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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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I’m not Dead Yet! (God Bless Monty Python)

Sunday, April 25th, 2010 by annemarie

So why is it that every time I meet a doctor -even socially they are shocked! SHOCKED I TELL YOU! To find out I actually have a schedule to keep and I’m not available at all times for their appointments? How about we try treating people who are alive as LIVING.

I’m not Dead YET!

Jeez oh peez! People act like just because you have a terminal diagnosis you’re suddenly handicapped or catatonic or some such nonsense! WTH?
It’s ridiculous. The opposite of what I would expect. When Life got short, I got busy being focused: what am I doing here, what am I saying? what’s the lesson or message of my life? What difference can I make? Who do I need to be in communication with before I go? What’s the legacy I’m leaving?
I mean the truth is I feel fortunate to have had a yellow light on the road of life. At least I got a warning, slow down smell a rose and prepare your people…

Seriously. I mean this victimology mindset is complete Bull shit. That’s a technical term…Bullshit. The expectation that I would have any interest in being a victim or being at the effect of the circumstance I am facing is intolerable. Perhaps if we started treating people with a serious health challenge as if they had something to say to the rest of humanity that would make a difference, we could get somewhere! How about having a conversation for OPTIMAL WELLNESS IN THE FACE OF ANYTHING… instead of a support group indulging in the abuse of kleenex.

It’s almost as shocking to them as the fact that I am not on ANY MEDICATION. None nada nothin. I’m taking some supplements and a higher dose of Vit D…which I’ll share about when I have more research…but NO meds.

Look, I did have a dark time…the 4 weeks in 2009 between hearing the words NMD and “average 14 months to live after diagnosis” from 1/14/09 to the day in February when I found out my brother was diagnosed with testicular cancer. That was the straw that woke me up out of the confusion and Slapped me right back to my attitude of “KISS MY ASS THIS IS GOING MY WAY!” which has been my motto for years. I had been confused because the doctors were telling me I was dying but I didn’t feel like that at all! I had been doing fine – adjusting to my new limited speech which was 10x’s better than it is right now after that damn peg tube surgery! So I had about a month of “woe is me I’m so sad” before I got to my RAGE against the Machine: “Fuck you I won’t do what you tell Me!” ( Relax folks it’s a song title) Anger isn’t bad – it’s what you do with it. To me anger is energy and fuel, I don’t look for it but I don’t avoid it either.

People are always telling me – “You’re so brave!” or “I don’t have your courage!” …and again I call BULLSHIT. I’m doing what there is to do – LIVE. And so would you. Each and every one of you would do the same thing given the choice between quitting and dying or LIVING and appreciating the moments of your life. Human beings are by nature endlessly adaptable, infinitely creative and powerful. To pretend other wise is a LIE. You may not know yourself to be that way yet, but Believe you me… you’ll undoubtedly get an opportunity to find that out so you might as well practice now! Act as IF you are…and see how that alters your reality. You might have to fake it til you make it, but so what?

What the hell else are you going to do with your life? Lay down and DIE?

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Always tapped in…

Sunday, April 4th, 2010 by annemarie

This is an odd experience to write about, perhaps because I spent most of my life trying to get here. I have the unique experience of being a visionary. I am intimately connected to the creative source/a creative force/ the great collective mind or what ever you want to call it. In fact I am so connected and so often inspired that I must manage myself to take time out with music or TV (used sparingly, like alcohol) or the plethora of beach reading mysteries, psi-fi/fantasy warrior romance flavor of the moment authors. I have been in this space for about 3.5 years, so since I turned 40.

It’s at times overwhelming, due to the number of ideas I have that I know will not be produced in my lifetime, nor even commented on by me. I have legal pad after legal pad of ideas for everything from blog articles to books to products and services. I frequently give them away. My coach~ Yes I have a coach, AND any executive coach who does not utilize a coach for themselves should NEVER BE HIRED in my humble opinion~ any way, my coach says I am the most prolific person she has ever met. Much of the work we do revolves around clearing my head,my spirit and heart of emotional and mental/psychological barriers that would impede my “work”, and look to discern which projects are wanted and needed to come to fruition now.

