In my career, I’ve ushered many children and young adults into death. As a doula of sorts, I have seen the many faces of grief and pain. Today was one of those days that made me pause and catch my breath- such was the vastness of the grief in that room. The details of the patient are familiar. Inoperable, incurable brain tumor. Nothing more to do. The cancer has spread and this is the end. Those words come easily to me. I’ve said them so many times. What struck me today was while waiting to pay for the diet coke to get me through until 8pm, I saw the patients father eating a cheeseburger and fries in the hospital cafeteria.
Yesterday, he was crying in the emergency room because he knew the trajectory of this disease and how they were now living the final chapter. They knew this from online searches and support groups because this brain tumor ends the same way for 99% of patients. After radiation, it’s possible to get a honeymoon period of function and activity. But inevitably at the 6-8 month mark, the child will start to decline neurologically. So, though his son was playing soccer last week, he now was unable to feel his legs, urinate or move his neck without pain. All in the span of one week. We stood in the emergency room reviewing the plan to start steroids to try to get some pain relief and perhaps some function back by controlling the tumors inflammation. This man, my age exactly with a son my daughters age exactly, stood in front of me trying unsuccessfully to hold back his tears. Wearing a baseball cap and Oakleys with eyes full of sleeplessness- he asked me about high dose vitamin C as a potential cure.
“There’s nothing to lose, right? Why not try it? I’ll do anything. Anything” he pleaded.
I was reminded of my mentors words “hope is expensive”. I explained how we don’t use high dose vitamin C since it hasn’t proven beneficial in any way but if that’s the road they wish to take we can try to connect them to people who have tried it. I explained how this beast of a tumor destroys the brain in this exact way and no matter what we do for his son it would be doing things to him, not for him.
They agreed to palliative steroids and morphine. Less than 12 hours later, his son went into respiratory distress and ended up on a ventilator.
The following morning when I saw them in the ICU, things were stable. No worse. No better. The father didn’t mention vitamin C or any other treatment. They brought their other children to say goodbye. Now we were just waiting to see if the steroids would take some effect and let him come off the ventilator. It was unlikely which meant they would have to make the agonizing choice to withdraw care and let their son go peacefully.
There was no rush to decide, as it wasn’t enough time yet to determine the steroids efficacy. So the day was devoted to being with their son and watching him fade or maybe bounce back temporarily, knowing ultimately he would succumb to the disease in the next week or so.
Hours later I saw the father in the cafeteria. He didn’t see me as I watched him eat his burger with a family friend. They looked like two guys at a bar watching the game. I understood something about grief at that moment- it will march on no matter what. But so does life. You still have to eat dinner. You still have to go to the bathroom. You still have to pay your electricity bill. You still have to parent your other children.
Watching him eat his dinner showed me that life and grief happen simultaneously. He didn’t pause his grief to eat, he ate with the grief. Grief doesn’t cancel out life, it exists side by side- often competing for time. Even when you want to just drown in the sadness, life creeps back in to remind you to pack lunch for the kids. Even if you want to just have a moment of carefree joy- grief creeps back in and sucker punches you in the face. I think the path of bereavement is learning how to devote time to both life and grief without feeling guilty if you spend too much time devoted to one.
I watched this father and had to hold back my own tears. I know he’ll have to learn to live in grief but not exclusively in grief. He’ll learn that grief loves to surprise people when they least expect it. Life does too.
He finished his dinner and got up to leave when our eyes met. I sheepishly smiled and he nodded acknowledgment. He turned around and headed back to his son. For those few moments, there was a little more life than grief.