Evans couple count blessings along ALS journey

Couple count their blessings amid husband's failing health
Corey Perrine/Staff
Photo Sleeping hand-in-hand, Anita Gordon, left, and husband Bob Gordon spend the night in observation t the ICU after Bob experienced a blood clot Sept. 4, 2010 at the Medical College of Georgia, in Augusta, Ga. Since 2008 Bob has been diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig's dizease, it attacks the motor neuron system. His wife Anita and daughters Lauren, 25, and Leah, 19, learn to adapt and transition as Bob deteriorates. However, despite challenges, they cope, adapt learn to adjust as time passes by.

People tend to ask Anita Gordon the questions she swears she'll never start asking herself.


"A lot of people say he was such a good man, such a godly man, and he is, so how could this happen?" Anita said. "I don't pretend to have the answers. I don't pretend to understand."

How is it, they wonder, that life could be so cruel to her husband, who faithfully knelt in church every Sunday, who was never seen without a smile, who never had to take so much as an aspirin?

Before the diagnosis, Anita didn't even know what amyotrophic lateral sclerosis -- Lou Gehrig's disease -- was. Her daughter thought it was some type of arthritis. They had to Google it.

Three years later, the Evans resident is like a respiratory therapist and ICU nurse, a forced expert on the disease that consumes every ounce of her strength.

But she never asks why. Questions would eat up too much of their precious time together.

Numbness sets in

It started with a numbness in Bob Gordon's left hand in early 2008.

The space between his thumb and index finger felt empty, and his physician sent him to a neurologist.

Dr. Benjamin Bashinski ran some tests and asked a thousand questions. Finally he asked Bob to call Anita at work and tell her to come to the office.

"The doctor wants you to be here," Bob said on the phone.

Bashinski's office was just a few minutes from the Wheeler Road dental office where Anita has worked for 30 years.

She had driven past it thousands of times, but on that morning, she got lost.

"I drove around and around," she said. "I couldn't find my way ... I didn't want to hear it."

In Bashinski's office, Anita sat frozen, across from Bob, under lights that felt like suns.

The doctor's eyes squinted at the floor, and he repeated his apologies what seemed like hundreds of times.

"This is the hardest thing I've ever had to do," Bashinski told them. "I'm so sorry. I'm so, so, so sorry."

He described how soon, Bob's muscles would shrivel so that walking, breathing and swallowing would be like asking his muscles to move a mountain.

The disease spares the brain and turns the body into prison doors that slam shut around a perfect mind.

Just like that, ALS put a stopwatch on Bob's life.

"All I remember was 75 percent mortality in five years," Bob would later write in a journal he started about his journey.

A life-changing event

Things changed at that moment, but life didn't stop.

They tried to explain to their daughters, Leah, now 20, and Lauren, now 25. Leah was silent and confused. Lauren had been suspicious since she found a link to an ALS Web site on her mother's laptop weeks earlier.

In the first year, Bob's body gave cruel hints of what would come but stayed strong enough to fool the family into thinking his case might be different.

Bob fumbled and broke a few coffee pots, slipped in the hallway at church and stumbled on his words, but he was still living a normal life.

That soon would change. The company where he worked as a chemical operator left a message on his voicemail saying he would be placed on retirement. It was too risky for him to climb towers and drive machinery.

"A doctor can tell you you're probably going to die in five years, and after picking yourself up off the floor your life actually hasn't changed much," Bob wrote in his journal. "But after (work) called and told me that I didn't have to report to work any more, now that is a life-changing event."

Without a job, Bob became even more involved with Warren Baptist Church, escorting youth groups on field trips and volunteering in the kitchen.

He slowed down around January 2009, when he woke up at 11 p.m. to go to the bathroom and slipped on some clothes, knocking himself out cold and ending up in the emergency room.

Anita saw him struggle to swallow food, and she began cutting his dinner like she did for her daughters when they were toddlers.

His muscles began to melt away like an ice cube on a hot sidewalk, and eventually he required a feeding tube, an electric wheelchair and a speech device.

"We've been married 35 years," said Anita, who is 56, like her husband.

"The past three years, to see him lose the ability to walk and swallow and just decline so fast: If it weren't for my faith, I think I would just stay in bed all day beside him."

Feeling grateful

It's around noon on a recent Wednesday, and Anita is in her kitchen mixing Carnation high-calorie formula into a cup that she will pour straight into the port sticking out from Bob's stomach.

The Evans home they've lived in for 11 years has been made over so wheelchairs can fit through doorways and roll easier over hardwood floors instead of carpet.

A chime that sounds like a doorbell rings through the house -- Bob's signal that he needs something.

