'Still Pam': Life with ALS

HAVRE, Mont. (AP) — Everything you do you will eventually do for the last time.

The last walk. The last "I love you." The last breath.

Pam Hillery thinks about lasts often these days.

She wants each of hers to count.

Pam, 55, is entering her fourth year of amyotrophic lateral sclerosis, or Lou Gehrig's disease, reported the Great Falls Tribune (http://gftrib.com/20EuNQV). ALS is a progressive neurodegenerative disease, gradually killing the neurons that control muscles - even those muscles that control speaking, eating and breathing.

"I'm not hopeful, but I'm not hopeless," she said. "I don't hope for things. I know what I face. All I hope is to remain at home, to see a full summer and a beautiful fall. I hope I can always appreciate the good in my life."

Pam, her husband, Paul Tuss, and their children, Dolan and Caroline, are finding ways to savor all the lasts and to create some epic memories along the way.

Pam's slow end is hard and a gift, Paul said. When he was 21, his father died suddenly of a heart attack.

"I never got to say goodbye," he said. "As awful as this is, it's also a long goodbye. It's an opportunity to do what we always wanted to do, to go to those concerts, to enjoy family time, to travel — all those experiences that make life interesting."

Since her diagnosis, Pam has seen concerts by the likes of Bruce Springsteen and Fleetwood Mac. She and Paul crossed the country on "one of those classic Chevy Chase vacations" for a family reunion, where she saw cousins she hadn't seen in 40 years and her last surviving aunt, whose thick Boston accent was so reminiscent of the way Pam's father spoke.

When Pam got the ALS diagnosis, she first thought how she wasn't going to see Caroline graduate from high school. She next thought how she would never get to see the Chinese Wall in the Bob Marshall Wilderness, which topped the bucket list she wrote on her 50th birthday.

Hiking was out. A pack trip was out. Instead, Pam and Paul chartered a plane to take her over the wall, flying from Helena on a perfect blue-sky day. Below them were more than 1.5 million wild acres and nary a road to follow.

"My takeaway is that it's an unbelievably big area," she said. "We got to see everything, a bird's-eye perspective on the wilderness."

"We took advantage of the situation to do something we never would have done otherwise," Paul said. "And I don't know that I would have gotten my rear end off the couch to hike there either."

ALS is diagnosed in just fewer than four in every 100,000 people, but lightning struck twice for Paul. His mom died at age 76 from the disease. He knows of six people in Havre who have or who recently died from the disease, which is passed in families only about 10 percent of the time.

Pam's disease is progressing neither quickly nor slowly. Typically people survive three to five years after their diagnosis.

"I don't feel burdened with ALS. All I have to do is look at this world around me - refugees dying in transit across the sea, children with cancer," she said. "Every life is equal, and this is just my burden to bear."

To the quote that God never gives one more than he or she can handle, Pam used to joke that God must have little regard for her character.

"I never had a cross to bear," she said. "I must have tempted Him. But I think we're bearing this cross well."

Pam decided she would share what living with ALS is like, and she and Paul recorded an interview on StoryCorps, a national nonprofit oral history project. Sometimes stories are broadcast on public radio stations.

"All I can think of is how hard it is to understand me, and I feel sorry for people who had to listen to me, but I knew if they did listen, they would get something good out of it," she said.

Pam also has a blog, eachdayisjoyful.blogspot.com.

One of the worst aspects of losing her voice is that Pam's passions have not diminished but expressing them is so challenging.

She's become an advocate for ALS issues. She is active with the ALS Association, and two years ago her siblings and Paul's family joined her for the ALS walk in Missoula. She's lobbied Congress for ALS research funding and lobbied the Montana Legislature to designate May ALS Month and urge the federal government to better fund ALS. Sen. Fred Thomas of Stevensville sponsored that resolution, a case of politics making strange bedfellows with Pam, an ardent Democrat, and Thomas, a Republican, Paul said.

ALS is an equal opportunity disease.

"I'm not sure if the roles were reversed I'd have the stamina, not just to live but to be an advocate and involved in the community," Paul said. "Her community commitment is every bit as steadfast as ever."

Pam stepped down from the Havre City Council, but she still works to bring people around on passing a mill levy to improve city streets.

"I'm seeing even people I had disagreements with — they're all very kind and make a point of writing to me and talking to me," she said. "You know, you have to have emotional bank accounts. It comes around. You treat others the way you want to be treated, that Golden Rule."

Pam is president of the local Boys & Girls Club, but her vice president has to do most of the talking.

"I want to make my community the best it can be, and part of that is turning out good citizens," she said.

Pam can't do all she wants, which grates sometimes. One of her hardest challenges is "deciding what I really don't have energy for when I know I will not likely get another opportunity to do something," she wrote. When she doesn't opt to go to an event, "this means I am isolating myself. There is no going back on this, as my energy will decrease as the disease progresses."

