saturday 27.05

A day of remembrance as it is Stephen's birthday, son of momma Carole, 'brother' and spiritual guide to me. This marks the thirteenth year without saying happy birthday and knowing he heard the words as he passed fourteen years ago this August. Today we celebrate Stephen's life.

thursday 25.05

I keep asking whomever I ask, usually someone with a nice title, maybe not a high paying title, but a title just the same, if my situation is 'normal' when viewed as a complete situation with other persons who are experiencing the process of death and dying. And I ask this because, as dysfunctional everyone says their family is, I want some kind of validation that mine is just like all the others. Unfortunately, I continue to hear that sadly, my situation if far from normal and it troubles even the most schooled is psychiatric care and the 'art of death and dying'.

Everyone deals with the concept of the mortal being differently, but having said this, there still are certain things that society just expects from a family, biological or otherwise and I am learning quickly, that mine does not even rate mediocre. And possibly it is because my family has not experienced its share of death and illness and possibly it is just a lack of compassion we have for one another, the later being the most likely scenario. And although it saddens me greatly, I accept it as my dysfunction and know that this too is temporary, unsettling, but temporarily. I never thought I would be in this situation and to know or hear or feel that my own do not 'get it', churns my stomach even more than the disease process itself.

status report

A week or two days have past since I tried to capture the feelings I was going through, in the moment, as I battle my disease. My body is less for the wear and tear and I still feel residual of tuesday, a residual I wish to place behind me as the past, a distant past. Today the nurses arrive and I will learn my resolve and although I do not look well and it is obvious to even the untrained eye that my health has temporarily tumbled, I get back up, take out my guitar and strum C to G and back again to the dislike or amazement of the assortment of dogs watching in the foreground.

The nurse provided me with no more comfort except the challenge is now before me to make a decision to postpone my trip to New Mexico as my body sports two infections and is not battling either well, thus, the decision is made, the formality and realization that another intension has been placed on extended hold most definitely is bothersome. I did not go to New Mexico, a wise decision, but gut wrenching with its meaning just the same.

impressions

I used to believe that a social worker was a necessary evil for in the process of palliative care, the death with dignity philosophy of St. Michael's Hospice, until last week.

Last week I met Leslie, a social worker, new and not a Freudian slip like the other, working for St. Michaels and upon visiting me, I was not pressured to tell my predicament, one I have told one hundred times or none. I enjoyed telling it. Leslie was different and I was different with Leslie and almost as soon as she said hello and I reciprocated, or even visa versa for that matter, it was obvious to me that this was a bond, a relationship, not expected, but adored and accepted almost immediately. And as time has passed, a short amount of time, less than two weeks, our learning curve has been quite steep, our conversations full of compassion and active listening and WE have grown a deep respect and admiration for one another and even at this early stage we are able to vocalize how difficult it shall be when we are forced to say goodbye, as our paths part one final time. However, in the now, the sadness is evident in our actions. A hint is made between a bit of laughter here and a quiet moment there. Leslie has witnessed this path before and I, the novice, am living it and still teaching her as the learned spirit. And she too views me as a warrior and has accepted a place in the nameless tribe that used to be faceless, but now, continues to grow at a heartfelt rate and is beautiful.

And the next time I am asked why I can't smile and laugh and 'be lovey' with another as I am with Leslie I will once again nod my head with disgust for the asked question and wonder what agenda the asker has in mind. For it is rare, extremely rare, that one can bond with another so immediately, break down the walls of man-made emotion and just simply be human with all its fanfarre, trials and tribulations.

Eric is a warrior fighting the greatest and most challenging battle of his life! He is indeed an enigma, soft and gentle, firm and decisive, impatient and anxious, easy going and warm. Eric has blessed me with the privilege of knowing him and learning him as he fights this battle with grace and dignity. Thank you, Eric, for allowing me this privilege and know that you will always have a special place in my heart.
With Much Love,
Leslie

four corners or bust

Saturday I am scheduled to leave on my trip to New Mexico, more specific, Albuquerque and Santa Fe and as with past excursions here of late, the grumblings are starting from within an ear shot, a debate of sorts, regarding whether or not I should or should not travel.

In my mind, which is what will matter, it is not a topic open for discussion. It is soley my decision and the next time someone asks or infers I will not be getting proper medical care if something happened to me, that someone needs to look in the mirror at my current care and realize what I do, there currently is no care.

