On Sept. 7, 1994, my husband, Curry, and I returned home from our appointment with the neurologist. We were stunned, shocked by the diagnosis of amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) and the prognosis that I had three years to live.
I was 36. The ultimate procrastinator, I had done nothing with my life. No family, no successful career — nothing lasting or memorable.
I don't care to remember those first dark hours, filled with terrifying thoughts of my steady decline into incapacity and death.
Who's Stephen Hawking?
Late that night the phone rang. It was an old friend we hadn't heard from in a long time. He's a science writer.
Upon hearing our news, he immediately said, "Isn't that what Stephen Hawking has?"
"Stephen Hawking, the great British physicist. He wrote A Brief History of Time. He's had ALS for a long time," he reassured us.
Of course, we'd heard of A Brief History of Time. Who hadn't? It was a best-seller. And Hawking had written it on a specially adapted computer.
That night, two rays of hope began to pierce the darkness of my soul. The first was a certainty that no one could predict the number of my days in this world, and the second was the realization that I could still make something of my life!
That realization bore fruit (literally) nine months later, when our only child, Daniel Curry Worsham, was born. Now, more than ever, I wanted to leave my mark, as a legacy for my son.
I typed the first words on my Liberator augmentative communication device (made by Prentke Romich) with an infrared head pointer in December 1996. The head pointer, in combination with the Liberator's icon-driven language, Minspeak, was very fast.
Using the Liberator's notebook feature, I began writing a journal for Baby Daniel. Looking back on those early entries, I'm sure Daniel will think his mother was obsessed with food. Just because I had trouble eating doesn't mean I wasn't interested in what everyone else had on their plates!
Pre-ALS, I was an artist, an undisciplined (aka lazy) artist. In the summer of 1999, Curry installed the MIKE software (Prentke Romich) that allowed my Liberator to interface with our computer and move the mouse.
By this time, my neck had weakened and I was using a P-switch to operate the Liberator. Curry tapes the sensor between my eyebrows and I make hits by scanning the keyboard and moving my brow.
|Erin Brady Worsham|
Given a second chance to express myself visually, I set to do so in earnest and learned my new medium of Microsoft Paint.
Fast forward to 2004, nine and a half years after my diagnosis. I'm a freelance artist and writer. My one-woman show, Artist Always, is touring the country, co-sponsored by Vanderbilt University Medical Center in my town of Nashville, Tenn., and the Society for the Arts in Healthcare. I write a quarterly column in the MDA Messenger, the newsletter for Middle Tennessee.
On occasion, I give talks with the Liberator about disability issues or my art. My illustrations have appeared in Quest, including those for this article, and I have work in the MDA Art Collection.
Most important, I wake up each day with a sense that there are things to be accomplished that day. Priceless!
I was curious to see what other people with neuromuscular diseases were doing with their computers or augmentative communication devices.
I was both surprised and inspired by the pursuits of the following people, whom I met via e-mail. Let me introduce them...
Steven M. Best: writer, businessman
"Work is a focal point, and when focus is joined with passion, it is therapeutic."
Steven M. Best has been through several incarnations in his 53 years, from military intelligence analyst in Vietnam to chiropractor for 20 years and, finally, to published author of When Philosophers Were Kings, a historical novel that's garnered three national award nominations.
Best, who learned in 1975 that he had distal muscular dystrophy, retired from his thriving chiropractic practice 20 years later, but he wasn't ready to sit back and do nothing.
"People must do something with their lives, with whatever abilities they possess," he said. Best had always loved writing and received good grades in college. "Giving up my profession sent me back to my love of history, and the discovery of a family legend previously unknown to me."
|Steven Best (lower right) with family|
Best, who lives with his family in Powder Springs, Ga., worked for nine years and did extensive research for When Philosophers Were Kings, a fictionalized account of his ancestors' participation in the Civil War.
Because he's unable to operate a keyboard, Best uses voice-recognition software. He originally used Dragon Dictate, but found it extremely tedious. He now uses Dragon NaturallySpeaking. (See "Talk to Type.")
In addition to his writing, Best serves on the board of Best Enterprises, the largest independent telecommunications wholesaler in Minnesota and the four surrounding states.
He's already hard at work on his next book. "The more pain and losses you experience in life, the more important it is that you have an external focus," Best said. "Writing has been that for me."
Kathie Hormby: mother, student, writer
"Before the AAC, I was a bored TV watcher. It has opened the world for me."
Kathie Hormby, 54, of Nashville, found she had ALS in 1988, shortly after her son, Tom, was born. She began using an AAC device in 1997, when Tom was 9.
Hormby uses Words+ hardware with a personal computer. The hardware consists of two switches, which she holds in her hands and uses to send Morse code to her PC. The left hand is dash, the right is dot. The hardware translates the Morse code into English.
"I can just squeeze my hands hard enough to operate the switches," Hormby said.
|Kathie Hormby with family|
Before she got her AAC device, all she could do was "issue orders, very short orders." Hormby was so desperate to communicate, she learned Morse code in one afternoon!
