talk is yasui, as long as we keep it light.

I’m balancing on a tricky tightrope between providing a useful service towards Gabe’s academic success and being an annoying mother.

”Chokoretto no hou ga cohi yori suki desu ka?” I articulate carefully in his direction.

He frowns and, preceded by a sigh of sufficient length to allow what I said to sink in, replies, ”Hai, I like hot chocolate more than coffee.”

If it were up to me, I’d Skype him several times a week over the upcoming semester just to drill him on Japanese. Not because me tutoring Gabe is something that is particularly compatible with either of our temperaments, but because a) I DO want him to have a successful semester and recover from academic probation status, and b) it is mentally invigorating for me to review Japanese. Unless he proposed it though as the coolest notion he’s had all week, I think this will not come to pass. Instead, I will have to take a very Buddhist approach to the non-existent control I have over how his Spring shapes up, and allow it to be his process (with, I hope, significant helpful input from the faculty mentor he’s selected, and with whom he’s supposed to be consulting weekly.)

Because if academics do not pan out as a means of extending his maturing season I will almost certainly have to obtain a car for him to drive to the full-time job he will certainly have to find, and I’m not ready for that. The car thing. Scary. Also he’s messy, and I’m not in the mood to generalissimo anyone into maintaining adequate house-mate habits. Even though I guess it’s my job, seeing as how I birthed him and all. If this happens I will consider adoption offers, if anyone needs an almost-20 year old. Let’s root for Plan A.

Jeff, meanwhile, would like a car. This comes up every so often. This morning, as is typical, he wandered into the kitchen and said ”You know what I want? I want a used car.” Last time it was a truck. He also wanted to know how much a used Subaru would cost ($14K, I supposed,) and posited that it was worth it to him at that cost if we could swing it. I never know what to say in response to these exchanges. The impulse to get real is great. I would tell him that he is visually impaired (essentially true, and easier to swallow than cognitively impaired,) and remind him that he has no license and is uninsurable. I try not to do that though, truthful impulse notwithstanding. Today I just put it off, as usual, with ”Ok, let’s think about that one.” That has sufficed for several hours now, with no revisiting of the question.

Last night when I went to bed, Jeff was snoozing at some level considerably deeper than REMs, and I had the brand new and very strange experience of not recognizing his face. I scrutinized for quite a few minutes then came back and stared some more, wondering what kind of game was being played here...was my software glitching or was there something truly missing? You have undoubtedly seen a wax figure of a person which—no matter how morphically close it comes—does not really convey a knowable version of that person. It was like that. I pretty much had to accept the strangeness of the situation and go to bed anyway. By morning he resumed the familiar appearance of his AD-addled self.

Next up on the vocabulary list: takai and yasui, Japanese for expensive and cheap.

no, I don't go out in my bathrobe.

It’s no mystery to me, really, why the trips I’ve taken with Jeff in the past couple of years have gone well. It’s that I have no third parties to think about. Free from the daily obligations of home, and minus the split attention dynamic created when anyone else requires my consideration, traveling turns out to be as relaxing as it ought to be.

This morning, on the other hand, didn’t go quite according to plan. Jeff has acquired a new tendency to let Freddi the dog out the front door. Freddi is not a well trained dog. I have to take responsibility for this problem, since all the training that happened 11 or 12 years ago was pretty much up to me. Anyway, she is not such a good dog that she won’t take advantage of a situation. Jeff tends to lose sight of just which side of the door he’s on these days, and he’s apt, lately, to let a fellow critter in or out if it seems to want to go either way. So, when I heard the tell-tale open/close door sound, with too much space in between, I hurried to see Freddi standing by the lamp-post giving me that look. The look that says “ha. I know I’m naughty, but heck...it’s fun.” But I couldn’t do anything because I was still in my fluffy pink bathrobe.

By the time I’d tossed on my clothes from two days ago Jeff had taken off down the street which was bad on two counts: Jeff doesn’t know how to get back from down the street, and he was effectively chasing the dog toward busy Evergreen Road. All I really had to do was wave Freddi’s leash at her and she turned herself in, but I had by then exuded enough of my roiling sense of frustration that Jeff felt grumpy for the rest of the morning, including the hour and a half we spent in the oral surgeon’s waiting room while Gabe got his bone graft.

Freddi and I had a talk a little later, and she knew exactly what I was telling her even though she wasn’t willing to make any promises about improved behavior in the face of temptation.

But in the midst of naughty dogs, impaired spouses, and recuperating young adults, I was having one of those sandwich spread squeezed moments (which other people have in much greater abundance than I,) but still, it reminded me of why—even with a rather mentally crippled travel partner—I like trips.

Fort Knox? It’s not in Johnstown Betty.

Yesterday I had this dogged notion that Jeff and I would manage to remain at Disney Hollywood Studios (the movie-themed theme park) until they turned on the multi-wattage dancing lights holiday extravaganza that is the seasonal highlight of the “Streets of America” section.

To that end, I took us back to the good old Animal Kingdom Lodge for a mid-day nap. It’s what you do with small children to recharge their cooperative spirits, but the results were guaranteed to be dubious at best with Jeff.
Still, I will say this about our subsequent evening in the park: We managed. We poked around a bit (best defined as freezing in place every so often to let the throngs filter around us,) then had a very satisfactory early dinner at a facsimile of The Hollywood Brown Derby restaurant, where they chop the Cobb salad so finely it resembles tabbouleh. Not once though, did I encounter any reference to Fort Knox.
Fort Knox? Yes, I was wondering about that myself. In the inimitable way of an Alzheimer brain, Jeff awoke from his nap with the idea of Fort Knox somehow teetering on the edge of his frontal lobe.
”Yeah, Fort Knox,” he said as he got up, without further explanation. We went outside to our rented vehicle (a Nissan Cube, which I turned out to like very much.) “What did that sign say about Fort Knox?” asked Jeff, pointing out the window.
”I didn’t see it,” I said. “I just saw something about 'cast members only.'”
But Jeff saw it again a mile or so down the road, on a grassy, hazy highway median. “Right there,” he said, “It says something about Fort Knox.”
”It does?” I replied. “I’m just missing it.”
He saw it again as we entered the vast and sprawling parking lot. Small billboards line the lanes where the trams pick up and discharge human cargo. I saw an ad for the television show “PanAm.” Jeff saw something about Fort Knox.
As usual, I clued in the turnstile-manning cast member that Jeff would struggle with the insert ticket and fingerprint entry procedure, and she managed his ticket herself then invited us through the wheelchair gate. Jeff squinted at her name badge. “This is Betty,” I said, “from Johnstown, Pennsylvania.”
Jeff said “Oh yeah, near Fort Knox.” Betty forced an uncomfortable smile, already realizing that not both our decks were full.
”Thanks Betty,” I said.
For reasons that are unclear, that was the end of Fort Knox for the day. And the delicious but highly overpriced Viogniers at the Brown Derby made it better, fortunately, not worse.

