Here’s my interview for May’s ALS awareness campaign:
Anne Marie Schlekeway
Hometown, state: Chicago, Illinois
Dining, wine tasting (I’m a sommelier), art, blogging and public speaking through my “Speechless Speeches”
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 .