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VIVA Interdependence! Creating a Share the Care Plan

Sunday, September 12th, 2010 by annemarie

Oy vey. One thing I SUCK at. Asking for help and assistance. I’m too little too late most of the time. I got a bad case of the “I think I cans” and the “I’m fine on my owns” and all that ain’t neccessarliy so…

The truth is it’s time. I need help with some things: opening bottles and containers everything from hot chocolate packets to bottles of juice. I now need help filing and cleaning my nails. Dressing in many of my clothes has become a joint project, forget making the bed and opening the mail! I’m all about delegating that. So I’m thinking of having someone come in for 30 mins to an hour a day to handle all that jazz and call in a carryout order for fresh pressed veggie juice as I’m not even pretending to use my juicer anymore. Maybe we can throw some physical therapy in there while we are at it? We’ll see.

At my Doctor’s appointment It became clear my thumbs are aching from tendonitis because I’m trying to do more than the muscle can handle~ I’ve already begun to switch over to thinner lighter bath towels I guess I need to buy more. My house keeper comes 1/wk and my assistant graciously helps pick up things and do light cleaning before we meet, but I think it’s time to give up on “I think I can” and embrace being interdependent. Maybe even consider enjoying it…maybe.

I am loathe to give up my privacy and the solitude of my home. The idea of having an appointment everyday to handle mudane chores exhausts me…perhaps we’ll begin with 3 times a week. I think I need to ease into this as helpful as it maybe…I’m having a hard time letting go of my independence…apparently I’m a bit attached. I think I have it confused with or collapsed with invalid…in-valid…as in not capable or valid as a human being. Since this makes me cry I’m sure that’s the heart of it. I can see I’ve been dreading this day, making it mean something it doesnot mean. Afterall it’s not personal, it’s just what’s wanted and needed to maintain a particular standard of living. I have given my parents the homework of reading Share the Care : How to organize a Group to care for someone that is Seriously Ill, by Cappy Capossela and Shiela Warnock. I however have avoided getting to far into it.

I know people want to contribute and I need to let them. It will enrich them and me…just gimme a minute.

Viva Interdependence!

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Heidegger and the Housekeeper…

Sunday, July 18th, 2010 by annemarie

My housekeeper Phillip is a renaissance man. Once a week he comes over to bring order to my disarray in ways that I no longer can. I don’t know what I would do with out him. I have an abscentminded professor’s apartment full of books and notes and papers…many who’s job is to smother the dining room table until I get them recorded into some other medium such as a blog post or a classroom etc. Given the weakness in my hands I can barely load the dishwasher myself and putting things away is often more than I can handle. All of which he deals with with out complaint. Often straightening the same pile repeatedly week after week for me to destroy in his abscence.

Yesterday, however he forgot to do the 1 thing I had requested he do: dust the window sills and bookcases, which are just full of enough “stuff” to make the task annoying for anyone. I sent him a text to ask him to remember it for next time and as he wasn’t yet home so he came back to do it right then. This is something I love about Phillip is if he forgets something he self corrects right away! I try to give him space when he cleans my place so he can blare dance music or just as often listen to lectures on philosophy from Stanford or other sources. One of his favorite works is Being and Time by Martin Heidegger, and the discussions of ontology that flow from that text. Given Phillip is an African American, gay man with a perfectly toned dancer’s body at 50+ years, I’m going to guess he either doesn’t know of Heidegger’s Nazi affinity or he chooses to look beyond that for the juice in the material.

At any rate Phillip is one of the most honest people I have ever met, and upon returning to my home he confessed he looked at the window sills and thought “Whew, this is too much!” and chose to ignore them~ which I can totally get by the way! However he thanked me for the opportunity to return and restore his integrity regarding his promise to me. Today was not a DJ dance mix cleaning day it was an intentional meditative philosophy filled cleaning day, and as such he had been wondering why it was he had so many insights when he worked in my space. What he saw for himself is that in his view I am someone who is connected to the source of things, that I am in the world but not of it. As Heidegger put it I am not “it”, I am “grounded transparently in the power that established IT”. He was moved to tears by what he saw. I needed a nap.