Standing on our own four feet...for now.

Tomorrow’s goal: Visit Disney’s Hollywood Studios park in such a way as to maximize our chances that Jeff will still be semi-functioning at 6:00pm. This is because at 6 they turn the lights on for some sort of epic holiday kilowatt spectacular. Thing is, I’m here in the season, which will probably never happen again. Hence, I want to see it, despite my confidence that I can continue to live happily without it.

To this end, I have booked a very early dinner (3:55pm, to be precise,) at the Disney version of the Hollywood Brown Derby, on the theory that dinner will be enjoyable regardless, and surely we can find a bench to sit quietly on for an hour (give or take) afterward.

It will not work to use the plan with which I approached both today and yesterday. That is, enter the park at rope-drop, do the one “thrilling” thing I’ve selected as appropriate, and try to just relax, walk, and look at things after that. I know this will not work because, despite my efforts to keep the pace relaxed and allow for snacks and sitting, Jeff turns into a lurching zombie by mid-afternoon, and must be returned to our hotel where he basically does not recover except in that I can lead him around and point to food I place in front of him.

So...that plan: out. Possibly we will go early, walk around a bit, come back and attempt a nap. Naps don’t work with neurodegenerated people quite the same way they work with toddlers, is the problem. The most effective strategy would be to impose a sudden and drastic version of Daylight Savings Time on Florida, advancing the clock approximately 5 hours. That probably won’t get enough votes from everyone else currently occupying the state though.

Which means, I guess, that it’s Plan A. Mid-day rest. Effectiveness: iffy. Something funny happened just before I obtained our boarding passes at BWI airport on Sunday. A member of the luggage lugging crew asked me, in a thick Central American accent which took me two tries to comprehend, whether I wanted a wheelchair. I guess that’s not actually funny, but it was novel because it’s the first time I’m aware of that someone perceived Jeff as wheelchair-worthy. For tomorrow’s agenda, that might just work. Too bad he’d never go for it.

(Interestingly, I'm having all kinds of people notice his condition and strive to help this trip. From airline attendants, to people manning the ticket turnstiles at Disney Parks. You stick your pass into a slot, THEN place your finger on a print-reading device, then retrieve your ticket from the other side. They pick up on Jeff right away and say "I'll take care of it," then just move him through without the rigmarole. Also, a lady held the tram door open this afternoon when it was obvious I couldn't help Jeff step and hold it myself. Nice people.)

But it is pretty...

Here’s the thing I failed to take into account when I decided to bring Jeff to Disney World with me, and stay in the Animal Kingdom Lodge: The AKL is really dark. Dim, I mean. It’s an ambience thing, and I love the theme here, but it sure poses a challenge for Jeff.

Apart from a general tendency for his brain battery (and energy level) to run out of juice quickly, vision has been the striking winner in the race for most challenging deficit of the trip. Much of the wooden floor of the main lobby is polished to a high gleam. And while the lighting is low, it appears in abundant forms...Christmas tree lights, an impressive assortment of lamps, and highlighted African art in every nook. What this means is that Jeff cannot perceive the floor as a normal floor at all. It sparkles with so much reflected light (without the benefit of overall lighting,) that he steps onto that floor as if he’s either going to fall in a hole or trip over a tangled string of holiday twinkle-lights.

The stairwells, meanwhile, are carpeted in giraffe-spots WITHOUT that helpful strip of bright yellow paint we use to coat the front edge of the wooden treads at the Nags Head beach cottage. Hence, we traverse the hallways with me giving verbal directions such as: “The surface we’re on is completely flat. I will tell you when we get to steps.” And then I do. “One, two, three, four,” I say as we climb a flight. Then, at the landing: “Now it’s flat...u-turn!...Now more steps, one, two, three four...”

But I just thought of something. Even if we’d stayed at the brightly-lit Contemporary Resort we’d have had a problem. I know because we explored it today as part of my tour of holiday decorations. In the Contemp, the carpeting is a patchwork of primary colors, in blocks and patterns of assorted complexity. Jeff thought he was about to fall over objects strewn about the floor until I said “No, it’s flat. Just walk normally.”

Other visually-based problems are old friends. I’m used to him walking into doors if I don’t steer him through, or not knowing what on his plate is a finger food. (I try to make it all one or the other--forkable or not.) But difficulties perceiving the floor below him is a new gift, highlighted by the Disney interior design team.

It's a Small World.

Here I am at Disney World, perfectly happy with the fact that—at 7:15pm—what I’m going to do next is watch Once Upon a Time on tv, and sneak upstairs to the Kilimanjaro Lounge and bring down a “zebra dome” for a mini dessert.

I’ll tell you what, airplanes and suchlike conveyances are tiring. The funny thing that happened this time and the last time we flew (which was in April) was that Jeff doesn’t know how to disembark. Even with me leading the way. He’s completely perplexed by the idea of ‘pick up your roll-aboard and follow Emily down the aisle.’

Another interesting, perplexing aspect to traveling that is new this trip has to do with those same suitcases and unloading them from the rear hatch of the car. We stop, we get out, we walk to the back of the car, I open the rear gate, I pull out both suitcases. Jeff says “ooookay,” and immediately swings the one I hand him back into the trunk of the car. “No,” I say. “We’re getting out now.”

