One Woman’s Response to Lou Gherig’s Disease: Kiss My ALS
Anne Marie Schlekeway is a former Landmark Education Staff member in Chicago. Last year, after gradually losing her ability to speak, she was diagnosed as ALS, commonly known as Lou Gherig’s Disease, which slowly attacks a person’s ability to control their muscles. In Anne Marie’s case, the disease started with her tongue.
This was a big blow to Anne Marie, as she was a singer and performer and renowned by her friends for her bold personality and ability to make people laugh. Despite a bleak prognosis and the loss of her ability to talk, Anne Marie did not lose her voice in the world or her desire to make a difference. She formed an executive coaching program after her symptoms began to manifest. Since being diagnosed, she founded Kiss my ALS, a blog that takes a frank look at what it’s like to live with the disease and still live a fulfilled life. She has also created ‘Speechless Speeches’, (Informative, humorous and touching PowerPoint presentations) which she gives to organizations for motivation and inspiration, with half of the proceeds going to ALS research.
Anne Marie ’s efforts to make a difference for people in the face of her own circumstances has attracted the attention of the media – she was featured in the Chicago Tribune, as well as on Chicago Television on WTTW and WGN.
Anne Marie hasn’t let her illness prevent her from having ambitious goals to make a difference with people and society at large. In addition to fundraising for ALS research, she is looking to make a difference with people’s health and fulfillment in companies – having it recognized that health and productivity go hand in hand. “I have created a Big Picture,” she writes. “I am out to transform the way people are managed in corporate America and how they manage themselves.”
While Anne Marie writes frankly about the challenges of ALS and what she has lost – not being able to walk in high heels as her legs weaken, or not being able to taste a steak or drink champagne after her swallowing muscles gave out – she remains focused on making a difference and living a healthy life.
“You can’t wallow in self-pity,” said Anne Marie . “When you have an expiration date on your forehead, you’re lost if you don’t have a purpose.”
In her ‘speechless speech’, which uses a power point presentation that makes requests of the audience to create powerful interaction without words, Anne Marie notes that despite all the physical effects of the disease, she has never been more prolific, creative and inspired than in the last few years. “I believe it took losing my power of speech to find my true voice,” she said.
The speechless speech is designed to inspire and empower people to live their own lives as if life is short, and to truly value themselves. In the speech, one notion she seeks to disabuse people of is that they lack courage or power. People who think they could never be as brave as Anne Marie in the face of a terminal illness are lying, she says – people continually underestimate their own power.
How much time Anne Marie has is uncertain, but after having lived with ALS symptoms for the past six years, she has already lived longer than most people diagnosed with the disease. And she’s happier than she’s ever been in her life.