the good fight

I know you will fight the good fight for as long as you can...and Eric, when you feel you cannot fight any longer you have my permission (not that you need it) to go...my love will go with you high into the heavens...and even though I won't have you to e-mail physically, when I say my prayers, I will know it is as good as an email to you...and know you'll send me funny signs that you're still around

you won't be far...

I know you will go somewhere to rest first and then you'll skip off to that beautiful promised land of pure love and everyone will say, "Well for Fuck's sakes Eric, it's about time you got here...and you'll laugh and say.. well for Fuck's sakes is what I used to say at home..."

My heart cries for you and I'll miss you and I miss you already...but we all have our journeys we must take, huh?...

Love you more,
Sistah Luv
Sue Anderson, Dream Foundation

a soulful admission

Sometimes,
and most times not,
I do say I am so tired of being all things to all people.

I collected masks from Bali, Africa, Indonesia, India, Israel, the ghetto, street vendors and gifts of adornment and appreciation like I have collected worn rings on my fingers and thumbs from the Navajo and Yavapi tribesmen and clanspeople and
I disposed of, gifted others as prized possessions and even lost a few in various moveabouts like a gypsy to rid myself of the expectation of being everything to everyone and sometimes and most times I want to just be something to myself.

And by ridding myself of the masks of many lands and the rings of silver, gold, turquoise and onyx I have slowly, but purposely peeled away layers to expose the only thing that I fear the most, me.

an inward stance

I am not sure my meeting Wednesday with the doctor, the nurse administrator, my case manager, the social worker and my parents left me more comfortable, if anything more uncomfortable and most definitely more distant and alone. The words that were uttered to me in private and to the group were words I have heard before only these eyes speaking were more serious, the tone more threatening, the demeanor brutally honest and forthright, which I would have no other way. I felt a ping pong game playing in my head, a regulation game with a Korean, and every time the ball came in my direction I missed and it stung and when I ducked as I often did out of fear, it still stung.

My disease has worsened and I am considered 'grave' as my kidneys are now involved and the lungs aspirate. My medicine has been altered effective today to add quality and comfort and in my case this means stopping 24 pills for one seventy-two hour patch that I will now wear proudly on my butt check, flashing at onlookers when they least expect it (under eighteen and without proper I.D. excluded).

A time frame cannot be given as that is a human impossible but time certainly is borrowed and I will continue to borrow until I no longer am able. I show signs of another infection and fear at the thought of the final weeks or days when I am expected to be unable to communicate at which point I will be near death, near comatose and final preparations made for my soul to leave my shell, if the soul does not leave shortly before the worst for wear. This idea is one I have been contemplating and I am not sure just exactly what my answer is to the question that has been asked often as of late, 'Do you think your soul will leave prior to your physical death?'. I have avoided the thought and dance around it free flowing like one enjoying a drum circle, avoiding the fire, but becoming the constant beat in four directions, in various pitches.

I imagine flying to a promised land and being welcomed to the sound of 'hello JOE!' until they realize I am not a JOE a JOEY or a JOSEPH, simply a warrior that has completed his life path. So I take a stance firmly in the sand and scream inward as I move onward expecting and needing another day.

friday 21.06

In all of the days of self discovery and otherwise
and in all of the times of patience and impatience for learning from the not so learned and hearing the familiar as well as the confusing, to sitting and thinking and contemplating the mere fact that I was contemplating,
looking at the degrees and the diplomas and the years of knowledge gained I can say with all honesty that nothing, not even a slight parallel prepares you for the experience of dying. For each person it is personal, there are no rules and so much, so very much of the daily ritual, the grind, is obsolete.

medical update

I remember a conversation I had with my treating physician, in Florida, a few days more than eight months ago when she told me that I had a broken transmission and I laughed, telling her that you do not replace a transmission, you replace the car. She hesitated and then told me that the transmission was me and we both laughed trying to figure out how to replace something that cannot be replaced.

Yesterday I learned that my broken transmission is being held together by several rusted paper clips on either side and once again I found myself laughing, a nervous laugh as the once thought, I am going to get better, was replaced at least by medical terms with, there is no cure and my situation is 'grave' at best.

