#notaluxury: a real-world example

#notaluxury - a real-world example 09.17.15My good friend, Peggy Chenoweth, came up with the hashtag, #notaluxury, to unify social media posts about Medicare’s proposed coverage changes to lower limb prosthetics under a single concept. The idea is simple: a prosthesis allows you to perform basic that we all take for granted, none of which is a luxury. If you restrict timely access to appropriate clinical care and prosthetic components as the Medicare proposal would, even those basic activities become impossible for amputees to perform.

This past week, as I turned 46, I engaged in a project that illustrates the possibilities available to amputees with a well-fitting prosthesis. Max, Jackson and I ventured north to my parents’ home in Connecticut to help my dad stain the barn that acts as a garage, tool shed and storage area behind his home.

Applying liquid to wood doesn’t require high-performance components; only a well-fitting, comfortable prosthesis capable of supporting someone safely for a full 5-8 hours. In fact, much of that time, you’re simply standing in place on the ground or on a ladder slapping pewter grey stain onto pine planks. While that doesn’t sound like much, a closer examination reveals just how much a prosthesis matters.

The morning we started, the first step involved getting the cans of stain out of the cardboard boxes containing them. This required me to walk out of my father’s house, down three steps, and across an uneven grass lawn to the barn roughly 30 yards away. I then had to lift the steel cans out of the boxes and carry them outside so that I could apply the stain to the pine planks. When on the ground, I would walk over to where I had placed the can containing the “pewter gray” stain, bend over to place the paint brush in the liquid, and then stand back up to apply it. I walked the length of the barn in small steps, standing the entire time, to cover everything within my wingspan.

Things got more complicated with the introduction of the vertical element. I had to lift one end of a large, heavy ladder that was in the barn while Jackson hoisted the other. We walked it out of the barn, carefully navigating between wood beams and cars, which in the space of less than 50 feet took us from the cement floor of the interior to the rocks in the driveway to the uneven grass on the west side of the structure. Jackson then blocked the base of the ladder to keep it from sliding while I lifted it off the ground into a raised position against the side of the barn, rung-by-rung. I spent more than half my total stain-applying time on the ladder, climbing it – to heights that I will admit, made me grunt with anxiety, especially as the wind kicked up – and then descending so that we could move it three feet to the right and repeating the process.

When the weather turned and it began to rain, we had to carefully walk the ladder down from its upright position against the barn, carry it and the smaller ladders to the side of the barn so that they wouldn’t trip up unsuspecting visitors in the dark and bring the cans of stain back into the barn to reapply the lids.

On day two, I repeated these actions, adding in the use of a smaller ladder that I could manage alone. As the day wore on and the afternoon got late, I calculated how many times I would have to move the ladder in order to finish the job. A little less than one-half of the long side of the barn required 13 ladder moves, meaning I ascended and descended that ladder 26 times over the course of 3-4 hours, finishing as the sun crept lower in the sky and an early fall chill spread through the air.

  *   *   *

This description of two days of applying stain is not the most riveting thing I’ve ever written about. It’s basic, common-sense stuff. And that’s the point.

Every day, amputees around the United States, whether Medicare beneficiaries or privately insured, navigate a world that isn’t designed for them. They inevitably confront situations and conditions that challenge them. Navigating those obstacles is the difference between living a full and complete life on the one hand, and becoming home-bound on the other.

Nothing that I did over the course of two days at my father’s house qualifies me for a place on a medal podium. There’s no gold for the amputee who vacuums the stairs in his house, or the amputee who rakes the leaves in her small backyard onto a tarp, bagging them for pickup at the curb at the end of her driveway.

But the only way I can do what I did last weekend is if I have access to a comfortable, functional prosthesis. Anything that impairs my ability to receive prosthetic care in a timely fashion puts all of the activities I engaged in at risk. Unfortunately, the new proposal from Medicare creates documentation requirements that will slow down how quickly I can receive a prosthesis; it will limit my ability to get the prosthesis repaired when something goes wrong. (These are mechanical devices; something always goes wrong eventually.)

For all of the pain in my lower back that resulted from standing, climbing, reaching over the two days, for all of the “How much longer?” questions from my boys, for all of the annoyance upon realizing that we’d missed a little 6-inch patch of pine 17 feet above our heads, the weekend was a fantastic family experience. The boys cracked jokes that made sense only to them while their grandfather looked on bemusedly; my mom expressed appropriate amounts of anxiety at the prospect of a one-legged guy 20 feet up on a ladder, receiving the inevitable, testosterone-driven “don’t worry” answers that belied the terror said amputee felt high above the earth; Caroline, who came up a day later with Cara, diligently applied stain at the Lilliputian level from which she sees the world and hand-drew name tags for the dinner table, garnering compliments and hugs from her grandparents.

None of that was a luxury. But I fear that in the future it will be.

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