Deb Dauer wakes up each day, gets dressed and slides herself into the stair glide that transports her from the second floor of her home to the first. Sometimes she’ll make herself lunch, or she’ll go shopping with her parents. Most days, though, she writes. Types, mostly, but she used to write by hand nearly every day. She wrote in her classroom at Sharon Elementary School in Robbinsville, where she taught first grade for 10 years, marking up assignments and writing on the chalkboard. She wrote at her home in Lawrence on Princeton Pike, where she lives with her husband and children.
Now, she’s working on some fiction pieces, including a children’s book, but as of last April, writing about her day-to-day life became an outlet for her. It was a way for Deb to cope with chronic illness—ulcerative colitis, which she’s lived with since she was a teenager. When it became too debilitating, she left Sharon last school year for several months on disability. Writing on her blog became a way to cope with the depression that came with being away from the classroom that she loved so much.
That blog, though, transformed over the last six months. She had been dealing with various neurological issues for the last two years—foot pain, a slowing gait. What was thought to be side effects from the various colitis medications Deb was on turned out to be much more severe.
After several rounds of testing and opinions from three different doctors, Deb was officially diagnosed with amyotrophic lateral sclerosis, a neurodegenerative disease that is nearly always fatal, in the fall.
‘My biggest fear was not being me, but I realize that I’m still me… I have to remind myself that sometimes.’
Typing is easier than writing now. Muscle weakness has made gripping a pen and putting it to paper nearly impossible. Because of the fatigue that comes with ALS, Deb is often tired, so she sleeps late. She uses a power wheelchair, and the stair glide is necessary for her independence. Her husband, Adam, has taken over all of the house responsibilities, and her parents, Norm and Judy Nahmias, often drive her to the store or to doctor’s appointments. Her children, Gillian, 16, and Ean, 15 help out, too, and so does Sarah, 19, when she’s not at Mount Holyoke College, where she’s a first-year student. Deb feels like a typical stay-at-home mom, she says, just one that can’t do a lot of things for herself.
“When I first got diagnosed, I was devastated and depressed and withdrawn and very focused on the end result of what happens when somebody has ALS,” she said. “Now, I know I’m a little bit more focused on the the day-to-day living and what I can do. My biggest fear was not being me, but I realize that I’m still me. I’m still me inside, and that’s very helpful. I have to remind myself that sometimes.
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Deb, 49, grew up in Roosevelt, a small town south of Hightstown. She went to Washington College in Maryland, where she studied humanities. She toyed with the idea of moving to Baltimore until she met Adam, a Ewing native, through a WPST blind date contest in 1991—participants submitted letters to the radio station expressing their likes and dislikes and were set up with suitors based on what they wrote. The two clicked immediately, Deb says, and married in 1994.
She got her master’s in education from then-Trenton State College and initially struggled to find a job because she had an advanced teaching degree but no experience in a classroom. She worked at a nursery school, and then at Parkway Elementary School, before finally settling in at Sharon.
Deb was born to teach, said cousin Marian Gelber.
“She has the perfect temperament for it,” she said. “It’s what she’s meant to be doing.”
Which is why it was so hard for her to leave Sharon last year. She had a colectomy in June and was ecstatic to return to the classroom in September. But she left after about a month when her hands grew too weak to write, to tie students’ shoes.
Deb was already teaching from a manual wheelchair when she returned. Her neurological issues started with pain in her feet about two years ago. Her gait gradually became slow and awkward. She developed a drop foot—her right foot lost muscle and “dropped” when she walked, so she sometimes tripped on her big toe when she walked. Her legs slowly became weaker until walking became a chore. She fell often.
She saw a neurologist, but more extensive testing was put on the backburner until after her colectomy. Initially, doctors discussed multiple sclerosis, or a general neuropathy of the legs. Deb and Adam thought the symptoms might have something to do with the combination of strong drugs she took for her colitis. That her pain would fade and her gait would return to normal after the colectomy.