I blame Julia Cameron in the most grateful way, as well as Mihaly Csikszentmihalyi; the authors of “The Artists Way” and “Flow: The psychology of Optimal Experience” respectively. I read Mihaly’s work in my early 20’s and began practicing the Artists Way when I was in my mid 20’s. This coupled with an intense period of study in transformational thinking, and a voracious reading habit all led me to create my own program for personal productivity: The Master Plan. I became an expert at 2 things: planning my work & working my plan, and keeping my mind clear, present and focused in the face of anything. My ability to do that coupled with a newly developed healthy interest in self-care has provided me with the reserves to be consistently creative. In short I am attuned, much like a radio signal is honed in on a specific channel; resulting in my ability to get in the FLOW and produce effortlessly. Not all of what I produce is great or effective, and much of it is extremely useful. I experience being blessed and that’s about all I can ask for really.

I wonder how much of this is related to ALS. How much of my unrelenting focus can be attributed to having a REAL deadline. Though I have no idea when I’ll die, I do have the experience of ~ do it now! before it’s all gone! DIE BIG as George Carlin would say… AND I find I am not depressed or saddened by this when I’m alone ~ it’s usually when I get present to the impact of my death on others that I am emotional. The thing is it doesn’t occur like a burden or a PRESS or any unnatural push to get things accomplished… it really occurs like living in the flow, being connected to the UNIVERSE and knowing my part.

This is the key, knowing my part and being clear in my purpose. As a friend of my client Catherine used to say; “There’s your work and there’s God’s work. You can’t do everything, just do your part well.” In my experience, once you know your part the rest comes easy. It took me 40 years to get clear on my part to play, interestingly enough the experience of life is a lot like playing… all the time.

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Things I miss…and dealing with ongoing grief.

Friday, March 26th, 2010 by annemarie

I was not at all looking at dealing with ongoing grief…until in the midst of my pain filled days last week I posted some whiny complaint on my facebook page: something of the order of being sick and tired of being sick and tired…(I really try not to post complaints because they are so annoying, however once in awhile it’s just inauthentic to post anything else!) My friend Ruth Mortenson said the folowing:
Here’s a perspective you might find interesting from James Van Praagh: When any kind of a terrible illness disrupts our lives, we enter a state of ongoing grief. As with any grief, we must go through it, and look for opportunities amidst the pain and sorrow. We have to keep our focus on the bigger picture, because all our experiences have purpose and meaning.

I HAD NO IDEA. DUH. Of course I would be grieving, especially with a condition like ALS where your capacities are eaten away bit by bit! I can actually see that I have been in a continual state of grief for years…the death of the cells that make my motor run, my hands grab, lift and pull, my legs balance~ in heels. I took my trip to LA and Vegas in December and it was so arduous to travel I said in the middle of it to my friend John- I think this may be my last independent trip! Of course I’m grieving, what a marvelous thing!

I AM GRIEVING AND I’VE BEEN ACTING LIKE I’M NOT! COMPLETELY OPERATING ON TOP OF IT.
This makes so much sense. Time to tell the truth. Time to distinguish the grief and move through it. Of course it is.

All in all I miss remarkably few things from my full capacity pre-symptomatic life, however from time to time I really miss some very simple things. I say pre-symptomatic because I exprienced symptoms for 5.5 years before I was diagnosed with ALS. There are times I miss not having a diagnosis, while limbo was frustrating I was also free of any conversation of what to expect…what was coming…so there was no future of decline and desintigration laid out before me as inevitable. (I believe there are answers and methods to maintain functionality and general wellbeing. Most of these methods are not recognized by the medical community as relevant or possible. That however is another conversation for another time.)

