Well it has been a long time since my last post, and while
there are some practical reasons for the delay—namely that I’ve been waiting
for any real medical news to come—there have been deeper reasons as well,
specifically that what has been happening in my life has felt frankly embarrassing
and difficult to say in this forum…but we’ll get into that in good time.
On the medical front, since my last blog post most of the
time was spent waiting for a genetic test to come back on my tumor. I’ve had CT scans in the last couple of weeks
that came back clean (thank God), some more spots taken off my back that are
way too close to being additional cancer sites and need even more flesh
extraction (I thought the docs had taken their pound already), and went to
Philly in search of cheese steaks, drugs, and Rocky.
BTW, why does Philly has an extra “L” when it is abbreviated? Shouldn’t it be “Phily?” The natives I asked didn’t know. I did find success in the cheese steaks and
the Rocky department, but struck out when it came to drugs.
The trip was to see if there were some clinical trials I
could get into, and the short answer was “No”.
However, I did learn a few things, namely that should my cancer come back,
the historical survival odds of people with stage IV melanoma are, well, history. The advances made in the last twelve months render
old statistics irrelevant, and who knows perhaps they will really cure this
thing in the future…for now people who are stage IV still have significant odds
to overcome, but it isn’t as bleak as it once was.
For some reason those words don’t give me the release I
crave, but I’m still glad that they are true.
When I tell friends I can see in the faces the significance of the news,
even if I can’t know it in the way they can.
So for now, medically, I’m NED (No Evidence of Disease) and
even if my next scans in 2014 show the melanoma is back, I have plenty of
reason to hope…even if I can’t totally embody hope right now.
If I think back to this summer it seems that my mortality
was with me in a very real and present way.
Some would have said that my blog posts were dark, okay fine, but to me
they seemed full of light as well. Life
was bursting with color, love was passionate, food tasted novel and layered, the
mountains were positively glowing, (and no this wasn’t just the pain meds.) The Logos was pulsing, each strand of divine
DNA connecting all things was luminous.
My summer was much like the title of a book I’m reading by poet and fellow cancer-survivor Christian
Wiman: My Bright Abyss.
There are lives that
experience seems to stream clearly through, rather than getting slowed and
clogged up in the drift waste of ego or stagnating in little inlets of despair,
envy, rage. It has to do with seizing
and releasing as a single gesture. It
has to do with standing in relation to life and death…owning an emptiness that,
because you have claimed it, has become a source of light, wearing your wound
that, like a ramshackle house on some high, exposed hill, sings with the hard
wind that is steadily destroying it. –Christian Wiman
Attempting to be one of these people who “seize and release”
simultaneously, who fight for life and let go of needing to be alive at the
same time…this has been my quest…
This summer the presence of my frailty, my limitedness, was
ever present with me, and while it seemed to brush up, to awaken, to abide with
me, to drive me, it seemed all a bit dreamlike as the emotive movements seem to
float on the surface, never penetrating, shaking my head, blowing my mind, but
never landing in my chest, never sinking into the gut. The external weight was there and was palpable,
but the internal response was numbed, it never seemed to touch me deeply in a
way I could respond emotively. There was physical pain, there was a real
mind job, but it all stayed up top.
Tears were absent, sadness seemed dimmed, expressing grief was still a
ways off. I remember rambling off the
statistics about people in my situation as if they were another trivial
anecdote to be a part of the water cooler banter.
That the weight of the situation wasn’t eliciting an equally
strong reaction from within was not lost on me, and Lord knows I wanted to feel,
to be present as fully as possible to my own dilemma, but something inside me
was protecting me from feeling it all at once.
I wanted to feel it all, but had no desire to prematurely create some
experience artificially.
They say Time heals all wounds: so obviously not true I
wonder why we even say it. Time is
essential, it is true, and Time can bury
wounds if we ignore them long enough, a cheap imitation of healing. But for actual healing, we have to enter the
wound, and the deeper the wounds the more time is needed to feel the fullness
of the wound, which is an initial step towards healing.
Sometime this fall, the stuff that was deep inside started
to bubble up.
This summer I didn’t feel overly self conscious about
sharing about my battle with cancer, probably because facing it seems noble,
brave, courageous, and there is some part of me that likes the image of me
staring down death, …but strangely when it comes to sharing about the aftermath
of the stare-down it is more difficult to write. I’m aware of a strange sense of judgment from
our culture about what this process is supposed to look like. As a man I’m to be the master of my domain,
taking things in stride, keeping a positive outlook, exhibiting strength in the
face of adversity, the whole John Wayne myth is strong even in my generation.
