Each morning, for one blissful moment after she opens her eyes, Mary Hammond lies in bed and feels normal.

Then she notices she still can’t roll onto her back without feeling as if she’ll suffocate. She remembers that she’s still dying. She stands up. Slowly, and with difficulty.

And then she thinks to herself: “I’m still here. I can still do this.”

In December, Hammond was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

In ALS, motor neurons — which transmit signals from the brain to the spinal cord to the muscles — degenerate and die, so a patient loses the ability to control muscle movement. In the later stages of ALS, patients may become totally paralyzed.

The disease has made Hammond acutely aware that every muscle movement is a choice. As her muscles weaken, her physical choices become more limited.

This has made her equally aware that every little movement involves another kind of choice, too.

When she takes a sip of water, for example, she could choose to lament how hard it has become to lift the glass. Or she could see even this bit of independence as a victory. She could savor each drop of coolness as it slides down her throat. This is what Hammond chooses.

“I am so mindful: I can still do this,” she said.

But don’t mistake Hammond’s gratitude for passive acceptance of this fatal disease.

Scientists do not fully understand how ALS works. There is no known cure. At least 20 people in Central Oregon are living with ALS today. Nationwide, as many as 30,000 people have the disease.

Nearly 72 years after the death of Gehrig, the Yankees’ first baseman whose name has become a synonym for ALS, there is just one drug approved by the Food and Drug Administration. At most, it gives patients a few more months to live, and it costs $1,500 per month.

Every 90 minutes, someone somewhere is diagnosed with ALS. And every 90 minutes, someone dies of ALS.

Veterans are twice as likely to develop ALS as the rest of the population, though no one knows why.

It costs an average of $200,000 per year to care for an ALS patient.

The more she has learned about this disease, the more Hammond, who is a nurse, has grown frustrated with how little is known about it. She has vowed to help educate the public and raise money for medical research. To mark ALS Awareness Month, which is May, Hammond decided to share her story.

Family history of ALS

Nine years before Hammond was born, in 1957, her maternal grandmother died of ALS. She died in the house where Hammond grew up — a fact that Hammond and her siblings occasionally used to spook one another.

The only known cause of ALS is a mutation of a specific gene called the SOD1 gene. Yet this mutation explains only 1 or 2 percent of all ALS cases. Most cases appear to be random, striking otherwise healthy adults with no family history of the illness.

During Hammond’s childhood, even less was known about ALS — no genetic mutation had been conclusively linked to the disease. Yet Hammond’s mother had a hunch, which she voiced frequently.

“For some reason, it was always in the back of her mind: Maybe this is genetic,” Hammond said.

In 2002, Hammond’s aunt — her mother’s sister — was diagnosed with ALS. A few months later, her cousin — her mother’s brother’s son — was diagnosed. Yet family members didn’t jump to conclusions.

“My family does a very good job of keeping their heads in the sand,” Hammond said with a laugh. “So they said, hey, it’s just bad luck.”

In a way, they were right. This particular bad luck just happened to be embedded in their DNA.

Hammond’s mother lived at an assisted living facility in Bend, and the two were close. Once, Hammond’s mother asked her to buy a new electric razor.

“It won’t turn on,” she explained of her old one.

Yet Hammond pressed the button and the razor buzzed. Her mother’s hand was so weak that she couldn’t depress the button. Then Hammond’s mother began having falls.

In August 2007, she was diagnosed with ALS. Her blood was sent to a lab to test for the SOD1 mutation. She died in December, one week before the test results came back.

At some point, unbeknownst to Hammond, her mother had sent a genetic testing kit, which cost $650, to Emory University, in Atlanta. She had never followed up.

Shortly after her mother died, Hammond came across paperwork from the study, which sought participants with a family history of ALS. Hammond contacted the researchers and enrolled, agreeing to be tested for the SOD1 mutation. Carriers of the mutation have a 95 percent chance of contracting ALS.

Study participants got to choose between learning the results of their genetic tests or not. For control purposes, researchers wanted both study subjects who knew they would someday contract the disease, and others who did not.

‘Something’s not right’

Hammond opted not to learn the results of her test. As a nurse, she had enough reminders of mortality.

“I’m really aware that we all have a guillotine over our heads,” she said. “But I didn’t want to look up and see the rope fraying.”

Hammond’s sister enrolled and also chose the study’s nondisclosure option. Her brother signed up for the study and elected disclosure. He learned that he’d tested negative for the genetic mutation, which means that he — and his five children — have the same chances of contracting ALS as the rest of the general public.

As part of the study, Hammond was carefully examined every 18 months or so for early signs of the disease.

In January 2012, she felt anxious as she went to her regular appointment.

“I was just not as strong,” she said.

A few months earlier, she’d attended a concert with a friend, Alison Corey, who noticed that her gait looked different.

“Something’s not right,” Corey told her.

Yet all the tests came back negative. Doctors could find no sign of ALS.

