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.