Nevertheless, I think that—living in the moment as he must—he is having a pleasant time. And I am having a delightful change of scenery.

I was struggling a little bit with the indulgence inherent in this trip, and the idea of a place such as Disney World in general. Especially after a Facebook friend posted a link to an excellent series of photographs with the theme “Where Children Sleep.” Beautiful photos, beautiful children, often appalling living conditions. It’s very hard to look at the series and not come away remorseful about your plenty and almost sick about the excess so often depicted in stories about the luxurious lives of the 1st World very-rich. But then again, you can’t get mad at the 1st World very-rich for the fact that they hire an interior designer to decorate their home to maximum holiday excess while they’re away on Thanksgiving vacay without noting that it’s all a matter of degree and relativity. Here I am in a lovely resort. I am having fun.

Well, I guess it’s best to try to live life experientially, and be where you are, absorb what there is to absorb, and try not to get hung up on the fact that you can’t—at that moment—right all wrongs. Or probably ever. You can just try to fulfill the role in life you bumbled into, and hope you make a tiny difference toward the better.

People at home

I would say people are crawling out of the woodwork this weekend, but I don’t like the expression. Especially given the fascination Otis the cat has with a particular corner of the kitchen, under the cabinetry. I’m hopeful nothing is crawling out there, or at least that Otis has the situation under control.

In a remarkable and rare confluence of humans, all four offspring have been (more or less) in residence for the long Thanksgiving weekend. This will revert to normal tomorrow when Rachel and Olivia return, respectively, to teaching and scholarship, and Gabe is likewise shipped by Amtrak to North Carolina after we grab a dinner bite at Union Station in D.C.

More remarkably, all woke up in time for a casual brunch we had this morning with their much younger Clement cousins. Becca hauled the ol’ Lego bin out of the basement, as is the custom, and the little Clem cousins adhered to their tradition of wanting to take our JarJar Binks Lego dude and several Lego pizzas home with them. Mindful of the fact that these same children have enough Legos at their home to sink the Titanic, I demurred. We will hunt down JarJar Binks and pizzas on Amazon for Christmas tokens, but retain what’s left of our supply for future Legomaniacs. While Olivia suspects that JarJar Binks might be shanghaied in someone’s pocket someday, we haven’t taken to pat-downs at the front door yet.

Now, Jeff has been nestled all snug in his bed, and I’m eating spaghetti. The girls, you see, have all decamped with gentlemen friends. If I were Mrs. Bennet, this would probably please me very much. Luckily there’s no entail here, so I get to keep the house, regardless. Don’t worry, ownership of this house does not convey any special title of upper-crustiness, unless it’s something like Earl of Esoteric HVAC Systems. No rich people will marry me for that title, I’m fairly certain.

I lost my albatross

I guess a person can only live under a cloud of bereavement for so long. Not speaking for others of course, but I would never choose such a cloud. Still, I had one which started forming about when ’03 segued to ’04 and the person I loved began to morph from partner to guy-in-need-of-care.

You can’t help it is the thing. When you’ve spent 20 years in life-meld with an other who buttressed, buffered and ballasted you it’s not going to feel good when those features of his personality fade into oblivion. So, while I always got-r-done, it is also true that I continuously carried a small but potent albatross of grief in my left jacket pocket.

What happened is, sometime this year, as Summer turned to Fall, (can’t pin it to a day,) the albatross disappeared from my pocket. I’m not worried about the albatross. I think he will reappear in a slightly different guise somewhere down the road when PCA proves that it is, in fact, terminal. But for now I’m not going looking for him. Somehow, finally, a self of me emerged (or re-emerged,) and it’s one that is happy enough unpartnered.

Another interesting feature that was revealed as the skin of bereavement sloughed off is that I don’t mind being a caregiver as main occupation. Not because I think it’s cool or anything...it’s decidedly not-cool, but heck, I don’t care. Life can be fun. You just have to gear your activities appropriately.

There’s movie called Death Becomes Her in which the character played by Bruce Willis finally throws off the burden of being doormat to a domineering spouse and declares that “life begins at 50.” Luckily I have no nasty people to dispense with, but I’m pretty sure my 50s are looking like a nice change from my 40s.

and today...

...it's William J. O'Neil, (founder of Investors' Business Daily and author of many of Jeff's favorite books,) who keeps "sending us this stuff. (what's the angle?)"

Do these books need to disappear? I don't know. So far, distraction works.
Jeff: "Why does he keep sending this stuff?"
Me: (shrug.) "I know, let's walk the dog."

some things can't be accounted for.

Jeff picks up his favorite book, Accounting for Dummies, and asks me: “Why do they keep sending this to us?”

”Your book?” I ask to clarify. “I think we bought it at Barnes & Noble a few years ago. Nobody sent it to us.”

”Yeah,” he says, gesturing with the book in question for emphasis, “but it seems like they send it every day. Why is that?”

I’m not sure why Accounting for Dummies has remained, for quite a few years, a book that Jeff is most likely to pick up, but it has. A few years ago, probably about six years ago, Jeff decided he would take courses in the accounting track at Anne Arundel Community College. He got a few sessions into course 101 (whatever it was called,) before deciding that he’d “fallen behind” and would re-enroll next semester. Falling behind, translated into my viewpoint, meant that he’d lost his car in the vast parking lot options at AACC at least twice (requiring my rescue,) and he’d rarely arrived for class on time (as one had to locate the classroom each and every session.) He “studied” by looking at his class materials and inscribing a phrase, such as “Assets = Liability + Capital” twenty or so times, at assorted oblique angles, on a piece of notebook paper, but little else. We were clearly beyond the point of no return.

Nevertheless, he has retained the notion that he’d like to study accounting, and—to that end—stares diligently at the table of contents in Accounting for Dummies, almost daily. So whatever it is he’s asking me about this morning represents a new kink in the hose.

”They keep sending us this,” he insists, patting his book. “I don’t get it.”

I realize that trying to make sense of the “reality” from which he’s speaking is going to be a fruitless endeavor. “Do you like this book?” I ask.

”Do you move this around?” he asks, a little more on a page that corresponds to one I recognize. “Sometimes it’s here, sometimes it’s over there...”

