnson works through his ideas — sometimes silently, sometimes aloud.

Mathews is not Johnson’s co-author, not his writing assistant, not his editor. She’s a hospice volunteer. As such, she spends a few hours a week with him, typing onto the screen the words that he is no longer able to type on his own.

For many, the notion of hospice is synonymous with death. It seems negative, like a forfeiture or a sign of giving up.

But thanks to Mathews, hospice has come to mean something different to Johnson, something more uplifting.
 
To the 64-year-old Sykesville man, who has amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, and has lost his ability to move his fingers, arms and other limbs, hospice services mean he can continue work on his book, a task that would otherwise be difficult, if not impossible.

Although he had tried to write his book using voice-recognition computer software, the work was cumbersome and he often lost his train of thought.

“With Pat, I can just talk and let the ideas flow,” he said.

“I’ve told her how much I appreciate her and how much it means,” he added. “This long, downward slide has really increased the urgency to finish the book. It’s a real miracle that I’m still able to talk.”

•••

During one of Mathews’ weekly visits earlier this year, she is greeted with a familiar hug from Johnson’s wife, Carol.

As the women chat, David Johnson is already situated in front of the computer screen. Using a voice-recognition software, he issues curt commands to the computer through a headset in order to set up for the afternoon’s work.

Carol has decided to dedicate the afternoon to the long-neglected task of cleaning up the basement.

Mathews joins David at the computer desk and the two get to work.

“Pretty much I finished chapter three, except for maybe a closing paragraph,” Johnson says, partly updating Mathews, partly thinking aloud. “The question I have, is whether I have too much detail and whether I should put some of it in an appendix rather than the body of the chapter. ... Do you think it’s too much?”

She answers, “Well, I don’t know how else you could get the point across. For someone like me, reading this, I’d need to know that.”

•••

Johnson has been paired with Mathews, who lives about 10 minutes away in Ellicott City, for two years now. It’s the type of partnership Gilchrist Hospice Care would like to see more often.

Johnson is one of roughly 100 Howard County patients served by Gilchrist Hospice, formerly known as Hospice of Howard County, according to clinical director Reggie Bodnar. And Johnson is an example of a person who has been able to get more from hospice care than simply comfort in his final days.

“You can’t fix it and you can’t make the disease go away, but you can make it easier to go the distance between point A and point B,” Bodnar said. “That is really the heart of the program.”

Hospice care consists of medical and emotional support for the terminally ill. Through Gilchrist, Johnson also has a team of hospice nurses and health aides who visit him regularly.

Mathews’ role is something more personal, less medical.

“I’m very attached to him,” Mathews said of Johnson. “He’s so intelligent. I have learned so much from him.”

During the two years she’s worked with him, Mathews has watched as Johnson’s breathing has become more labored (now requiring supplemental oxygen), his diet has shifted from solid foods to purees, and his voice has declined in volume and clarity. “As a hospice volunteer, I do know I’m dealing with the client’s ultimate death. I go in knowing that,” she said.

•••
         
Johnson’s book is based on his belief that God’s love and salvation are not limited to a select few. Today’s work revolves around references in the New Testament, translations of the Hebrew words for “choice” and “chosen.” Johnson has outlined 17 occurrences of the term, although they stem from three different Hebrew words: choice as an adjective, meaning excellent; choice as a noun, meaning a decision; and choice as in chosen or selected by a higher authority.

Between spurts of composition, minutes pass in silence.

The dishwasher, loaded by Johnson’s 94-year-old mother, Eleanor, hums nearby, the family cat paws across the porch and whines to be let in, Johnson’s respirator lets out a soft “whoosh,” and his wheelchair buzzes as it periodically adjusts his legs. Stacked next to the computer along with rolled-up blueprints of Johnson’s architectural designs, are books —  “Greek: An Intensive Study” and “Beyond Calvinism and Arminianism: An Inductive, Mediate Theology of Salvation."

Finally, Johnson has it.
 
“OK, let’s type a bit,” he says. “The primary meaning of the word is ‘choice or excellent.’ The application ... Instead of ‘The application’ make it ‘Its application’ ... to Christ ... I don’t want to use the word ‘confirmed,’ I already have.”

“How about ‘supports?’ ” Mathews suggests.

A pause.

“Why don’t we start the sentence over,” Johnson decides.

•••

Johnson is something of a modern-day Renaissance man. One of seven children, he spent a portion of his childhood in Africa, where his parents were missionaries. As an adult, he worked as a high school math teacher before architecture caught his interest. (He designed and built his house and many others in the county after house-hunting in the early 1980s convinced him that “everything else was junky-looking.”).
 
