hospice returns
Its been more than a difficult couple of days as I have kept myself somewhat secluded trying to make sense of that which has caught me somewhat off guard and to a point, crushed my being, mentally and physically, unbalancing my already teetering CHI and keeping my mood somber at best.
When I was originally told I was terminal I waited awhile before I asked about what symptomatology would let me know that I was near or nearing the end of my journey and matter of fact, my questions were answered by lvns, social workers, nurses and physicians...me always listening to what they said and comparing it to what I was physically feeling. Many of the things that were said I have not so much waited for but wondered when the symptom might come into fruition and when these symptoms possibly would greet me in one form or another.
The summer months have led way to a decline that I noticed as did those around me, many commenting factiously as others distanced themselves from my being, me trying to keep a spark in my eyes, a flame lit as my journey has continued.
With the decline, my symptomatology has altered, much of what I was told would happen, happening, exploiting an internal fear that someone might find out, a fear that I was spinning out of control and one day would no longer be able to hide that which troubled me, the nearing of my journey's end, the end of my personal ability to care for myself without the help of another as the encephalopathy that has always been present began to worsen and my ability to hide what was happening became an impossible feat.
This past Friday it all came to a head when my PCP informed me that it was in my best interest and the interest of my 'rapid decline' to be placed back on hospice, me knowing that this time, I would not find a reprieve as I have gotten for the past nine months or so, knowing that this time, the end was in plain view...a view I have written about, blogged about and knew was before me, my death.
Thus, as I interview hospices I am paying close attention to the eyes of those that are visiting with me as the eyes are telling me what I need to know, knowing that whomever I choose will walk with me to my journey's completion, watch me lay down my sword, dis guard my armor and surrender myself to my creator as my soul flies onward and upward, the end nearing as never before, but having always been close since my diagnosis of terminal.
I again watch people and wonder what emotional scars I will be forced to endure as acquaintances and those I have established friendships and bonds with, slowly or abruptly walk away, needing their own closer rather than face their mortality through me, something I have faced before but never truly gotten over as the human heart is hurtful and the memories remain fresh in my mind of those that chose a path less traveled, one that did not include dealing with a person who was terminally ill, me.
As I gear up for the fight, the final fight, I also gear up for the hurt that I have seen before as those who are unable to handle my situation will simply stop calling or just go about their daily routine without me in it, leaving me to always and often wonder where they are, what happened and how people can appear to be so cruel as I personally cannot imagine treating someone with such a cold heart, a move, in my opinion, full of selfishness much like the human beings I have known for years and no longer communicate with and it causes me to stop..
step back,
pause
and hope that this time those I have surrounded myself with might act different, always knowing that the human mind is not programmed to accept what it cannot understand or wish to be a part of and mortality at an early age has to be at or near the top of that which cannot be understood and thus, the terminally ill is left to walk alone or with those who are trained, not those who have been there or where there time and time again until tragedy struck, causing way for a re-examination of friendship and what is perceived as important as everyone deals with death and the dying differently, many choosing not to deal with either at all.
As I hold my breath and wonder how many breaths I have left, I know that I am not in control, the world is bigger than me and the people I write about are teaching me as I am teaching them, hopefully as a lesson pre-determined prior to entering this life, the pact made so long ago with my creator and I hope that my decline and eventual death will spark communication and force some to re-evaluate how they treat others as this time it is me, but it easily could have been them. And the one constant I know is that I would have stayed around and seen my friend to a completion, not walking away or giving excuse to exit or refusing to acknowledge that which might be painful or heartbreaking but that which is part of life, dying and the dying process.
When I was originally told I was terminal I waited awhile before I asked about what symptomatology would let me know that I was near or nearing the end of my journey and matter of fact, my questions were answered by lvns, social workers, nurses and physicians...me always listening to what they said and comparing it to what I was physically feeling. Many of the things that were said I have not so much waited for but wondered when the symptom might come into fruition and when these symptoms possibly would greet me in one form or another.
The summer months have led way to a decline that I noticed as did those around me, many commenting factiously as others distanced themselves from my being, me trying to keep a spark in my eyes, a flame lit as my journey has continued.
With the decline, my symptomatology has altered, much of what I was told would happen, happening, exploiting an internal fear that someone might find out, a fear that I was spinning out of control and one day would no longer be able to hide that which troubled me, the nearing of my journey's end, the end of my personal ability to care for myself without the help of another as the encephalopathy that has always been present began to worsen and my ability to hide what was happening became an impossible feat.
This past Friday it all came to a head when my PCP informed me that it was in my best interest and the interest of my 'rapid decline' to be placed back on hospice, me knowing that this time, I would not find a reprieve as I have gotten for the past nine months or so, knowing that this time, the end was in plain view...a view I have written about, blogged about and knew was before me, my death.
Thus, as I interview hospices I am paying close attention to the eyes of those that are visiting with me as the eyes are telling me what I need to know, knowing that whomever I choose will walk with me to my journey's completion, watch me lay down my sword, dis guard my armor and surrender myself to my creator as my soul flies onward and upward, the end nearing as never before, but having always been close since my diagnosis of terminal.
I again watch people and wonder what emotional scars I will be forced to endure as acquaintances and those I have established friendships and bonds with, slowly or abruptly walk away, needing their own closer rather than face their mortality through me, something I have faced before but never truly gotten over as the human heart is hurtful and the memories remain fresh in my mind of those that chose a path less traveled, one that did not include dealing with a person who was terminally ill, me.
As I gear up for the fight, the final fight, I also gear up for the hurt that I have seen before as those who are unable to handle my situation will simply stop calling or just go about their daily routine without me in it, leaving me to always and often wonder where they are, what happened and how people can appear to be so cruel as I personally cannot imagine treating someone with such a cold heart, a move, in my opinion, full of selfishness much like the human beings I have known for years and no longer communicate with and it causes me to stop..
step back,
pause
and hope that this time those I have surrounded myself with might act different, always knowing that the human mind is not programmed to accept what it cannot understand or wish to be a part of and mortality at an early age has to be at or near the top of that which cannot be understood and thus, the terminally ill is left to walk alone or with those who are trained, not those who have been there or where there time and time again until tragedy struck, causing way for a re-examination of friendship and what is perceived as important as everyone deals with death and the dying differently, many choosing not to deal with either at all.
As I hold my breath and wonder how many breaths I have left, I know that I am not in control, the world is bigger than me and the people I write about are teaching me as I am teaching them, hopefully as a lesson pre-determined prior to entering this life, the pact made so long ago with my creator and I hope that my decline and eventual death will spark communication and force some to re-evaluate how they treat others as this time it is me, but it easily could have been them. And the one constant I know is that I would have stayed around and seen my friend to a completion, not walking away or giving excuse to exit or refusing to acknowledge that which might be painful or heartbreaking but that which is part of life, dying and the dying process.
posted by the warrior at 3:48 AM
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