I’ve been thinking for months about the words, “scared, scarred, sacred.” Simple wordplay at first, transposition of one letter and then repeating another. I am in a place where I sometimes feel scared. Added in is the mysterious affliction of a skin disorder that seems exacerbated by this blood cancer, has left me scarred on the outside and inside, physically marked and psychologically wounded by the distress of visibly disfiguring lesions that have been a torment resonant with the Biblical story of Job, so much so that I call it my “Job’s Affliction.” I don’t know what Lucifer and God bargained for in choosing my body to be the battleground testing faith on so many secular and spiritual levels.
Yet, my lifelong quest as a wanderer has always been aligned with transforming fear and loss, humiliation and shame, into sacred wisdom, approximations of grace received from many sources overpowering the darkness that would drag me down permanently, if it could; I don’t let it win out, no matter how tired and disheartened I become. But, I have been brought to my knees too many times to count and these battles of wrestling with unseen forces (Jacob and the Angel, God and Satan, a lifetime of depression fueled by insidious grief, or cancer hidden in the matrix of my bone marrow, my lifeblood) erode me, too.
These are the times when I must find the sacred in scared, seek out balm for my scars and renew my faith in a life that is never guaranteed but squandered if we let it go without waking up and staying awake whenever we’re beaten down. Thus, the new photo posted in my header above is from a very recent but brief trip to the Nevada high desert in Lamoille, at the base of the Ruby Mountain Range in northeastern Nevada. While contemplating cutting my hair (see prior post) and scattering it in the desert winds I decided to first take a photo for a memento of that long hair I may never have again but cherish now. The photo was a surprise, capturing the strength and joy I felt in my beloved open spaces of dazzling sunlight, wind, sagebrush-scented breezes, the dry touch of something like grace in the sacred moment of being present, alive, and restored to my true self.
Cancer is a word that scares most people, at least when it comes too close in the body of someone we know, moreso when that someone is oneself. It’s also a word that is used mostly as a negative metaphor, e.g., referring to racism as a cancer in the body politic of civil society. Neither racism nor cancer are metaphors but they have a lot in common, particularly the destruction of lives. My subject here is not an essay on racism and cancer beyond what I say above to show how closely related they are in the body, be it an individual body or the collective bodies of the communities we inhabit. Because if we are driven by fear, as racism and cancer so often are, we close down, become intractable and the less open we are, the more harm we allow to others and ourselves.
Vulnerability accompanies compassion, true compassion for ourselves and others, but vulnerability is sometimes beyond our reach unless we are committed to doing the hard work it demands of consciousness and persistence in the face of daily defeats we may never be able to banish in individual lifetimes. We “think” we run out of time, but we have enough time no matter what we choose to do and must choose to do as conscious beings with the capacity to behave as if our lives depended on each other, all of us together or none of us at all, even those among us who prefer to be solitary; it all works out if we can envision and restore balance wherever or whenever we are called. Cancer has called me now, a detour I am impatient to end but one I must understand for the lessons it has to offer, so I’m paying attention but my world is smaller, too, and lonelier now because no one else can walk this trail with me through fire and destruction first.
I am about to become the most vulnerable I have ever been, destroying my bone marrow and immune system in order to “salvage” it and live. I have lived in places, cities and neighborhoods, that scared me because of the racial tensions caused by many forces beyond my control, disparities of the heart and spirit, economic blight, violence and crime, hatred and poverty without any hope of redemption or “cure.” I have lived through being forced to walk alone and scared on dark streets, in my house, on public transportation. I have been attacked and survived. I have been scared by my own doing when taking chances or losing control, by my episodes of frightening depressions and inner pain so great it blotted out all the light. I have learned, somehow, that we must retain vulnerability while protecting ourselves, another paradox. I have learned to search for the light buried in the darkness always. There is light buried in my bone marrow, even in this cancer.
I am most interested here in how we find the sacred in scared. In our world there is too much that scares, too much that will not be cured, too much that maims or murders our spirits, dreams, and lives, whether we have cancer or something else eating away at us from the outside in, the inside out. I have no doubt that unrelenting years of hard losses, grief, and unmanaged psychological stress contributed to the breakdown of my immune system. This does not mean I believe I “caused” this cancer; no one knows what causes it and it could just as likely be a genetic weakness in cellular physiology that is my own Achille’s Heel. What is of small interest to me is that one of the cellular genetic analyses of my bone marrow samples for myeloma includes what is called a “translocation” of chromosomal material, i.e., something is missing or not in the right place. So fitting that I then choose to “translocate” or relocate the letter “c” in scared to create “sacred.” I like this correspondence.
Even more, I choose to find the sacred in this challenging obstacle course I now face, although cancer and its treatment are also dances between the sacred and the profane every day. The things that must be done to one’s body, the invasive procedures and introduction of toxic chemicals meant to help heal while they also hurt, is a paradox sometimes too overwhelming or frustrating to accept. On those days, I must lie down and wait it out, knowing all is temporary but necessary to extend my life and prevent irreversible organ damage with an entirely new set of miseries.