I take care of myself. I do not ask for nor bother anyone when I am feeling ill and there is no difference between being ill in Texas or where I have the freedom to do as I see fit, outside of Texas or simply outside of this house.

And if an implication is made and a judgment thrown that I must be doing well because I am able to travel, well, believing is half the truth I guess, so believe what you want and allow me to work with the truth, my pride and my dying with dignity.

When it is time for me to put down the plane tickets I will know. And in the event I do not know, that is alright with me too, for it is all part of my path I am a walking.

wednesday 23.05

I wake up in the morning to the thump of a dog tail against my bed and an attention crazed golden retriever facing me only to my right, so I do a thirty second assessment prior to moving too far. This morning the notion of a pain free day already exists not, for that was a fore gone conclusion at prior waking, 4:30am. I have decided to do something different today. I awoke, did not like what I felt or saw and thus, shall roll back over and try it again from another side, later.

caring for the wallflower

cosmopolitan

tuesday 23.05

Everything is racing and it hurts. I can feel each organ as it calls me by name, each one demanding attention at the same time, attention I no longer have to give but demand they do and no medication eases the pain. And the taste of the morphine bitter and a constant reminder of the battle I am engaged in. I count my teeth with my tongue and lose count at seven, a train of thought lost and repeated, lost and repeated again.

The blood, I hate the blood and I sense the blood and I rush like the pounding of my head on construction glue to make sure that every little detail is in order but that too is impossible and I cry out for help and there is no one to help me, no one. I am told to go to bed and relax and I do not know the meaning any longer...

My world spins and I am the dust lay ceiling fan. The colors once vibrant spin too, shades of gray and blended but not a smooth blend, a forced blend. They are unappealing and the smell of food nauseating at thought and blind to sight as I try to concentrate on something, anything other than my physical predicament.

A spirit runs through me, cold, unlike the feel of morphine, hot.

I shake and stumble, legs crossed and glass pulsating with every envisioned step. I am powerless and my disease advances and I turn to catch its direction only to know that it approaches from all directions with a vengeance and I fear. I simply fear and try to drift to another place but not to that place for which I am called but to a comfort place for NOW, only now, for that place is for later, at least in my mind, in this moment as another passes before me. Broken sentences and a broken body fighting tireless for another moment and I continue staring down at Ashley Marie, watching her breathe and move her paws as she dreams of an approaching duck or maybe a caught frisbee.

I smell vomit, my vomit and it is down deep and I tell myself over and over and over I am not going to be sick now, I am not going to be sick as I swallow the taste, the disgusting taste of a dry heave waiting to exhale, stale breath or a molded piece of goat cheese. I stare at the computer screen and see something and remember less than nothing, grab my cigarettes and head for the backyard to smoke, a long awaited and much needed smoke at the height of my imprisonment. It is well before rush hour and I try, desperately try to avoid traffic, my traffic.

My hair is too long and my skin itches to the sight of an open wound and I feel no yawns, only incurable pain. I revert back to that place where only I can go and only I can experience for it is 'me' I am fighting, the only me I know.

monday 22.05

...a conversation piece was purchased and put together by my brother to replace the table my parents already had. This is to be more functional and easier for my father to maneuver as it is a high table, in essence, like the barstool, only more pieces to converse around and ofcourse, for my father, as he already has declared his ownership and spot.

it proved a useful symbol of conversation that 'headed south' and cannot be recovered as viewpoints are different, attitudes formed and perceptions, individual. however, I have chosen NOT to entertain the idea of watching the hand dictate conversation at a meal and now, more than ever, will walk away at the first sign of my definition of abuse, mental or verbal.

i now am much clearer as to what drove me away from the nest 24 years ago and what kept me away and why, the pit of my stomach has become a hollow pool of infection and ache. and I choose never to return to that place of self hatred and destruction, created by another, only acted upon by me.

war wounds

ever have one of those days where the wind is howling and it is just brisk enough that you need to put on your favorite sweatshirt for internal comfort? well, me too. only I got a little too comfortable and while dozing off into distant lands I must have forgotten my plight and awoke to burns, cigarette burns and the holes to prove it.

this weekend, I made a patch so that I may hide my memory of a grit gone bad and an irresponsible smoker, me.

a fallen star chasing time again...