Things I miss:
The ability to breathe deeply and hold my breath

The ability to swim with out panic because of my breath
The ability to cut my own food
The ability to dance with out losing my breath in 15 seconds
I miss sleeping on my tummy
I miss being able to have conversation in a bar without having to write it on a note
I miss eating the occassional steak
I miss shopping for high heeled shoes and the clothes that look best with them!
Taking long walks along the lake
Taking a cab without having to write out tha address of where i’m going
I miss my humor! Being able to be funny with a well place retort or remark! I am limited to gestures.
I miss being able to speak with out focusing on my breath control
I miss being confident that I can get great service anywhere, because of how great I am with people!
I miss being known as intelligent, when you sound as if your deaf, people often treat you as if you are dumb.

I miss being able to flirt, to say hello clearly.
I miss being able to kiss
I miss working out!
I miss feeling like I could defend myself if something happened~ I am too vulnerable

I could go on … but it makes me cry. Perhaps that’s the point, step 1 in grieving~ have a cry why don’t you?
Then I suppose I’ll get pissed, which is a hell of alot better than resigned! And on goes the cycle of grief…my question is with all the tiny losses, how do you grieve appropriately – is there even such a thing as appropriate grief in an ongoing situation? Do you manage it and schedule time for it always or does it errupt like an emotional zit from time to time? Perhaps this is why the emotional lability symptom is associated with ALS~ to give us permission to cry at the drop of a fork… and have that be OK.

Either way now that I have distinguished the ongoing grief cycle and embraced it at least I can begin to deal with it. I wasn’t being responsible for it before and I can see how that limited me and my power in transcending ALS. And that my friends just won’t do!

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Getting responsible…I think I can, I think I can…

Thursday, March 25th, 2010 by annemarie

I’m like the little engine that could…I’ve been wrestling with the whole concept of being responsible for my illness. I can see how my former lifestyle contributed to the onset of ALS. I can see how I pushed myself beyond beyond for years on end and that press, that persistent state of emergency and strain could very well have triggered the gene that awoke the sleeping giant of ALS in my system.
I only look to be responsible such that I can have power around the reality that is my life now AND perhaps generate the mindset and where with all to heal myself from this debilitating condition. WHAT THE HELL ELSE DO I HAVE TO DO?

NOT A DAMN THING. not one.

No Blame No shame No guilt No credit AND being responsible for my condition…Why? Because if I can find myself at the source of it I can find myself at the source of healing it. I don’t know how to heal myself but that game beats the hell out of the game of managing my decline that the Dr’s/Traditional Medicine are playing. At the very least I can communicate what I feel intuitively (and I believe research will one day confirm) is at the source of activating the gene I carry for the development of ALS. I would be remiss as a human being if I didnot warn others even though they may not listen.

Let me be clear, I do not blame myself for developing ALS. I am not ashamed to have contracted ALS. I do not feel guilty about my condition nor do I believe I asked for it. I do however believe that my symptoms developed as a result of repeated behaviors on my part combined with disregarding my own self care over time which culminated in switching “on” the gene I did not know I carried that causes ALS. I am empowered by this view. I am not recommending this view to others, unless you too can be empowered by this view. If you find one shred of accuracy in this inquiry for yourself by all means embrace it. If it disempowers you and makes you feel like poop, then STOP READING IMMEDIATELY FOLLOWING THE NEXT SENTENCE. I only care that you are left empowered in your own life.

For those of you still with me, here’s the basic’s of my inquiry into my own condition. I say what was at the source of my condition is not being responsible for my wellness and continuing to work in a company that functioned like it was in a war zone for FAR TOO LONG. If any of the following sounds familiar to you~ STOP AND RECONSIDER what you do for a living and how you do it.

