Saturday
touched by technology
ericinLA
eric and Tom, founder Dream Foundation
This is a spot I did for the Dream Foundation in conjunction with KTLA and La Salsa Restaurants to raise awareness for the Dream Foundation and their mission to grant wishes to terminally ill adults.
It was done with Kurt the Cyberguy during a KTLA spot on 07 april, 2006 in Los Angeles, CA.
thank you, sincerely.
in the mind of one,
being me,
'actively dying'.
I write this for as I ponder, I am certain that the lack of knowledge and understanding of a thought process, often misunderstood and ignored, creates a misunderstanding and demands many I have learned, to apologize and THINK of what or how a situation should have been.
I am writing about situations that happen, hour by hour, day by day as a direct result of one's inability to conceptualize mortality. It leads to many I am sorrys, what I should have said is, what I really was thinking was, if only I would have thought, had a known you were thinking that I would have and silence and surface chat, but lots of silence...
And IGNORANCE because of the lack of rules,
and the territory so uncharted hails many,
too many for my liking,
having to admit that they cannot get 'it'.
Even as they speak empathy and compassion, they simply are not there and thus, as comfortable as they my appear because of a job title or a want to assist another, the only way of truly knowing is to, unfortunately, be directly affected and that direct affect can only be felt by one person, the indirect affections leaving room for much discussion, debate and alone time.
As I blog I watch as the colors of 'acompletepiece' change and I am thankful for the form it takes with the help of others thoughts, comments, actions and reading and
know,
that as difficult as it is to explain, in detail, or in abstract, many, very many, find an interest in knowing what it feels like, that place where they too must someday go, an interest not out of selfishness, but out of reason.
I applaud the critics, the believers, the patriots and the informed for allowing me simply to create. Never, when I presented my colors, never, did I believe I would see so many shades, so quickly and so vivid...and for this I write on,
as you read on and with humility, I thank you.
saturday 13.05
Friday
bleeding red
We spoke on the way home, mother and me, knowing not what to think of our next surprise guest. I greeted her only to learn that my hospice team, worried about my well being had called to have her investigate the possibility that I might endanger myself. And the only danger I was in at this point was physical and mental exhaustion from the morning and now, APS, with a series of questions asked in my direction.
And after answering all the questions with my mother and father listening intently and taking notes, I remained somber knowing that the team that continues to assure me that they are there to help me down my final journey days and they are there to walk hand in hand to comfort me and they are there to console my family and friends and they are there to carry out my final wishes and make my energy transfer calm and peaceful, and they are there with my best interest at heart CALLED and reported me, themselves.
They had a 'team' meeting and it was my 'team' minus me that decided and knew since early this morning that this visit was forthcoming and it was my 'team' that never broached the subject with me, but paraded behind my back with half truths and fiction instead of fact, filling me full of false hope and false promise as I, trying to remain stress free and focused, shook my head in disbelief as my confidence in there ability to care for me was shattered, my spirit jolted and my body lay with pure exhaustion from the darts so carefully tossed my way.
And the darts were pointed and the brass tips remain in my back, bleeding.
seeing orange
At this moment, like no other, I realized that hospice too was a business and I just a number, with a face, but a number that still provides them steady and consistent weekly income. I just shook my head and realized what the nurse said sounded good, but I have heard the same from strangers and when it comes right down to it, the empathy was forced as it has been on other occasions.
And if this was the end I would simply let it go, but the end it was not for somehow the nurse and the woman accompanying her thought that I said that if I had a gun I would 'blow my head off'. Now strangely, I do not own a gun, have only fired a gun at skeet once, with my father at the age of twelve and the recoil was so intense I fell to the ground and had a bruised hiene for a minimum of 7 days. Guns are not my friend and I have never had any interest in them for recreation of otherwise.
So this morning, my case manager and her supervisor, who I have spoken with over the telephone but not in person, arrived, uninvited at my parents home to make me sign a contract stating that I would harm myself. Upon saying that the only contract I sign is one with my G-D, I was told that they wanted to continue to help me through this difficult journey, but that in order to do so, I had to sign the contract, even after adimitly denying ever making an inference to a gun and especially to blowing my head of. I signed the contract with less than half a smile.
