Paperwork: Powerlessness within Privilege

It’s been a busy few weeks for us.  Lynne, my roommate, who has Huntington’s Disease, has needed extra time and attention dealing with some issues in the house.   A disease like Huntington’s tangles the medical and the spiritual in a giant knot.  If we’re lucky, it remains a loose tangle, like too much yarn coming out of a knitting bag, and doesn’t tighten up like one of those necklace chains which take forever to even pull apart with a pair of tweezers.

So we were fortunate, running from doctor to doctor, bringing in some new and effective medication, working out some coping techniques.  And why were we able to do this, so quickly, living, as we do, without any real income?  It’s because we live in Vermont, that terrifying socialist nightmare that the new Congress wants to avoid at all costs.  The amount of money they are willing to spend to fight it off shows how much money they stand to lose by taking profiteering out of situations like ours.

But nevermind that now.  What’s done is done.  And what I want to share is how it felt to deal with the increased paperwork that is what we pay for living in this paradise of medical socialism.

It’s scary.

It’s complicated.

I was never good at math, and if I didn’t have Ritalin, all the same terrors would still apply.  Mistakes in simple arithmetic.  Copying the wrong number.  Misinterpreting directions, if I even managed to read through them at all.  Even finding the records, from taxes and banks and savings accounts, from which the information must be gathered.

Happily, Lynne’s family gathered around.  Her sister the accountant came over from Maine.  Her mother hosted a paperwork work party where her senior living community more often sits for Bingo or Scrabble or bridge.  Her local sister and brother-in-law hosted Lynne in their beautiful country home, giving both of us some time apart, to unwind and rebuild confidence in her capacities.

But in the end, it came down to me, filling in the forms to ask Vermont to fund me as Lynne’s Essential Person, a friend, relative or spouse who is cheaper than a nursing home for someone who needs daily assistance. My fear is that, if it doesn’t work, I’ll be ground into dust running back and forth between a retail job for cash flow, pick-up work in ministry for my soul, and this lava flow of housework that appears as we age and grow infirm, first Lynne and then myself (hopefully in that order).  Best of all, said sister and one of her daughters came up and did some of the cleaning we keep putting off up here!

But we know how lucky we are to live here, where the state chooses to maintain families and households — defined however our hearts choose and our luck determines — for as long as our bodies can carry our spirits.

And so, my prayer begins with thanks.

Yes, it’s scary to stand financially naked, but the state has made a firm commitment to keep us clothed and sheltered once we display our frailty.

I give thanks also for the friendly professionals who staff the part of our government that supports families, elders, children and the disabled.  They don’t just ask us for our information, they ask us how we’re doing.  They send letters asking us to call and make corrections, when we make mistakes on our paperwork.  They’ve bridged me over with health care while I sort out my math.

Yes, sometimes they’ve called to say I’ve asked for too much.  But they always explain it clearly, and it’s never held against me.  It doesn’t take me out of the system, as a late payment to a creditor would do.

I give thanks for the wonderful filing tools I’ve developed to keep this all in one place: the plastic file folders from Staples, with separate swing-out pocket sheets where each form — photocopied for future reference — sits readily available; the binders that come from second-hand stores for less than the cost of a parking meter.  I give thanks that Lynne remains hardwired for clear, simple organization, casting an aura of clarity through my living space, modeling what my mind can become if I remember to take my daily Ritalin.

I give thanks for the health center nurse who spent half an hour sorting out the funding and resupply of the anti-nausea medication which is calming Lynne’s stomach and helping us fight Huntington’s pernicious weight loss.

I give thanks for the medical center admin staffs, who are deferring all billing while Medicaid sorts out whatever is holding up so many cards.

I give thanks for a place where neighbors, regardless of political beliefs, acknowledge that life is better when we look out for each other, n our streets and in our government.

May everyone be so blessed.

And may our funding come through, so I can devote myself to this little life we’ve chosen here, on the shores of Lake Champlain.

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