But what I was feeling was at odds with this. Seemingly simple interactions with the kids
would overwhelm me, my heart would start pounding, anxiety would rise, and the
need to escape would escalate. Tears
would only come rarely, but they felt close much of the time. My passion for my work was strangely absent,
and for the first time it felt like work,
that is drudgery and difficult. Not all
aspects of work were tough—I still enjoyed meeting my amazing clients, but I
found a lack of interest in keeping up with my weekly reading and research…it
all seemed so pointless…ashes.
The timeline of life events and our emotional response to
them don’t match up perfectly. In a move
for self-preservation, something deep inside of me, knowing that only so much
pain and grief can be metabolized at a time, created a separation of time
between the events and the response. While
in the last few months there has been little new in the medical front,
something inside of me was finally ready to feel the events of the summers, and
this experience has frankly been almost just as disruptive as the physical events
of the summer were.
I don’t really believe that I have anything to feel ashamed
about, that any of this experience somehow calls my manhood into question. If anything I believe that being undone by
cancer is healthy, normal, and more courageous than keeping it together, that falling
apart is actually a move to being whole.
But I’m aware of the broader culture in which I live that teaches that
these experiences are to be kept quiet, that there is a sense of shame, no
matter how illogical, for men when they aren’t calm, cool, and collected at all
times.
Our culture still views victory as victory and defeat as
defeat. It preaches that men who are
struggling are somehow less than men who project a false sense of conquering by
refusing to struggle. But my Teacher
taught that to go up, you must go down, to truly live you must first die, that society’s
“winners” were usually the losers, and the losers would win, that the rich were
impoverished, that the poor in spirit had easier access to wealth no one else
could see or appreciate.
This divide between how culture thinks I should approach it
and the way of Jesus is so wide that it can’t be bridged. So while I’ve felt comfortable facing this
more emotional time in my own way and have been totally open about it with
friends and family, I’ve been reticent to shout it out from the hilltops in a
forum like this. Strangely enough I’ve
been able to feel the shame of the culture even when I think the whole basis
for the shame is ridiculous and a sign of brokenness. (In
fact this blog was written in mid-November and it has taken me this long to
actually finish it and publish it…yet another sign of me dragging my feet.)
Inside I made some decisions:
I will not rob myself of experiencing my own life by
conjuring up positive emotions I do not have.
I will not force a premature outcome, but trust the process. I choose to trust that the flow of the
current which has been sucking me under, will eventually pop me up downstream, leaving
me worked over but somehow stronger for it.
At first I wasn’t sure if I could trust the process. I was
haunted by the fear that perhaps I was entering a season of depression, and not
having experienced depression before it worried me. Depression to me, is something you must fight
against. If you give yourself over to
depression you may get lost…for a long time.
It seems to me that depression can spiral down in a self-feeding chain
reaction…and I wanted no part of that.
Even dwelling in a wound too long can become a problem as
your identity starts to BE the wound.
Especially if we don’t have desire
for health and wholeness, we will seep in the bitterness that can come from a
wound and the wound becomes the story, instead of a teacher, a gift, a sacred
window into a deeper way of life.
But it seems that what I’ve been going through is a process
of grief, and we have nothing to fear from Grief. I know Grief, we met back when my mom was
dying from melanoma, and I discovered then that if you are willing dance with
her, Grief can be trusted. The Teacher
said that “Blessed are those who mourn, for they will be comforted.” Time doesn’t heal wounds, but that sacred
rite of mourning, the strange choreography
of embracing Greif, of tending to our suffering, of letting go of the object
which She is taking away even while we maintain our desire for it…this dance
works miracles.
Our culture knows nothing about mourning. We want one hour funerals followed by a
potluck where we can go back to talking Seahawks over the cheese tray. Instead of funerals we want “life
celebrations” full of touching stories and fond memories, but hopefully without
having to feel the pain of loss. These
expressions aren’t bad, but they won’t heal nor provide much in the way of comfort. Unexpressed grief is a corrosive cancer that
stifles your ability to experience deep joy, love, hope, and everything else as
well. Grief that has been entertained,
courted, expressed, known, explored, will eventually leave you as a blessed
person, whole, alive and full.