Then, in August, when the air was thick with wildfire smoke, Hammond felt short of breath. She noticed her left arm was harder to lift than her right.

She went to a local neurologist, who examined her and noticed signs of the disease. For ALS patients who don’t have the SOD1 mutation, however, a diagnosis usually involves months of ruling out other possibilities.

“She said, ‘It’s time to reveal the results of your genetic test,’” Hammond said.

A diagnosis

She contacted the researchers in Miami. They insisted on genetic counseling to make sure Hammond had a support system in place and to help her understand the implications if she were found to carry the gene.

The statistician was the only member of the study team who knew Hammond’s results. She called at about 10:15 on a Thursday morning.

Hammond was at work. She’s a charge nurse in the medical diagnostics unit at St. Charles Bend, where she has worked for the past 15 years. She answered the phone.

“Hi Mary,” the statistician said. Hammond immediately noticed the somber tone in the researcher’s voice. With those two words, she knew her test results.

She had the SOD1 mutation, which nearly ensured she would die of ALS.

“I sunk into my chair and I burst into tears,” she said.

Two of her co-workers knew Hammond was expecting the call. They cried with her. Then Hammond got up, dried her face and kept working for the rest of the day.

“I still had a glimmer of hope — I hadn’t been diagnosed yet,” she said.

Researchers from the University of Miami decided to fly Hammond to Florida for further study. Within two hours, she was diagnosed with ALS.

The scientists were confounded that Hammond had detected the illness almost a year before they were able to confirm it. They’ve asked her for a detailed account of her earliest symptoms, so they can reassess the questions they ask patients and the tests they conduct to discern the disease.

Hammond and her husband returned home from Florida just in time for the winter holidays.

“It was the worst Christmas ever,” she said.

Both of them were reeling from the diagnosis. They had not yet told their son, who is 21. They hadn’t even bought a tree.

At the last minute, Hammond said, “we tried to patch together a Christmas with a big twig.”

“Literally, our tree looked like the Charlie Brown tree,” she continued. “It just stood there, like a statement about our lives.”

After Christmas, Hammond told her son, Andy, of her diagnosis. To his worried mother, his reaction was perfect: He focused on her.

“He said, ‘I’m so sorry, Mom. I will be there for you.’ And then, after a while, he said, ‘It ain’t looking so good for me, is it?’” she said with a laugh.

Becoming a zealot

The SOD1 mutation is autosomal dominant, which means there’s a 50 percent chance that Andy carries it. If he has the gene, he will almost certainly get the disease — but probably not for decades. Most people with ALS are diagnosed between ages 40 and 70.

“He wants to be tested and take part in research,” Hammond said of her son. “But not yet.”

The first month following her diagnosis was the hardest, Hammond said. She would look at her son and think of all the parts of his life that she’ll miss — his wedding, the birth of his children — and start to sob.

One day, while talking to a friend, she made a decision.

“I said, ‘I am giving myself until Monday to wallow, and then I’m done,’” she recalled.

Then, Hammond had an epiphany. She had a finite amount of time left on Earth. Of course, that’s true of all of us. But her time was suddenly more precious than ever before. She didn’t want to waste another minute feeling sorry for herself. In fact, she didn’t want to waste another minute at all.

“The only difference between me and you is, I see the light at the end,” she said. “I became a zealot. I just became this ‘here and now’ kind of zealot.”

That realization liberated her. It changed her. Tiny, mundane actions became moments of joy. When she made tea, she was totally present, enjoying the simple act of making tea. She loved feeling the sun on her face. She got pleasure from lifting a glass of water to her lips and taking a sip.

To Hammond, the hardest part about her diagnosis is knowing she will leave behind her son.

“He’s still a baby,” she said.

Then she corrected herself. After all, this disease could have struck 10 years earlier.

“He could have been 11. He’s not; he’s 21. That’s better. He could be 31; that would be even better … but I’m counting my blessings,” she said.

In January, Hammond started taking riluzole, the only FDA-approved drug for ALS. She also enrolled in an experimental drug therapy, although it’s part of a double-blind placebo study. That means that Hammond may be taking the drug or she may be taking a placebo.

People with ALS eventually die of respiratory failure. But in different patients, the disease takes different approaches to disabling the lungs. In many patients, the disease starts in the legs and works upward. In Hammond, the disease seems to have started in her arms and her lungs.

“I might die of respiratory failure while I can still stand,” she said.

Hammond has already decided that she will not go on a ventilator, which could prolong her life but would, in her opinion, severely compromise its quality.

“It’s a personal choice,” she said. “I live through my voice and my hands.”

Hammond is witty, with loads of friends. She knits, spins yarn and weaves in her spare time.

“I’m still hilarious,” she quipped. “But it’s hard that the parts of me that are most affected by this disease are the parts that are most profoundly ME.”