I say “I think you just read it a lot, and sometimes carry it around without even noticing. Everyone does that.” His face still shows utter perplexity, but he’s willing to buy that story, for now.

Later he wonders, aloud, whether he’d be any good at stock market investing. I show him his books on that very subject. “Oh yeah, those,” he says.

Betta' Beta.

Clarence my cross-eyed muse and I, and the other I, were having a conversation. See, I’m kind of more or less done with the drafting of the manuscript heretofore known (to me anyway) as “Bea and the Smart Kids.”

Drafting, yes...editing, no. That’s being difficult. I’ve been working on the thing for so little and for so long that not a one of the three of us (Clarence, I or I) can even comprehend it as more than an overly-familiar pablum of uninspired blah-ness. I probably need to work on something else. But, you know, there’s this problem I have with not completing something. I’ve not-completed something in the past and it doesn’t feel right. The not-completed thing wanders the deserted highways of my imaginary world like a waif in the night (ok, it’s not really that pathetic...it’s more like that broken window screen you never fixed, in the garage.

Anyway, Clarence says it’s my fault for not showing up for work often enough, and I blame me, and then it’s this whole merry-go-round of buck-passing. That kind of merry-go-round they used to have at children’s play parks with four different colored textured metal quadrants, and galvanized hand-rails. You’d spin the other kids until somebody either fell off and bonked her head or barfed, and no parents thought of municipal liability.

Normally, at this point, I’d edit to a fare-thee-well while still managing to overlook a handful of blatant typos and some really awkward constructions, then I’d sketch some fifth-rate cover art and try to disguise its dorkiness with watercolor paint, and then I’d send the whole assemblage to Lulu, which would happily provide me with another box of books to store in the closet. Trimmed in turquoise, or maybe yellow.

Trouble is, neither I nor I nor Clarence can summon enough love for the manuscript to jump into that solid book creation phase. But we’ve also agreed that we’re not sending it to live with the waifly window screen. So I think we’re going to (for now) settle for beta testing. (“Beta testing?” says Clarence. “You mean that cloud-o-sphere called emilygillespieclement.com?” “Yes,” says I. “It’s very much like The Island of Misfit Toys, only the residents aren’t as cute as the doll in the gingham dress who had no apparent flaw. And we give them marshmallows for their campfire. Don’t look at me that way.” Clarence suggests that perhaps betta testing--where we drop it into a tank of small pugnacious fish would be better. I ignore that.)

Anyway, I think I’ve got Clarence on my page now because until he gets his eyes fixed you can’t expect anything more brilliant to roll out of our fiction mill. So, yes. Pretty soon I’ll be mounting the chapters under the heading “new but stale" or something.

But first I have to at least try to edit. A little. I will leave some terrible prose though. Don’t worry.

going

I remember exactly how I felt this time last year when I was in a flurry of travels. End of summer beach week, two trips to Connecticut, and a cross-country Southwest Amtrak adventure. I believed the end of opportunity was impending and I wanted to make hay while the sun shone. Shined. (I don’t like “shone” there, but I think it should be. Is this breaking the third wall? This is not a play, so no.)

Then, in April, we managed the Northwest Amtrak trip with Mom...so my sense of impending closure was a little premature, maybe. Or maybe not. Things are and were closing in. Yet here I am, a year + later, planning more comings and goings. But I’m nervous in a way that I wasn’t last year because Jeff’s world is shrinking and we can almost see it day to day. Shrinking, in this case, means...maybe...the breadth of meaningful ways in which he can interface with the world. Well, that’s vague and fraught with jargon-babble. That’s because this is really hard to describe. You sense it more than you quantify it.

Let’s try another way. There is a balance between the pleasure you get from visual stimuli (because of its meaning to you, because of the way the things you see pluck the strings of your intellect and emotions,) and the bothersomeness of the visual cacophony which is too much for you to sort in a pleasant way. As more data defects from the pleasure to the bother side of the scale, less is attempted. More is shut out. A new experience may have very limited worth, if it is even tolerable. (Yet, ironically, susceptibility to boredom still exists.)

Boredom, speaking of boredom, is a condition to which I am supremely susceptible, even though I was talking about Jeff. But now I’m talking about me. Yes, caregiving can get pretty boring. Honestly, I don’t know that it makes an owl’s hoot of difference to Jeff whether I create adventures. But for me it does. I have to try to squeeze what remains out of his capacity to go, see, experience, and I’m not sure how I’ll deal when the door closes to a pinpoint.

For now, I have ways to offset the disorientation. I hold onto him. The worse he gets, the closer I pull him. It seems like being close, held, and guided, with verbal commentary to distract him from the visuals which may be too fast to process, make any experience manageable for Jeff. At a park, at a pace that average folk might find tedious, we can stop, occupy a bench, and let the visuals pass by without multiplying the relative velocities by moving ourselves. Until we’re ready.

I don’t mind that every trip is experimental. That an aspect of each adventure we attempt is the gauging of whether or not we can keep managing such things. I don’t want to be stuck without even the option of half-baked adventures. So I’ll keep pushing this cart, until all 4 wheels fall off.

splash.

I’ve made a plan. I’m tucking Jeff into a duffel and heading to Florida for a four night 50th birthday present to myself. This will occur just after my birthday, in the first week of December.

Now I’m aware that Disney is not everyone’s idea of “real” travel —and without a doubt, I like reality-based adventures very much—but this is what I whimsically want to do, so I’m not going to try hard to explain myself. We’ll stay at the Animal Kingdom Lodge and see...animals. And eat stuff. And take what slow-paced, low-key pleasure we can in a few short days at the parks, (uncrowded in early December,) enjoying mostly things like The Jammitors. To be followed by sitting on the veranda at the AKL watching ostriches.

I’m a little worried today though. Jeff’s had a foggier than usual 48 or so hours, and you just wonder...are we encountering a new set-point, or is it just a passing low pressure system? So we’ll see how things play out. I have trip insurance for the cost of lodging and whatnot and won’t lose out too much if I must cancel.