Sadly, when words with power were spoken in the group of seven, I was relieved. Relieved that the disbelievers should be squashed, the denial quieted and the death, my death, looms in the future, not too distant from where I was sitting and 'digesting the medical words of wisdom.' Any person who shed doubt, and there have been more than I care to admit, was able to see an internal makeup of my person in black and white.
I did not cry.
I did not fidget.
I sat somber wondering how to prepare myself for the inevitable loss of consciousness and coma leading to a death that may last several days or a month to be more exact. The concept was too large to grasp, much like the paradox I call G-d. But when it was over, I breathed deep and turned inward and found more energy to burn, only now it is cautious energy, to be used somewhat wisely as I check and triple check all that before and behind me that has been my life.

I move forward today with self confidence and conviction knowing that my life has been well served and If given the opportunity, I will fight further for more borrowed time and wonder if now I am called a miracle, what they may call me in another six months...let the battles continue.

tuesday 18.07

Shy of two weeks by a day or two my hospice 'team' was dismantled to my strong but silent objection and I began the process of educating a new nurse. Other than feeling slightly rehearsed and uncomfortable, extremely uncomfortable ,it was my intention to make this team function better than before as I was and am constantly reminded that this is MY team and it is MY process and MY death.

Two weeks later I look at the lack of care from medicine bottles that are near empty to calls that are continuously not returned with the purpose of streamlining some important necessary evils that are required under the rules and regulations of hospice. At some point this week ( I await the call since Friday) I will meet with my case manager again and loudly vocalize my dissatisfaction with the team effort. If this were the playoffs, I would not be in contention and since my life literally is at stake it is important that all aboard are very aware of my feelings of inadequacy and team complacency.

If change is not immediate as the time is borrowed and this phase of illness I speak freely about, I will be forced to exercise my rights and fire at will, keeping in mind that a different hospice will have to be put into place before a said firing should just occur. To meet with other hospices will be my plan as I learned that my name will not be removed from terminal anytime soon.

I tried,
but the team of physicians see the bigger picture of what my multi system failure is doing. I just see opportunity and hope and no use for a daily process called 'active dying'.

screaming

I have an aversion and thought this aversion was to children only to find out that it is a screaming ten year old girl that bothers me. The Brittany Spears and Kelly Clarkson wanna be mentality and the color of pink no longer frighten me nor do dolls. The boys talking about doing a 'kick flip pop shoves it' on a skateboard and getting judged for their vocabulary as much as their tricks, humors me but the screaming sours the entire adventure that a child brings. And still when I here the lecture, thirdhand, of a mother talking capitalism to a mere six year old when he comments that spilt coffee looks like vomit and she professes that nothing in life is black and white and he questions her about movies I am forced to bust a gut. Its the constant, everyday, out of control in the house even though it is across the backyard screaming that forces me off the train and back into a hermit like state in my head. It simply put is head trauma.

'super cuts'

Did I happen to mention that I got my haircut last week? Cut, actually it is called styled, not to be-little he who did such. Several have seen the picture that I created, no vanity intended, just the simple fact that my hair has not been this short in fourteen years gave me the idea to photograph it... I am more in touch with the new styling mousse to the tune of 11.95 than I am jazzed over the cut but thus far, aside from my indecision on the color, I am quite pleased with the look, more than once described as Abercrombie and Fitch(ish).

Personally I find the whole process cathartic as I welcomed the change and believe that it does lift age lines off my face and gives me something to think about that is different from the everyday. In other words, it is a great diversion from a terminal illness no matter how I look at it and the money, well spent and the time and effort, impressive I do believe. And to the neighbor who had to follow me to the salon to review the process firsthand, second coloring on Sunday afternoon, puzzling.

no dumping

I opened the door for the sales 'boy' from pest control and offered his kind words in the direction of my mother and walked away. I knew that bugs tend to be a problem in Texas and also knew that sooner rather than later it would be my parents turn to respond 'combatively'. With the heat and the lack of water, they are becoming a nuisance and reproducing at an alarming rate. My mother bought into his speech for one reason or another and I watched as he entered the house, from a distance, and made his way down the hall corridor to use the bathroom as my mother stated. Her doubt to his request and her acceptance became apparent and she watched the clock waiting for him to re-appear.