"The first time I used the AAC, I was able to ask Tom what he was reading. And we had a conversation. I [think] that says it all," she said.
With E-Z Keys software, Hormby can operate in Windows, which she uses for e-mail, reading and writing. In her years as a lawyer, she wrote articles for a law review, and now she's studying creative writing in classes on the Internet.
Hormby feels that AAC levels the playing field between her and people without disabilities online.
"I generally don't tell people I'm disabled until the end of class," she said. While she enjoys writing and wants to do it well, she doesn't consider it a serious pursuit.
"My only aspirations are to survive and to dance at Tom's wedding!"
David Whitenett: licensed mental health counselor
"It has been a very liberating and empowering experience to have Reach and Dragon software available for work and personal use."
Like many people these days, David Whitenett, 61, found his current job on the Internet, through the Boston Globe newspaper Web site.
Whitenett, who was found to have a form of spinal muscular atrophy in 1978, is a licensed mental health counselor and works in a mental health clinic. His department serves chronically mentally ill adults who are at risk for hospitalization.
|David Whitenett with wife, Brenda|
"My primary work is clinical counseling with adults who have a major mental illness such as schizophrenia or bipolar disorder," Whitenett said.
"At work, I do all progress notes, quarterly summary notes, treatment plans, memos and letters with Dragon NaturallySpeaking voice-recognition software," he said. He operates Dragon with a headset microphone.
Whitenett also uses REACH adaptive software, an on-screen keyboard. "It presents an image of a computer keyboard on screen, and I use my mouse to select letters," he said. "It also has a word-prediction feature that I can use to make shortcuts in my word processing."
Whitenett, who lives in Natick, Mass., has worked in human services since 1987, in a mix of clinical mental health and rehabilitation programs. He's used speech-recognition software since 1996.
"Recently, my supervisor expressed relief that he could read my documentation much easier than most of the program staff. That made me feel proud of that accomplishment," said Whitenett.
Julie M. Jones: writer
"I never really feel my disability when I am on my computer using my Dragon NaturallySpeaking."
When Julie M. Jones started college in 1991, her preferred method of typing her class papers was "hunt and peck." Not because she didn't know where the keys were, but rather the SMA she'd had since she was 18 months old prevented her hands from spanning the keyboard.
All that changed in her second year at Orange Coast College in Costa Mesa, Calif., when Jones became one of the first users of the voice recognition software Dragon Dictate. Though Dragon Dictate was "primitive" compared to the Dragon NaturallySpeaking she uses now, she could type pages and pages without getting as tired as she did with "hunt and peck."
Jones, of Fountain Valley, Calif., was an English major, which necessitated the writing of many papers. But her real love was writing fiction and poetry.
|Julie M. Jones|
"The speech-recognition software allowed me to finish my school work in less time so that I had more time for creative pursuits," she said.
She transferred to Chapman University in Orange and graduated with honors in 1996. She finished her master of fine arts degree in creative writing in December 2001, writing a novel, Ivy Trellis, for her thesis.
"Dragon NaturallySpeaking allowed me the independence of typing my own manuscripts, without need of a third party to take dictation," she said. Jones' novel was nominated for the university's Elizabeth George Fellowship and the John Fowles Literary Award.
She is well into writing her second book, The Seven Sisters.
"I think it's just a matter of finding the right editor with the right publishing house at the right time," she said.
David Jayne: advocate, father
"The AAC system has empowered me to take part in a cause that will improve the lives of thousands. That is incredible when you think about it, isn't it?"
On Dec. 8, 2003, David Jayne witnessed President Bush signing the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 in Washington.
The bill includes provisions for a two-year, three-state trial to study the financial effect of loosening the Medicare "homebound" rule. The rule stipulates that, in order to receive Medicare home health services, recipients must remain within the confines of their homes except for "infrequent or unique events."
Jayne, who's had ALS since 1987, has worked tirelessly to change this rule. The trial, and some administrative changes, are due in large part to his efforts, which cost him his own home health services on several occasions.
Jayne, 43, lost the ability to speak 12 years ago and began using an AAC device in 1994. Today he communicates with a laptop equipped with E-Z Keys from Words+. He operates it with a fiber optic switch, made by Adaptive Switch Laboratories, attached to a pair of eyeglasses. He activates the switch by moving his eyebrow. In bed he uses a switch manufactured by Neural Signals that's triggered by electrical activity in a muscle.
"My AAC device has enabled me to found the National Coalition to Amend the Medicare Homebound Restriction, NCAHB," Jayne said. "I have made several trips to Washington where I've given speeches, done radio and television interviews, and met with senators, representatives and legislative staff."
As effective an advocate as Jayne has been for the thousands of people who depend on home health services, perhaps the most important role in his life is that of father to Hannah and Hunter.
"My children have no memory of my voice. All of their recollections are of a computer-generated voice," he said. "Having the ability to tell my children I love them is beyond words."