The thing about AD is that it’s like Splash Mountain. (Disney reference...to an attraction we will not visit this trip.) You know that while you might be on a manageable horizontal boat ride with just an occasional swoop to port or starboard, you’re going to hit the 45º downward flume, and you’re going to be at a lower elevation at the end.

And then I’m going to be looking around like...what am I supposed to do with this? Where’s Uncle Charley? (You know...William Demerest from My Three Sons.) Or some other avuncular type who wants nothing more than to move in to the room currently housing Hazel the crazy kitty, and Be There for Jeff. Because Jeff would love him and be comfortable with him and vice versa. And I wouldn’t have to imagine that I’ll be doing everything and housebound if there’s something scary like that at the bottom of Splash Mountain.

And of course there is. It’s Alzheimer’s.

Maybe an arrow would help?

Yesterday morning I stepped into the bathroom onto a damp bath mat. This was curious, since I’d last taken a shower 2 days earlier. A sniff suggested the cause. Actually, it was a little more forceful than a suggestion, nasally speaking.

There is a scene in the Swedish movie “A Song for Martin” in which Martin, the symphony conductor now suffering from Alzheimer’s, excuses himself from a restaurant table and takes a pee in a potted plant. Things like this come to mind. Especially after this morning. I was doing sink business at the sink and Jeff came into the bathroom. He stood on the (clean) bath mat and faced the shower. “What are you looking for?” I asked. “I’m waiting for a turn,” he said. “A turn for what?” I asked. “A turn to pee,” he said. I showed him a better target.

This is a reminder of the fact that much of what we humans do is not really in our nature. We train ourselves and our children. Cats are more natural than humans at getting with the bathroom hygiene program. (Well, not my cats in particular depending on which of them you’re asking about, but cats in general.) Anyway, I recall that Jeff is not the only person I can think of with a declining mind who has selected a bath mat as a likely patch for business. And why not a potted plant, if you stop and think about it. I used to have a cat who thought likewise.

Wow, I've fussed about my brain...

...for two blog posts in a row. Sorry about that!

Who's on First? Don't know...but I'm picking clovers in left field.

There’s a bit of a disconnect between the portion of my brain known (in neuropsychiatry) as “Executive Function” and the part known (in common parlance) as “Slacker.” Or perhaps it’s more that Executive Function never took Slacker to puppy training school at Petsmart, and now Slacker, when asked to perform, falumps onto the floor belly up and says “no, not fetch, belly rub.”

Anyway, Slacker is evidently asserting passive-aggressive control of the situation this morning, as I sit at an outdoor table at the Baltimore Tea & Coffee Company with my working notebook (from which I am intended to derive where my story is meant to go next) open at my right elbow.

Slacker, though hopeless at home, is easily distracted by the parade of humans coming in and out of BT&C. Ruddy business suit guys who don’t quite have their shirttails all the way tucked, or the pristinely makeupped Asian girls coming and going from Bella—Lifestyle Nail Salon & Spa next door.

Slacker, now that I stop and think about it, has more or less helmed the ship as a lifelong habit. And this explains WHY I didn’t, to my present-day chagrin, learn Latin, geography, and the Encyclopedia Britannica as a kid like my brother.

What I have done, despite Slacker’s insouciant but unquestionable grip on the control-stick, is squeeze out 3.823 books. It’s that last 17.7% of my current effort that Executive Function and Slacker are presently tussling over.

Now, you would think (well, in fact you probably would not think, but you would hope,) that almost-four works of fiction, wrassled from the playful but resolutely ornery jaws of a bad puppy would deserve (if real-life were stories) to turn out to be sparkling with the sort of free-spirited wit that is coveted by the reading and editing world. Actually, what happens is that you get chewy gooey remnants with their squeakers ripped out. Because real-life is not stories, and this outcome is what makes the most real-life logical sense. Still, we carry on...Slacker, Executive Function, Clarence my cross-eyed muse, and I. Because that’s all we can think of to be.

Goal: By the end of today’s work period, only 17% will remain to be written. That’s a few hundred words, that 0.7%. And this blog-post doesn’t contain a one of them.

flicker...*pop*...oops.

The Whole Foods Market internet connection is not working. It usually does, so perhaps I will bundle my flotsam and decamp for a more central work area. This one, though, has a window with a view of a) traffic coming and going from the shopping center and b) Giolitti Italian Food & Wine (Homemade, Local and Extraordinary.) The alternative would have a view of the “Thank You For Shopping With Us” sign.

I did not leave the house with much of a plan this morning when Kimberly arrived. Not much of one. Although, as I have reached the climax-through-denouement stretch of my “Smart Kids” book (whatever it intends to be called,) that’s the obvious choice of activity. But my brain is working with a scattershot functionality which suggests that oatmeal for breakfast is not as good a choice as nuts and seeds. Nor does this Allegro tea...”Engage Your Brain” (or something) is the name of it...seem to be living up to its promise.

I have to wonder about this theory of humans, and the idea that one member of the species can be wholly responsible for another one whose circuitry has failed. Some of us (though as “intact” as we’ve ever been) still operate like a Kliegl light board with about 30% finicky switches. So you’d think there would have been some kind of quality control applied when they handed out life stories, but you know there’s not.

Whereas I would heretofore have a headache...

There has, of course, been some legal rigmarole and financial configuring to do with regards to Jeff having retired from the hardware business several years ago. Among the interesting discoveries we stumbled upon following the tricky moves of the so-called “Great” Recession has been the one that nearly tanked the insurance policy that was contrived to enable my brother-in-law to retire his obligations to us.

The problem with insurance policies (and thank goodness I’m not in THAT business,) is that they might have been designed to float on the buoyancy of a good economy, as ours was. Sometimes, if your raft springs a leak, it doesn’t quite totally sink, but you know if you jump on it all bets are off. That’s where we were. We (as in said b-i-l and myself) refigured, cooked up a way to make higher payments (Jeff, after all, is not someone any right-minded life-insurer is going to take into consideration again,) and now have a somewhat smaller raft that floats.

Part of what this means is more stuff to sign, at the bottom of papers with words like “whereas” and “heretofore.” Usually if I squint and cock my head so that my left ear is higher I can come away from reading these documents with something akin to comprehension. If I were a lawyer though, I would get permanently stuck that way which would seem, eventually, to be an unfortunate condition.