For the second time in 2 weeks I was uncomfortable with what people were saying about being with me. During my interview with Channel 11 WTTW CHicago Tonight’s Jay Schefsky, my client Catherine Gallogaly had said I have become a spiritual guide for her. I had the same experience when she said that~ I felt disconnected. I couldn’t be with what she was saying about me. While it’s accurate that I have created a living space and practices that facilitate my creativity and noetic scientist leanings, I am clear I am no master of the spiritual realm. I am certain that my writings come THROUGH me not FROM me, and I do experience being a channel, much like a radio tuned to a particular frequency much of the time. However that makes me more like a playwrite or a song writer in my mind than any sort of spiritual expert. I even use the TV to break the connection from time to time as the flow of information sometimes becomes over whelming when I look at the “expiration date/ time limits” one could expect in my condition and realistically look to plan what I am going to manifest or work on next. The whole business of being a spiritual guide for people is WAY too confronting.

My spiritual practices are a hogpog of Native American sage and sweetgrass burning or “smudging” to clear the space, Buddhist meditations, Christian science readings from Ernest Holmes and Wallace D Wattles and scanning the Zohar. I make up my own meditations all the time and while I pray daily and focus on keeping my faith clean and unimpeded by doubt, I am not a practicing Anything. My aim would be to “Make Every Step A Prayer” as the Lakota say.
People are always asking me…are you a christian? I say I’m more of a Kabbalist Gnostic just for fun, though I re baptised myself in Hell Roaring Stream in Montana. I thought it was appropos. I left the catholic church in 3rd grade and though I love the Mass I am disgusted by the leadership in Rome and their horrid attitude towards women and lack of integrity regarding pedophile priests~ They have lost my trust. To give you a sense of my smart ass capacity; my confirmation name was Augustine, much to the dismay of the Bishop. I figured if a whoremonger pig could become a saint then maybe I had a chance. I was an athiest as an intellectual position in my teens and early 20’s only to be turned around by a series of premontitions and my exposure to the Lakota culture during my time at University in South Dakota. I have read tarot cards for 20+ years and studied everything from Confuscious to the Tao to A Course in Miracles and other channeled texts like the Seth Material. I believe in a higher power and that God is in each and everyone of us as he/she is present in every grain of sand, animal, tree and rock. I think God gets to be self expressed through US. As the song says “It’s the God in Me”.

I say each persons path to God is their own. No one gets to be right here, they only get to be a sourceful voice. Those who are interested and ready will hear. I guess when I put it that way it emcompasses what I aim to be: a sourceful voice grounded tranparently in the power that established it. If that makes me a spiritual guide for some then I guess God is as big of a smart ass as I am. I can live with that.

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FAQ’s

Monday, July 12th, 2010 by annemarie

Frequently Asked Questions:

Why did you create the Master Plan and what is unique about it?

Ok here’s the thing about the Master Plan, I created it because I knew there was a way for people to be uber productive and purposful with out sacrificing their health to do it. I am out to tranform the way people are managed and how they manage themselves. You don’t need to be “under the gun” or operating in a state of emergency to get things done, in fact that ethos is counter productive over time. I believe the atmosphere of forced emergency wears people down and makes them sick. The Master Plan trains people to take care of themselves and to set up their enviroment in such a way that they are naturally more productive, creative and fulfilled. The main tenet of the Master Plan is that self care is an access to and required for sustainable high productivity. The Master Plan is about operating in the FLOW of work not in a PRESS.

What are your thoughts on Death and Dying?

As I say in some of my Speechless Speeches, here’s the gift of ALS ~ I have a yellow light on my road on life. Some people die in an instant with a Crash, Boom or Pow. There’s no warning its a shock and here’s no chance to communicate. Some people hang on and see a century or more…The thing about a diagnosis with no cure is you immediately stop doing what you don’t want to be doing and IF you are lucky you have a purpose to fulfill on with the remainder of your time ( so you don’t waste the time you have worrying about dying). I recommend people pretend like they have a yellow light for a moment and look at what they would change ie: what would you do now if you knew you only had 5 yrs, that you are not doing now?

What’s the biggest challenge of living with ALS?

