let's sit briefly with the idea of dying

my husband and i received a mixed bag of news from the oncologist last week.  melanoma has invaded another lymph node, but instead of recommending surgery there are drugs that in combination can halt the march of disease.  which i guess is good news?  the oncologist also said that i'm an anomaly because there were others diagnosed in 2009 with the same stage melanoma as me and they are dead and my melanoma thus far seems to be less aggressive (just like my libido and metabolism, ahem) and he said "i don't see you dying from this anytime soon".

which is good news.  great news.  fuckin' a.  some sort of smiley fuck-faced emoji.  especially because i thought death was imminent, a truly difficult pill to swallow and i wasn't sitting well with the accelerated inevitability of death.  but the shitty irony is that i have such an unhealthy relationship with death that i haven't been living, i've been paralyzed by my diagnosis and the slow march of the disease and each time i go under the knife my mind, body and soul is forever changed and thus my reality.  and i had zero coping skills, except with alcohol and drugs which is a form of palliative care.

but something shifted in me about two months ago, and i feel a tiny bit more comfortable in my skin.  couple that with the oncologist's words and i now have some breathing room.

inhale.  exhale.

literally in the midst of the shift in my thinking and the oncology appointment my husband had organized a trip to madison, wi to attend a talk by stephen jenkinson the founder of orphan wisdom and author of die wise.  a week before all this my husband sent me a link that said "i think this guy is right up your alley".  fuckin' a right.  may sound strange but it is the best gift i've ever gotten.

death changing.  i will write that again.  death changing.

so we traveled to wisconsin and stayed with friends in their beautiful home and made our way to madison where we sat in a hot unitarian church designed by frank lloyd wright, for three hours, endured five long songs sung acapella by women in comfortable shoes just to hear canada's willie nelson look alike talk dying.  (just to put this into perspective i walk out of movies for less).

jenkinson said almost right off the bat that grief is the antidote to depression and that in north america we put a finite time on grieving and if you grieve too long you are abnormal and how utterly fucked up that is.

he also said that in other cultures humans walk with death as their companions, some for decades some for years and in our culture we wait until a terminal diagnosis or a natural death to erupt and disrupt our lives and then we mostly go into a state of denial, some grieve, some medicate, then back to life as we know it without gleaning any sort of insight or education that could and would help us to live better more meaningful lives.

he discussed the root word of palliative which in latin is palliat, or cloaked.  and that the words palliative care, pall-bearer, and cast a pall over a crowd are all rooted in masking or cloaking the truth.  the truth being, you are fucking dying, there is a dead body in there, and don't be deceived.

i had a friend recently say to me that talking about death is too depressing.  so am i to face this alone?  pretend that it isn't happening?  stephen jenkinson compared the life altering experiences of death and birth, and that in our society we would never dream of telling a mother of a newborn to not alter her daily routine to accomodate the baby.  so why do we ask terminally ill humans to make like life is the same as before diagnosis?  that is part of what has been so fucked up for me.  i believe it is part of the reason why i've been paralyzed for the past two plus years.  i had no idea how to walk with death, let alone how to talk about death because i was supposed to continue on with my life as i knew it.  instead of grieving i was masking grief about dying with depression.

jenkinson said if the subject of death doesn't come up in daily conversation then that's what's abnormal.  i felt instant relief.  i've been given permission to look at this thing called death and talk about it, write about it, cry about it and just sit with it.  meanwhile it has breathed new life into me, and i feel forever changed.

i know i've just briefly touched on some of the more personally salient points from jenkinson's talk, and i hope to go more in depth in conversations with family and friends from here on out.  i am just 50 or so pages into his book die wise, and will likely continue to write about and talk about my life with death, not exclusively, but it is a part of me now.  i don't wish to die anytime soon.  but it's time to face the music, and talk the talk and walk the walk.  who fucking knows, maybe we can all learn something from this anomaly.

here's a band that my husband and i saw in kc this past spring.  she brought us both to tears as well as the dude i chatted with while waiting outside the bano for my husband at the end of the concert.  i said to the dude, "she is so powerful- i cried"  dude said, "i cried too", then my husband joined and he said "i teared up too".

thanks brittany from alabama shakes-