When the medicine fails: be human.
I am learning more and more that I process things of great matter in latency. I don't become hysterical in the moment; I don't break down at the first sign of decay. It is a defense mechanism that has served me well over the years. It allows me to stay sharp, on-task, and quick when a provider has mere minutes to address months' worth of symptoms, questions, concerns...
Find me in a crisis. I will not shake and I will not fall into pieces. I will be calmer than an unassuming breeze. It is a great habit for "getting through." It is a terrible habit for "getting over."
I never know just how long to stay in the moment; meaning that I extend the hyper-vigilance beyond the confines of the situation. In clinic I do my own research (often too much), I write down my questions, I challenge theories about why, how, and what to do next. And that's not an inherently bad thing; it builds rapport with clinicians, moves the conversation beyond the basics, and bring me care that I feel more comfortable with. In short, being "in the moment" gives me some semblance of control in a part of my physical life that I have little to no ability to change.
But it is exhausting. The closest image I can paint is of a Disney hero: Hercules when his strength is drained or Tinker Bell when she drinks the poison. They become a shadow of themselves, exhausted once the magic has poured out of them.
Being so "on" often leads me to an almost certain emotional hangover the next day (akin to a Friday-night-watching of "Hook," then remembering that Robin Williams is still gone; then remembering that again when you first wake up the next morning).
It's all caused by a tricky little devil called possibility. It sneaks into clinic visits unsolicited and uninvited. It comes at the ends of "How are you doing?"s and "Oh, I hear you've been singing more!"s. It's after you confirm (individually) the exact dosages of all your medications, the last time you took them, and "are you currently sexually active?"s (which, spoiler alert, can either be the most embarrassing or depressing question you can start your visit with). But moving right along, let me be somewhat/ehh-ish/maybe/opaquely more clear.
My message to providers here is this; if it's not happening, don't bring it in the room.
I know that this seems totally antithetical to the idea of keeping the patient included and informed, but really it's not. Because the engaged, insightful patient learns. They research, they ask questions with words you didn't think they'd know, they bring up other patients of yours whom they've already connected with before meeting you, HIPPA be damned!! So if you come into the room and say, "It looks like this *might* be happening. We *may * have to do this" then let me stop you right there.
First, you used the word *might.* *Might* is a four letter word in the healthcare world. It is a drug all its own that causes either euphoric hope or engulfing fear. It is too bipolar. It is too broad. It is too inconclusive. Because when you tell me that a symptom I am having *might* be an effect of a specific cause what I hear is "well, we don't really know at all (full stop), but hey! We've got a lot of machines and a lot of syringes and you have pretty good insurance so we're gonna test this thing out of you somehow! PS. It could also be this terrible thing, but we really have no clue so try not to think about that."
I don't hear what you're intending. I don't hear "this has some clinical/historical/situational/etc. evidence of stemming from this known cause and we need to rule it out. That way we will have a better idea of what to target to make X effect stop happening."
No. I hear, "We don't know, but it could be the worst. So we should prepare you for the worst."
Now again, let me stop you right there. I'm a big believer in "under promise, over deliver." I have no problem with setting the bar low and then working up to an ideal solution. I do, however, have a problem with internalizing possibilities that are medically within the scope of the condition, but not realistically in the scope of my condition. For example; I did not know until recently that many people with hypertrophic cardiomyopathy need an open heart surgery at some point. It was always within the scope of the condition, but it was not (to my knowledge) in the scope of my condition. I can only say thank you to my providers for never bringing it up unnecessarily**.
**(I also credit my not-yet-working-for-the-Internet lack of searching the web prowess/initiative, but, what can ya do.)
I have a problem when providers lay out all the possible causes for whatever out-of-this-world symptom I am experiencing because they don't have enough information to form conclusive and mindful choices for the patient to chose from.
I think it boils down to the sweet, but bitter, balsamic-y reduction that patients don't like possibilities. We like options. What is the first thing you hear on TV shows or in films when a cancer patient is first diagnosed? It's not "Let's figure out how you got this cancer." or "Here's how all cancers, including ones that might not be yours, could possibly be treated!"
No. It's "Here are our options."
I acknowledge the tough balance a clinician must walk between giving too little and too much information. I sometimes feel that I come across as someone starved for details, statistics, something I can cling to, desperate to rationalize: that's not an invalid thought. But I harken back to the old cliché and, if I may, amend it: "Mindful ignorance is bliss." The clinician has a responsibility to be mindful of what the patient does and does not need to have an awareness of.
Bring me what I need to chose how to proceed. Bring me your personalized thoughts about my condition based on your knowledge of who I am and what my goals are for my quality of life. Because it is, after all, my life.
So, if it's not happening, please for the love of my sanity, don't bring it in the room. And if you yourself are without a clear direction, you don't know what the cause is and you don't know how you'll treat it, or there isn't anything conclusive so we have to try everything, I ask that you remember this:
When the medicine fails: be human.