They proceeded to ask me for my medication and my casemanager, my regular nurse, counted my medicine in front of me, regressing my ego to the age of a mere two year and upon her supervisors approval, gave me back what was not considered 'medication of excess'. Now when I asked WHY the nurse, being so concerned over my life yesterday LEFT to go to meeting with a physician, there was no response. When they told me to increase my medicine for anxiety I wondered if they understood that their actions were increasing my anxiety. And I wondered if they just witnessed the contradiction that I did, throwing out medicine of excess on to tell me to take more of another...
My father listening in the background, excused himself but before making his exit, he decided to do it in grand fashion by saying; "Excuse me ladies but I have an appointment with my wife so I must leave you. And if I do not get ready she will come home and beat me". This prompted me to scream at my father as he laughed and the two ladies looked his direction with caution and wonder. He continued to say, "Well, if they don't believe me I can show them the deep scars and bruises." I shook my head and he belllowed harder and shut his bedroom door.
Now I can only imagine how this will be interpreted and watch as someone from social services will probably make a surprise visit to the house and question my mother over my father's demented humor. And although I did find it quite amusing, and fitting with the topic at hand, I do not think that hospice workers, nor my mother will feel the same. And in the event that someone does approach my mother when we least expect it, They will ask me what happened and in their hands will be a contract that I signed stated that I will not knowingly and willingly harm myself under the care of my hospice team.
The only thing left to do is to be thankful that I still have my shoe laces and my belt and I was not forced into an wagon, padded and asked to wear orange
friday 12.05
New in attitude as I am more likely to tell you how I think because my verbiage takes on a greater purpose, conviction in my voice. I have a lot to say and intend to say it as long as there is a willful listener and while I am discussing it, sometimes the listener is not listening and I know that, but my thoughts continue and so do my words.
Improved for I no longer, to the extent anyway, am going to allow myself to sit in judgment and abuse of those that believe if they talk a little louder and sound of greater knowledge that they are more for the apt to a sway of opinion. I give in because I desire to avoid conflict or just am not particularly interested in the story, period.
New for I was a forced change and had to experience resolution to a topic most will not speak about in conversation. It, like politics and religion has many opinions but it, the topic of mortality, frightens even the most schooled and well traveled to the point that other than on the nightly news, it is rarely brought into fruition, and never over fine wine and good food, to my knowledge.
Improved for my ability to live in the here and now as so much energy is spent simply digesting food, I do not have the strength and stamina to think further. My thought is most definitely out of the box, and my chatter still constant, the level at which I focus is only refined and this simply pleases me.
But underneath the 'new and improved' there is no change, only a steep learning curve. The bottle and the basic formula that forms a foundation remains the same, as it always did. And I still command attention, only with more force of conviction and need to find completion.
Thursday
Let me tell you a little about myself. My name is Amber and I am a grad student at Penn State. Last summer I was chosen by something larger than myself (God/the universe/what ever you want to call it) to donate my bone marrow to a 16-year-old girl with acute lymphoblastic leukemia. I was honored and at the same time saddened for the poor girl and her family. I felt compelled to find out as much as I could about what other patients in her position go through. I found a myriad of sites on the web chronicling peoples battles with cancer and other serious illnesses. In the end, they are all healed though many find their healing in that 'higher plane.' I found so many joyful stories, and just as many sad. I am especially drawn to the sad, not because I have some deranged attraction to them, but because I feel that these people should not be forgotten and too many people are not willing to expose themselves to pain in any form. Most families express great grief at the time of a loved one's passing, but also find an inner peace and beauty at the end. I think that too many people are afraid of the pain and never get to see the deeper - well, I don't really think that there is a word for it. I have experienced it before at the death of my grandmother. We all knew it was coming and my mother and I sat vigil at her bedside. She showed the most strength I have ever seen. She rallied the day before and held my hand and tried to tell me something. I wish more than anything that I could have understood her. When she left us, I was overcome with sadness but felt a peace at my core that I never felt before. I know that, although she may have left her body, she is not gone.
