The Organ Recital

When I was at my lower points of illness, when sitting up in the chair for a while was enough to send my heart rate thumping like I was swimming a mile, there were many, many points where I was frustrated with how weak my body was.  When I was twelve, when I was eighteen, when I was twenty-one, when I was twenty-five, all flares had moments where I felt betrayed by my body--someone that age wasn't supposed to be like this.  

I found at different aspects of recovery from each flare, each surgical step, that later I could sit and hear the symmetry of frustrations from an elderly companion, someone recognizing that their body simply wasn't what it used to be.  A significant difference between my companion and myself was that it was possible and even likely that their body wasn't going to get back to the place it once was ever again while for me there was a lot of unknowns to sift through yet.  Even though I had a different level of optimism about my day-to-day condition, there were no guarantees, but I could still empathize with what we were both feeling in the moment.  

I still remember those places, even now when I'm in the best health I have been in ages.  And I remember the feeling of some of those conversations, to talk with someone that understood.  These tended to happen frequently at church, but also with some older family members.  We were talking frankly about our bodies--frank in our realities and honest in our complaints.  We both gave and took space.  We talked about poop; we talked about aches; we talked about stiffness; we talked about how much endurance we had for "normal" tasks; we talked about ways we had to adapt those tasks; we talked about how not everyone would allow us to talk about these things, interrupting with well-meant comments that shut down their concerns without much empathy.  

Once, I left one of these conversations and a family member asked me how the organ recital was.  When I asked for clarification, they said something along the lines of "oh, you know, my back, my stomach, my kidneys, my eyes...an organ recital."  And, yes, I think that it's an apt name for that kind of conversation.  

And thinking about it, I've experienced the organ recital in multiple ways:

1. As a child, confused but politely listening
2. As an older child, starting to get the idea that some of these things were not normally talked about in other places, but I had been in the hospital and sort of understood that frustration.
3. Acknowledging that this wasn't always a socially acceptable to continue on for long, the incorrect yet also honest answer to "how are you?" but listening politely anyway.
4. Needing to make my own organ recital because that was what was real to me when I was really sick and I fully understood the need for freedom to discuss it and feel heard.
5. Responding with empathy statements, remembering when that need was urgent and allowing them that space, regardless of social acceptability.  
6. Working in a hospital, it is FAR more acceptable to talk about these things, but that doesn't mean that everyone is practiced at it.  Sometimes, I help guide the speaker on how to talk about it with questions and encouraging their own expression.  Sometimes, I briefly mention that I have my own chronic illness, just so they don't have to re-lay the basic groundwork and can jump right to their specifics.  

Having my own experiences with a chronic illness helps me understand the weight of a new, devastating diagnosis.  I won't say that I know all of what their path has in front of them, but I know what it is to have that sense of security in tomorrow shattered.  Having my own experiences in the hospital helps me relate to patients that there currently.  I won't say that I understand their full circumstances and context, but I know enough to relate to the uncertainty and disruption in their lives.  Having a chronic illness has helped me identify with people who are aging, persons who are seeing their bodies slow.  I won't say that it gives me a full understanding, but there is still some commonality of understanding.  

The sound is similar--a genre that I know--but everyone's song is wholly their own.  The real trick is finding a space to play.  As I'm getting ready for work, I sometimes find myself looking forward to hearing another organ recital, partly because I need to know that information to help their care but also that I want to ensure that they have space where they might need it or where I could create it on their behalf.  It's an art.  And particularly with COVID restrictions on visitors, I get the feeling that patients are hungry for that space.  It can be exhausting but also very rewarding.  

The hospital creates a place where we can circumvent the normal taboo.  Advanced age creates a space, too, where we can more readily accept a dump of personal information, be it body mechanical or body emotional.  There are reasons not to talk about certain topics, such as a lack of consent, but a social taboo isn't a good enough reason to refrain from saying things that need to be said.  There's a greater need for these authentic spaces, to create them and to exist in them.  An organ recital can be a holy thing.  Connecting with other people in an authentic space, that's worth far more than preserving certain social rules.