Currently Listening To:"Both Sides Now" by Joni Mitchell, from Love Actually and Both Sides Now
True story: Every time I've pulled up on Stanford campus before an appointment in the last two weeks I've put this song on. If you think I'm exaggerating, you must be new to this blog in which case, go learn yourself some truths.
This song came on the millennial radar during the release of a film which will undoubtedly define our generation (ok, one of many: Mean Girls, 10 Things I Hate About You, The Notebook, etc. notwithstanding). But what film do you play during cuffing season with your girlfriends/gay friends/progressive self-actualized straight male friends? What film can you recite the open titles to the moment you see the airport arrivals gate come into view?
Love Actually is, all around. It's a film that captures the magic of the holiday season, the pain of heartbreak, the silliness of new and awkward relationships. The film is overall comic relief with two notable exceptions.
The first is that Liam Neeson's character loses his wife and becomes sole parent to step-son Sam (Thomas Sangster). Watching this now, it's so painfully, yet unintentionally (on the part of Writer/Director Richard Curtis), foreshadowing. Six years after the film was released Neeson's own wife, Natasha Richardson, would die in a skiing accident. If you'll allow me a brief tangent: Richardson was one of those actresses I fell in love with from a young age. She was everyone's ideal mom in The Parent Trap. She was like a Hollywood version (for those of us kids in '90s America) of what I imagine Princes Diana was for 90s British children. She was grace and tact combined into a performance that was so accessible, yet also simply made for the silver screen. Upon her death Neeson donated her organs and saved the lives of three people, so of course, her loss really does hit home.
So based on this initial set-up the father/step-son relationship in the film is nuanced and filled with the clumsiness of navigating single-parenthood. However, it is not the scene where this song comes from.
Instead we first hear "Both Sides Now"during its diegetic transition from score to source on Christmas Eve, inside the little brownstone owned by Harry (Alan Rickman) and Karen (Emma Thompson). In a bedroom not unlike an Ikea floor sample (but of a bit higher caliber) we see Karen, clad in drapey Eileen Fisher and minimal makeup (#lifegoals) alone in her bedroom. She has just been given Both Sides Now on CD and slips the disc into her boombox. Karen knows that Harry bought another gift, a gold heart necklace. Karen is not meant to be the recipient of that gift. She, instead, has only Joni.
I don't mean it to sound cold, but her loss is our gain. Thompson's performance here is so gut wrenching that I once had a friend (whose parents had cheated on each other before their eventual divorce) ask me to turn off the film during this scene because it was too painful.
Karen has just realized that Harry has been unfaithful. It doesn't matter at that time how far he has taken it or with whom. To Karen, her usually un-thoughtful partner has finally expressed himself, but for another woman. She wrings her hands; the children are in the next room so she mustn't shout. She cannot release a cry and thus implodes within. Unsure of what to do she straightens the bed covers, then abruptly stops, realizing the futility of it. She wipes her face, closes down, and dons a smile, reentering the Christmas celebrations in the next room.
Karen's disillusionment with her reality is almost too on-the-nose-ly similar to Mitchell's juxtaposition of what she(Mitchell) thought she knew and what she knows now. I don't feel like I need to contribute too much to the description of the song because the piece just does it for you. The full and note-by-note ascension of the violins, the sorrowful saxophone, the softly militant snare and bass cello. It is blues, through and through.
So why would I submit myself to listening to this navel-flipping song on route to each recent clinic visit? I'll let Joni take this one for me...
Rows and flows of angel hair And ice cream castles in the airAnd feather canyons everywhereI've looked at clouds that way
But now they only block the sun
They rain and snow on everyone
So many things I would have done
But clouds got in my way
I've looked at clouds from both sides now
From up and down and still somehow
It's cloud's illusions I recall
I really don't know clouds at all
Moons and Junes and ferries wheels
The dizzy dancing way you feel
As every fairy tale comes real
I've looked at love that way
But now it's just another show
You leave 'em laughing when you go
And if you care, don't let them know
Don't give yourself away
I've looked at love from both sides now
From give and take and still somehow
It's love's illusions I recall
I really don't know love at all
Tears and fears and feeling proud,
To say "I love you" right out loud
Dreams and schemes and circus crowds
I've looked at life that way
But now old friends they're acting strange
They shake their heads, they say I've changed
Well something's lost, but something's gained
In living every day.
I've looked at life from both sides now
From win and lose and still somehow
It's life's illusions I recall
I really don't know life at all
I've looked at life from both sides now From up and down, and still somehow It's life's illusions I recall I really don't know life at all
This time, I suggest watching the clip first, then listening to the full piece. The clip exists in the context of the score, whereas the song exists in a world all its own. Neither is better or worse, but the film was my first iteration. I suggest it be yours too.