You are by far one of the bravest souls I have had the privilege to get to know, on some superficial level at least. I promise that I will not forget you and I only wish that I had the pleasure of meeting you in this life.
Sending you much love!
Amber
thursday 11.05
This is an e-mail I received from, Michael, a brother of sorts, younger, who I earleir took on my dream and invited, as I did many others, to experience the gift I leave:
why not be humble...the eternal question? why not recognize how much you've depended on other people for the better part of your life? why not let that shine? always have to be something better than the rest of the fools? always up looking down, trying to convince us that you are the poor, innocent victim?...
...the great eric has breathed life once again through a "blog"?????...damn you. selfish to the end. your right...that chapter is closed. I wish you love my old friend.
you can do a self portrait anyway you want. why not a true one?? don't try to con your friends. even at the end!!! give the part you can't!!! be free!!! we love that!!!
Wednesday
a curve ball
And this evening, without warning, the curve ball struck and before I knew it, I was down on the ground, emotionally, and am yet to pick myself back up.
My trip to San Francisco is being delayed. Not out of choice but rather matter of fact. I do not have a ride to the airport. There, I said it and postponement is inevitable, the bed and breakfast cancelled. I live in a city that is in one of the fastest growing counties (number four) to be exact, in the country and there is no cab service or door to door to the airport. My options were limited but I needed this trip, so I knew it would all be serendipity. I forgot about the curve ball and it was thrown and thrown hard. I am comforted to know that I was able to simply postpone but rest uneasy as the word postpone has an internal feel of permanence.
So this being said, I am on edge, disappointed, as I have jumped through circles of emotions this day with health issues, some of which are under temporary band aid and the rest I simply have ignored to keep some assemblage of order in my life.
I will continue to seek future travel and lower my expectations even further and shake my head to the notion that just when I thought my life could not get any more complicated, my mind any more cluttered and my emotions further displaced, it did and like everything else, I am forced to embrace it with out the proper knowledge and forethought.
I simply move on.
I wonder why my package from Santa Barbara is so delayed in its arrival. I wonder why the pictures that were taken of me on the set of KTLA were stolen from the digital camera they were stored in. I wonder what time the hospice nurse will arrive here tomorrow and I just simply wonder, dropping my head and wiping a tear from my eye. It is time to smoke, so quietly, I will stumble toward the backyard and watch the clouds roll, forcing the moon to change its expressions, much like I have.
I never was good at the game of baseball and never did hit a curve ball and this time was no different.
mere principle
wednesday 10.05
As the thought process continues, I brace for another battle, and prepare as best I can, with the tools I have available, for the oncoming, in my face obstacle of ‘evil’ embraced, but with an asterisk, as it approaches with a vengeance, so unwelcome and unwanted.
A bleed out is before me, in me and signals imminent danger and a disease progression that requires immediate attention from my mind, my body and my spirit. And as I write the three unified ‘my’s’, I sense a separation, a troubling one that I did not expect nor imagine.
Tuesday
tuesday 09.05
Unfortunately, I fell through the cracks and now await an outcome that COULD be rectified with a simple phone call and key stroke, but will not be rectified because to solve the problem in a timely fashion or to expedite the request to solve the problem will cost the government money, money that belongs to me. And when I was told that the system is set up for an initial 45 day input period and then another 120 days to show the retro-action of the funds currently being withheld as one state releases me and Texas picks up my coverage, I asked for compassion as my situation warrants an expedite, considering my diagnosis and current decline.
