la belle indifference

Yesterday I moved my brother’s meager hospital belongings into a different room for the fourth time since he checked into a rehab and skilled nursing facility after a massive stroke in October.  They seem to schlep patients around there like pawns, but this time we carried his things to the wing they call custodial, where elderly or disabled people are shuffled off when their mounting needs can no longer be met at home.  Most of these residents live their final years there, rarely seeing a visitor.  As my brother is only 62, the enormous sadness of it all settled on my 87-year-old mom and me like a shroud.  I found myself sitting in the public bathroom crying like a baby, trying to pull myself together. Writing about it now brings me to tears all over again. 

My brother, on the other hand, took it all in stride.  In fact, he has patiently endured an incredible amount of suffering these past months—left-side paralysis, excruciating nerve pain, invasive stomach-wrenching bacterial infections, painful catheters, careless and insensitive attendants, and mushy meat-like substances served as meals, this as a vegetarian—for starters.  Yet through it all, even on his sickest days, he has accepted whatever came with few complaints.  

dog therapy

​It’s hard to imagine that before this stroke, even the slightest change in his routine could send this guy into high anxiety.  Last week a neurologist explained why.  The stroke’s effect on my brother’s brain has left him with a condition they call “La Belle Indifference,” which lacks a clear definition, but is described by various experts with words like a naïve lack of emotion…inappropriate calmness…unconcern with symptoms.  In general, it means that my brother is far less concerned with his daily condition than the rest of us—there are times he can almost seem indifferent to it all. 

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La Belle means the beautiful, and that is the paradox.

​La Belle means the beautiful and that is the paradox.  From the start I have tried to drive my brother to work at his rehabilitation, to do the arduous therapy needed to enable him to come home.  But because he doesn’t connect the daily grind with his future, it makes no sense to him to endure the pain that therapy requires.  The neurologist told us we shouldn’t even try to get him to connect dots he cannot grasp.   I have to say that beautiful sure doesn't describe the way this condition sabotages his recovery.  And yet, I have seen beauty.

It was beautiful when a couple of his former nurses came by just to hang out and assure him they would be back to visit.  He has endeared himself to them and others simply because he connects so well with the present moment.  He knows janitors, aides, therapists, nurses and doctors well enough to ask about their children or their dogs by name, something he never forgets to do, even in his sickest moments.  He pats them on the hand, asks to see pictures on their phones, encourages them in their struggles and makes them laugh with his uncanny wit. This altered state, as his wife calls it, is beautiful because he has no fear for his future and no bitterness about the cards he’s been dealt.  He seems blissfully unaware of how bad things really are most of the time, and this indifference is a grace, a beautiful grace.

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​to rest means to learn to sit with the now, and no one does that better than my brother.  

I’ve thought a lot about this as I’ve tried to press into my word for the year--rest.  As I wrote in my last blog, to rest means to learn to sit with the now, and no one does that better than my brother.  Because he cannot connect the present to the future, he has an almost hyper-sensitivity to the now.  He sees and hears everything, and is so keenly in tune with people’s emotional needs as a result, that he continually asks discerning questions so he can offer meaningful encouragement.  Today I tried to wash his hair, insisting he get into his wheelchair so we could go to the sink.  After a harrowing ordeal that nearly left him prostrate on the floor, I reluctantly let the nurse put him back to bed, dirty hair and all.  As I left a little a bit later, he took my hand and reassured me, saying: “That was a valiant effort, Tricia.”  

dear friends praying for him

I read of one journalist whose husband demonstrated La Belle Indifference in his final weeks, and she described her experience with these words: “It is a phenomenon of naive or inappropriate lack of concern about one’s illness or disability, also called a conversion disorder.  I call it heaven.”
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I get that now.  La Belle Indifference—the beautiful indifference—sitting in the now—rest.  I still have a lot to learn, but I know someone who can teach me.