At some point in my neuromuscular career I resolved that disability would not be at the center of my life. A commendable notion, this has proved impossible. With each advancing year, like it or not, my entire being spins around cervical 4/5, the anchor point for everything I do. Like it or not. Which I don’t.
Actually, it all goes well beyond not liking and directly into the region of not accepting. This very morning I began to go nuts searching for my coffee capsules. What? Well, for the uninitiated, these are pre-packed versions of what the barista twists into position at Peet’s, or in any espresso machine. For the partial quadriplegic, the whole thing is a godsend, the user-friendly, no, cripple-friendly, pathway to cappuccino. But where were they, in their Italian tin, my espresso packs? Problem is, there are three of cans. The one that is open, plus the two in storage. Do I really need three? Is three compatible with apartment life? Worse, my kitchen is largely out of my hands. Or out of my hand, the only functional one, which is why hired hands, as well as Jane’s, routinely put away my groceries, clean my counters and keep my food reserves in order. Of course, there is a difference between out of control…which can easily be the state of affairs if I have no help…and out of my control. A sound manager would carefully oversee the activities of others, observing this and directing that. Not that this matters, because at this particular moment none of my staff are present.
They are off having lives. While I am trying to have coffee. If I could just find the can of Illy espresso bombs. The open can, that is. With a fair amount of wheelchair maneuvering, I have managed to find the two unopened ones. But the third?
I have a way of keeping these things in the refrigerator. It is an American’s homage to a food item. Britons, and certainly everyone on the European continent, would find my behavior nuts. Not to mention counterproductive. But I can’t help it. It’s in my American genes. Got some food you like? Refrigerate it. Better, freeze it. The cold treatment warms the heart. So I suspect that the open espresso can lurks somewhere in my refrigerator. Suspect. A big word. For there is a chance that Lorna has wisely put this espresso can on a pantry shelf where it belongs. However, this is only conjecture. Might as well start with the refrigerator, just in case.
A wall of food, that’s what presents itself as soon as I open the door. Ummmm. Leftover spinach with garlic. Fried potatoes. Lentil soup. Not to mention the rather spectacular chili I put together myself just yesterday. The latter dominates the vista. Jane has maneuvered an entire crockpot into the bottom shelf of the refrigerator. Which not only takes up space, but blocks the view of what might be behind it. Or under it. Or any number of places. There is too much stuff in my refrigerator, that is the thing. And for the first time in 66 years, it occurs to my impractical self that a refrigerator is about more than available refrigeration space. It is also about lines of sight. What cannot be seen cannot be removed. Cannot be eaten. Might as well be composting away somewhere. Which, if I bothered to unjam the clear plastic vegetable drawers, much of my refrigerator’s content is. Again, invisible decomposition is still decomposition, right?
Various options arise here. Eat less food. Store less food. Buy less food. This trio of possibilities, assembled harmonically, could result in much more effective refrigeration. Never mind. For now, the only route is disassembly.
Which might not be your word, but it is mine. For effectively, this is what is required. Take this out, slide this back. Remove that to the counter. Pull out those two. And gradually the space opens up, and once a sauce pan full of soup slides forward, there it is. The can of coffee capsules. Hallelujah. Thing is, the can is against the refrigerator’s back wall. If the bottom shelf was a theater, this is where people would be standing. It’s very far from me, the stage, and it proves almost impossible to reach. In the end, I have to pull out several mysterious cellophane packages. I don’t even bother to look at the contents. Let alone their age. Because now there is a clear path, and my hand has reached the top of the can. Barely, but a grip is a grip. I slide the can forward, appreciating the grippable nature of its domed top…which comes loose in my hand as the whole thing gets to the front of the shelf. The contents tumble onto the kitchen floor.
All I wanted was one of these little fuckers. Now all four of those remaining are rolling around my kitchen floor. Each is headed in a different direction. Set free, they are going to seek their fortunes in the four corners of the world. All this from a laborsaving, highly automated espresso maker. Why, I keep asking why?
Why not, is the answer. This is what comes of persisting in the world with half a body. The latter being a fairly steady constant, I must concede. It’s the patience that keeps draining.
Years ago, as a graduate student living near San Francisco’s Mission District, on many a evening I went out to eat. Cheap. Dinners at Mi Casa on lower 24th St. cost less than five dollars, I recall. The Roosevelt Tamale Parlor, once the haunt of the beat poets. And so on. My choice of restaurant…well, it became flexible. I learned over the years that having one eatery in mind was never a good idea. Because I wasn’t really looking for a restaurant. I was looking for parking. When I found it, I found the closest restaurant. I was only in my mid-20s, but it was already sinking in. Disabled life was different. The choices, the options, the priorities, none were the same as before.
Which brings us to Italy. Or to be more precise, websites representing Italy. For Jane and I had conceived of a notion, a perfectly splendid one, that we would rent a nice big holiday place in Tuscany and invite all of our UK friends.
The last time I set out for sunny Tuscany, my wife was dying. We didn’t need obstacles, Marlou and I. So any I encountered got the only effective treatment available. Money. Want a wheelchair-accessible van for a couple of weeks? No prob. There are these spivs in San Marino who have friends in Trieste…and will drive one of their little vans a third the length of the Italian peninsula to meet you at Florence Airport. For a certain price. Which was so staggering that no sane person would ever put up with it. But I wasn’t sane, was I? I was desperate, to be precise. And if you’re wondering, why Trieste…. I can only guess that if you’re renting out vans for the disabled, this is a spot that covers Austria, Italy, even southern France. Whatever. Never again, I vowed.
What has changed in Italy in those years? Honestly, I can’t say. Disabled vans seem to be in chronically short supply. And it didn’t take long to determine that a nice commodious holiday villa with ample bedrooms and a safe shower and assured passage for a wheelchair between sofas…well, there was too much uncertainty. In younger years, I really wouldn’t have cared. But this is my holiday, after all. To take a long trip and find myself in an uncomfortable circumstance…all in the interest of leisure…well, it just wasn’t making sense.
It was Jane who told me about the cottages rented through Britain’s National Trust. This group manages historic sites, such as stately homes. Trust the National Trust, I always say. Naturally, even this was fraught. The website proved insurmountable. It took a phone call in the end. And it was telling…or maybe promising…that the Trust’s one wheelchair-accessible property is virtually sold out for the summer this early in January. And the location of this one rental with disabled access, the only one in the UK? Throughout the process I realized an inescapable fact: it didn’t matter. Much like choosing Mexican restaurants, you go where you can. Which is, for what it’s worth, South Wales. Terra incognita…and FYI, we are going to have a wonderful time.