from survivor to dvocate

Trisha Rutten turned a health crisis into a way to change the world

Nelson

Trisha Rutten is a fighter. She’s a survivor.

She sits at her desk in her sunny cube of an office, scrawling notes on her desk calendar with a purple pen. She is articulate and vivacious; a well-spoken leader. She has an easy smile, accented by new braces that occasionally give her the look of a guileless teenager, just for a second, a flash, before she gets back to business. Today she’s wearing a crisp, white blazer, her long hair is curled and her make-up is expertly applied, but she gleefully admits that this isn’t always the case. “I usually look like a hobbit,” she laughed, citing a penchant for slouchy sweaters and Doc Martens. But when she’s at work, she slips on the role of senior manager of the Alzheimer’s Association easily. And she’s profoundly grateful to be here, not just in this ordinary office in a nondescript office park on the North Dakota plains, but physically present here on the planet, in this moment. That’s because nine years ago she was flat on her back in a hospital bed, with no guarantee that she would ever get up again.

Life can change in an instant. That knowledge is etched into Rutten’s soul. And it gives her a deep and visceral connection to the families and individuals she serves. It’s made her work better and her family stronger. It’s made her into the person she wants to be.

She was a student at Minnesota State University Moorhead pursuing a political science degree when her life changed forever. Rutten has always had a passion for education, an internal drive that’s fueled her since she was a little girl. She was a non-traditional student even then, a 26-year-old wife and the mother of two children, a then four-yearold daughter named Paige and a two-year-old son named Gavin. Getting a college degree is a challenge in itself, and doing it with a home and family to manage (including a son on the autism spectrum) required razor-sharp focus. But Rutten always felt that the sacrifices were worth it. And balancing her own dreams and a family was always one of her goals. “Education is very important to me and I really, really wanted to tell my children, especially my daughter, that she could be a working mom and have an amazing life,” said Rutten.

Trisha Rutten was two years into her studies when her life turned upside down. She had a massive stroke at the age of 26. She remembers very little about the moments and months afterward, but the look on her sister’s face when she came into the hospital room is etched on her memory. Her sister is an accomplished nurse practitioner and one glance at her face told Rutten the situation was dire. Rutten was exhausted and disoriented. Her family was clearly devastated. Rutten herself couldn’t speak. But she was already recalibrating her life.

“I was lying in the hospital and thinking ‘This is really, really, really bad.’ And I haven’t done any of the things I really wanted to do,” she shook her head, remembering. “Life changes in an instant.”

The things she wanted to do flashed through her mind. But there were more pressing issues to consider―first a clotting disorder then a pulmonary embolism. Once her condition stabilized, Rutten struggled to get and stay healthy, to find the right medication and to find her equilibrium, both physically and mentally. She had to relearn basic skills like talking. She was rebuilding her life, piece by piece. And it gave her a new and abiding appreciation for even the most ordinary moments.

“I’ve really kind of lived for the day since then,” she said. “Moments really matter to me. Every moment matters with my kids, too. Everything changes so fast.”

She wasn’t guaranteed to survive, much less thrive. But she did. And she wasn’t done yet – not by a long shot. “I had a fire in me,” she said. And the stroke only stoked the fire.

She charged back into classes at Minnesota State University Moorhead and graduated with honors – and a grade point average of over 4.0. Then she did something that only a tiny fraction of the most gifted students in the world are able to do―she got into Harvard Law School. It had been a dream of hers since she was a girl. “I think the first time I said I wanted to go there I was seven,” she said. “I would tell my dad I wanted to go there and he laughed.” But Rutten is a woman who knows what she wants. She excelled at Harvard, earning a Master in Public Administration in International Development (MPA/ID) and an international law degree.

But it hasn’t all been easy. Her first marriage ended and she still feels she’s making up for the time and memories that the stroke stole from her. “I was very young and my kids were very young,” said Rutten. “There’s a lot from when my kids were young that I don’t remember. And I struggle with that. But I’m very lucky to be here.”

So now she makes every moment count. “I could just drink them in,” she said. “They’re the lights of my life, both of them.” Paige is now a confident 14-year-old who resembles her extroverted mother in both looks and personality. Gavin is 12, smart, analytical and curious, a gentle soul who surprises his mother every day.

Four large framed photos sit on her desk, images of her kids and her husband Brad Rutten. The couple met through a mutual friend and their partnership is a strong and contented one.

“He is my soulmate,” she said with a grin. “I never thought I’d get married again. I never thought I’d trust anyone with my kids. And here is this amazing man who not only loves me, he loves my kids.”

The two married in an intimate ceremony underneath the Eiffel Tower in September 2014. They exchanged vows as a family and then took an extended vacation across France, Italy and Germany. When they returned to their home in Fargo’s Osgood neighborhood, they settled into a new routine as a blended family.

Rutten’s husband co-owns High Point Networks, a West-Fargo based information technology company. He has the same analytical nature as Gavin, which creates a sort of balance in the busy household. “We have two very introverted boys and two very extroverted girls,” laughed Rutten. Family life involves watching movies, going to baseball and hockey games and spending the evening meal chatting around the table. With two working parents, Rutten is quick to admit that the food is usually take-out or delivery, but where the food comes from is never the point―the goal is to get everyone around the table. After dinner, the four might pull out a few board games. Life and Risk are definite favorites. “Global domination in our household is a really big thing,” said Rutten, arching an eyebrow. “And we’re really competitive.”

These easy scenes from ordinary domestic life are not something Rutten takes for granted. She knows how easily they can slip away. “Life is not a guarantee in any way, shape or form,” she said. “You are not guaranteed anything.” And this realization connects her to her clients and their families in a deep, abiding way.