The biggest challenge with ALS is the continual adjustments you have to make to new physical weaknesses and the corresponding grief you feel with each loss, you get caught up in the cycle of grief sometimes and this is why maintaining an empowered mindset is the #1 challenge of ALS and other NMD’s. To transend this grief which could prematurely bury you…that is the triumph of people like me, to have kept your spirits up over time and even to dare look to heal onself in the absence of any evidence that it can be done. This is what it looks like to be undaunted, unbreakable. This is possible. I am out to optimize my health in the face of ALS, I focus on that. I believe this attitude will either heal me or at least keep me alive for a cure.

Are you ever annoyed with people who seem to be completely distraught about trivial concerns?

Yes.

What would you say to them?

The evolved answer is to know that everyone is given what they can handle and in that case and from that space I could comfort and support them.
The knee jerk reaction (and perhaps more appropriate) is to say, “Get a bigger problem!”

How did you come up with the Speechless Speech?

Last February, I held a fundraiser for ALS research because I felt the need to DO SOMETHING! I had over 150 guests and we raised $32,000. I needed a way to address my guests at the event and a friend of mine, Anna Belyeav suggested using a power point and assisted me in creating the presentation. The effect of a silent “speech” was profound and moving. We made it light hearted and funny and it still brought people to tears. That was when we knew we had created something special. A few months later I was asked to “speak” at an event by the Story From a New Friend organization. That “Speechless Speech” is available to be viewed on this sight. Feedback from the event was overwhelming and I knew we had something that was unique and could make a difference. I knew I wouldn’t be doing another fundraising event on my own as it took way too much energy from me, but the I saw the possibility of reaching people through the “Speechless Speech” and using it as a fundraising tool for ALS research.

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Is the water you swim in dirty?

Monday, June 14th, 2010 by annemarie

In a conversation about my last post, “You know your work environment is toxic when…” I found myself having to explain the difficulty of distinguishing a harmful environment when you’re in one. No one wants to think they made a mistake, especially if they like aspects of their work or their job. And no one likes dealing with the uncertainty of the job market place especially now, so we can learn to tolerate a lot to feed our families. My point being it’s hard to tell the water’s dirty if thats what you are swimming in.

Unfortunately this concept can be extrapolated to our world at large. I have been reading The Autoimmune Epidemic, by Donna Jackson Nakazawa. In it she posits we all have different autogen thresholds, with a full 25% of the population being more susceptible to autoimmune conditions. She likens this susceptability to a barrel effect…you dont know which drop of rainwater will cause the barrel to over flow but you know it will when it’s too full. The same goes for our bodies when we deal with toxins be they environmental, emotional, in our food etc… the more we allow into our genetic barrel…the closer we are to triggering a response of Dis- ease.

We humans have little control over the air, but we have a bit more when it comes to the informational pollution we allow in our space as well as the type of foods we eat and water we drink. Filtering and going organic helps physically and mentally I believe, as at least we can DO something especially in the face of overwhelming pollution such as we are seeing in the Gulf of mexico right now. But pollution comes in all types of forms in our informational age: Thought leaders in business agree that the most important thing you can do for your success is to take control of the suggestive elements in your environment. Brian Tracy says to “be sure that what you are listening to and seeing is consistent with the goals you want to achieve.” In my Master Plan seminar I have a TV and News Fast for 2 weeks to allow people to detox from the automatic nature of the drama in our news and other Television programming. They find this quiets the mind and allows them to get responsible for the influences they allow into their mental and emotional space. I highly recommend hulu and casttv.com as a way to enjoy programming with out the innundation of commercials.

Once you know an atmosphere is “off” you can then be responsible for how it impacts you, your health and your mood. Many of my clients have told me they didnt realize how much their mood was being impacted by the news and other negative conversations that are woven into the story lines of different shows AND played out in the commercials! The same can be said of the work place. Often you dont know how damaging or harmful a cultural conversation is to your wellness or mindset until you are away from it. A friend of mine recently left an executive position where she had a boss who managed by threat and a week later she confessed, “I didn’t know how my confidence had been impacted by the atmosphere there until I was out of it!”. She had begun to doubt her own capabilities in light of his consistent criticism.

