Chicago Tribune: At edge of darkness, blog sheds light on life
Written by Dawn Trice
Wednesday, 23 December 2009 18:57
The topics Anne Marie Schlekeway has broached in her young blog, KissMyALS.com, go way beyond where mere mortals would even dare tread.
Her Nov. 22 entry is about pooping: "To speed the process while on the pot -- lift both arms over your head. I don't know why this works but it does every time!"
Her Nov. 4 post examines one of the early signs of her ALS, or Lou Gehrig's disease: "Trouble breathing in the missionary position during sex: what I thought was me getting fat was really weakened muscles in the diaphragm."
I don't have to tell you that Schlekeway, 43, is no shrinking violet. But what you wouldn't know from the above posts is that this Gold Coast resident used to be a buttoned-down executive, logging 14-hour workdays, traveling the world and swilling diet Coke to help keep her bearings.
Schlekeway never expected to be here -- or to go there in a blog.
"But you can't wallow in self-pity," said Schlekeway. "When you have an expiration date on your forehead, you're lost if you don't have a purpose."
Her purpose is twofold. She uses her blog, which she began in October, to give an honest accounting of living with a terminal disease. She uses her business -- she quit her job and now owns a small executive-coaching firm -- to persuade corporate employers that a highly productive worker and a healthy worker should be one in the same.
On a recent afternoon, when Schlekeway and I met for lunch at a swanky downtown Chicago restaurant, the first thing that hit me was how healthy she appears.
She wore a burnt-orange knit dress and high-heeled black patent leather boots. (Ironically, she stumbles in flats because of weakened leg muscles, but not heels.) She walked toward me in a flourish, greeting me with a family-style hug and broad smile.
To look at her -- the auburn Rita Hayworth hair, the green eyes -- you wouldn't know that just a couple of weeks ago, her doctor suggested that she have surgery soon to insert a feeding tube (even though she may not need it for a couple of years) while her breathing can still handle the procedure.
You wouldn't guess that Schlekeway, who is single and doesn't have children, has plans for in-home care when she can no longer be self-sufficient. Or, that every day she notices some change in her body: Her hands might shake when she puts on mascara. Writing and typing have become laborious. She needs several napkins while eating because she may drool.
The only thing that's most evident about her illness is her speech. It's slurred and to compensate for what she calls her "ALS accent," Schlekeway, who's quite chatty, carries yellow notepads. She purchases them in bulk. "I find that when people meet me, especially men, they treat me like I'm stupid because of my speech," she wrote during our lunch. "I don't waste words anymore. I even stopped swearing because it was a waste of my energy."
Her speech began slurring in 2004 and was the first sign of her disease. Tripping and falling came next. After a few years of doctors attributing her symptoms to her being depressed or overworked, she finally was diagnosed in late January with a neuromuscular disease and given 14 months to live.
Six weeks later, she was diagnosed with ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. This changed her life expectancy to 3 to 5 years.
"So the experience was one of having been given a reprieve," Schlekeway laughed.
With her reprieve, she carries out her mission, which, in the end, is much more about living than dying. She said it's important for her to help employers create a healthier workplace because she neglected her own health during much of her work life.
At the restaurant, as Christmas songs played overhead, I asked Schlekeway what she liked about the holiday season.
"I've always been the best gift-giver," she told me and then she paused. "Sometimes I have to dig deep to find the gift in my illness, but I'm always looking for it."
KissMyALS is sponsoring a fundraiser on behalf of ALS research in February. You can visit her blog to find out more information.
While there, take a look at her Nov. 10 entry, which sums up her philosophy beautifully: "I don't make my anger wrong. ... I allow it to be here. I use it as fuel. ... I find that I tolerate a lot less (expletive) from people now. I simply don't have time. I demand better service from vendors etc. ... I may not like the wave that just hit me but it washes away soon enough and I am still moving forward."