Does Braco have a gazing ball in his garden?

Am I procrastinating? Oh yes, I am. It is Thursday, writing time, and I am in Whole Foods having a cup of Allegro Breakfast Blend. I have picked up a copy of Pathways, a large (twice the size of a typical journal—I know there’s a name for that...tabloid?) publication which promotes such things as “mind, body, spirit and environmental resources” in the Washington D.C. area.

I usually like minds, bodies, spirits and the environment, so I picked it up to see what I might find. Leading off is “The Herb Corner,” in which an herbalist names his ten most incredible herbal products. I am sold. I definitely need to get myself some triphala to ease digestion, and while I’m here I might look for a product called “I Sleep Soundly” which could be useful in the area of releasing tension before bed.

Now I am scanning the rear of the magazine, hoping to find an ad for “Grannies Who Love to Come to Your House and Stay With Your Husband While You Go To a Movie.” I don’t find it. Instead, I find a full-page advertisement for an appearance at a D.C. hotel by Braco. Who is Braco?

At first glance, Braco is a kindly looking 50-something with a really weird mullet. He is from Croatia. From what I can glean, one shows up and, for $8, experiences a “gazing session” with a ballroom of other gazees. Braco does not speak in public. Apparently, his gaze is sufficient. Actually, if you follow the fine print, his gaze is more than sufficient and is not recommended for visitors under 18 as “the energy could overburden children.” And pregnant women. But it is recommended that you bring their photo. I guess that if Braco gazes at a photo of your loved one, the photo assimilates his power, a la Harry Potter, and forwards it to the proper address.

Yoga is smart, and so is dog-walking.

What I did at 6 a.m. this morning, 30 minutes before my alarm went off, was stand up and do some chest-opening stretches. And I talked to myself a good bit. I’m probably better at channeling the wisdom of the cosmos at pre-dawn than I am at sunset, for sure.

I think what woke me up was a combination of inferior digestion, new-forming-scar pain, and the usual sort of stressy, nondescript ouchiness that hovers in my upper torso and is best released by doing something. Like stretches.

I would posit that a good percentage of even avowed atheists are not materialists, to the extent that they would never bother tapping into the under/over/through-current of intelligence that seems to pulse through the quantum soup. (If you’ve ever effed it...I mean, it is ineffable after all.)

I am not placing myself among atheists by so positing, but I do find that by default I am somewhat of an a-theist. That is, assuming you take theism to require a discrete other, usually at least partially definable by the guidelines offered in a particular religion. So, it is possible that by not being able to identify a discrete presence as opposed to a generalized connectivity, one is a-theistic.

I sort of agree with the theory that one of the reasons we humans got so heavily invested in religion is that, as critters go, we got a little more intelligent than is good for a fragile psyche. While cats indubitably cast themselves as the point-of-view character in their experience of life, they probably don’t wonder what happens when the story ends.

I’m not sure the concept of mortality is a healthy thing to meta-analyze. By which I mean this: While most of us objectively recognize that we will, in fact, die, it’s comforting to hold oneself as the sort of person [that]* doesn’t happen to, until the time it actually happens. *[neurodegeneration, skin cancer, any cancer, traumatic bone-crushing injuries, etc.]

I do know for certain, and can vouch for this by dint of much personal experience, that doing something (stretches, bricklaying, walking, composing readerless books,) is a vastly more therapeutic coping strategy than lying in bed at 6 a.m. noticing how it can be painful to somaticize your existential uncertainty.

Scars...nothing wrong with looking badazzz.

As of Monday afternoon’s visit with the dermatological surgeon, I appear to have had a three inch piece of clothesline whip-stitched to my bicep. Only it’s not rope, it’s my skin. This, I am told, is to ensure a better long-term cosmetic result when the scar contracts.

This morning, pre-shower, I removed the original bandage, (which was giving me roughly the arm configuration of Pop-eye,) for the first time. Two extra-wide band-aids seem to provide adequate coverage I discovered, as the ditty “I am stuck on Band-Aids, ‘cause Band-Aid’s stuck on me!” jangled merrily in that part of my brain that just likes to behave that way. The jury’s still out on whether Band-Aid is, in this case, actually stuck on me.

Well, with that patch of traitorous epidermis gone to what is probably a redundant degree, we’ll see whether we carry on with a “chop early and often” approach at my regularly scheduled appointments.

Here, Otis and I are comparing arms. His is, at this point, unscathed.

Should find a fritter shop, really...

The Baltimore Tea & Coffee Company is not actually in Baltimore. It’s in Annapolis. Right across from the Annapolis Mall (whose real name, which nobody uses, is “Westfield Shopping Towne.” Nobody uses it because Westfield, in this case, isn’t even a place. It’s a Corporation.)

So, if you’re sitting at the counter facing the front window at BT&CC, you enjoy a stunning view of (in this order) parked cars, small trees trying gamely but unsuccessfully to evoke a parklike setting, moderate traffic on Bestgate Road, and the stick-up atrium of the mall parking garage outside Nordstrom. Plus the corner of a red dumpster. Oh wait. Please insert the old guys at a patio table club at the beginning of the list.

BT&CC is #2 in the series of places I’m auditioning for the part of “good place to write.” The first place was the public library. It performed well, except in that you cannot buy a veggie wrap and tea there. It is also possibly true that one is ever so slightly more alluring writing in a coffee shop than in a library. But probably not in my case since the moment the idea of allure even occurs to me I usually spill something.

Jeff is home with Kimberly, who was an hour late this morning due, ostensibly, to an accident and/or gas spill a few miles down the road in Crofton. This morning she wanted to talk about how we might get Jeff to focus. “Focus on what?” I wondered. But it’s something to do with the way he wanders aimlessly around the house moving from his books, to his hand weights, to the bathroom, to nothing in particular. She’s worried that he’ll go outside and take off. (I put some jingle bells on the door to make it more evident if it’s being opened.)