After several minutes she shouted down the hall, 'are you alright in there?'. I covered my head trying to control the laughter, heard a faint yeah and soon after he was escorted out of the house, his scent permeating not only the bathroom, but the corridor as well. I thought of the stories he must be telling his associates tonight or the stories he will soon tell over a cold beer. I thought of the sign I had over my own toilet for years that stated simply, no dumping in scarlet letters. Today he had to dump at a strangers and we knew it.

And with any luck, he will be the representative that returns tomorrow or the next day when the bugs are extinguished and I will look, puzzled and smiling, only to embarrass him a little more, only because I find the humor in the entire situation. And part of me wants to give him a bear hug and thank him sincerely as the excitement and the laughter, non-stop laughter, he provided me for the remainder of today has been priceless and worth telling over and over again.

california

The countdown continues as I now have approached single digits while waiting for my upcoming trip to Northern California, the Bay area. Scott and Lynn are pushing the excitement and also closely monitoring my spiritual as well as physical well being, making sure, as I am so consciously trying, that no unwanted interference prevents me from a day short of an inspiration week in California.

The more I think of the trip and the more I talk of the trip the more the anticipation rises, no reservation, no negative expectations as I prepare to embark and walk on the land that I so most yearn and have called home. I was once taken out of California but the California was never taken out of me. Even before this trip begins I think and watch airfares to plan a return trip or even a more permanent placement to the place where my journey could be called complete without remorse or regret.

And as much as I find the mystery in Texas, Dallas to be more exact, full of intrigue and other emotions, it is not California and the love, although felt, is not the same love.

So if the implication were made that I live in a grass is always green mentality I will bellow knowing that in my world, the cows are lucky as the grass is greener in California. It is my destination, my green and my determination to re-energize and relax on the sands and soils of California. I envision the walking with guarded pleasure.

misinterpretations

I had a visitor this evening one I have known from afar and hear about often only to have seen her several times in person speak lightly or not at all. She is a relation of sorts but never has allowed herself the opportunity to explore the notion of who or what I am. Instead, she has always reached her own conclusions, which seems to be the normal for family members and thus I consider my family extended and not immediate.

Her point was mute tonight as it has been in the past and her information passed down like a sick game of telephone tag as she took it upon herself to reach a conclusion, wrong at best, as to the cause of my terminal being, my current state of physical. My soul knows better and I thought hers did as well. And although I welcomed her and will do so again in the future out of respect for another, her and myself, I am clearly wise enough to know that her intentions are with forethought and her ideas only misinterpretations, an obscurer after thought that has little relevance in my journey and on my life path.

sunday 16.07

I left with little expectation or so I thought and I returned in tears, wondering why I had decided to go in the first place as the expectation that I deny existed ended up crushing my soul for I did not understand and no explanation can now change how I allowed myself to feel, hurt and alone in a club of two thousand if even one other.

It did not help that my sandaled foot was stomped on, accidentally with attitude, by a heel, high and brown and the apology so ungracious and disconcerting. I have sat and wondered for hours now and wonder if something more should be said or whether I need to just accept the fact that people, often many, are not in a spiritual or human place for that matter to accept that which is bothering me and thus, silenced, I was and am ignored and left a pawn on a queen's chess board, laughing hysterically at the one thing I never wanted and received, a loud check mate.

And once my piece was removed I wondered further in my own distance, things I never wonder, or forget to wonder, as the pain is to great physically and emotionally. I now await to cross a road full of traffic and have been dared not to be seen and when I look at what remains I cry again and hopefully soon will fall asleep and live on my terms not those so meticulously set forth for me so many years ago.

For it is me that refused to live my life and fulfill my dreams out of an unwritten fear.

The fear I would not receive that which I still do not have, love.

And I will continue to exude love and pray as I shake my head from left to right and vision a different outcome, a different beginning, a different expectation that I was convinced never was. I taste the salt from my wounded pride and clear my blurred thoughts with my left hand, feeling empty and alone, cold and afraid in the heat of a Texas moon, the sun just waiting to rise so my pain can be noticed by all those who wish to look and make fun of me as they have before and most certainly, again.