Archive for the ‘Acknowledgements’ Category

May 13th Anyone’s Life Story; MDA’s ALS Awareness campaign

Thursday, May 13th, 2010 by annemarie

Here’s my interview for May’s ALS awareness campaign:

Anne Marie Schlekeway
13
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 .

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Lessons in Dying BIG:

Wednesday, April 14th, 2010 by annemarie

Last Saturday night I attended a memorial service for a friend of mine: Kenny Mateer. Kenny was a man of MANY talents: a Zen Body therapist, a Master at listening, At transformational thinking and coaching, full self expression and most of all at making a difference for those who wanted to make a difference. Kenny could look at you INCISIVELY and see what was in the way that needed to get out of the way such that you could make the difference you wanted to make. He broke down barriers for people, often all it took was a word or a phrase… he spoke to the heart of the matter. Kenny was someone who asked,”What do you need?” and never once said to me “Here’s what I need from you…” Even when my job was to provide things for him. To say he lead an extraordinary life is to minimize the gift he was to all of us who had the good fortune to cross his path.

Kenny would say whatever needed to be said inorder to reach you and make a difference with you in the moment. He didn’t care if you didn’t like it, that carried NO weight with him. We bonded in our love of profanity. He used the profane as a samuri weilds a sword. To cut through the noise and land a well placed blow for freedom~ more frequently your freedom than for his! He didnot overuse it, however was deft in his application, never resorting to shock value only, that would be a rookie mistake. His presence was at once magnetic and grounding with occasional bursts of lightnening. When I was caught up in the PRESS!!! a moment with him would calm me and get me into the flow.

I was not around in Kenny’s last year wrapped up as I was in my own dis-ease. And I do regret not consulting with him regarding my own diagnosis. Kenny had stage 4 pancreatic Cancer and far outlived his 4 month expiration date. As someone said last night Kenny set the standard for “How To Live with A Terminal Diagnosis”. He chose LIFE everyday in the FACE of his diagnosis. In a short video shown at the memorial – Kenny spoke about what it was to be “up against” something and how when you indulge in that conversation…ie: I’m fighting this/ I’m up against this/ I’m resisting this… you are relegated to bucking and bumping against the thing you are fighting all the time and that ends up comsuming your energy, versus being FOR WELLBEING or being as well as possible in the moment. This choosing of wellness converts thats energy and enhances wellbeing rather than exhausting oneself by fighting against the circumstance. What you resist persists with a vengance.

Kenny also inspired me with a project in that video. One of the things he said was when you find out you’re looking at the end of your time you’ve got to get busy! There is alot of acknowledgement and appreciation to be doing. I fell in love with this sentiment. What a great way to spend the minutes of your life… acknowledging the people who made a difference for you all along the way. What a LOVE FEST you could create! So I’m now on a mission to reach out and acknowledge the people who were there for me, who were important to me; my intention is to leave them thoroughly present to the difference they made and the impact their actions had on me. I’m putting it in my plan and I’m going through my rolodex… what a great practice to have in place to presence joy and love and appreciation.

Thank you Kenny! You’re the BEST!

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Hold the phone! NO MORE PAIN & A positive day at Northwestern!

Thursday, March 25th, 2010 by annemarie

Thank GOD! I was getting seriously bored with being such a BITCH. I am clear the upset over the way my care was mishandled on 3/7 and 3/8 is a cause worthy of correction but I was really tired of being a walking complaint! Jeez oh Peez. Part of that I’m clear had to do with being in pain from 6pm 3/7 til yesterday at exactly 1:20pm.

And the department who me called on tuesday? the one in my last Post? THEY DID A FANTASTIC JOB WITH ME. YEAH! Interventional Radiology Staff! WOO HOO. Praise be to all that’s holy in anyone’s religion. I actually felt taken care of~ a pleasant suprise. They were cordial, professional light hearted and funny while being compassionate and direct. AT LAST.

I am clear how often I took being pain free for granted in the past. I have been more grateful in the last 24 hours than at any other time in my natural life. No Kidding. I seriously thought life as I knew it was over, and life with a peg tube meant constant pain. (turns out the wound around the tube was infected) I could barely see how I would manage to get myself out of my apt on a regular basis if that’s how I was feeling…could not put my own shoes on , couldn’t sleep well, lift more than 12-16 oz at a time~ which begs for a whole nother habit all together, I thought seriously about worshipping Rum and Tequila, because childrens tylenol wasn’t cutting it! I had this heinous vision of myself as a disheveled hag drunk in a bathrobe with a peg tube sticking out. Charming.

I was so relieved I didn’t even fight Dr. Wolfe on the stomach binder suggestion. I think the poofy tummy I have is from all the drugs and surgery, she thinks it’s that my abdominal muscles have deteriorated to the point of distension. Lovely. I’ll do a raw food cleanse and we’ll see who’s right, I suspect we both are. It wouldn’t hurt me to drop all the comfort food I’ve been eating since my surgery…my normal no dairy/ no soy went right out the window. Ben and Jerry’s profits will be up this quarter. And my girlfriend’s chef- boy made me organic mac n cheese…You wouldn’t turn it down either.

Now that I feel like a human being again versus a wounded caged animal, all kinds of miracles are showing up!

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