”He doesn’t really focus on anything,” I submitted, not quite clear what sort of response Kimberly was hoping to evoke. “That’s just what he does, and you check with him every so often to see if he’s lost the bathroom or something.” I don’t think that’s what she had in mind, but it occurs to me now she could always show him her shiny black motorcycle, which is parked in the driveway. He’d just like to stare at it for a while, I think. I’m still kind of wishing we were doing daycare instead of home care, but we’ll try this for now. This is the second day of this experiment, and the second day I’ve left the house half-inclined to turn around and say “Nevermind, I’ve got this.”

Guess I won’t do that, for now. Requiring myself to indulge in 12 hours a week of alone time is not harsh treatment, for anyone, and I’ll either a)get used to it with an eventual eye to expanding the time, or b)never get used to it but possibly accomplish a minor thing or two.

And now, it is probably time for me to crack open my well-traveled but too-neglected, page-crumpled notebook which is supposed to remind me of where I left off in writing that book I’m supposed to (by my own supposing, and no one else’s) be writing.

on stuff.

I’m feeling a sense of calm today that is not fully explainable by the fact that the deprivations of the aftermath of hurricane Irene (living electricity, television, telephone, and internet-free,) seem to have officially ended this afternoon. I think it has more to do with the fact that I’ve once again tackled the basement.

About two years ago I took on the basement in its scarier form—the state it was in as Jeff’s continued collecting of building materials overlapped with his loss of awareness and organizational ability. That was big. This time it’s just about items on which I equivocated at the time, plus two years of entropy.

Even so, it fell into that category of chores you hesitate to take on because they seem daunting. Like most things in that category, once you start it’s not so bad. It’s not so bad. I’ve got a good foothold on the whole of the task, and it will be completed.

Meanwhile, our two downstairs bedrooms are spare and orderly. One is Jeff’s new room. He hasn’t technically moved in yet, but we are using it for changing and showers. The other is the “office,” (formerly the computer room, but now housing only my laptop plus an assortment of business related necessities.) It will also serve as a bed-chamber for sleepover caregivers, as the need arises. I am almost giddy about the relative emptiness of those two rooms, combined with the fact that our lawn mowers, just this afternoon, blew away all of Irene’s leaves and debris, and removed the stack of branches I’d piled up by the silver maple.

I am wondering why this pleases me so very much. Why is a not-so-inherently-tidy person like myself so comforted by the removal of stuff?

Wherever you fall on the clutter-tolerance scale, I am convinced that our habits derive from comfort-seeking behavior. My brother-in-law Fred (who is probably reading this—hi Fred,) likes his stuff. And he would like some more stuff, thank you. In fact, I think his Barbie Dream House would have a huge pink barn (maybe 3) out back, for stuff storage. (Fred might prefer if I rethink this fantasy in a Johnny West ranch doll theme.) Fred cannot believe the stuff I’ve gotten rid of with an almost sacrilegious insouciance. Because I presume that for Fred, having a galvanized, etched, 18th C. cotton gin cog handy when or if you need it is a source of comfort.

My mother-in-law was not dissimilar. She could not keep a barnload of objects as she moved into progressively smaller living quarters, but getting her to part with even a shrimp fork took a pry-bar and perhaps some sleight of hand. Or major distraction.

But I am not comforted by stuff. In fact, if they were looking for volunteers to have all their earthly possessions obliterated (house included) in exchange for a couple of free airline tickets, my hand would go up first. I’m not sure I’ve completely worked out why this is. But I can tell you that too much stuff, in my jurisdiction, makes me feel trapped. The more stuff, the more trapped. I don’t exactly know what I’m trapped in either. Trapped in stuff, I guess.

In the hullaballoo of hurricane Irene, I realized I’d make a terrible survivalist, because I don’t want all those emergency provisions. And that is ok, I don’t mind. If apocalyptic survival is for the most stuff-equipped, I will go first. It’s ok.

Pre-Edisonianism

I spent the first third of last night in the bathroom, on the floor. No digestive complaints, it was just the only way to get a slight bit of shut-eye while Freddi the dog wigged out over the wind, rain, and lightning of Tropical Storm Irene. For some reason, in the small enclosed tile room she feels less compelled to scratch nervously at the floor—a habit which, when performed next to my side of the bed, is impossible to sleep through. It was not the worst. I had a soft sleeping bag and two pillows, and when I became aware, at some impossibly wee hour, that the storm conditions had eased, I went back to real bed.

It occurred to me that I might go and sleep with her downstairs, where the rug does a better job of muffling her scratching, but I could not imagine how Jeff would cope if he woke to pee at 3 a.m., in the dark, disoriented, and there were no me to provide guidance.

Tonight, Sunday, we’re starting the evening electricity-free, but at least the dog should sleep normally. And I, perhaps, will sleep well, having collected a haystack-sized pile of tree droppings this afternoon, in addition to moving Jeff away from the doorway each time Olivia went out with a load of supplies for her campus townhouse. She left for school this afternoon, missing a fine dinner at Ellen and Fred’s. (Thanks sib and sib-in-law-who-have-electricity, for feeding us.)

If Baltimore Gas & Electric have not fixed us by morning, I am at least more prepared, coffee-wise. Declining to wait at Donut Shack, in the line which was snaking into the parking lot by 7:45 this morning, we instead came home where I scrounged for what remained in the coffee grinder, added one Starbucks Via instant which I found on hand, and concocted a semblance of coffee after boiling water on the Coleman stove. I steeped it in tea infusion baskets right in the mugs. Not bad. Then I made pancakes. Also on the Coleman stove, on the porch. By then I had pretty much ruined the chances of anything remaining good in the fridge or freezer, so all uber-perishables have been discarded and the fridge got a light wipe-down, which it needed.

Now, at 8:30 p.m., my small Eddie Bauer brass oil lamp is flickering away on the mantle, and we are sitting in the living room as a means of staving off bedtime. As a means of staving off wake up. As a means of letting me sleep until 6:30 a.m. Whether or not there will be power by morning is an unknown, but I am now prepared for coffee, with a fresh tin of pre-ground, and a bpa-free, but otherwise less breakable, french press. Because I am exactly the sort of person who would whack a glass french press on the edge of the countertop. I hope Donut Shack is prepared too, but I will once again not be in their line.

