It is possible that in and through all of this I am more
lost at times now than ever before. In case
your joining now for the first time I will confess now that the direction that
this blog is going to take is elusive even to me.
It is
often that I find myself in the situation that is a flurry of activity with
great noise and where monitors scream and pulse rates seem to pause mid beat to
allow for my heart to sink. Temperatures
flare and blood pressure drops. Lists of
emergency medicines are rushed to my system as the resgular onslaught of the
full meal of pills is put together for me in careless fashion. At one point my palms would sweat and as
blood or vomit would drop from my body. I would audibly release prayers and promises
to a listening party in hopes for strength or change. Now however this scene of emergency is so
commonplace I just find trying to focus on the next step is my only move in
this place. Stay conscious, or try to
remember every possible reason for how it was I arrived here. Even at times going to lengths to try to
contact that last loved one or three that I in this periless time cant but
think about. Did you know that when you
cry you salivate? I only bring this up
because as it were in these instances at one point I drew upon tear glands that
in conjunction with their operation, signaled to my own saliva glands to do the
same, and now in the time since the eyes have been drown in tears, my mouth
still acts without its companion.
I have
been rushed to the emergency department
eight times since January of this year.
All were followed by admittance and treatment for various infections,
viruses, bacterias, and cancer related problems. From February to June the longest time I spent
away from those white walls was ten days.
I have lost the function of my
tear glands and am now headed for blindness.
The transplant has taken up arms against my skin and since march I have
been lathering with either a thick layer of Vaseline, aqua fore, or zinc oxide,
and leaving applied at all times to 90 percent of my upper torso. There has been significant muscle loss along
with vision changes that has made movement difficult. Several new medications cleanse my palette as
I now travel weekly back and forth to san Francisco to do a treatment called
photopherisis. With port in use and
blood manipulation via light I find my Tuesdays much less filled with tacos but
more so piled 6000 dollars high on a tab I pray to never see. The time split is siphoned just one more way
by sleep. The changes in skin
composition, and med concoctions take me to delirium and sleep for at least one
third of my conscious existence.
This is
the current cost of being alive. I pray
daily that my heart finds solace in this transitional hell. I have been blessed by the accompaniment of
others in my travels and as I lay bedside have found on many occasion friends
taking the time out of their lives to
hold my hand and through their hidden tears we have been able to remember other
times. The more frequent inquisition
now is a timid but gnawing and persistent question of will you survive this phase, how long do you have, are you in pain?.. and
so forth. I try to be honest with others
but as I do I feel myself wanting to lie to me.
In the past five years of ups and downs and downs I have been put to the
wall and asked to climb. From 4 week
daily chemo courses that leave your body torn, your mind exhausted, and your
spirit worked, to the long term damages wrought by chronic illness, there have
been many things to work through. Im not sure if it’s the lack of muscle in
my legs, the scar tissue that now covers a good deal of my body including my
face. If it’s the diminishing vision I have
that seems to correlate to a deeper meaning of really seeing my way through this. Or maybe after five years of climbing, 4
cancers, a bone marrow transplant, 13 places ive lived, countless treatments,
and departure of physical abilities, my life expectancy shortened drastically,
the loss of a wife and several friends I
may just be really tired.
At any
rate the plodding along will continue. The
gratitude for those who accompany me in this endeavor will never diminish nor,
unfortunately will my need for strong support and love to continue. I just hope that as the next wave of
difficulty prepares I am able to find the inner resolve to not let it be my
final wall. That little access to the energy
left inside that does not know failure.
As I said
before the direction at this time of this blog is undecided but very much from
the center of me which I believe may end up being more telling of my struggle
than at other times. Maybe those facets
of my story have not had their place with me their telling and in that I may
find space for more. This is my story in
a late style of me.