I don’t know where I’m at in this process, at times I feel
healed and at others, the rawness of it all seems very near. (Now a
month after these words were written, I thankfully feel like I’m mostly out of
this process.)
I’m also aware of how other’s reactions impact me. Again, a quote from Wiman:
Whenever I find myself
answering someone’s questions about my illness, explaining what is going on in
my body or the bizarre treatments I am about to undergo, it is as if I am
wholly detached from what I am describing, as if my body were some third thing
to which both of us were impassively directing our attention. This is one reason why any expression of pity
can be so jarring and unwelcome. The sick
person becomes very adept at distinguishing between compassion and pity. Compassion is someone else’s suffering
flaring in your own nerves. Pity is a
projection of, a lament for, the self.
All those people weeping in the mirror of your misery? Their tears are
real, but they are not for you.
It is as if there is only so much of each kind of emotion
(optimism, pessimism, sadness, anger, laughter) that can be felt in a given interaction. Right now I have around a 75% chance that the
cancer will be back, but where over 90% of stage IV people used to die, now
maybe only 40-60% of them are dying—a huge improvement (and these numbers keep
changing.) So how do I react to
this? Is the glass half-full or half-empty? For me the answer to this question is “Yes.” There are both reasons to be optimistic and
reasons for concern.
Most days, when on my own, I’m living into the optimistic
side of the coin, but I’m impacted by those I’m with. When I feel met by someone, when empathy is
present, I feel free to experience my own experience, to simply be in the
moment, and who I am or perhaps where
I am is accepted and held. Thankfully,
this describes the vast majority of people in my life.
But there are some who aren’t able to meet me, they are too
much lost within themselves, they literally can’t be in relationship with me. As Wiman said, for these people I am a mirror,
and they see only a projection, a mirage, a reflection…and strangely enough I
am aware of a certain urge to counteract whatever it is they’re projecting in
an effort to shatter their mirror…I suppose it is an unconscious effort to be
seen, instead of being used, of being reduced to a caricature that fits their
preconceived notions of life.
It almost doesn’t matter what the person is looking for (and
falsely finding) in my situation, this dynamic happens. If I’m with Polyannas who refuse to consider
the negative possibilities and imagine that “it will all be OK, ”I will quote
the statistics that show that most likely I’m going to die. If I’m with an Eeyore who already has me in
the grave, I want to shout “Hey brighten up, I’m not dead yet! There is much to be hopeful about.” With people who overly cheerful, I feel
morose and unseen, with those who are overly concerned, I put on a care-free
air. With people who are relieved that
the recent news is good, I urge caution.
With people who urge me to “have faith” because “Everything happens for
a reason,” I want to destroy this straw god that is protecting them from
reality. With people who are coldly
scientific I want them to see that God is clearly present in the midst of this
whole ordeal…and the list goes on…
This dynamic is going on every day for all of us, but there
is something about a strong catalyst like cancer that makes it more apparent. And perhaps in a culture where there is so
much suffering that has been suppressed and not processed, those who are in the
midst of it become walking icons, where for some only the image is visible but
for others that which resides beyond the picture can be glimpsed. Morals to the story? Look deeper, set aside assumptions, be
curious, let the other be free…for this is essential if empathy is to make an
appearance.
I realize that I say all of this as one who has been an
object for some, and not a subject. And
perhaps in talking about it, I’ve done the very thing I’m warning against—that is,
putting others in boxes. I’ve most
certainly been the perpetrator of this before and sadly, will likely do so
again, so in this I guess I preach all of the above to myself as much as
anyone.
So where to from here?
I originally was planning to write a note at the end of this
post wishing everyone a happy thanksgiving with perhaps some ironically trite
thought on those things for which I’m grateful, and while gratitude is present
and would be on layer of my experience this year, I have a sense of disgust
right now in thinking ending with a sweet verse. Clichés make me puke, and it is mid-December
anyway—turkey and dressing are so last-month.
As I look back at this year, a much more honest expression would be
something along the lines of good riddance 2013. I can’t wait to get this fucking year behind
me, in the books, and move on!
And yet...
…thanks and props to you Creator, my Great Physician, you get me in all moments of all my stories…I feel you God…and live or die, this fucking
cancer will never have the last word.