“Of course,” Adam says, “We found out that it’s not going to go away.”
There’s no one test to diagnose ALS—it’s mostly a process of elimination, ruling out other diseases that share symptoms with the disease, according to the ALS Association. It is a neurodegenerative disease that affects the nerve cells in the brain and spinal cord, and ALS has a different progression in virtually every case.
Deb sometimes needs help getting in and out of the bathroom, but metal bars a family friend installed in the Dauers’ bathrooms has made that easier. When she brushes her teeth, she uses a foam grip, provided by the ALS clinic at the University of Pennsylvania, on the handle of her toothbrush to make it easier to hold. She has a gadget that will eventually help her close buttons on pants, shirts and sweaters, but she doesn’t quite need that yet. She finds herself laughing and crying harder and more often, a side effect of the disease (though, she says, she’s always been a crier).
‘I’m not going to be thinking about the dying part of it. I’m going to be thinking about the living part of it.’
The ALS Association assigned Deb a caseworker, and the organization helps cover the costs of (and facilitates the delivery and installation of) devices like the stair glide, ramps, a reclining chair that will lift Deb into a standing position in the coming months and a loaner power wheelchair that she will use until a custom-adapted chair is ready for her. She wheeled herself around in her wheelchair—Judy said Deb didn’t want help, at first—until around the beginning of December, when her doctor told her she had to conserve her energy.
“For a long time I thought about well, ‘What am I really conserving my energy for? I want to be able to do things that I want to do. Am I conserving my energy for that?’” she said. “But I found out later on that people with ALS oftentimes have a limited amount of energy. It’s almost like your gas tank spread over a long period of time. If I use my arms continuously to wheel myself around, I might be able to do that for two weeks, but then eventually I won’t be able to do that. If I conserve it, I might be able to wheel myself a little bit over four weeks, six weeks.”
Through everything, though, Deb has fought hard to keep her everyday life as normal as possible, despite the massive changes the disease has forced her and and her family to undergo. She still attends Lawrence High School band concerts to watch Gillian play the trombone, and she’s a fixture at the school’s pool, where Ean swims for the Cardinals and Sarah swam before him. Deb still goes out to dinner with her friends and gathers with family.
“The kids have been great,” she said. “It is really, really important to me and Adam that they maintain as much normalcy as possible, which means we still want them to be involved with school things, and we still want our oldest to be at college. We try to go to as many of those things as possible. The normalcy for them is important for me. This is not normal. This is hard. I think it’s really hard for my daughter who’s away because she’s not involved in the day-to-day. When she came home for Thanksgiving, I think seeing me and my lack of physical ability was a little difficult for her.”
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Throughout all of Deb’s health struggles, her friend Melissa McCormack is amazed at the strength she’s displayed, how she’s been able to stare the disease in its face and confront its progression and her future.
Amazed, but not surprised.
Shortly after Deb’s diagnosis, McCormack stopped by her house with an idea to raise money for the family. The ALS Association covers the costs of some items, but some of the adaptive equipment is paid for out of pocket.
The Dauers were hesitant at first—and they still are, a little bit—but they eventually agreed. McCormack wasn’t sure how exactly to execute it, but she, Gelber, and their friend Michelle Miloszar decided on bracelets that read “Live to love, love to live,” a phrase Deb often uses to sign off her blog and Facebook posts.
“I’m not going to be thinking about the dying part of it,” Deb said. “I’m going to be thinking about the living part of it.”
After 10 days, the trio raised over $2,000 and had to order more bracelets because they ran out. Students at Lawrence High School and members of the swim team wear them often. Gelber sees families out and about in Lawrence with them. She ran into one local family at Target, and they handed her $100 on the spot. Gillian came to school one day, and her whole group of friends had bracelets on.
“I’m 16, and I’m surrounded by 16- and 17-year-olds all day,” Gillian said. “It’s the first time they’re going through this as well as me. I enjoy the fact that our situation is making me think critically and understand and sympathize and empathize. The fact that they can be so supportive, like the bracelet campaign. I didn’t talk about it at all. I came to school, and my entire circle of friends had a bracelet. It made a lot of difference that day.”