Management by threat is insidious, and all too commonly practiced. Threatening people even slightly literally makes them stupid! According to David Rock: “Your Brain at Work” when our lymbic system percieves a threat ( it need not be real, and it can be social ) our pre-frontal cortex reacts by shutting down. This instantly shrinks our decision making capacity, short term memory and we go down deep in mood, often staying there longer with a negative social threat than we would a real physical threat. The threat of belonging is closely tied in our lymbic system to survival. This cycle puts our adrenal system in a over active loop of cortisol production ~ enhanced by caffienne/ nicotine~ and burns our circuits out over time…cortisol also stimulates the retention of belly fat for survival. This is why people who work in fight or flight environments often gain weight, they begin to eat as a reaction to the threat literally protecting them selves with a layer of fat.

It is my hope that this conversation will put people in a committed conversation to be mindful, and begin to look newly at the environmental factors that may be impacting their well being. Here’s to stepping out of the dirty water…

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Ode to my calf muscles

Monday, June 7th, 2010 by annemarie

Dear Calves~ thank you for your service! You’ve always been mighty!
The kind of calves that got me noticed in the gym, and many many requests for ” How did you get those calves?” The answer of course was genetics plus point shoes at 12 years old…I could say the same for my glutes and hamstrings which were also remakable but not quite the stars like my calves were.

I say were, because this week I noticed how different the calves are now – this is a new development just in the last 4 months, my calves are suddenly angular, linear where they were curvaceous. My legs are noticibly weaker, I have begun to fall from time to time. The balance muscles are going~ the anterior and interior ones that keep you upright over uneven ground are leaving me. Just 2 months ago I finally stopped wearing real heels…as in 3-4 inch heels. Much to my doctors distress I had continued to wear them for 3 years after they advised me not to… but it was actually easier to walk in them due to the 1st signs of weakness in my left calf being along the shin bone and responsible for the flexation of my foot, so as my foot drags in flats I was more susceptible to falling in flats. I still look for a shoe with a 1-2 inch rise, because it helps me walk. Thank god the elevated sneakers are in vogue again! Spoken like a true shoe collector I’m clear… I have given away over 100 pair of shoes through out the past year as they became unwearable.

The curve is gone the cut up the middle of the back of my calf is gone, I miss the shapely-ness of it- the-no-matter-how-fat-I-got-I-still-had-great-legs-count-on-ability of it, the stregnth of it~ these are the legs that could squat 425 lbs in my mid 20’s ( which is probably why I have walked under my own power for so long), the extraordinary look of the well formed muscle tapering into the slim ankle…I would have been a hit in the late 1800’s when a well turned ankle was the bombdiggety of attractiveness! It probably says something about our culture that what freaks me out with the most emotional impact is not the reduction in my breathing ( though I wont go swimming again!) it’s the muscle twitching in my face, the screwed up facial expression I get whenever I drink wine, the drooling that becomes increasingly difficult to control, and loss of the muscle groups I could always count on for attractiveness. Forget looking good I’d just like to pass for normal! Which is hard to do when your ass falls off! Yes my formerly righteous bubble butt is gone as well…let’s just say that my nick name in highschool was “buns” and Boom-Boom.

Whats really amazing is how attached we are as human beings to our identity, or to how we have come to know ourselves…I can be as transformed as I want or as philisophicallly grounded as I want AND it does not prevent the IMPACT of the LOSS of who I had known myself to be! How I knew myself to look, and other constructs that became how I got along in the world. I have known that the physical structures in our environment set us up for how we move and manage ourselves but I was always looking at my SURROUNDINGS in regard to that and rarely if ever looking at my interior physical structures…for what they provided in the realm of my mindset or what I felt was possible to achieve, and how I percieved myself in the world. I can see new levels at which I took my body for granted.

Ignorance is bliss has a new meaning…I continually get irritated with strangers who are having superfluous conversations or are gossiping. Really? I think THIS is what people spend the minutes of their life on when they dont have an issue or a challenge or a focus? WTF? For the same reason I don’t watch the news often as I find much of it to be LEGITIMIZED GOSSIP and speculation and rarely any real news. Certainly not positive news, and I guard my optimism with a fierce vigilance. I don’t need the poison thrust on me from some deliberatedly dramatic headline or some ridiculous fluff involving some celebrity gone to hell in a hand basket. I’m not saying having a cause or a purpose is any better, it’s just what makes it all worth while and interesting. After all you know what they say about an unexamined life…definitly NOT worth living.

