Anne M. Johnson, who conquered a lifetime of loss and tragedy with a true joy of living, died June 4 at age 64 after staring down amyotrophic lateral sclerosis with her typical no bull approach.
The Fleming Island resident made her name as a journalist, businesswoman and community leader, but she was just as passionate about sailing, gardening and helping others.
In 2010, her fingers started locking in place and glasses began slipping from her hands and crashing to the floor. She pushed for answers and was told she had ALS, more commonly known as the dreaded Lou Gehrig’s disease. ALS attacks the nerve cells in the brain and spinal cord, shutting down the body, bit by bit, while the individual is fully aware of what is going on.
“Despite my regrets at not having a shot at a longer life, I am curiously OK with the diagnosis,” Ms. Johnson wrote in one of two articles on her experience for Folio Weekly. “I turned 63 last week and realized I have led a full and satisfying life; I have pretty much done all the important things I set out to do…The saying, ‘Live each day as if it were your last is not trite; life often holds other plans for you, some of which you could not ever dream up. “
Folio Weekly editor Anne Schindler said that Ms. Johnson’s articles were so impactful – they ran in publications across the country.
“Her story makes you so aware of the things you take for granted – like the ability to take a breath,” said Schindler.
Professionally, Ms. Johnson stacked one success story on top of the next. She was the owner of a genealogical research company, “Who’s Your Daddy.” Prior to opening that business, she was managing editor of the Jacksonville Business Journal, a business writer for The Florida Times-Union, editor of Folio Weekly and the author of four books. Her proudest accomplishment was her work as founder of Florida Care Giver magazine and Options for Elder Care.
In 1985, she stole the heart of Jimmy “John” Johnson, the guy next door who’d told her to feel free to use his pool anytime. When she climbed the fence to his backyard for a 2 a.m. swim, their life adventure began. In 1988, the duo moved onto their sailboat and lived on local rivers for 10 years. During that time, they took off for extended sails, but eventually returned to life on land with just $10 in their pockets, John’s military pension and Ms. Johnson’s hard-driving confidence that led to great professional success once again.
“She’d always been held back and told she couldn’t do this or that,” John Johnson said. “I told her, ‘I’ll get behind you 100 percent. I’ll support you in anything you want to do. And, I did.”
“Anne didn’t suffer bullies or fools,” said Karen Brune Mathis, Ms. Johnson’s business editor at The Florida Times-Union in the 1980s and a treasured friend ever since.
Mathis remembers what happened when an editor cursed at Ms. Johnson in a meeting.
“She said she didn’t allow her children to talk to her like that so she certainly wouldn’t allow an editor to do so,” Mathis said. “He never talked to her like that again. Never. He was scared of her. She really saved all of us.”
Twenty years ago, Ms. Johnson saved Mathis’ son from stepping on a rattlesnake when he was a toddler. “I will always consider her a hero for that. We were going into the backyard where we were having a cookout. Alex didn’t see the snake and I didn’t either, but Anne did. She pulled him back in and shut the door.”
Ms. Johnson pushed a young Helen Sullivan to reach beyond her limits and enter a sailboat race for women only, forging a 24-year-friendship.
“I don’t know how to sail,” Sullivan protested at the time.
“What’s the worst that can happen?” Ms. Johnson asked.
“The boat can sink,” Sullivan said.
“You have insurance, don’t you?” Ms. Johnson countered.
They entered the race and finished last, but the lesson was huge for Sullivan and other women who Ms. Johnson encouraged.
“It was a very important thing to convince a woman who had never taken a boat out without a spouse on board that she could do it and it didn’t matter what place she finished. What mattered was that she did it. Anne was all about empowering women.”
Ms. Johnson was born March 19, 1948 in Miami, Fla., to Laurence and Marjorie (Neal) McLaughlin, but was left to be reared by her beloved grandmother, Muriel LeClair McLaughlin. Ms. Johnson moved to Jacksonville in 1974.
She served on the boards of numerous nonprofits in Duval and Clay counties and was a founding member of the Clay County Democratic Women’s Alliance. She was a member of the Jacksonville Women’s Network, Leadership Jacksonville and many professional organizations.
Her life was punctuated by heartbreak and loss, beginning with a very hard childhood, and continuing through the suicide of her previous husband, the tragic loss of her beloved granddaughter and the subsequent suicides of her own daughter and a close friend.
She wrote of how her keen understanding of suicide’s effect on others impacted her own decisions on how she would face the end of her life.
“One person with end-stage ALS likened it to being buried alive,” she wrote in Folio Weekly. “I am not looking forward to that. What I do want, and what I think most people want, is choices and the ability to make them in the most humane way possible for themselves and for the benefit of their loved ones.”
Soon after her diagnosis, her daughter Dianne relocated to Florida and dove into the caregiving. The irony of the founder and publisher of Florida Care Giver magazine having such enormous caregiving needs was not lost on them.
“I’d do something wrong and she’d say, ‘Didn’t you read the magazine?’ I’d say, ‘I didn’t read it. I just laid it out,’” said her husband, who’d steered production of the magazine.
Ms. Johnson, her husband and her daughter planned for the day when she would stop taking food through the feeding tube and increase the morphine to a level that would control the pain. The disease progressed from her right arm to her legs, to her left arm. She lost her ability to speak, but communicated through a touch screen that would say what she tapped out with the single finger that still worked. As her respiratory function deteriorated, her suffering was obvious.
“She made a conscious decision,” said her husband. “She didn’t make it on her own. It was with me and Dianne. It was a family decision. We didn’t sit around and cry.”
Afterwards, her daughter tried to process the loss.
“I don’t have the same gift for words as my mother had, but I can tell you this: I adored that woman. She always put me first in her life. She never said an unkind word to me. She showered me with love and support and would have given me her dying breath if I had wanted or needed it. She had an amazing sense of humor and we laughed together until she lost consciousness. I was so unbelievably lucky to have her in my life to guide me, to love me and to be my friend.”
Ms. Johnson is survived by husband, Jimmy “John”; daughter, Dianne Lynn Boulay; granddaughter, Celine Anne Boulay; sisters Lynn Lisenby (Tom) (all of Fleming Island) and Eileen Arnold (Craig) of Minneapolis; brother Randall McLaughlin (Roxanne) of Cocoa, Fla.; two aunts, many nieces, nephews, cousins and friends.
She was predeceased by both of her parents, daughter Joyce Muriel Newberry and granddaughter Amber Dianne Newberry.
In lieu of flowers, donations may be made to the ALS Association Florida Chapter http://tinyurl.com/c7unses or the Anne M. Johnson Democratic Women in Journalism Scholarship at the University of Florida, make the check payable to the Clay County Democratic Women’s Alliance (CCDWA) or UF and make a notation that it is for the Anne M. Johnson Democratic Women in Journalism Scholarship, 1691 Misty Lake Drive, Fleming Island, Fl. 32003.