When Connie Williams returned home from a Sonora chamber mixer one evening last summer, her husband, John, looked at her with alarm.
“Are you drunk?” he said.
“I haven’t had anything to drink,” she replied.
Yet, she slurred her words. She could feel it, her voice slowing as she tried to speak.
She had had twitching in her leg muscles for some time, especially when she was lying down, but she discounted it.
Then she started losing strength in her hands. Her doctor sent her to hand therapy. Nothing changed.
And she noticed she was walking flatfooted like she was stomping on the hardwoods of her house off Morning Star Drive.
“We’re going to get to the bottom of this,” her doctor said, and made an appointment with a neurologist in San Francisco.
That’s when everything about the tidy retirement life she had crafted in Sonora as a city council member, former mayor and leader of numerous committees changed.
Williams is an Indiana girl — LaPorte bear South Bend, where both her mother and sister were hairdressers. She followed them into the profession when she moved to Heber Springs, Arkansas, with her first husband. She refers to it as “when my husband took me to Arkansas,” as if there’s no possible reason for anyone to go there otherwise.
It was not a happy time. Her marriage was difficult and then, a driver ran a light and T-boned her car as she was on her way from her dry town to Little Rock to get shrimp and liquor for a Christmas Party. A serious neck injury left her unable to move her arms above her head. That ended her hairdressing career.
Her marriage collapsed. She went to work selling word processing equipment. Before long, a man came to Little Rock do some training at her company. He noticed her. Besotted seems like an appropriate word. Then, when she went to Boulder for a two-week course, he knew his feelings were real.
“John proposed at my final review,” she said. That was 36 years ago.
Sitting nearby as she tells the story, John added, “Dating students wasn’t frowned upon then.”
She didn’t say yes right away.
“Finally I wore her down,” John said.
It took six weeks.
They moved to Atlanta where first Connie sold telephone systems, then took an executive position with Cox Enterprises, which owns the Atlanta Journal Constitution, a cable company, TV stations, and a software and marketing company for automotive dealers.
When they retired in 2002, they decided to move to California to be near John’s brother. They built a house at Lake Tulloch, then moved to Sonora to their hilltop home overlooking downtown.
One April day
When the Williamses arrived for the appointment with Dr. Jonathan Katz at the five-story Forbes Norris Treatment Center in San Francisco's Pacific Heights neighborhood they were confronted with a new fear. Everywhere they looked, they saw information about ALS, amyotrophic lateral sclerosis, the disease that killed baseball great Lou Gerhrig in his 30s. Connie and John hadn’t really thought that ALS could be the cause of what was happening to Connie. She thought she probably had multiple sclerosis, which would have been bad enough.
Katz, who is considered among the leading ALS doctors in the U.S., checked reflexes and did other tests. There is no lab test for ALS. It’s diagnosed after ruling everything else out.
In a steady, low-pitched voice, Katz said, “I don’t know how to tell you this, but you have ALS. We don’t know why, who gets it, and there is no cure.” There’s no telling how many times Katz had made such a pronouncement in more than three decades as a physician.
But both of the Williamses felt his compassion.
As he left the room, Connie collapsed, crying. John held her. They stood there together for some time. They had no words.
When the doctor came back in, Connie wiped her tears and said, “OK, what’s the next step?”
The doctor described drugs she could take, but the stem cell clinical trials that are showing so much promise would not be available to her. At 72, she is too old.
It was a long two hour drive home.
That night, her youngest stepson called her and said the diagnosis was a “sucker punch.”
All she could do — all she knew to do — was to start learning.
Telling her world
I am sure you have noticed that my speech has been affected...I wanted all of you to know why...obviously, I have not been drinking too much! And all of you have been gracious enough not to ask why. Yesterday I was diagnosed with Lou Gehrig’s disease (ALS). That does not mean I am quitting anything...the best thing for me is to stay active and use my brain. Maybe I spoke too fast previously, now you all will understand me better...maybe...don’t feel sorry for me as there are people worse off than me out there. I will be starting some therapy the end of the month in Sacramento and I plan on participating in a clinical trial in the future. I have a great neurologist to support me through the process.
I am still here to support the City of Sonora...Connie
That letter appeared in the inboxes of City Council members and city department heads around midday April 11, less than 24 hours after Connie Williams received the news that her husband has called “a death sentence.”
People at City Hall were stunned, even though most knew something was wrong with her. Normally a forceful and precise speaker her slowed syntax had been noticed. The news snaked through the community, one person to the next. “Have you heard about Connie?”
