Thursday, August 26, 2010

Here's the thing

Just after getting everyone to bed, my own routine tasks completed for the night, lights out in the interior of my parents' camp, I left my bedroom for a moment and the view through the big glass windows in the living room caught my eye. Through these, the big expanse of the lake is visible, daubed out in two places by trees, but still, the reverse shadow of the moon fell across the lake--that is, light draped a sleeve along the dark blue shadows of water, mountains, sky. Behind the clouds, the moon, backlit.

This is our next to last night here before returning home. Tonight is cool and already the trees are beginning to turn colors in tufts. I am glad of everything we've been able to do--although this is the first year Robert has not gone in the lake. There is a staircase down to the dock and another set of stairs into the lake, much narrower. And his weight and size exceed my capacity, and even Roger's, to get him in. He has sat on the dock in his blue Tumbleform chair and seemed very happy with it, though.

I keep pressing up against the margin of the possible.

This is also the summer of the home lifter. The lift looks like this: a beige pillar at one end of two long beige metal bars with small wheels that run parallel to the floor. From the pillar dangles a large beam that sprouts multiple hooks. To these hooks attach the straps on the blue sling, and the sling holds Robert while I press a lever that operates a pneumatic lift. Up and out of one seating situation and into others. Or into bed.

I've been able to see all of these things coming at me, but they've been in the distance, blots on the horizon.

Even so, I feel accomplished after a week of this on my own, after Roger left for work last weekend. Robert's care is consuming, and the tasks, combined with ensuring that he actually has a vacation and fun, burn up the days. I just set my own thoughts and feelings aside. This is a way of blanking out the mind, and, sometimes, letting my mind rest is just ok. I don't know that it's like letting a field lie fallow, but after a while, letting tasks and email and obligations spin slowly to a stop feels right.

At the margin of the possible is a whole lot of durable medical equipment. And that's what I've been struggling with over the course of this two week vacation. The wheelchair we've been waiting on since November (part of this is, indeed, my fault, I will admit), coaxing along an order for a bath chair that has been hanging, unfinished, for close to a month (and I still don't know if it's actually been ordered yet), taking matters into my own hands with what is called a handicapped stroller that has suffered multiple problems.

DME puzzles me. The insurance company pays the lion's share of the wheelchair, but nothing at all for the bath chair (cleanliness is outside the purview of medicine, apparently), nor anything for this 'stroller.' Instead, I'm using Robert's care budget from the state, from which I also request funds for his after school care and his aide for that program, as well as other personal care items that insurance doesn't cover. The care budget is generous, but Robert's costs are high. And when I spend nearly $5,000 of this allowance for a stroller so he has some kind of mobility device while we wait endlessly for this wheelchair order to work itself out, yes, I do expect it to function properly. I don't expect cheap plastic straps to break, making something virtually useless, or that the seat will not come off so it can be folded, as advertised.

I don't know whether I am in the right or in the wrong when I insist a bath chair must be sent back to the manufacturer (even though bath chairs are not returnable) because its features do not operate as advertised on the website--because the size large chair is structured differently than the small and medium chairs (and yet the manufacturer posts a photo of the medium-sized chair and its accompanying copy under the description of what is supposed to be the large chair). Or whether I should be frustrated because when asked to pay $1,100 for a bath chair that is not returnable, I have to rely on a single photo and make my decision without a clear sense of how the equipment actually operates. Am I living in the 21st century or not? Video embeds on the website, would that be possible? Multiple photo views? When I buy an $80 dress from J.Crew, I have a lot more information about it than this bath chair.

I have never felt more American than I do complaining about durable medical equipment. Never more the consumer. Never more sure I should have good sales support and customer service. And yet, and I don't know if this is some kind of puritanical guilt at my own impulse to get my money's worth (or perhaps the Puritans were experts at wringing a dollar, I don't know), if I imagine this out of the corner of my mind--but I keep wondering if some of the people I deal with think that I should just be grateful to have this equipment, regardless.

Here's the thing. I'm not as grateful as I should be. Grateful, yes, for the money to purchase these things. But not grateful for the costs--some of this stuff is marked up 150 to 200 percent. (And, yes, I do know about, but they don't take third party billing).

Alas. To be grateful. The people in the DME catalogues always look grateful. The land of a thousand bath chairs, and which one is right for your child? Don't make a mistake, because no one's going to take it back if you do. Or if the stander isn't right, or the walker. Step right up and spend your money.

I want to be grateful. Pressed up against the margin of possibility, I am grateful for the adapted van, for the lake, for the time here. For the relatives I was able to see, for the ADA code that makes even the most routine things possible, like going to the grocery store or a museum or traversing the street. Grateful for a child who endures the sling and lift with good-hearted patience and even finds it fun. Grateful--an emotion ephemeral and reflective, like light glittering on the surface of water.


Elizabeth said...

THIS is me: "I just set my own thoughts and feelings aside. This is a way of blanking out the mind, and, sometimes, letting my mind rest is just ok."

I have nothing to add, here, but my similar thoughts, a mirror, actually, which isn't much help but it sure does sparkle back at you and show the truth.

Leightongirl said...

And I'm leaning in, over Elizabeth's shoulder, right there with you.

Maggie May said...

what a push and pull it is, to be grateful, to see what is wrong or unfair or lacking and then still to see what is good and right and whole.

Carlen Arnett said...

I don't know how you do it, Jeneva: manage to write something at once so intimate and original, and yet that feels somehow "known" to me. This is as satisfying as your posts always are, and brings me face-to-face with so much: the realities of a life lived with substantial disabilities, a mother's realities, tenderly but never sentimentally explored, the ways all our lives dovetail, whether we comfortably acknowledge that or not. Congratulations on another terrific post. You know you're launching yourself a career, don't you?

Lauren Y. said...

"I keep pressing up against the margin of the possible."

Jeneva, that is as gorgeous a line as I'll ever hope to write, or ever read.

Really, this post is big, and belongs someplace big, like the Wash. Post or NY Times Editorial page, or I don't know. But it is beautifully articulate, specific and universal, and spans the cutting edge of important & savvy advocating with no lapse into whininess.