Linn White isn’t clairvoyant, but she does have a knack for seeing into the future. Or, at least, anticipating it.
It’s one of the many things she learned when she was diagnosed with amyotrophic lateral sclerosis (ALS) in the fall of 2008.
The Green Bay, Wis., resident also has learned about “living for today.”
It’s a dichotomy to be sure — a mix of enjoying the here-and-now and preparing for what’s ahead. It’s the life of someone living with ALS.
“These days, I get the things I need before I desperately need them,” says White, a tip she learned early in her journey. For example, she got a mechanical patient lift and began investigating power wheelchairs before she needed them. “Part of it is accepting the reality that you’re going to need these things. It’s about knowing who to go to and who to ask,” she says.
And there are lots of questions, about insurance, technology and everything else that comes with a major life change like ALS.
“It’s all very complicated,” says White, 61, a former librarian and computer-science-turned-history teacher. “It takes about four months or so just to get a power chair. And, you want a good one because I’m in mine 14 hours a day.”
Five years after her diagnosis, ALS slowly has taken away the use of her legs, but she “still has good movement but not a lot of strength” in her arms and hands. She speaks well and her breathing hasn’t been badly affected.
“ALS is a fatal disease, but there’s one thing I’ve learned: Live for today,” she says. “I’m having a good day today, and that’s all I’m going to think about because today is all I have.”
And so, she has fun. She’s a constant at bingo and a major player in local Rummikub games with friends, and a number of card and Internet games at home. And she’s passionate about quilting.
“Linn is very gracious but she’s also very stubborn — and I mean that in a good way, because that’s one of the reasons she has a good fight in this,” says good friend Peg Bessette, a fellow quilter. “She does have a good competitive edge to her. She’s also a gracious winner and gracious loser.”
Most importantly, she’s a good friend.
Neither Bessette nor White will ever forget the once-in-a-lifetime trip they took with four other girlfriends and caregivers to the Big Apple just months after getting the news of ALS.
“We had talked about doing it for years,” White says. “I figured I’d better do it because it would get harder down the road.”
The six friends “packed in as much as we could,” seeing the Metropolitan Museum of Art, the Empire State Building, the World Trade Center site and taking a boat around the harbor, to name a few.
The trip left them with lots of great memories and funny stories to share, such as the time a man watched the half-dozen women getting on an elevator “and said, ‘six in the city’ because there were six of us,” Bessette recalls. “It was funny.”
Life should be about times like that, White says she now realizes.
“I’m more positive about things now, and I appreciate things so much more,” she says.
“I appreciate seeing my granddaughter [Annabelle] and playing games with my friends — the simple things. There are so many things that don’t matter to me anymore. I had all these plans for retirement and most aren’t going to happen, but I’m very happy.
“I guess I spent a lot of time [concerned] about things that weren’t very important. Family and friends are what counts.”
White’s ALS diagnosis came nearly three years after she first noticed problems walking in 2005. She enjoyed walking half marathons semicompetitively.
“I could walk 13 miles and then [suddenly] I was having trouble walking two blocks,” she says, recalling her initial problems.
For three years, the problems with leg weakness continued without a clear diagnosis. Doctors thought it was a thyroid problem, and that eventually was treated. However, her symptoms didn’t improve.
By then, her competitive walking — something she says she wasn’t very good at anyway — was over.
“It broke my heart, it really did,” she says of having to end her walks and workouts. “Part of what people do in long-distance running and walking is make real good friends. You spend so much time with them that you start sharing your entire life story. I really missed walking with my friends.”
Soon after came the visit with the neurologist.
“It takes a long time,” she says of the diagnostic process.
Then came the talk with her adult daughter, Samantha.
“The worst day of my life was the day I had to tell her I had ALS,” White says. “You’re supposed to be around to take care of your kids … at least for a while.”
White recalls Samantha crying for a long period, but it was her son-in-law who was very practical, saying, “We will support her. We will see what she needs and support her.”
Samantha “is fine now and has been wonderful.” Samantha and her family are there for anything and everything White needs, as are White’s friends.
“She has a great [inner] strength, and that’s a phenomenal characteristic,” Bessette says. “She’s doing very well, and thankfully, she has a very good attitude that she is going to beat this. That’s her spirit. She has such a positive aura about her.”
White, who attends the MDA clinic in Green Bay, has become an advocate for MDA in its fight against ALS, actively working to raise funds and awareness.
“MDA has helped with repairs on my power chair. MDA also has helped me with finding resources and with moral support. They found a dentist who could clean my teeth from my wheelchair. They also have connected me with others who have ALS,” White says.
Perhaps most importantly, “they agree with my philosophy that I am going to live today and that I am not dying today. When I work with [MDA Health Care Service Coordinator] Sarah Burns and others at MDA, I feel normal!”