On his pain and “The Fault in our Stars”

Welcome to my journey from grief to life…I wrote this story 3 years ago and I am finally, at almost 5 years away from his tragic death, able to work with the words…to read them…to give voice to them.  Ours was a crazy, beautiful, imperfect love story that started in high school and ended decades later by no choice of our own.  I am choosing to honour him by telling our story and living and finding joy in now.  Join me.

PAIN! He was unable to communicate the extent of it with words – language was not his thing – but his eyes told the story and later his whole body would.  I was stunned by the language chosen by John Green to describe the PAIN of cancer (more on that in a bit).  My husband experienced PAIN that was so fierce that it was the 3rd partner in our marriage.  PAIN was the controlling, unrelentingly abusive spouse.

PAIN made even gentle touch impossible.   He was asked to rate his PAIN from 1 – 10 many times a day and at the beginning it was consistently 7 – 9. To understand the source of his PAIN knowing he had  “cancer” is not enough (unless maybe you have had cancer yourself). He had fractures up and down his spine and in his neck, and tumors in his bones, liver, lungs…  The “medical” description for his hip was that it was like “cottage cheese” or “mush”.  He was “very fragile” they told us.  Knowing this they still transferred him for tests almost every day and did not communicate with other areas of the hospital so he lived in a state of sheer terror all the time as he waited for the next move.  Every single time they moved him he had to explain that he might kick someone inadvertently because he had no control over his reflexes – I soon took over the role of communicating his kicking “problem” so that he could focus on breathing and managing the PAIN. When he arrived at the institution that was supposed to be the place that understood everything cancer, they still did not understand our third partner. 　The pain team came and talked to him so that they could set up a holistic plan for the management of his PAIN.  They said, “Please rate your PAIN from 1 – 10.” Then they sat innocently watching him as he processed how to respond.  Without making eye contact, he said, “Your scale doesn’t work for my PAIN.” I came to understand that his lack of eye contact was one of the things he did so that he could retain focus on controlling his PAIN. “Well, this is the scale, so you need to rate your pain from 1-10.”  “I can’t.” I was watching and listening and it was incomprehensible to me that a pain team would not be flexible enough to hear him.  Surely this was not the first time they had found their scale to be inadequate!  3 days later they would tell us that they had “never seen anything like what he was experiencing” and that they would not be able to help him.  So…maybe it was the first time?

In The Fault in Our Stars, John Green’s character Hazel describes her pain as “apocalyptic”.  Hazel says that she was, “…left on the shore with the waves washing over me, unable to drown.” He longed to “drown”. That much he told me. Hazel: “…the only solution was to try to unmake the world, to make it black and silent…to return to the moment before the Big Bang, in the beginning when there was the Word, and to live in that vacuous uncreated space alone with the Word.”  And more: “The pain was always there, pulling me inside myself, demanding to be felt.”  As an outsider, this part was so hard – when he “pulled…[into himself]”.  When he tried to go to the “moment before the Big Bang” he was alone in a space that had no room for me.  The PAIN robbed him of himself and robbed me of him.  I missed him while he was still alive.

Now:  It amazes me that I can read this story without tears…I am grateful that I wrote it when I did because memory sometimes eludes me…protection for living now.