He is lying in a hospital bed with a daytime movie flashing on the TV. His hands are frozen into fists and his toes are curled under his feet. The ventilator pumping oxygen into his body is buzzing over the TV and a little black cat, Pixie, is snoozing between his legs.

"What do you need, Robert?" Anita asks.

His eyelids lift up and big blue eyes gaze at his wife before they droop back down in silence.

It's as if he just wants the company, although almost every day there is a church friend, neighbor or family member at his bedside.

His lips curl into a smile, which makes Anita throw her head back and giggle.

Even on the worst days, when Bob needs the fluid sucked out of his chest more than usual, when he lost the strength to type on his speech device, Anita says her heart is filled with joy.

"I find that I have more things to be grateful for," she says. "It's odd to say when you're staring at this horrible, horrible, horrible disease. I'm grateful he's here and not in the hospital. I'm grateful most days he's not in pain. He wakes up every day with a smile on his face. Every day."

Doing the work of two

Every morning, most starting at 5 a.m., Anita bounces between Bob's bedside and the dental lab in her home.

When Bob lost his speech and ability to walk and eat, Anita's boss encouraged her to move the dental lab where she makes teeth to her home.

She took the office where Bob used to type on his computer and make phone calls.

She never fooled much with computers and always left the technical stuff to Bob, but now she's had to learn to pay bills online, schedule the lawn care, deal with taxes -- husband stuff, as she puts it.

The Gordons' closest friends have watched ALS mold the couple into servants to the disease, but not slaves.

"I have never seen (Anita) get mad, irritated, annoyed, nothing with him," said family friend Robin Morgan. "It's just whatever it takes, that's what she's going to do. I know she's worn out physically. At night he's up almost every hour, and she still holds a job. It's just incredible the strength they have shown through this."

Morgan and her husband, Carter, used to eat Mexican food with the Gordons every Sunday after church. Bob would order burritos and make them laugh.

Even after he lost speech, Carter Morgan said Bob's sense of humor stayed strong.

When Bob was first fitted for his electric wheelchair, he chased the family's Boston Terrier, Rocky, around the yard, laughing the whole way. He'd type funny messages on his speech device and have the robotic voice try to mimic his humor, which is still battling the limitations of his body.

Living for today

The journal is tucked away in a desk in a bedroom corner where Anita can pretend it's not there.

It's filled with words from the depths of Bob's thoughts and sorrows. She's not ready to read it. Not yet.

She doesn't dwell on the past and doesn't dare ponder the future. Today is what matters.

When Bob's body became unable to breathe on its own, the family had a choice to help his lungs with a ventilator or let Bob slip away in comfort.

Bob always said he'd never want the tubes, the machines or the hospital visits, but after praying about it and talking with friends, Bob had a tracheotomy in July 2010.

"He said 'I don't want to do anything to extend my life," Anita remembers. "He said 'When the good Lord says it's time for me to go, I'll go. But you can say, 'I'll do this, I'll do that.' Until the gun is in your face, you don't know. I think until you're faced with the situation, you do what you do then."

Bob's neurologist, Dr. Michael Rivner, said most patients choose not to prolong their lives with a ventilator. Patients without breathing machines usually do not live longer than five years after their diagnosis, when muscles become too weak to take a breath.

But patients such as Bob, who are fighting to be strong for their families, want to hold on a little longer.

For that, Anita is not dwelling on the inevitable. She doesn't keep track of what Bob's last word was or what they ate in their last meal together.

They live for now and they live for each other.

"Part of the reason that we cope is because we know this body is not forever," Anita said. "We know in eternity, he will be there. Because we have that hope, we do have joy that surpasses these circumstances. And they are horrible circumstances."

But Bob has thought ahead. On the last page of his journal, he named the day his friends and family will say goodbye as a "Celebration of Life."

He has chosen the pastors who will talk and the music that will play.

More importantly, on that day, he wants his wife to talk about one thing:

How God has blessed them.


Augusta Chronicle Staff Photographer Corey Perrine spent a year chronicling the battle with Lou Gehrig's disease waged by Bob Gordon and his wife, Anita.

See photos and video in our special section

About Lou Gehrig's Disease

- Amyotrophic lateral sclerosisis causes a degeneration of motor cells in the brain and spinal cord, leading to impaired mobility, speech, swallowing and breathing.

- The cause of ALS is still unknown, and it affects all ages, races and genders. Because the cause is a mystery, there is no known cure for the disease.

- Since baseball player Lou Gehrig made the disease famous with his diagnosis in 1939, nearly 7 million people have been diagnosed.

Source: ALS Association, Georgia chapter