So I celebrate my calves today, for all that they were for what they still are and for all they will continue to provide! Take a moment and celebrate your own won’t you? Have a love fest with your whole body in fact! Appreciate what you’ve got when you’ve got it. Take care of it and hold it dear, value it and give it rest. You never know when you’ll need those reserves of energy and stregnth.

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A trip to the salon and one huge dose of comic relief from ALS…

Wednesday, May 26th, 2010 by annemarie

Ok. I don’t usually do this blogging about an event or what happened but it’s just to good to keep inside:

Yesterday, I went to the salon. My hairdresser is a fantastic friend and would have come to me but I wanted to get out of the house as I rarely have the energy to do so. In fact she’s the kind of hairdresser who’s all about you. The salon time is your time to get what you need whether that is silence or chatting etc. Tuesday is a quiet day in her salon and there was only 1 other client there seeing another stylist. I had been working on a project since 6 am so I was quite tired. In fact I was so relieved just to be there as soon as she asked me how I was I started to cry! I have been concerned for some time about the increasing levels of fatigue I experience since returning from DC. It seems no matter how much I sleep I cannot get rested!

So I had a quick cry and we talked about my hair~ going more blonde for the summer, which makes me happy! and got down to business. Once we settled in I couldn’t help but notice the conversation happening at the other station…there’s this woman with reddish brown short curly thick hair sitting in her purple suede birkenstocks jeans and wrapped in salon capes…the way she was talking about taking care of her loved one I thought she was a caretaker for an elderly woman, perhaps her mother or an aunt. It was apparent she was devoted to whom ever she was speaking about and that person could not communicate with her. Given I can’t talk well I was empathetic and it’s also why we were’nt drowning her conversation out with our own.

About 10 minutes into my hair cut, 3 things become apparent:
1) the woman has been prattling on about her CAT for 20 minutes
2) She is seeing a pet psychic with her cat regularly
3) The “animal communicator” told her her cat wants her to SHUT UP and quit talking so much!

After I almost fell out of my chair laughing, I immediately got grateful the minutes of my life are not consumed with visits to a pet psychic, and obsessing about whether my cat knows I love her. BLECH. I love animals too! I’m not a hater, I’m just saying if my life were spent dwelling on a story or in a swirl of does my cat connect with me/appreciate me/know I care/see how much I do for her/will be with me when I cross over spiritually and other such bizarre banality I would kill my self right then and there. God save me from that obsession.

As I wrote in my notebook to my hairdresser~ I may have ALS but at least I’m not wasting the minutes of my life on visits to the pet psychic to justify my obsession with my pet! Kill me Now! She was thinking the same thing. My favorite thing is how the Pet psychic tells the woman~ your cat wants you to shut up, you talk to much and she can’t think. Seriously. At least the cat and I are aligned.

I think it’s become a new line in the sand: I may be dealing with X (fill in the blank), but at least I’m not going to a pet psychic for my self esteem.

I can’t help thinking this woman’s mind needs bigger problems to solve! It’s so underutilized and creative spewing crap in a circle, I wonder what would come out if she were engaged and focused? I thanked all the comedic saints for having her there in the salon for me to hear, because it completely lifted me out of my self and into a new perspective of appreciation for my mind, my life and my circumstance.

Bless you heart cat-psychic-visiting-lady, bless your heart!

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Simple fundraisers you can do in any community

Wednesday, April 21st, 2010 by annemarie

It’s interesting how some subjects come up repeatedly in a short period of time. Recently people have been asking for fundraising ideas or commenting about how they want to have a cool fundraiser where they are. So here’s a few ideas you can do with a few friends or a small gathering or blow it out with a big crowd if you’ve got the resources and the space!

Home Parties:
Have an Art Swap. Invite your friends to bring art that they are not using or are tired of and do a swap. Have each person donate $20 or paying what the item is worth into a pot which gets donated to the cause of your choice.

Have a paperback book exchange, or a real book exchange. Donating what you would have paid for the new books to your cause.

A clothing and or jewelry exchange: donate half the retail value…that way everyone gets a deal!

Find out which friends have your shoe size and do the same deal!

Or if you don’t want to deal with “stuff” Just have your friends over for a potluck or a wine tasting ( everyone brings a bottle ) and then donate what you would have spent on a dinner out or a night out at the club/pub/joint. Include the tip.