"I don't feel burdened with ALS. All I have to do is look at this world around me - refugees dying in transit across the sea, children with cancer."

PAM HILLERY

At home, she knows moms show their love for their families in so many practical ways. She was frustrated when she found she couldn't even fold laundry.

Pam is in her bed or a wheelchair. She can only really manipulate her left ring finger (she's right handed). She uses it to work an iPod that keeps her connected with the world through newspapers, Facebook and messages. Sometimes it even connects her with Paul, who is losing his hearing even as she loses her voice.

"I feel like I sound less intelligent," she said. "I've been proud of my quick mind and quick tongue. I'm projecting what I think other people are feeling. They're so solicitous, but I say I'm still the same Pam. Still snarky."

She wants to live to January so she can see, she hopes, Hillary Clinton inaugurated. Pam was part of Clinton's Montana steering committee in 2008, and a letter arrived this week, signed by Clinton, expressing awe for Pam's "strength and courage" and saying how important her vote is in the Montana Democratic primary.

"It's time for a woman. There's no question," Pam said. "We're the majority in this country, and we need to be represented. I just wish she were eight years younger."

At the very least, "I gotta see November" and cast her vote, she said.

Not long ago, Pam focused on living to cheer on her daughter at her high school graduation. Caroline is a sophomore.

"I don't worry about the far distant future anymore," she said. "I won't see graduation."

Pam revels instead in watching Caroline's plays and musical performances.

"We try to make sure the kids and Paul do what they want to do and not get mired down in this," she said. She pushed Paul not to give up his service with the Montana Board of Regents, which steers the university system.

"Some might prefer I wasn't on the regents," Paul said.

"I'm not one of them!" she said.

"I want to have the minimum impact on my family," she said, even as she depends on them in ways she never imagined before her diagnosis. Dolan isn't in college and helps while Paul is at work.

"As much as I'm a burden, they say it doesn't matter," she said. "They say we'll keep doing this as long as you want. But the person who is ready is ready. Ready is to be satisfied, to have no regrets, to have said 'I love you' to all the people who matter."

Pam's mother knew when she was ready to go, after falling in 2012. She hopes it's the same for her.

"I don't want to die. It's not a death wish. It's an understanding of how I want to live," she said.

Her family says not to worry about them. But she's a mom.

"A mom always has to worry. I know Paul will take care of everybody, but who will take care of Paul?" she said. She's sworn friends to the cause, to support him with love made manifest in emotional support and cooking.

Paul assured her again that he will be fine, that their children will be fine. They'll miss her, but they'll be fine, he said, with no impatience at the oft-repeated sentiment. Only love.

"I'm so fortunate to have my family be caregivers," she said. "If Paul had ALS, I don't know what we'd do. I'm 135 pounds of deadweight to lift, and it's hard."

Paul and Pam have been married 27 years. Five years older, Pam was a graduate student at the University of Montana when she watched Paul, an undergraduate, lead a confused student through registration, patiently walking him from class to class.

"When I first met him, one thing that attracted me was his compassion," she said. "Fortunately, I married that guy. This is a disease that destroys marriages. The level of care takes all the romance out of life. He does it without complaint. I feel blessed to have him."

Her eyes twinkled.

"I learned he can lift 135 pounds and that he didn't just love me for my body," she said.

She's learned about her family's strength and resiliency, and she's learned about friendship.

Being in Havre as they go on this journey has been like being in a "warm embrace," Paul said.

"You couldn't ask for more support than we've gotten from our friends, our neighbors, the whole community," he said.

The day before, a friend stopped by to say she was organizing a team for a fundraiser. She named the team in honor of Pam and another Haverite with the disease.

"She's never been involved in ALS before," Pam said. "It's humbling. I'm astonished people care so much and take care of us."

Since October a team of 30 or better women have taken turns bringing over suppers. Her house is full of fresh flowers from others. Former coworkers at MSU-Northern are planning to plant her garden for her.

"It's sort of like having your funeral while you're alive. I get to feel everyone's love before I'm gone," she said. "It makes me all warm inside."

And she dreams of Glacier National Park, a place she's loved since moving to Montana in 1985.

Pam's last hike was four years ago, to Iceberg Lake with Dolan. A cross-country runner, he had her panting hard. The trail was empty. The scenery was gorgeous that summer evening. Not yet diagnosed, she thought bananas and water would fix the minor cramps she experienced.

"We've talked about dragging me on my deathbed to a mountainside in Glacier," she said. "We've talked about putting the wheelchair on full blast and going over a cliff, Thelma-and-Louise style. I want to be in control of the end."

Pam looked out the picture window in the living room where she spends more and more of her time in her wheelchair. Her neighbor, in his 80s, was working in his garden on the perfect spring afternoon. She's surrounded by photos of family, from faded black and white portraits of relatives long gone to snaps of her own children growing up.

"People die all the time," she said. "I've had a fantastic life of adventure and love."

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Information from: Great Falls Tribune, http://www.greatfallstribune.com

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