I am not scared about dying; that is less likely with this particular type of cancer that I have (and I do mean my unique form, as myeloma seems unique to everyone). Infection and kidney failure are the likely end games down the road someday, maybe, if something else more mundane doesn’t take me first. Instead, I am bargaining for more time and less toxic chemotherapy for the rest of my life. I am bargaining for freedom to keep wandering in remote places and not be a victim of cancer or the horrendously, obscenely expensive regimens I face for the rest of my life. If I so choose; I do and always will choose my own way forward, up, down, or through.
Words are powerful. Words are also confusing, harmful, meaningless, and necessary for communication among people who are literate and attached to the meanings they give to words, or the words they use to try to give meaning to feelings, experiences. We can more readily name what scares us before we can even consider what we believe is beyond or even beneath what scares us. The sacred can scare but it’s ineffable and often expands rather than contracts; maybe it’s the opposite of fear because of its relationship to the unknown, the other possibility for interpreting and responding to or participating with the unknown?
Without adequate words one only approaches but does not necessarily contain or restrain the unknown sacred, maybe even merges with it, if receptive, but it is beyond language and words. That is why I find the sacred out in a beloved, wordless landscape; I try to find snippets of it in whatever landscape I inhabit but confess that the Great Basin high desert is what draws me strongest. Texas is too hot and humid, still too unfamiliar. The pull of the Arctic Desert of Baffin Island, Nunavut felt almost as strong as the Great Basin, a function of light, remoteness, clear air and something wild and raw dwarfing the always insignificant human figure. A writer is always wrestling with words; I am engaged in a futile exercise to give words to so much that is ineffable, but I am compelled to try to; that is why maybe all poems and writing are failures as finite creations but they evoke the sacred, the scared, and the scarred in our lives; maybe evocation is praise enough.
As the weeks draw closer to the end of this “induction stage” of treatment with what has finally been an effective chemotherapeutic agent, I now face the scariest part of preparing for the upcoming autologous stem cell transplant in the latter part of September. Beginning at the end of this month, I undergo my third bone marrow biopsy since November, 2013 and February, 2015, that piercing of my bone that drills out a core sample of bone marrow. It is reminiscent of core sample drilling into the earth, but the earth here is mine, my solitary fleshy landform, for are we not made from mud, clay, water, minerals, earth elements, and star-dust?
Then there will be injections to stimulate the growth of stem cells that will likely overcrowd the fixed space of my bone marrow confined by rigid bony walls and cause some pain until released in the “harvest” that takes place days later, the filtering of my entire blood system through tubes and a machine attached to me, filtering out plasma to retrieve and freeze stem cells that will then return to me another week later. But, first there will be another invasive procedure, the surgical placement of a second device in my chest, already scarred and lumpy with a smaller internal port that spares me numerous needle sticks and blown veins. It is another scar and this next one will be larger for a device that will feed a tube into my aorta, close to my heart, and leave three external tubes/ports for all the blood drawing, transfusions, antibiotics, fluids — everything that will keep me alive while wiping out my immune system and bone marrow to then “regrow” a new immune system with a fighting chance at defending itself against myeloma cells for a few years on its own, with maintenance drug therapy but not the intense six months of what I am now completing in this stage, I hope.
There are no guarantees, only a gamble at this junction of disease and healing, and gambling scares me. I find it ironic that I grew up in a gambling state, Nevada, but never developed a desire to gamble as entertainment or obsession. I gamble, instead, with my life now. (The low mortality rate of this procedure is encouraging, but there are no guarantees.)
So, as I fortify myself and try to prepare myself in practical ways for what may be a few months of radical physical changes and moments of serious risk, unintended consequences, and transient misery or illness, I will take this high desert heart and windblown sun burnished image of myself through the scary moments, infusing them with grace, believing I will find the sacred more powerful than the scares and the scars. My hair will fall out; someday I will carry it back to my sacred landscapes and cast it into wind and sagebrush, hoping some bird or small animal will use it to create a nest and nurture new life. I am nurturing new life by not seeing this cancer as an enemy to be attacked with images and metaphors of war. That is too common but does not fit with my way of being. This cancer has been a process out of control until now, but a teacher, too. These treatments and various indignities of dependence and constant scrutiny are processes, too, processes leading to an intended result that may or may not turn out as hoped.
But, I am a wanderer of the mind and choose to accept soul-making experiences over all others, learning every step of the way, so this cancer is not my worst enemy; it is an unwanted guest that I somehow must make peace with by opening up to receive as much grace and light of healing as possible to overcome the darkness that only has come to make me pay attention and live my life, really live my life the way I must before I have no life to live, as we all must do, however and, less optimistically, if, we learn that. There are no guarantees and many lives appear unfinished, incomplete but we cannot judge. I was complete in the moment of this photo, cancer still living it up in my bone marrow, but I was paying attention to something far more important than cancer. I intend to keep doing that, too, however and whenever I can manage it.
Cancer gets its due now and someday it will be a footnote, a subscript, a sleeping serpent hibernating in my bones perhaps, but not the sum of my being. I’m okay no matter what happens next. It’s all what we make of it when it becomes ours and this cancer is, for the moment, mine. My intention is to listen and then move on to something else more interesting and life-affirming, always!