Blogger with ALS lived life to fullest
Last Updated on Saturday, 11 December 2010 13:28
Written by Dawn Turner Trice
Friday, 10 December 2010 00:00
Former exec faced terminal disease with brutal honesty, generous spirit
December 10, 2010 | By Dawn Turner Trice
In the short time I knew Anne Marie Schlekeway, I'd say her philosophy of life could be summed up this way: Give of yourself! Be grateful! Live life to its fullest!
Give of yourself! Be grateful! had been how Schlekeway lived long before she was diagnosed in early 2009 with ALS, or Lou Gehrig's disease. Live life to its fullest! was something she came across later.
By the time she died Thursday afternoon at her parents' home in west suburban Minooka, the 44-year-old Schlekeway seemed to have mastered all three.
The first time I visited with Schlekeway was Dec. 7, 2009. We met in a colorful and vibrant downtown restaurant to talk about her fledgling blog, KissMyALS.com
. The second time I met with her — though we often corresponded via e-mail — was on Tuesday, exactly one year to the day of our first meeting. This visit was in a hospital room.
What attracted me to Schlekeway's story a year ago was how brutally honest she was in talking about living with a terminal disease. She wrote unashamedly and with abandon about how her disease was evident in nearly every part of her life — including when she had sex and used the restroom.
The day we met, she entered the restaurant with a flourish. She wore a burnt-orange knit dress and high-heeled black patent leather boots. She had Rita Hayworth hair and a red lip-glossy smile. She greeted me with a hug.
Because her speech was slurred, which in 2004 had been her first sign of her illness, she had begun rationing words. She said she no longer swore. She communicated most effectively by writing on yellow note pads — which she purchased in bulk because she had a lot to say — and by nodding, shaking her head and using sweeping arm gestures.
This week, when I entered her hospital room at the University of Illinois at Chicago Medical Center, Schlekeway was hooked up to machines, including one that helped her to breathe, and was drifting in and out of consciousness.
And yet, when she saw me, she smiled and gave me the thumbs-up sign. Her mother, Marjorie Schlekeway, was at her bedside, along with a close friend, Catherine Gallogly. Anne Marie's father, Ron Schlekeway, was at their Minooka home preparing for his daughter to move in once she left the hospital.
Marjorie Schlekeway is an artist who paints using watercolors, pastels and inks. Gallogly is a home hospice nurse who has a two-woman show with her daughter, Ann, called "Tying Up Loose Ends," in which she tells end-of-life stories about some of her patients.
Over the last several months, Marjorie Schlekeway and Gallogly have become close friends, united by their love for Anne Marie, but also a common bond of having reared strong and independent daughters.
"When Anne Marie was a little girl, she was so stubborn and headstrong," said Marjorie Schlekeway, as she began to sob. "People told me, 'You may not like it now, but you're going to love it when she's grown up.' And I look at her now and she's such a fighter. She's a wonderful person."
As we talked, Gallogly moved between the bed, where she dabbed at Anne Marie's mouth with a tissue, and a chair by the window, where she rubbed Marjorie Schlekeway's back.
Over the last few months, Anne Marie, who never married or had children, had been giving away or selling her belongings, including 200 pairs of shoes and bags and bags of clothes.
"She had planned to open up her apartment to allow friends to come take other items," said Gallogly, "She wanted to see their faces as they took what they wanted, but she never got to that point."
Anne Marie once had been a highly caffeinated corporate executive but quit her job not long after her diagnosis to start an executive coaching firm, offering what she called the "Master Plan." It was her attempt to persuade corporate employers that a highly productive worker and a healthy worker should be one and the same.
She often traveled and gave presentations, but when her speech became so impaired it was impossible to understand her, she delivered what she called "speechless speeches" in which she would sit on a stage as audience members read from a PowerPoint presentation that played on a screen beside her.
Her last presentation was in November, before her health dramatically declined this month.
Although this is Anne Marie Schlekeway's favorite season, Gallogly said that her friend never limited her giving or gratitude to one time of year.
"Some people are stingy when it comes to giving of themselves," said Gallogly. "But Anne Marie was inviting people to come see her (even in the hospital) and say goodbye. She was giving herself away. She was saying, 'Live big and really be used up. But most of all, contribute.' I'd seen her cry. But she would always wipe the tears off and say, 'OK, what's next? Let's go.'"