With all the above I would have a conversation regarding the charity you have chosen and or the facts and FAQ’s re the disease or illness you are out to impact. Try to find out facts about the charity such as what’s the % of each dollar that goes to research or patient services etc. Be informed. Have a conversation to inform your guests. Mail out your invitations: 1st of all it’s nice to get an invite in the mail and 2ndly people who can’t attend may chose to donate anyway. Invite them to do so.

My hairdresser Rochelle has been doing “hair days” out of her salon for various causes important to her clients. She’ll get coloured hair extentions donated and put them in for girls and moms during the fundraiser for 10-20 bucks a pop. She has also organized groups of hairdressers to donate 3-5 hours and done weekends of hair cuts, shampoo and blow dries etc…with all the proceeds going to a cause.

Have a garage sale. Have a neighborhood garage sale and donate the proceeds.

There is a reason Big events are annual. They take alot of energy and effort to gather a crowd big enough to raise enough dollars to cover the costs and be worth it for the charity. If it weren’t for an anonymous donor of 20k at my event I would have considered it a failure given the energy and effort that event took from me. This is one of the reasons I am an advocate for A Midwinter Nights Dream, it’s a far better use of me as a resource to facilitate 20 or more of these chapters around the country, that it is to have me throw 20 parties.

So whether you are raising money for a walk, run, ironman, or a research institute: Get creative ~ enroll a team and start a conversation for making a difference. Ten people having a house party that raises 500 bucks is a sizeable donation, have a contest who can raise the most gets a prize!

Happy Fundraising!

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Upates and Announcements

Saturday, April 17th, 2010 by annemarie

Hi All~
This is a bit of a different post as there are several things to communicate and I’ve been fairly silent since easter weekend.

1) Whenever I get off my schedule- which looks like 2.5 days of quiet and being “off” per week I get all exhausted and screwy. It throws me for a loop and I drop out writings and my focus goes towards getting through the days. Just yesterday I had to have my assistant drive me home and cut our meeting short as I began crying because of my frustration in communicating what I wanted to her; ALL ME not HER. Damn Emotional Lability! It just goes to show you that when you compromise on your promises to yourself NOTHING good comes of it.

2) I am looking for an intern who will take on managing the events page of this site such that it can be a comprehensive listing of ALS related events from around the country. This would include researching and posting the events on the calendar and working directly with me to manage that content and communication with those causing the events.

3) I’ve had several requests for sponsorship of this site recently and we are working on a program – all proceeds from this will go towards underwriting our fundraisers and directly to ALS research in a 50/50 split. I’d like to focus on industries that would directly be of service to my audience: those that support PALS and their families as well as have a section for folks who want to support what we’re up to with their businesses. We’ll start with packages as low as 100/m with a 6 month minimum. And we’ll have a non compete with in your industry: ie, if you’re a printer you’ll be the ONLY printer. Please contact me through this site if you are interested.

4) I will do a full post about this however I am an ambassador for A midwinter Night’s Dream and that means I have a promise to them to facilitate 20 new chapters around the country by next September. I am looking for introductions to high school teachers in all areas of the US. If they have been impacted by ALS that works and if they just want a cool program to inspire and train their students in business and event planning that works too! AMND will support each chapter to be successful and given their track record of raising 1.5 million in 6 years from 1 New York High School, I believe they have a handle on this.
I have decided I can reach more people by facilitating them than I can on my own, though I will keep having Kiss My ALS events and initiatives. Right now expanding AMND is my initiative.

5) RE: the Debacle surrounding my surgery at Northwestern hospital I have not yet completed my letter to the president and will do so in the coming week. I find that I am still upset about it and it’s interfering with my ability to be effective in that endeavor. 1 month after surgery I am still down 14 lbs, and haven’t been able to gain any back. Given the difficulty I now have in speaking~ it’s like the procedure took my breath away and diminished my already impaired speech to 1/2 of what it was over night, I am not a fan of the early placement of the peg tube. I wasn’t informed of the consequences of the procedure – no one told me it would do this to my ability to communicate and it’s been a devastating loss. Had I known this was a possible result I would have waited at least 6 months if not a year and planned my activity accordingly. It’s as if they think you don’t have a life to live when you have ALS. RIDICULOUS.