The letter set the tone for the way she has approached her illness during the past four months. She’s not hiding. City Council meetings and community events remain must-dos. She’s figured out that if she’s wheelchair-bound and has a meeting in council chambers on the second floor of City Hall she can park on the second floor of the next-door garage. If she has to go downstairs for a meeting, she can get in her car, drive to the first floor and go in.
Just recently she was out in the early evening heat eating a tri-tip sandwich at Magic of the Night.
She pushes away self pity. But there are moments when it all comes rushing back with the why me question. She’s learned crying is an option.
Here’s what else she has learned.
“It hits healthy people,” Connie said. “I’ve been a master swimmer since 2004, done three senior Olympics, never smoked, ate right, so this was a shock,” she said.
If she has one type of ALS, the disease will likely progress rapidly. The other would be slower. She can’t take the medicine first prescribed and has started on a new drug that is administered through a port in her upper chest. It’s designed to give her more time.
This is the first drug in 20 years to be introduced in the U.S. for ALS patients. It’s called Radicava and was developed in Japan.
A support group in Sacramento, sponsored by a chapter of the ALS Association has brought her comfort and a cause. She and John hope to inspire some of the people there who are angry.
Amy Sugimoto, the executive director of the chapter, said the organization offers a multidisciplinary approach to care. In one place are a dietician, speech pathologist, occupational therapist, physical therapist, respiratory therapist, mental health professionals, neurologist and a liaison to cover anything and everything else.
Patients can get all sorts of adaptive equipment. Connie Williams has a software program she’s using to record her voice so that if she loses the ability to speak she can type words on an iPad, which will then read her comments aloud.
She’s waiting for the liaison to come to her house to recommend changes for when she might need a wheelchair. She has already bought a walker.
Sugimoto said the ALS Association has three clinical trials in the third stage that are offering some promise. The ice bucket challenge has brought them the money for some serious work, she said. More than $115 million has been raised since the first person, an ALS patient, dumped a bucket of ice water on his head. Since then, tons of celebrities have taken up the cause, including President Obama, Bill Gates and the cast of Star Wars. Katz and other doctors at Forbes Norris did, too.
“We’ve accomplished more in the past five years than in the past 100,” she said. “There is a cure, it’s just underfunded.”
Williams is raising money for the Walk to Defeat ALS, which will be held Oct. 5 at Raley Field in Sacramento. She set out to raise $250 and by Monday she had $1,275.
Connie and John Williams had intended to go to Berlin next year to visit his brother and sister-in-law, who is the second in command at the U.S. Embassy there. But who knows what will happen by then?
Connie said her new mantras are do it now, get prepared and show family they matter.
They decided to go.
“I walked all over Berlin.” Connie said. “I set the pace and they all walked with me.”
They attended the Ronald Reagan Terrace Dedication at the U.S. Embassy, which is located next to the Brandenburg Gate and catty-corner from where President Ronald Reagan told Mikhail Gorbachev 32 years almost to the day to "tear down this wall." Two years later, the Berlin Wall, which divided East and West Germany, came down.
Flanked by security, they felt like celebrities, yet knew people wondered who in the world they were.
One of the concerns for ALS patients is calorie intake. Metabolism speeds up, making weight loss inevitable. At a cafe in Berlin, John wanted an iced tea. The employee didn’t understand what he was talking about and instead gave him an iced coffee, a big mug of coffee, ice cream, whipped cream and chocolate sprinkles.
Connie made sure to drink one every day they were there.
Connie continues to research this mysterious disease. She learns of people in the various trials whose disabilities have been lessened. Some have lived 10 years, some 20. Look at Steven Hawking, she said, he lived 55 years.
A brown accordion file holds all she’s learned. Anyone who knows her knows how organized she is. Ask about the cards and notes she’s received and she goes to the file. The name of the drug she’s on; it’s written on a legal pad in the file.
She’s written letters to officials about funding for ALS patients and found people in Tuolumne County who also have the disease. Her handicap placard is stored away; she won’t use it until she needs it.
When John tries to help her in the kitchen, she says, “I’ll tell you when I need help.” For now, she looks to him for strength and always remembers to say how much she appreciates him. He’ll be there for whatever she needs, he said.
She also intends to seek public office next year. She hasn't decided what she wants to run for.
Last week, she painted baseboards, the end of a project to paint all 89 cabinets in her house. Next up are cream-colored doors that she wants to be grey. She’s not sure she’ll be able to complete that and has asked a contractor for a price. But that’s one day. Not today.
“I don’t want people to feel sorry for me,” she said. “I know that I will handle this with grace and dignity.”