Mornings are best, before the fatigue makes everything harder. She walks more slowly now. She can’t walk and talk at the same time. She has trouble lifting her left arm above her head. And she can’t pull her left pinky in to touch her ring finger.

Finding help in Bend

Once she had her epiphany, Hammond vowed to try every ALS resource available to her. She goes to physical and occupational therapy, to help her stay strong and independent for as long as possible. She sees a counselor, though experts say most ALS patients decline counseling.

“I feel better as a result of these services,” she said.

She joined the local ALS support group. It’s not a therapy group; instead, it matches patients and their caregivers with resources. Relatives whose loved ones have already died of ALS often attend and share their insight.

At first, Hammond was worried it would be depressing to see patients with advanced cases of ALS.

“I didn’t know if I wanted to see my future,” she said.

Instead, the experience inspired her.

“These people are engaged, they’re functional, they’re bright. … It was empowering,” she said.

One man still attends concerts in his wheelchair.

“He just won’t let it change who he intrinsically is,” she said.

Betsy Paige is the local care navigator for the ALS Association. She runs the support group and helps organize a local ALS clinic every two months. In the clinic, patients enter private exam rooms and services come to them, round-robin style. Then the doctors and therapists come together to form a collaborative plan for each patient.

Dr. Viviane Ugalde, a physical medicine and rehabilitation specialist at The Center, said this clinic model is not unique to ALS but is suited to any disease that limits mobility and requires a multidisciplinary approach.

“One benefit is that all of us clinicians have a chance to sit down and talk about the patient together, and really come up with a great plan that meets all of their needs,” she said. “If one person misses something, another person usually catches it.”

Paige operates a medical equipment closet that lends equipment to ALS patients, so they don’t have to purchase them out of pocket. And she offers caregiver support and home visits.

A medical social worker, Paige said she was drawn to ALS patients in her earlier work in hospice. She often meets patients such as Hammond who have what she calls a “special sparkle.”

Paige said she has one patient who can no longer speak, and is on a ventilator. Paige doesn’t know this person well but has been moved to see how well this patient can communicate with her caregiver.

“They’re kind of like in their own little universe,” Paige said.

Though it’s difficult to see these patients struggle with the disease, Paige said, she learns from each of them.

“There’s a sacredness about them. I don’t know, maybe something is uncovered when we realize that we can’t control so many things,” she said.

‘I would never choose this’

This summer, Hammond will retire from her job at St. Charles.

The average ALS patient survives for three to five years after being diagnosed, although one man in Central Oregon has been living with ALS for 19 years.

Because Hammond’s lungs are already affected, she doesn’t expect to live that long.

Living with ALS has annihilated Hammond’s earlier ideas of a “bucket list.” Does she want to travel Europe? Not really. Instead, the disease has given her a clearly defined purpose.

She’s convening a team for the Central Oregon ALS walk in September. The walk raises money for the local chapter of the ALS Association.

She talks to anyone who will listen about ALS. She talks about the need for more research funding and more streamlined regulations by the FDA.

“I know the FDA needs to oversee drug trials; that’s really important. But with ALS, couldn’t we (test drug) safety and efficacy at the same time? We don’t have 20 years. … we have two,” she said.

Hammond remains an active participant in the University of Miami study. Because she was enrolled in the study five years before her diagnosis, her case is particularly valuable in revealing how — and perhaps, eventually, why — the disease takes hold. During her last exam, Hammond underwent a spinal tap. Fluid from her spine was sent to an RNA specialist, as scientists are beginning to suspect that RNA — a genetic element similar to DNA — could contain clues to what, exactly, activates the illness.

This kind of detail matters greatly to Hammond, who often wonders why she contracted ALS in her 50s, while her mother, who had the same genetic mutation, stayed healthy until her 80s.

She sees signs of hope: Stem cell research looks promising. So do some new drug trials. She has faith that ALS patients in her son’s generation will face a better prognosis than she does.

“I’m still hopeful that in my lifetime they’ll come up with some magic thing that arrests it,” she said with a laugh.

It reminds her of her mother. One week before she died, in a raspy whisper, she asked Hammond: Is there a cure yet?

These days, it’s common for Hammond to eat dessert before her meal.

“All my life, I’ve fought with my weight,” she said. “Now, I can eat whatever I want and I’m losing weight. So there’s the good.”

She has joked about marketing “The ALS Diet.”

“It sucks. I hate this. I would never choose this,” she said of the disease. “But I have no choice.”

Instead, Hammond focuses on the choices she does have.

Her occupational therapist has emphasized the idea of conserving energy. She told Hammond to make a list of all of the things she does each day, then identify which ones were most important.

Hammond will soon begin using a wheelchair, even though she can still walk.

“It’s not about succumbing and saying, ‘Fine, I’m in a wheelchair,’” Hammond said. “It’s about conserving energy so I can get out of the wheelchair and do the things that I want to do, the things that are meaningful to me.”

That’s her choice.