The father of three grown children, he also taught and lectured for years at Baltimore School of the Bible.

Johnson first exhibited signs of ALS about 10 years ago, an incurable neurodegenerative disease that affects nerve cells in the brain and spinal cord.

One by one over the past decade, as his ALS symptoms have intensified, Johnson’s hobbies — bicycling, playing guitar, design and tinkering with car engines — have fallen by the wayside.

He began using a cane in 2000. The following year, he was able to walk his younger daughter down the aisle at her wedding, but by later that year he was using a walker, and by early 2002 he was in a wheelchair. He stopped driving in July 2003 and in 2004, he lost mobility in his arms.

Losing his ability to lecture led him to the idea of writing a book.

•••

As he reflected on his composition recently, Johnson used Mathews as a sounding board for his thoughts.
 
“It’s hard to write this concisely and convincingly,” he muses. “I’m still plagued by doubts about whether this will be any good. I don’t even have a degree in theology.”

Responds Mathews: “But you speak from the heart.”

“You can’t fudge stuff, because they’ll spot it right away,” Johnson says of religious scholars and others who might comprise the audience for his book. “You have to be very accurate, but you probably won’t convince most people, but that’s OK.

“The idea is: Here’s a bunch of thoughts. They might help you. They helped me. If not, that’s OK. You don’t have to agree with me, just think about it. I’m not going to solve it. If I manage to say something you’ve never heard before, then that’s good, too.”

•••

Aside from helping him write, Johnson credits Mathews with giving his wife, Carol, a break.

“We could never get by without her, really, because Carol could never go out,” he said.

The concept of hospice service took some getting used to, Carol Johnson said.
 
“I’ve never had someone come into my house and say, ‘What can I do for you?’
 
“With hospice, we’ve never had someone make us feel like he’s dying,” Carol added. “He’s living and that’s why we’re doing this. It’s enabled him to live. It’s not depressing.

“I think if he were just sitting there, he would quickly die. He needs to be doing something. Especially because he’s a person who was physically active and is still mentally active. If he were depressed or languishing, it would be very hard for me.”

•••

The tweaking and editing that an able-bodied person would do without much effort is, in Johnson’s case, much more laborious.
 
Though his body is still, Johnson’s blue eyes dart across the screen, seeking holes in his logic or passages that could be improved.
 
His time with Mathews is not all academic, though.

The pair laughs as Mathews fumbles with the keys, typing gibberish.

“Is that French?” Johnson asks her.

After a few hours of this sort of back and forth, they call it a day.

“Let’s leave it at that for now,” Johnson concludes at about 3:30 p.m.

For the final hour of Mathews’ visit, she and Johnson work on Sudoku puzzles, using his voice-prompted computer software.

•••

As one of Gilchrist’s unpaid volunteers since 2000, Mathews said her role changes with each patient and family she assists. She was drawn to the volunteer work by her desire to support a service she believes fosters more dignity at the time of death, she said.

“I had several family members who spent their last days in the hospital, plugged up to machines, lights glaring, people coming in and poking them with things every five minutes. I thought, ‘There must be a better way.’ ”

Over the past nine years, Mathews has been matched with about 10 patients, including those with cancer, dementia, Alzheimer’s and other conditions.

Her shortest assignment lasted three days. Her longest, with Johnson, has been two years.

Mathews likens hospice care to “time to breathe.” She said she wishes more families sought out the services earlier.
 
“It isn’t a death sentence. That’s hard to get through to people,” she said. “I think people go in too late. ... We can offer so much more than that.”

Mathews, a self-described “quiet personality,” said she’s often met with skepticism from patients’ families, who can be resistant to any extra help, or treat her as a house guest — which creates another burden for the already stressed families.
She tries to see where she might fit in to lessen the primary caregiver’s load — running errands, preparing lunch, shopping for groceries, washing dishes or just listening.
 
In the same way she’s assisting the patient, she’s also giving the often-exhausted primary caretaker (usually a spouse or close family member) a much-needed break. They can meet a friend for lunch, get a haircut, or even just take a nap.

Once the patient dies, bereavement counselors step in and Mathews’ role ends.
 
Since the volunteers’ work can prove emotionally challenging, they attend monthly in-service programs where they share their experiences, decompress and help one another with issues that arise during volunteer work.
 
“It sounds like a really depressing thing, to be a hospice volunteer, but it’s not. You get to laughing with the clients,” she said. “It’s not all doom and gloom. They have such wonderful stories.”

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