6) We are having a meeting on Sunday 4/18 to plan several new events for Kiss My ALS. On the Agenda we have:
-ARtists for ALS event in late summer
-Hair style days and RED hair extentions coordinating with the artists event
-An expanded Pub Drive for 1/15-2/13/2011 with new beer and liquor sponsorships and prizes
-A spin a thon
If you are interested in participating in any way please let me know!

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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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What does it mean to be a presence? What if you can’t hang?

Wednesday, March 31st, 2010 by annemarie

I’ve never been a homebody, not until last fall. I was always an out and about type person. Perhaps it’s due to having worked in the service industry most of my life, but I think more of a function of my love of being social. I loved sitting in the bar of a high end restaurant having dinner alone or with friends and meeting the people around me. It is one of my favorite things to do. I was able to be with all my different groups of friends by planning outings and visits and runnning hither and yon, and had a splendid time just BEING with them. I would often plan 2-3 meetings in one evening so I could fit everyone in. Even when I couldn’t talk all that much I would hang out with them enjoying their company. Well, now I’m afraid I have committed the cardinal sin of my youth- I CAN’T HANG!

Eh. Oh well. I was out now I’m in, as Marianne Williamson says in one of her many books. Time to transition into a new world: I am IN and I am in LOVE with facebook. Bless that little red haired dollface that invented it! With out it I was ALONE (especially being unable to talk on the phone), now I am reconnected, and able to reach my peeps with a single message! How fantastic is that? This blog and tools like facebook allow me to be present in new ways in the world. True it is an online virtual presence, one step away from 2nd life I suppose, however it is a presence that makes my personal appearances all the more powerful and focused. It allows me to craft my message and be a public person without all the chit chat and gossipy blather that passes for witty repartee these days. It brings power to my speaking and typing. It is I dare say an new ecology to swim in and to influence. ( thank you John Patterson)

Case in point: I was listening to an interview with Tony Judt from an NPR broadcast that my friend Megan Barr sent me via Facebook.
That interview inspired this blog post. Mr. Judt was remarking on how his presence has faded from the day to day lives of his children and family…as he is confined to a wheelchair and attached to medical equipment in his journey with ALS. He likened ALS to being a prisoner in an ever shrinking room. A room that you know someday is going to crush you ~you just don’t know when. His assessment is as accurate as it is terrifying. I am not as far along in my journey as Mr. Judt ~ in my experience I am not as confined just yet, though my speech is so limited I’ve begun to deal with the reality of it being non-existent. His words beg a question: an inquiry into what is it to be present in people’s lives now? What does that mean, what does that look like?

I am in the midst of that exact transition. I am frequently confronted with not having the energy to leave my home, even for scheduled appointments. Some of this may be the lingering effects of surgery however it’s more and more common all the time. I’d just rather not. The truth is when I’m at home alone~ I forget I’m sick. I have very little experience of being ill or being weak, in fact most of the time I feel pretty good and am very happy. I’m engaged in several projects that stimulate my mind and I’ve got gobs and gobs to type about between writing the workbook for the Master Plan, creating the classrooms for the Master Class I lead on Saturday mornings, and several other projects involving being an empowered patient and an empowered caregiver. I think my friends and family will understand that if I EXPERIENCE BEING WELL MORE OFTEN AT HOME, then I should stay home more often!

So if one wants to be present and with people and yet can’t summon the enegry to walk out the door – how can you maintain a presence in your friends and families lives? Given that it’s all about communication, I’m relying more heavily on technology. Facebook chats while being on the phone seem to work well thus far~ as we can hear each other and they have the experience of talking to me ~ and I can acknowledge what’s being said w a mono syllabic response, they get to “be” with me in some way. I’ve actually held coaching sessions in this way when distance has prohibited a face to face. It will soon be time for type to speech software and I think for a touchscreen type pad. My typing is getting worse and worse, lots of double hits on letters and missed letters and frequently transposed order of letters etc etc. I am so grateful to live at a time where the impact of ALS is limited by the advent of new technologies and tools.

I don’t have an answer for the title question yet, I’m still sitting in the inquiry. What I can see is the advantages we now have though one could say they’ve displaced old fashioned visits from friends and family, but I don’t really see it that way. Visits are great and the frosting on the cake of being connected.

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