Empathy and Trauma, Part Two

Children’s Hospitals & Me: Part Two

It’s been a little over two years since I wrote the last post on my experiences at the children’s hospital. I was talking to a friend yesterday about how I felt that maybe it would be a good idea to write a followup now that I’ve been there for a few years, doing my thing every week.

In my role as a hospital volunteer, I play video games as a form of ‘play therapy’ with kids who are unable to leave their rooms for various reasons. Many of the friends that I meet and work with are either ‘frequent fliers’ to the hospital or they’re there for a long time — my longest was just under two years in one stay before they could go home.

What Happens After

When an inpatient is discharged from the hospital, many go home. Some do not have a home to go to. Fewer still don’t leave at all, but that is a true rarity; many people at the end of their life are discharged so that they can pass in comfort at home or in hospice care. When someone passes inside the hospital walls, a staff-wide email goes out with basic information about the individual, though it’s not uncommon for there to be months between these emails.

As a staff member of the hospital (even though I’m a volunteer), I’m held by the same confidentiality and privacy rules as the rest of the staff, which essentially boils down to the following:

When someone leaves the hospital, they leave your consciousness.

Unless it is a required aspect of our role, we are forbidden from retaining contact information or any lines of communication with a patient or family of a patient. This is important (and these rules are written for very good reasons), but it leaves you with a question:

What happened to them?

The Pain of Never Knowing

For the vast majority of the people that I work with every week, when they are discharged, that is the last I hear. The only time I hear otherwise is if the family speaks to the media, publishes something for the world to see (like on YouTube or something similar), or reaches back out to the hospital with news. The chances of me hearing about any of these are also astronomically low; what happens most often is that the staff members I work with reach out to me with a “hey, I heard from so-and-so’s family, I thought you might want to know”.

Sometimes I follow up myself when I can; I remember stopping by my two-year patient’s room and finding it empty, only for the nurse to give me a pained look and let me know they had been moved to the ICU (intensive care unit) overnight. This particular story ends on a positive note; they were discharged shortly after this stay, healthy and in good spirits, holding the new record for the longest full-time resident of the ward. In the moment, though, there were a lot of questions. Is my friend alive? Will they leave the ICU? Is this the end?

In my role, I work with a lot of folks in varying stages of different cancers and stem cell therapies. I’ve seen first-hand the horror that chemotherapy can wreak on a fragile body. In an adult, the effects of cancer are devastating. In a child, the fact that cells are replicating more rapidly due to normal growth means the cancer spreads that much faster. Though children often respond to treatment better than adults, it’s not a panacea; twice now I have looked a patient in the eye when leaving their room, both of us understanding without words that it is the last time we will see each other.

Unknown Loss

Like the wives who stared out at the sea, wondering if their husbands would ever return back from a treacherous and roiling sea, so too do I wonder sometimes what has become of the friends I’ve made throughout my time at the hospital.

The ones I wave goodbye to when they discharge, only to see them again in a month.

The ones that are determined to survive, despite the hand that they’ve been dealt.

The ones who stare listlessly at the window or the screen, refusing to engage while they wallow in their thoughts.

The ones who feel trapped in the four walls that surround them, each thought skewered by the occasional screaming of the infusion pump.

The ones I entertain and distract while their parents have frantic whispered conversations on the phone.

The parents and grandparents and guardians who put on a brave face.

The ones who tell me awful jokes.

The ones who feel like they don’t belong.¹

The ones who tell me secrets.

The ones who don’t talk at all.

Closing

Like the original post, this doesn’t really have a closing. It’s more of a meandering collection of thoughts from the past two years that have been bouncing around my head.

Everyone I meet is special, and just sometimes, I wish I knew the rest of their story… if only to assuage my own curiosity. Perhaps one day I will know about a name or two, but for most of them, they slip through my fingers like so many grains of sand. For every bunch that I’ll never hear from again, a few grains stick to my skin; I treasure what I am able to hold.

I just wish I could hold more.