Area woman writes cookbook to honor daughter, raise awareness of strokes
Monday, June 10, 2013 11:29 AM
Barb Nigon of rural Marion is honoring her daughters with the publication of a special cookbook, "Life is Fragile," with the cover featuring a photo of two girls that remind her of her own daughters.
Barb Nigon's cookbook, "Life is Fragile," was written in honor of her daughter, Celeste, who survived a severe stroke. PHOTO BY GRETCHEN MENSINK LOVEJOY/CHATFIELD NEWS
Inside, the pages contain recipes for dishes such as The Alaska Funny Moose Smoked Salmon and Another Rub for Fish. There's also Ann McGuire's Chicken Supreme and Wonderful Candies Two Ways that are so sweet.
"The picture on the front cover always reminded me so much of my girls...they always had aprons, and Celeste always had her 'iggy tails,' and Chena, her short blond hair. The part where the girl with the 'iggy tails' is cracking an egg is definitely why I chose this cover and this title...life is fragile," said Nigon, sharing the reasons why her cookbook is a defiant effort to support stroke prevention research, following her daughter, Celeste Ask's, severe stroke at the age of 34.
The Chatfield High School alum, now of Farmington, Minn., is married and has two sons, Jonah and Isaac, with her husband, Andy. She had a job at a local mortgage company as a closing manager, until the morning of June 6, 2011, when she had a persistent headache that changed her entire life, but certainly not her will.
Nigon recalled how that day began. "I was on my way home from volunteering at Saint Marys as a surgical messenger, and Amy, Celeste's coworker, called and said that Celeste was on her way to the hospital in Burnsville and that she had collapsed at work," she said. "It happened at 10:30, and I got the call at 12:20. I called my husband, Walt, and he came home, I packed some clothes in case I'd be with her boys for a while, and when we got there, Amy said they were taking her to the University of Minnesota and that it 'doesn't look good'. We got there at 2, and she was in the intensive care unit already because they'd put tubes in to drain the pressure off her brain, so we thought we'd get to see her, but the doctor said that they didn't have time...we saw her going around the corner into surgery."
Nigon continued, "They said they'd lost her twice, once on the way to Burnsville and also en route to the U of M. And on the table, her blood pressure started dropping."
Her diagnosis was that her stroke was caused by a developmental venous anomaly (DVA), or a malformation of blood vessels that, according to an article in the Minnesota Stroke Association's magazine, Stroke Matters, usually exists without causing any problems, but which can cause bleeding on the brain and stroke in a small percentage of people who have it.
She'd had a persistent headache that she attributed to her job stress, but at the same time was concerned enough about to seek a neurologist's advice...something she wasn't able to get because an appointment wasn't available.
Celeste spent 12 days in intensive care - part of her skull was removed to relieve pressure - and was then sent to a step-down unit, where her family was left to wonder what would become of her.
Barb remembered if she were to be sent to the fourth floor of the rehab unit, it was a very bad sign, and if she were to be sent to the fifth floor, she would be considered as having more hope than remaining in the vegetative state most patients on the fourth floor were in.
Her husband and sons visited as often as they could, her parents and in-laws did what they could to stabilize home life for Isaac and Jonah, who stayed with Andy's parents.
It took a while before Celeste could recognize her children and convey that she knew who they were, but she was never alone throughout her stay in the hospital and rehab.
Her mother stayed in her room, sleeping on the floor or in a chair, and if she wasn't available, Celeste's boss's wife was there. "Andy would come after work, and it took a lot of teamwork between the families. The whole month of July to Aug. 1, she was in rehab, and she was basically a vegetable. She couldn't talk, she had a tube feeding her, for a while, she didn't know who the boys were...the doctor said she would never be the same. But as she started coming around," Barb stated, "we started seeing things that were so Celeste."
Nigon remarked that some milestones the family marked were when Celeste started signing words using the American sign alphabet she'd learned in grade school to communicate with a deaf classmate, and when she began to show defiance for her condition when the doctor told her she'd "never be 100 percent" and she replied that in that case, she would be "99.9 percent."
It took Celeste a month to be able to say her sons' names, but she made her parents proud when she made progress as she said "Happy birthday" to Walt and when she took every opportunity during therapy sessions to bring her body and mind back to top condition.
It was the days spent sitting in rehab that frustrated Barb, who wished for something she could do to help raise awareness of strokes and their unexpected prevalence in younger people.
"I thought, 'What can I do? I can make a cookbook!'"
Next came a community education cookbook class, an entire winter exchanging recipes with a friend whom she'd already given her own recipes and a couple financial leaps of faith and an elementary school class drawing project.
Then the Nigon family cookbook, "Life is Fragile," arrived on the Nigons' doorstep. Barb stated that she and Walt cried upon seeing the completed cookbook, as it offered some of the family's best recipes, dividers drawn by Isaac's classmates, advocacy and stroke awareness information, such as what to do in case of a suspected stroke, and most importantly, Celeste's story of illness and recovery.
"I wanted to have it done by a year after her stroke, because she survived her first year," Nigon related, noting that she received the draft copy on March 1, 2012, the first shipment of 400 cookbooks arrived on June 1, 2012, and that she and Walt ordered a second shipment of 200 copies because demand was great.
Celeste's family, including her parents and sister, Chena Tierney, have all taken part in stroke awareness and research efforts. They participated in a stroke walk held in Rochester for the first time, as one is often held in Como Park in the Twin Cities but has never before been held in Rochester.
They also do what they can to assist Celeste in facing the daily challenges of dealing with the effects of her stroke - movement and vision impairment and short-term memory loss - long distance, as her husband has stood by her in transporting her from one place to another since she can no longer drive, one of the bigger frustrations of her condition.
Celeste told the Stroke Matters magazine that "Andy is such a saint and so helpful...just having to deal with it is hard, but he's doing well...it's such a change in life."
Barb acknowledged that Celeste has learned who her forever friends will be in the wake of the stroke. Gone are the ones who see her staying home as a luxury or those who don't understand that she'd rather be able to drive her sons to the grocery store or their basketball games, coach their games like she once did.
The friends who know that she's being as brave as she can be have stood with her. Barb pointed out that the tenacious young woman she once knew is now tenacious in different ways, not liking surprises at all like she once might have, but who is also now ready to speak to anyone about the hazards of suffering an unrecognized stroke, about how it can happen to anyone and how she has found happiness again.
Barb still has copies of "Life is Fragile" available for friends and anyone hungry to help raise stroke awareness. She perused the pages once more, pointing out that "it was a funny feeling, pretty cool" to have the cookbook in her hands, but an even better feeling to have her daughter back since she could still be in a nursing home.
"We have my name on the cookbook, but Walt wanted me to put Celeste's initials on it, too - 'C.A.A.' - since it's for her and she's also quite a cook," Barb explained. "But mostly, life is fragile. What it is one day, it might not be the next day. There's a light at the end of the tunnel, and we're very, very fortunate to have Celeste."
To order a cookbook, contact Barb Nigon at (507) 285-0496 or email her at firstname.lastname@example.org. Copies of "Life is Fragile" are $20 each and proceeds benefit stroke prevention and recovery research through the Minnesota Stroke Association.