The View from Mattie’s Pillow

I’m sitting in Ed’s chair by the woodstove, listening to it ticking as the fire dies down; the Christmas tree is lit again.  The little spruce with the twist in the trunk that we cut from behind the run-in shed on Christmas Eve is still green and drawing water in its five gallon bucket filled with rocks.  I’m glad, for I cut my holiday season short for the trip to New Jersey.   Now, with just five days to go before the first class of spring semester, I’m grateful for the tree, the ornaments, the lights, for they’re letting me feel celebratory for a few days more.  Besides, in my family, growing up, we had a tradition that the tree stayed up till my mother’s birthday, January 18.

The time in New Jersey gave me lots to think about.  At first, the situation seemed desperate—my brave and stoic brother needed someone there throughout the day while he was/is on bedrest.  If he dropped the phone, he wouldn’t be able to call out in an emergency; if he dropped the remote—as he did when I visited in the summer—he could fall asleep watching soccer and wake up watching a telenovella.  And, worse, if no one were set up to come in during the day after I left,  how would he eat, stay hydrated, deal with the personal but essential tasks that take up a good part of his caregiving.  But, day by day, there was good news until I was able to leave knowing that he has care and will soon be in rehab to get back in shape to be in his chair—back to normal for him.

My brother has been a quadriplegic for more than twenty years.  If his accident happened now, he might have more use of his arms than he does.  With stem cell research and other newer procedures, young people facing a C-5/C-6 injury can retain more function than he was able to at the time.  But he’s done well, stayed independent, gotten a law degree, played Quad Rugby (Murderball)—in short, I didn’t worry about him until this pressure sore developed.   But this has been a wake-up call for all of us.

He could be anyone—we are all vulnerable, as scenes of devastation in Haiti and other places in the world remind us.  His vulnerability is part of his life’s normalcy—in his chair he can cook, drive, bathe, go to restaurants and malls—do most of the things anyone else can do, except get himself into and out of bed.  Being around him has reminded me not only of how much I love him, my baby brother who I cared for as a child, but of how valuable each of our lives is and what we can mean to each other.

Remarkable things happened.  I met caregivers and social workers who made extra efforts to help his situation get resolved.  I met a woman online who advocates for those in the quad community, and who called my brother just to chat—and I heard him laugh and knew that his spirits were lifting and that he would heal.  I met a remarkable group of Quakers at Cropwell Friends Meeting, who felt led to form a group to come visit my brother and just chat and check in.  There was the woman in the coffee shop who remembered me when I came in for a break from the apartment, the lady at Smoothie King who kept my debit card for three days when I absent-mindedly left it on the counter, the cousin of a friend who called and gave advice even though she didn’t live near enough to come by.  It seems like community can happen anywhere, I now see.

But here’s the thing—while my brother’s is an extreme case, it’s an example of how much the system that seems to be in place—health care and beyond—is  broken and stretched to the point of dysfunction, underfunded and understaffed.  When my brother knew the woman living with him would be moving out and that I could come for a couple of weeks to help out, it was Thanksgiving. He began calling and filling out paperwork and getting visits from social workers.  But by two days after Christmas, he was still being told he would have a 4-6 week wait.  Those who told him that were polite, but clearly overworked and could offer no suggestions to help.  They would see me there and assume that I would fill in.

All this while the “debate” on health care rolls on in DC.  But what is there to debate?  To me, now, the question is simple—how do we care for those among us who are least able to care for themselves?   And how do we care for each other and provide for the well-being of all in our community or nation, knowing that any of us could suddenly have the level of need my brother has or more?

I’m slowly recovering from jet lag and the emotional stress of the trip.   Morning and night, I’m out in the corral while Mattie and Sam are chewing hay, leaning against their shaggy shoulders, breathing in their earthy smell.   I’m glad to breathe the sharp cold air and see the orange light in the southern sky spread into day.

I tend to be an optimist.  I believe that it’s worth the effort it took to bring some things together for my brother in order to restore him to a normal, engaged life.  I’ll continue to work with him on this.  I also believe that in a good society, we would all want this for all of us.

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