I worked 75-80 hours a week for years. I managed the training and development for 300 people at a time, by phone as internet was verboten..seriously, in 2000-2007 no less. I managed the results of and cleared the leaders for 25-70 events a week. Then I led a leadership program for 5 hours on a Friday night. But enough about that, really it was the ETHOS not the activities that were so damaging in my not so humble opinion. We were managed by threat more often than not~ it was a deliberate consciously created atmosphere of EMERGENCY. ROME IS BURNING! GRAB A BUCKET! Was there a gun to our heads – well no not literally, however research confirms that the pilots of drone aircraft safely living in Las Vegas have the same incidence of PTSD as their counter parts active in the middle east. So if thoughts ARE things then what is real? ALL I can tell you is that regardless of the results produced it was NEVER ENOUGH. My fight or flight adrenal network was kicking in several times a day if not more…I once worked for a year and a half thinking I was failing when I was given a raise as the only bonusable employee for 3 quarters running in the whole office. The press of it was continual and unrelenting. A 12 hour day was short, 14 more my average. It took me 6 fracking months to stop dreaming of that place~ 6 months to quiet my mind so I could hear my own voice not the “concerns of the enterprise”.

Why didn’t I leave? Before I had to as my body broke down? I loved it of course! I loved being up to something, something I felt was important and made a fundamental difference in the quality of peoples lives. It was a cause/job. I was special, tough, important. I was atoning for my wayward youth. I wanted to be used for making the world a better place. I was addicted to the acknowledgement. I was addicted to the adrenaline rush/the cycle of cortisol and caffiene and bad food – eating at my desk because in a 12 hour day there was NO TIME. Trust me I was paid more in acknowledgement than money. I see now that my emotional barriers were weak. I trusted them to take care of me and THEY WERE NOT INTERESTED IN THAT AT ALL. The management needed to use me, and they did. They were only interested in MORE.

I was enrolled in giving over to the cause, believing I had found my right lively hood as the buddhists say. I wanted my life to matter. Which is fine as long as you tend to the matter of your life.

The thing is this type of company/management is not unique. You might be working for one now, or you may be driving yourself in the same way. This is not sustainable.

This is the warning I spoke of earlier, you may heed it , you may not. Ignore it at your own peril. (I’ve always wanted to write that!)

As I say on my Facebook Group the Care and Feeding of a High Powered Professional:

“The age of the proudly sleep deprived diet coke swilling harried executive is OVER. The time for treating our human resources as precious and renewable has come.”

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Um Yeah, about this Peg tube? I’ve got buyers remorse…

Saturday, March 20th, 2010 by annemarie

First of all, the whole installation process was a huge disruption and a pain – literally.
Second of all, I’m here to tell you I HAD NO IDEA what life would look like after…
This contraption is located 2 inches south of my sternum, and 1 inch to the left…I have a 1/2 inch hole in my body from which and 8 inch tube extends, the 1st 4 -5 inches are flexible and the last 3 are plastic hardware with a red flip top on the end.

Here’s the deal, the feeding tube is interfereing with almost every enjoyable thing I’ve got left, just so ya know…

Wearing lingerie is a PAIN, by that I mean just putting a bra on is tremendously painful, and with gifts like mine going braless just isn’t civil! Getting dressed in general is painful as I can’t bend over to put on shoes, pants etc etc.

I am bloated and puffy in the abdomen, which totally doesn’t work for me or my wardrobe. I look like I’m pregnant with a litter.

I am never not in some sort of discomfort, read: pain from the thing.

It smells, BLECH!
It leaks, double BLECH! Both from the hole in my gut and the end with the fliptop. pretty.

The formula makes me nauseous, I can barely take 1/2 a can in 40 minutes with out turning GREEN and wanting to vomit.

It is difficult to sleep on my side as the tube moves and pokes me from the inside even when taped down…I sleep on my side because it’s easier to breathe that way, and so far I can sleep this way without the BIPAP, which makes me crazy and feel like I’m about to SUFFOCATE.

I almost always feel full and have to force myself to eat regularly which defeats the purpose really. I had lost 13 lbs I couldn’t afford to loose in the process of installation. From Feb 26th – March 10th. I also can’t eat as much in one sitting as I could before.