Rutten is one of the first points of contact at the Alzheimer’s Association. She meets families who are in raw emotional states, who are struggling with the concept of mortality, just like she did nine years ago. “I think I can really relate to people who are coming in because they have the same realization that life is short,” she said. “Family dynamics are complicated and that carries over into adulthood.” Yet despite complicated relationships and emotions, Rutten said that the people that come through her door are longing to find ways to stay connected, to embrace their loved ones and to live every day to the fullest. “This disease (Alzheimer’s) is 100% fatal,” she said. “Every day is a gift.”

Despite its name, the Alzheimer’s Association serves individuals who suffer from a variety of disorders. “The most common misconception about the Alzheimer’s Association is that we only serve people with an actual diagnosis of Alzheimer’s disease,” said Rutten. “In actuality, we serve people with all types of dementia including vascular dementia, dementia with Lewy Bodies, Frontotemporal Lobar Degeneration, mixed dementia, Parkinson’s disease, Creutzfeldt-Jacob disease, etc.”

The Alzheimer’s Association provides affected individuals and their caregivers with tools and services that can help families get the most out of the remaining time with their loved ones. The organization’s services cover a wide range of options, including an introductory consultation, connecting clients with in-home care, enrolling individuals in the MedicAlert® + Alzheimer's Association Safe Return® which alerts families if an individual wanders away from home and staffing a 24 hour-help line. “We’re mainly that first step to get them rolling and get them connected with the services they need long term,” said Rutten.

It’s a national organization, but the dual state Minnesota-North

Dakota chapter has been able to accomplish big things in the region, thanks to strong local partnerships and funding from the government. “The North Dakota Legislature has been very generous and has given 1.2 million to help serve people with dementia in North Dakota,” said Rutten.

Committed funding has allowed the local chapter to be more flexible and innovative in the way they seek care solutions―and that’s attracted attention from across the country. “North Dakota is kind of the gold standard for how we work with the government,” she said. “We work with our legislature hand in hand. Other states are looking at how we do things.”

The North Dakota office regularly takes calls from chapters in other states, offering advice on how to create strong partnerships with lawmakers and integrate technology into services. The local chapter values creative solutions and a collaborative office culture, which isn’t always the case in the industry. “Failure isn’t a word we use in our culture― everything is viewed as a learning experience,” said Rutten of her office, which has a staff of nine women. “We are encouraged to dream big and think outside the box. It’s a very empowering environment.” Rutten asserts that the surge of Alzheimer’s and dementia diagnoses underscores the need for this kind of outside the box thinking.

“It’s just become an epidemic,” she said. “We’re going to see more and more people find innovative solutions.” And her organization will continue to be on the front lines of that fight. “Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health,” she said, quoting the organization’s mission statement.

The Alzheimer’s Association is the top fundraiser for Alzheimer’s research in the country. And the organization may soon have additional research support. In June the Senate Appropriations Committee approved a 60% increase in Alzheimer’s research funding as part of the Alzheimer’s Accountability Act, a move that would allocate an additional $350 million to fund Alzheimer’s disease research if signed into law. The data says that this influx of research funding will be a game changer for Alzheimer’s disease.

“This is the sixth leading cause of death in America,” said Rutten. “Every other disease in the top 10, when they’ve been funded, death rates decreased immensely. We’re excited to see what happens.”

More research means more understanding of the brain and how it functions in both healthy subjects and Alzheimer’s patients. Once brain function is mapped and researched, Rutten is hopeful that scientists can provide new insights and treatment strategies to afflicted individuals and their families. “I hesitate to say we’ll find a cure,” she said, “because I don’t know if that’s possible; just a way to slow the progression of Alzheimer’s. That will be a turning point. But we’re not there yet.”

Until then, the Alzheimer’s Association will continue to raise funds for research and Rutten and her team will continue to foster the person-to-person contact that improves lives day by day. Events like the Walk to End Alzheimer’s at Scheels Arena on September 27 and the annual Reason To Hope luncheon not only raise funds for research, they also create a necessary dialogue about the disease and its effect on families in the region. These events and cultural movements like the #EndAlz hashtag on social media and the popularity of films like “Still Alice” and “I’m Still Me” have helped get people talking, but Rutten says there’s still a long way to go.

“I wish people would feel more comfortable talking about memory loss in any form―whether they are the person living with dementia, a caregiver, spouse, family, or friend,” she said. “It’s still very much a taboo subject. People don’t like to talk about memory loss. There’s such a misconception around all of that and misconception turns to fear. ”

Rutten has seen this reluctance to discuss the subject even in her own family. It’s just another reason that she finds her work to be so meaningful. “I have witnessed the effects Alzheimer’s has had on my grandfather, my grandma (his caretaker) and the rest of the family. When I found out the Alzheimer’s Association was hiring for my position it felt like the right time and the right mission. It is woven in my soul to be working at the Alzheimer’s Association. I have skin in the game.”

Trisha Rutten has come a long way since she was a little girl with a dream of an education and overcome much on the road back to physical and emotional health. Now she’s using her skills and her experiences to make a difference in a field that constantly challenges, surprises and inspires her.

“When I was young I believed I could change the world,” she said. “I spent years in school receiving an education to acquire the tools to be the change. Eight years, two schools, three degrees and thousands of dollars in school loans later, I realized the only work I really had a passion for was non-profit work. I can honestly say I look forward to going to work every day. I feel like I’m a part of something bigger than myself and I know that I am helping change the world.”

She smiles and settles back into her chair. “I’m exactly where I need to be and where I want to be,” she said. “And I get to be me.”

It doesn’t get much better than that. [AWM]