Here’s my interview for May’s ALS awareness campaign:
Anne Marie Schlekeway
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Hometown, state: Chicago, Illinois
Age: 43
Hobbies/Interests:
Dining, wine tasting (I’m a sommelier), art, blogging and public speaking through my “Speechless Speeches”
Favorite quote:
Don’t ask what the world needs. Ask what makes you come alive, and go do it. Because what the world needs are people who have come alive. ~Howard Thurman
Date of ALS diagnosis: March 2009
Tell us about your life before ALS:
I was a senior executive at an international training and development company who managed 300 people and led programs for 50 to 400 people at a time. I was a master at the spoken word, could silence a room without a microphone and belt out the blues with the best of the amateurs! I worked hard, played harder and enjoyed life to the fullest while making a difference.
Tell us about your life with ALS:
I have continued to make a difference on a smaller scale with my own executive coaching and training company and my blog, www.kissmyals.com. I have a lot more balance and rest and quiet in my life now, and I have time for philanthropy. Though my body has gotten weaker and speaking is very difficult, my experience of life and work has become far richer; everything is savored, not devoured.
Do you have a “life motto” or profound words to live by?
I had to lose my powers of speech to find my voice.
Has there been an “ah-ha!” moment or a specific turn of events that has helped you live with ALS?
I have them almost every single day. I look for the gift in the grief and the loss … it’s in there even if you have to excavate it.
Tell us how ALS has brought new significance to any aspect of your life:
Nothing gets taken for granted. I have sharpened my purpose. To transcend the impact that ALS has had on myself and my life is my task. I am out to push up the life expectancy and perhaps heal this condition.
How has MDA impacted your journey with ALS?
When I could no longer do my job and had to leave my company, my COBRA payment was twice my monthly expenses. I had three years of symptoms and no diagnosis. I took out my 401K to live on while I tried to recover from whatever illness I had. As things progressed, the MDA clinic was the only way I could get medical care. Five-and-a-half years after my symptoms began, I was diagnosed.
Is there anything else about you and/or ALS that you want to share with people who read your story?
ALS need not define you. It is a challenge but it’s still possible to be empowered and happy in the face of it.
External Link: Read today’s story .
Tags: ALS awareness Month, MDA