Due to the position of the tube so near my diaphram I have lost half of the already impaired ability to project and speak coherently, as I cannot get the breathe support I need to generate the force to enunciate my words so they can be understood, therefore I end up straining my throat and neck to make up the difference AND this process now requires twice as much energy as it did before, AND it’s painful.

It hurt to cry, it hurts to laugh.

And last but certainly not least~ it totally interferes with my sex life!

ARE YOU FRACKING KIDDING ME?
SO let me get this straight- it has messed with my ability to eat and my appetite, my breathing, my sleeping, my speaking ( in so far as I can), my ability to wear clothes, my smell- gross!, my laughter and my tears, I’m in constant pain and it’s a barrier to my sex life…WHY THE HELL DID I DO THIS AGAIN?

Oh right,because it’s supposed to add 10 years to my life. HUH. What kind of life would that be?
Wondering,
Anne Marie

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TV and News Fast for clarity

Friday, March 19th, 2010 by annemarie

So last week after getting home from the hospital, and dealing with being pissed off and trying to heal plus getting back in the swing of things re: my clients and meetings with my employees etc….IT ALL FELT A LIKE BIT TOO MUCH!

There I said it. whew. Part of me was just resigned – “really you had to screw up around me? really after all my good intentions and preperations and patience with rescheduling the procedure in the 1st place …really? you had to treat me like the asshole patient…the last thing I need right now is another project…and I’m in pain…I have a new speechless speech to write, blah blah blah… why did you have to be a turd on my watch??? Really? (I get it why people would just tolerate bad service and not communicate after out of sheer relief from being out of there!)

Then I did what I tell my clients to do in the Master Plan program and from time to time when they get uber busy and need all their faculties firing at 100%~ I went on a TV and News FAST. Since last thursday March 11th, I’ve not watched 1 thing: no news cast, no entertainment news no talkshows no late night no movies no media with the exception of what I catch from managing my facebook presence and the occasional email that includes articles. I did read Forbes~ which I’ll be blogging about later! AHHHHHHHHHHHHH what a relief and a pleasure it’s been: the absence of noise is a gift and a blessing.

Long ago I read a book by a native american professor from UC Berkley I believe, called 19 arguments for the Elimination of Television, and it shaped my use of TV. I moderate it just as one might moderate their sweettooth. I indulge during football season, and I limit it the rest of the year really. This allows me to be responsible for my mental space keeping it clear and focused: I am not unduly influenced by a proliferation of loud commercials for drugs I do not need, clothes I do not need, etc etc. Anything truly news worthy I will, hear about on Facebook or from a waitress in a restaurant. I am tired of news as entertainment or INFOtainment, which is really not News at all- it’s legitimized gossip. It’s harmful to people and useless, it’s derisive and distracting. BLECH. It’s like a diet of cheesepuffs alone~initially tasty but eventually insubstantial and destructive and constipating. Who needs mental constipation?

At any rate, I have been astoundingly prolific and freed up and happy as a result! Yes HAPPY, as I write and think and create and become more fully engaged in creating the life I want. Despite all the stuff: ALS, Recovering from surgery, CRAPPY service for the 1st 18hrs at the hospital, adjusting to the peg tube …which sucks by the way~ it smells, naturally like I suppose your tummy smells, it gets in the way of wearing a bra: and if you saw my lingerie collection you’d understand my upset here…and is a puss secreting extra belly button, that Goddamn well better extend my life by 10years for all this frackin MESS in my house! ERGH. Yep like I said I’m happy.

It’s amazing what a little clarity can provide even in the midst of several annoying circumstances. I may just leave my TV off for a month just to see how much I can get done! Today I feel especially well after giving myself permission to sleep as long as I wanted…12 hours it was…with only 1 bathroom break…delish! It’s my MANTRA~ Self-Care is the pathway to sustainable excellence.
I’m walking my talk, baby, just watch me kick some ass now. Time for a rawfood protien shake and coffee on the roof top. After all it’s 63 degrees and gorgeos here in Chicago right now!

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