Hospital talk

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The hospital is a world unto itself.  It has its own particular time zone (aka "hospital time") and language (aka "medical jargon).    Why do you think so many soap operas are set in hospitals?  Lotta drama happening there.  When Ellie was first diagnosed at 20 months, I spent 2 weeks with her in the hospital only leaving to shower at Ronald McDonald House down the street.  My superb friend Betsy C. warned me that it would feel strange going back out into the 'real' world after being so completely immersed in the hospital.  I recall at one point taking a walk around the University of Chicago campus where the hospital was.  It was a beautiful fall day and there were all these people out

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enjoying the unexpectedly beautiful fall day.  Didn't they know my life was suddenly, inexplicably altered forever?  How could anyone just be walking their dog when my life had changed so?  It was definitely culture shock trying to re-emerge from the hospital back into a day-to-day routine.  

Suddenly being back home means being responsible for all aspects of medical attention the hospital was previously

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covering.  Not only that but getting used to being around a lot fewer people takes some adjustment, particularly since Ellie may or may not be feeling up for many activities.  Now that I understand the post-hospital let down, I am better able to prepare myself for it physically (by doing all the laundry, cooking, cleaning before her return) and psychologically by calling a friend or making plans for someone to visit us at home.   

Then there is the adjustment from telling hospital personnel every detail of a physical condition to telling a neighbor

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the generalities.  Realizing that not everyone wants to know what a ventricle is.  Or an astrocyte cell.  Or any number of other things.  How do you go back to discussing the weather and its implications when it feels as if something so much bigger is happening? 

Sometimes, many times, it is hard to know how much to talk about all of this hospital/medical stuff.  There is the perspective of ignoring it, pretending like it never happened.  But then it has been such a big part of our experience thus far, it can be

[caption id="attachment_2117" align="alignright" width="300" caption="Newborn Ellie (then known as "Betsi".)"][/caption]

bothersome to ignore it too.   Sometimes the listener does not know how to respond when I speak of brain tumors or shunts or brain surgery or MRIs.  Should they be sympathetic, nonchalant, ignore it?  It's the people who respond by seeming downright uncomfortable that then I somehow talk about it even more.  I will think, "OK, they are uncomfortable, don't talk

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about brain tumors any more."  Which on a normal day is easy to do, but once I tell myself that, the only thing coming outta my mouth is more about brain tumors.  Then I'll think, "Seriously, quit talking about brain tumors."  And again, the next thing outta mouth is something medical.  Once I told Ben's art teacher that his sister had a brain tumor.  And she  just responded with an, "OK" and then continued talking as if she heard about somebody having a brain tumor every day of the week.  No biggie.  It was refreshing just to be able to say it  and not feel as if I had to comfort or reassure the listener that we are not a brain tumor, but are a family thriving.  And it made me feel a little bit less real world culture shock.