It’s exactly what someone who has spent her whole life giving back, even when her own family is in need, deserves. Deb gathered together bags of items mid-December to take to HomeFront. She and her family recently participated in the Take Steps for Crohn’s and Colitis walk—Deb used her wheelchair—and raised $4,000 for the cause. The Dauers won the 50/50 at the high school’s winter concert, and they turned around and gave the money right back to the band, Miloszar said.
“You don’t want to be on the other side, but when you have to be, it’s kind of nice that somebody who has been as generous and giving and fundraising for so many other things and so many other people is getting a little help,” Adam said. “And she’s taught our children the same thing. It’s a big circle.”
The Dauers often come home to find meals in a cooler on their front porch, or bags of groceries and other items sitting at their front door. The donors are almost always anonymous, and Adam wishes he could thank everyone individually.
“We are so appreciative, and it’s difficult for us to know who is donating and who is reaching out,” she said. “We just want everybody to know how appreciated all of that is. We’re not able to thank everybody. It kind of bothers us that we can’t thank everybody, but we understand.”
‘The support that she’s getting is not the result of her being an ALS-diagnosed patient. The support she’s getting is because she’s Debbie.’
So it’s no surprise that the community has supported her the way it has. And it’s not just the Lawrence community, either. Deb’s brother, Michael, is a musician who works primarily down the shore, and he’s working on putting together an ALS benefit concert. Her former students and colleagues in Robbinsville have rallied around her, and a fundraiser is in the planning stages. She’s heard from people from her past and present, and each message has touched her deeply, she said.
“It’s amazing how, on top of the fact that this bracelet thing has taken off and the community has completely rallied around us in such a positive inspiring way, I’m receiving, like, notes and cards and text messages and phone messages and just any type of contact from people from all different parts of my life,” she said. “I’m really appreciative that that’s happening while I’m alive. People express those feelings after somebody has passed away. I’ve been blessed to be able to make contact with all these people from all different parts of my life while I’m still here and able to communicate with them.”
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Deb has always been a gifted writer, Norm said. Her blog has turned into an outlet not only for Deb, but for her friends, family and others, as well. She’s had some contact with other families who have dealt with ALS and ulcerative colitis through the blog, but for the most part, it gives others a look at what it’s like to be chronically ill, she says.
“Nobody ever wants that to happen to them, but unfortunately, it happen to a lot of people,” she said. “I think there are some people who choose to never talk about that, and that’s OK. But it gives people an in, sort of a look to see, ‘Well, what is that like, and how do I help somebody who is going through that?’”
Adam says he’s watched Deb become “an inspiration” as people—local and otherwise—have followed her fight.
“There are some moments when, of course, because you’re human, you’re going to break down,” he said. “It’s almost ridiculous how well she is dealing with what’s going on, both inside and around her. The whole bracelet thing, now, it almost happened so fast that it’s forcing us to do the whole website thing, which we really weren’t even thinking about at first. It’s just so much for people around us to handle, our family, our loved ones, our friends. You start to feel guilty almost that they’re doing so much work. We know they’re running around town. It’s a great feeling, of course.”
Everybody who has ALS is different, Deb says, so she doesn’t know what the next step of progression will be, or what her outlook is. Her doctors evaluate her needs one appointment at a time, checking on her muscles, speech and breathing, because respiratory strength will likely begin to diminish at some point.
Whatever happens, her friends and family, new and old, will be there. Her parents are certain of that.
“The support that she’s getting is not the result of her being an ALS-diagnosed patient,” Norm said. “The support she’s getting is because she’s Debbie.”
A fundraiser will be held at Mercer Oaks in West Windsor to raise money for the Dauers. Tickets are $40 per person, which includes buffet lunch, a cash bar and more. Details about the event can be found online. To donate to Deb Dauer’s fundraiser, visit the CrowdRise page.