Anne Johnson is dead, and as a longtime newswoman, she’d be the first to tell me not to bury the lede.
Death is hardly the most important thing about Anne, of course — a woman of estimable talents, boundless generosities and a desire to pull the ripcord on life’s myriad adventures. But death has been the focus of Anne’s narrative for the past year and a half, ever since she was diagnosed with ALS.
For those not familiar with that three-letter illness, it’s shorthand for amyotrophic lateral sclerosis — a disease so grim that its almost unpronounceable moniker is somehow fitting. Nobody wants to speak those words, or have anyone they love ever hear them. Sometimes called “Lou Gehrig’s Disease” for the baseball Hall of Famer who died of it at age 36, ALS is a rapidly progressing neurodegenerative disease that gradually destroys muscle function. It often begins, as it did with Anne, with a strange seizing of muscles and a tendency to drop things. It advances with awful speed to the loss of basic functions: speaking, walking, swallowing, breathing. As Anne brusquely noted in her November 2011 cover story for Folio Weekly, “The Bitter End,” “There is no mystery about death with ALS. It is slow starvation, suffocation and suffering.”
Anne worked at Folio Weekly two decades ago, as well as at The Florida Times-Union and Jacksonville Business Journal, and her name is familiar in local journalism circles. But her memory, to be celebrated by friends and family on June 16, will always be shaped by her courageous — even insurrectionist — battle against ALS. For she did not submit; not to the diagnosis, or depression or the platitudes that some use to ward off unpleasant truths. Instead, she worked and laughed and traveled. She fought for every breath that the disease tried to steal.
Even at the end, in hospice care at home, when doctors doled out morphine in stingy three-day supplies, she cracked jokes about their lack of faith in her staying power. Tapping out words with her one good hand on the keyboard that allowed her to communicate, she wrote, “Give me some credit.”
The small, precious window of existence that each of us gets closed for Anne Johnson last Monday, June 11. But, true to form, she plans to defy end-of-life prescriptions. She bequeathed her body to science, determined to hurl her small frame and formidable DNA into the effort to understand, and hopefully cure, ALS. Like a lot of neurological diseases — and those that share some of its symptoms, like Alzheimer’s and Parkinson’s — its cause remains a mystery. Some research has shown links to cyanobacteria, a neurotoxin better known as blue-green algae. Others think the trigger may be a variety of environmental agents, including pathogens and pesticides. But solutions or cures remain frustratingly out of reach. ALS afflicts about two in every 100,000 people, or about 30,000 Americans at a time. With no known treatment for the paralysis, 50 percent of ALS patients die within three years.
Anne, for all her fight, made it less than two. She never welcomed death into her home. She kept its shadow at bay with her own strong will, and the devoted help of her family and friends. But her fundamental pragmatism was her greatest defense against the horrors of ALS.
“Despite my regrets at not having a shot at a longer life, I am curiously OK with the diagnosis,” she wrote in her first ALS piece for Folio Weekly, soon after her diagnosis, “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. I mean, we all have to die of something, and knowing of what and about when is somewhat comforting; it kind of takes the fear and mystery out of the downhill portion of life. It allows you to quit putting off all those things you planned to do ‘someday’ …. It allows you the luxury of taking slow walks through the park, knowing next year you may not be able to walk at all, to leave behind recordings of your voice, in case you can no longer speak; to buy and sign birthday cards for your family for the next 10 years and leave them in a lovely box.”
Read Anne Johnson’s Folio Weekly Backpage Editorial about her ALS diagnosis, “Life Sentences,” at http://bit.ly/tjSj7s. Read her Cover Story, “The Bitter End,” at http://bit.ly/rQ130E. Donate to ALS research in Anne’s memory at http://bit.ly/MQRCPH.