So when I asked for a compassionate human being to speak with, I was greeted with pleasantness. When I asked that the compassion be in the form of an expedited input, there was silence and disbelief for the government is currently accruing interest on the money that it will retroactively pay me. When I explained that 120 days could most definitely be longer than I have to live, I was told, 'sorry to hear about that. I will put you in prayer'. And part of that prayer, obviously, was not to alter the input. So patiently I wait for what rightfully is mine but upon my death, can no longer be a claim and more money will be deducted until 'the uncle' runs out of day or I run out of days, which ever draws sooner. Regardless, the money that I could have used for yesterdays is not here today and will not be for tomorrows.
Monday
capitalism:
Vous pouvez maintenant m'écrire à :
Heartiest GreetingFrom Larry Ken.
My Dear One,
Good day How are you today,I would like to apply through this medium for your co-operation and to secure an opportunity to invest and do joint relationship and business with you in your country.i got your contact from your site. and after going through your profile i deceide to contact you. I have a substantial capital I honourably Inherited.
I am Larry Ken,the only son of late Chief. and Mrs.Anthony Ken.My fa! ther was former Director of finance Sierra-Leone diamond,Gold and mining corporation, in Free Town , the economic capital of Sierra Leon, my father was poisoned to death by his business associates on one of their outings on a business trip .While my mother died when I was a baby and since then my father took me so special. Before his death on october 2005 in a private hospital in Free Town Sierra Leon. he secretly called me on his bed side and told me that he has the sum of Four Million, Five houndred United State Dollars. US($4.5.00.000.00) left in fixed /suspense account in one of the prime bank in Abidjan the economic capital of Cote d'Ivoire,that he used my name as his only son for the next of Kin in depositing of the fund. He also explained to me that it was because of this wealth that he was poisoned by his business ssociates.That incase he die I should move out of the country down to Cote d' Ivoire where he made the deposit to seek for a foreign partner ! in a country of my choice where i will transfer this money and use it for investment purpose after my education such as real estate management or hotel management.I am living in Cote D'Ivoire since 1 months now.
Dear I am honourably seeking your assistance in the following ways,To provide a bank account into which this money would be transferred to,To serve as a guardian of this fund since I am only 22years and To make arrangement for me to come over to your country to further my education and to secure a resident permit in your country while you will be take care of investing this money. Moreover, Dear, I am willing to offer you 15% of the total sum as compensation for your effort/ input after the successful transfer of this fund into your nominated account overseas Furthermore, you indicate your options towards assisting me as I believe that this transaction would be concluded within Seven (7) days you signify interest to assist me.Anticipating to hear from you soon.please reply me through this my private e-mail for securi! ty reason:
Email larrykena@yahoo.com
Thanks and Regards,Larry Ken.- larry ken
monday 08.05
Awakened again, by the morning and it is late for my standards and Ashley is tucked under my right side and refuses to move without my coaxing. She has returned to my resting spot as before, the demons lurking near, Ashley refusing to move without my command and conviction. I stir and as I do, something is not correct. Something feels odd, but nothing is wrong, its not supposed to be today, nothing is wrong, I keep trying to convince myself.
I go to the bathroom and prepare for the day. Well dressed and aching, body temperature low, my mind shifts from the chirp of the birds to finding and speaking directly too a demon, taking my breathing air. The demons await and I, with tears, put them off and write. A steady tear flows from my eyes, blurring my vision and churning my stomach.
It is monday and the demons have appeared, not talking, only appearance and there visit is unwelcomed and unwanted but embraced and forgiven just the same. Death awaiting me and the process, ever slowly, internally burns as signs from the after life take flight and pay homage to me and I interpret as only I know how, scared, alone and only forty.
Sunday
sunday 07.05
Relaxation is the objective and any chores that were left unfinished, remain, until later in the day or until next morning, which ever is more pleasurable. Telephones tend to ring more often, people from the distance giving a longer shout out and some shout for the first time in awhile.
Stories wined down from friday night and saturday and abruptly switch to what tomorrow brings. Sunday is a day that most, not all, have an issue living in the moment. They watch, listen to, hear about, attend, or ignore organized service and allow sunday and its memories to pass as if it is a right of passage, a symbol unlike saturday, more like a beginning of sorts of what lies ahead, the rest left behind for another time.