Of hospitals and goodbyes, the coldness of medicine and the warmth of human contact

You wake up early, and realize you’re over on the other side of bed, curled up in anticipation of finding someone who isn’t there.  You don’t spend much time at home; a quick shower and a few minutes to check emails, and you’re out the door.  Picking out the right clothes is the only thing you do pay attention to; you’ll need to show up at work later today, so you make sure the outfit is professional looking.

The drive to the hospital is one you’ve done so often it’s become routine.  You park and hustle in along with the many nurses and other employees starting their shifts.   A quick stop to get a large coffee, and you’re up in the Trauma Level Care area.    This isn’t the normal part of the hospital.  There’s nothing ordinary or reassuring about it; it’s clear from the locked door to the low nurse to patient ratio that anyone in this area has major issues.

The 12 rooms are arranged in a circle around a command center, and you say good morning to staff as you pull open the curtain and walk into his room.  The first thing you do is check to see if he seems present.  You walk in and start talking.  You’ve read that even in a coma, people can hear and are aware of what’s being said in their presence.  This is a good morning; his eyes follow you and he squeezes your hand.  Next you check the white board in the room to see who his nurse is for the day.  The nurse is your life line, and the closest thing to an advocate you and he have.

The medical group you’re waiting for is on the other side of the room, and the nurse reassures you they haven’t yet visited his room.  That’s good news.  You’ve joked with staff that each of the doctor groups should have a symbol or insignia on the back of their white coats to identify them: the hospitalists, the gastric team, the renal doctors.  It’s not really a joke.

You turn on the eBook, drink coffee, and wait.  It’s hard to concentrate, but you’ve learned to pretend to look normal and composed when inside you’re screaming and yelling and crying.   Finally, the team approaches your door.  Back when all this first started you sat quiet and tried to listen when each medical group approached. No one; not the interns, not the lead doctor, bothered to include you until one day a substituting doctor asked if you wanted to listen in.  Now you hop up from your chair and join the group.

So, you sit and wait for the doctors to make their way to his room.  The group consists of 5 – 7 people.  Some clutch papers with patient information, one pushes a laptop mounted onto a cart.  The visit starts with the recitation about the patient; age, gender, a dry recital of diagnosis and current status.  There’s not much else.  The lead doctor comes in and checks a few things.  The main students walk in with him; the doctor asks a few questions of the students.   No one pays attention to you, it’s like you’re another piece of furniture.  A few days ago you hung up pictures of the two of you.  The nursing staff all made nice comments about the pictures; the doctors mostly ignored them.

You desperately want these people to realize that your husband is a human being, not just some sick body lying in a bed.  He’s a sentimental man who loves romantic comedies, a fairly good Thai cook, the kind of guy who has to stop to pet every dog he sees.  You get that the focus of doctors is diagnosis and treatment, but you really, really wish that there would be just the least little bit of compassion shown to the two of you.

Over the last few days, the amount of time spent in your doorway has decreased, and you know what that means; he’s not doing well.  Failing patients are not good teaching examples.  The other big sign is in how the younger student doctors deal with you.  They look spooked, no longer making eye contact with you, looking down and mumbling.  Clearly they think he’s dying and don’t know what to do, how to act.

Today is a special day; it’s your wedding anniversary.  You’re fairly sure it will be your last, but there’s still hope, a faint chance of making it through, and you’re not going to give up.  In one the greatest gifts you will ever receive, he’s focused and aware this morning.   You start talking to him, and amazingly enough he actually seems to be following your conversation and trying to talk to you.  Of course, with the tube down his throat he can’t talk, but you do your best to fill both sides of the conversation.  You remind him about the anniversary, and he nods and holds tightly to your hand. You tell him you love him and that he’ll make it through this.  He looks at you lovingly, but sadly, and squeezes your hand.   You talk a little more with him, and say those things you say to the most important person in your life.  You make sure he knows that you know all that he wants to say but can’t.  You try hard to smile and seem positive, but you can’t help the tears that start sliding down your face.  He matches you on that.

This whole wonderful encounter lasts about 15 minutes, and then he slides back into the realm where he’s spent most of the last month, not really present, not focusing, not being aware.  That was the last time you had the feeling he was there; it was your goodbye.

It’s a year later.  He didn’t make it; you became a widow 6 days later.   Today is your wedding anniversary, only this year it’s a remembrance instead of a celebration.

You started writing this post to talk about the lack of humaneness and empathy in the American medical system; about how terrible and frightening and lonely it was to go through that last month, and the difficulty in getting information and finding out what was happening.  You wanted to provide people who have never gone through an experience like this a window into what it’s like to be the main support of a critically ill patient.  You envisioned a political piece on the need to include family more in medical treatment.

Somehow, though, the post got away from you, and what started out to be a trenchant critique of Western medicine ended up being a remembrance of how your husband said goodbye to you.  And, you know what, that’s actually a better way to mark what would have been your 8th wedding anniversary.

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Chief Brenda Johnson is my hero

I’ve never been a big fan of mysteries.  There’s a lot of creativity in characters and settings, but ultimately the mechanics of always having to solve a murder is limiting.  It’s a box, and not one big enough to hold my interest.  On the other hand, speculative fiction (science fiction and fantasy), can be anything so long as just one element doesn’t mesh with the current structure of reality as we know it.  It could be a straight-ahead coming of age novel except that the main characters have magical powers; or maybe a story about colonizers and cultural oppression, but it takes place on another planet.  There are no boundaries, which is why I’ve been hooked since I was 12.

Lately, though, I’ve been reading a lot of mysteries and watching crime shows on TV.  That same rigidity which once bored me now feels comforting and hopeful.   I know that by the end of book or episode all the questions will be answered.   That old lady found murdered in her apartment: turns out the landlord wanted to sell the building and she was the final hold out.  Neat, comforting, complete.

Real life doesn’t work that way.  Problems aren’t always solved, and the big terrible things that happen in our lives don’t get the kind of closure that’s found in a novel or TV show.  Stuff happens, for reasons we’ll never know or for no reason; and that’s all there is.

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It doesn’t sit well for those us who want those neatly tied packages.  Chief Brenda Johnson could find who committed the crime and get them to confess in 42 minutes.  I’m haunted by wondering if my husband guessed at how serious his health problems were and choose to ignore them; and if so, why.  I sit up nights asking myself how much awareness he had during that nightmare 6 weeks that went from getting a serious but hopeful diagnosis to dying.   I obsess over the details of our 8 years together looking for clues as to when his sickness started.  Sometimes I pretend that I can travel back in time to give a warning, but to do so I have to pinpoint the exact time; not too early, not too late.

None of it matters.  I’ll never know how much he was present at the end; or what he was really thinking as he got sicker and weaker; or why he put off seeing a doctor.  I’m not alone in this; none of us gets the satisfying all ends neatly tied off and prettily packaged answers we want.  Whether it’s trying to figure out why that great job interview didn’t result in an offer, or the best friend who suddenly becomes distant; no matter the situation, there is rarely the kind of satisfying final scene where everything is explained in a rational manner.  It just doesn’t happen.

This is why I’ve become such a fan of mysteries.  Because there’s always the denouement where everything is explained, and all the loose ends are fixed.   All the questions get answered, and the answers always make sense.  If only life worked that way.