uncle

I took my cherry flavored tobacco and offered it to the earth, planting it along the back fence under the halo of the moon serving as my flashlight, thinking that I was alone to say ritual and give thanks for another day, another breath only to realize upon re-entering my parents home that the fire ants too had joined me so I quickly headed for the sink where I washed my foot thoroughly, too late for the itching and blisters that have already appeared.

Today has been a roller coaster of emotion, the fact that the flu looms within helping little, offering nothing but a reason to feel chills and want to sleep which I appreciated as my body is definitely deprived in that department. I had several conversations of great meaning, insinuating to the one I was speaking to a grave concern I had only for the person to agree, not realizing the concern I was voicing had to do directly with antics they showed and I was left baffled that someone with so much intelligence had so little regard for what I was saying as either the guilt was too much to bare or the thoughts I spoke were never fully processed the way I intended.

Tomorrow the doctor returns again. First eight weeks, down to six, then four that turned into twice a month and now weekly, giving me a clue as to the condition my body is in, my mind trying to remain full of hope and faith for the little things I cling to as reasons to continue with strong will and a deep desire for life.

I feel my body changing faster and more powerfully than before, trying not to compare but unable not to notice the dramatic changes taking place. Still, I continue to travel forward on my journey knowing I am not alone, either by words spoken from total strangers or the signs of love I receive from a few when they feel it appropriate. Others have left me as an outcast and this I have yet to fully accept but realize that days that once were are no longer and truth displays itself in the oddest manor, the hurt and misunderstanding following and causing a pain that continuously pierces my heart.

I look forward to a change in temperature although I know a fall and then a cold winter will be rough, very rough on a body that has now become fragile, a body I call my own, hoping I am able to survive to see an ice storm or maybe even the madness of March after the thaw.

Probability is certainly not on my side and although neither was it last, this time it is different and the dwindling away of my physique is quite apparent even to those that see me on a daily basis, almost too much for those that have not seen me in awhile without a fore warning of the thinness that has become me, the pace slower, the voice rougher, as all energy expended is obvious now to the naked eye, even one not watching.

I still make plans and am determined to see them through before I decide I can do no more, the idea of lying in bed for hours not appealing, not wanted and certainly not looked forward to. I have shown I am a survivor and this I am proud of and grateful for those that believe and continue to offer, meaning what they say rather than passing gibberish in my direction as it is the right thing to do, no where to be seen or heard from when it really matters and their offer of support gone with the chirping cricket stepped upon and eaten by the little dog.

Tomorrow is another day and I look for it cautiously, knowing the doctor has always left me wanting to process his words, his findings and for this I keep the i-pod handy, ready to serve as my escape from those and that surrounding me when I want to enter a space I call my own for no other reason than it is something I need to do. Still, with all before and behind me I refuse to say uncle as I did as a child, taking the punishment for reasons unknown but reasons none the less.

a rambling heart

One of the important things ( I erased most only because I do not believe there is a set order and since my Journey continues and I know not what the future feels like, I could not use the word most as I hope for a future of some kind) I have learned through all of the trials and tribulations of late, is that rest is essential and the failure to do so is pure self mutilation, although I believe my need to continue to move as much as I am able again and again, when I am rested and I am taking my medication properly, I have a greater ability to function iif my function that day is as 'simple' as conversing on the tele.


I have become a sort of (my body has become) balance, whereby off too far to one side or too far to another causes physical symptoms that effect the mind and spirit as well. Today has been the first day since my parents left that I took the time to make what I had to work with, a home that felt like, although not mine, I belonged. And Tuesday morning my parents return. Last week was the energy started negative, possibly intentional, and it has taken me this long to calm my system and some of what was pressing then continues to be pressing today, the importance equal and the outcome to be watched quite carefully as I can only suffer as long as their is no resolution and clearly, not knowing where nor whether your hospice given and taken medical records still exist, is beyond important to me, it is essential.

And although I know by law they must be preserved and kept and viewed per my request, I am in a situation where Journey Hospice shut its doors, failing to give me access or the ability to obtain my records after beginning to ask for a copy almost a month ago, before I knew of any shutdown, refusal to provide life or death medication as well as nursing and aide care.

To know my respite facility, as kind and genuine as they could be for me and Ashley Marie, has not been paid baffles me, saddens me and embarrasses me , believing that the gross negligence of Journey is somehow my issue, the furthest thing from the truth. To watch an administrator of a hospice, in front of an APS worker (this he was unaware of until shortly there after) threaten me with signing a grossly mis-stated and untrue letter or face NOT receiving medication baffles me.To know I was one day from being out of crucial, life or death medication (which not all are) scared me, telling me I still hold fear about that which I write, my terminal disease.

Seeing Dr. V. alone, patient to doctor, encouraged me although the news I received was anything but encouraging. Watching the dogs relate to my presence, demanding my full attention, my offering such, acceptable and rewarding by a trick, a gesture or a pat of love and Ashley Marie knows not much passed pleasing her 'papa'. To watch the little one, very independent, follow the leader, funny and knowing that they felt what I felt and served as further signs as to my physical, mental and emotional state.

I am allowing myself to be an adult, jaded and then some, but an adult with all the responsibility that comes with it and like any vacation I have taken, friends I have visited, it takes a few days but the outcome, real. I want to live again. I want to fight and I see a purpose, an independence so once taken for granted, now, yearned for as a delicacy. Its not an indication of a son/parent relationship that has gone astray, it is a son/parent relationship that has no foundation and thus is only what it can be, me a child of no more than 17, when I left for college, my parents believing they cater to me, not knowing who me is, as I did not walk into their home at the age of 17, but as an adult with what possibly and most likely was thought to be a terminal illness. And when the second and third opinions confirmed what my mind was already telling me, I entered a world which no other could experience, not out of want, but out of not knowing, not feeling, not being.

I am not better, more knowledgeable and therefore wiser. I am not less grateful. I am not changing except for physical manifestations I too can see. I just am and right now, it is o k.