August is Augusty. It usually is.

Sometimes cleaning the “Squirrel-Buster®” bird feeder is about the best thing to do toward the end of a month that has steadily pushed you into a murky corner of existential nihilism. 15 minutes ago I could say that better, but then I went off and left my computer and came back to find a string of nonsense characters instead of the well-crafted first two paragraphs of an unsaved document. There was no retrieving it. I did not see a cat nearby. I have no explanation, but that’s the sort of life that, at its worst, feeds the above-referenced existential nihilism.

It is no wonder that the bird feeder needed, for the first time in a year point five, a thorough cleaning. Perky green domed roof or not, it would be a rare feeder which could withstand the monsoon which has pummeled the Mid-Atlantic in the past week and a half. Chickadees could only get to the occasional millet seed which filtered through the gluey glom of fused sunflower hulls. The feeder is drying in the basement. I’m letting my little inner bad philosopher diffuse on the front porch.

Fall, the season when everything dies, might be just the non-contrary counterpoint that will keep my mood and bird feeders unclogged. Because here’s a brief synopsis: I live with dying things. My dog is twelve and has bad legs. My old cat is in remission from a fibrosarcoma which almost promises to return. My other old cat is on palliative treatment wherein she gets as many bad-for-you steroid shots as she needs to keep her crazy itchy self comfortable. My life partner is experiencing some disturbing downsteps in his tango with the long goodbye. And yesterday, instead of the usual postcard stating that the spot the dermatologist sliced off during a recent “body check” was no big deal, I got a voicemail. You just don’t want voicemails when you expected a postcard.

I thought having green skin was my get out of jail (or serious dermatological trouble) free card. Only pink people are supposed to have this stuff. But, wouldn’t you know it, my olive-complected ancestors apparently dropped the ball on this one and it was snagged by my sun-vulnerable Nordic stock. Thanks Eric the Red, I owe you one. The freaky thing is that the melanoma-in-situ just zapped off my right arm did not appear all ugly and alien and dark like the pictures they show you on Google. It was merely one more splotch in the multi-splotch of freckly pigment I am pretty much covered with. It only looked slightly splotchier, and that’s what got my attention. I guess that probably suggests a comforting superficiality, but it also reinforces that the dermatologist will now be one of my best and most regularly visited friends so that any future attempts by my skin to turn against me can likewise be nipped in the easily-removable bud.

So, it turns out mortality is the rule around here, whether you are a mammal or a bird feeder. However, I still have some furniture to move so I’m going inside now. Gabe is giving up his downstairs bedroom to the call of one-level caregiving. I will figure out where to reinstall him later, before he comes home for Fall break.

tired? yes.

Tonight—5th floor of the O Henry hotel, Greensboro, NC. Different side, different view of office buildings and minor highways from our last stay. Jeff seems to be deriving some enjoyment from gazing out at the twilight panorama, and that’s a pretty good deal for someone who’s required me to reorient him to what, why and where at least three times today.

I am somewhat tickled by the geeky mix of completely un-preppy dweeby types I’ve seen milling around in our return to Greensboro. Of course where I saw the most was near our dinner locale which happens to be a strip of funky dives surrounded by the UNC Greensboro campus, but I trust that the general vibe of oddball kids extends to Guilford, a couple miles or so down the road, as well. Gabe was a fan of any place that offers numerous varieties of tea drinks including chocolate-banana, green apple, and mango bango. (In addition to udon noodle soup.)

Ok, that was Wednesday night. Tonight, as in when I’m typing right now, is Saturday night. We got back from Greensboro on Thursday night, after getting Gabe unloaded into his dorm (Binford Hall, conveniently located a few steps from the IT Building where I hope he can work out how to print his schoolwork, since I did not leave him equipped with a printer to jam all up.) But tonight, Saturday night, I’m about as tired as the old toothbrush I’ve been using to clean sink drains. I guess I should be over the two consecutive days of 6.5 hour drives, but I may not quite be over the caffeine gum I chewed and the strong iced coffee I got at the Charlottesville Whole Foods Market. Nor have I figured out how to process the critical threshold we seem to have crossed which has taken Jeff from being sort of a manageable extra pet to keep an eye on, to being an energy draining appendage. Jeff likes to ask everyone he sees on a college campus where they're from. It's just that now he has absolutely no discernment as to when to use the question and on whom. So he's apt to ask the Public Safety ladies lining the stairway into Binford Hall, as 3 dads and 2 kids are trying to go opposite directions carrying boxes and refrigerators. Or he asks the SunTrust guy who's trying to set up student checking accounts. I know, it's not quite as weird as last night when he told my bedside lamp goodnight, but it's one of many forms of mischief I need to keep him out of. Well, so I’m tired.

So tomorrow, after I finish cutting 600 or so tickets for the Concert Association, I will maybe start transforming Gabe’s room into Jeff’s room. Because here’s what I’m telling myself: I’m telling myself that I will begin the process of arranging for help two days a week after I get at least the downstairs sorted out, bedroom-wise.

plants and ants and trees and seas...

I am so due to write a Fisher Center blogpost. But too busy to formulate and sustain a thesis. So I’ll just ad lib here instead.

Today, at 1:33pm, when Jeff had just gotten up from a nap, he made a request that went something like this: Can I have a...drink...something to drink? At this point I try to ascertain whether he wanted orange juice, coffee or exactly what. No...not that...this is ridiculous...that stuff...I have it once a day...it’s a drink...Chardonnay!

This, actually, is something of an edited version of the actual conversation which at the time seemed pretty protracted, but I’ve typed enough ellipses. It’s just one of those markable moments. Not brand new really—I’ve been observing an increase the difficulty he has articulating thoughts for a couple months, but this one was marked. And also it highlighted the fact that he often has no clue as to time of day, since he is disinclined to request his glass of wine prior to 5pm.

Well, there you go, that’s what happens. I sometimes view the creep of Alzheimer’s dysfunction like a fog, rolling ever so slowly into new segments of the brain, trackable by external symptoms.

Meanwhile, I’m trying to put in a few months, or perhaps a few years, of being a grown up. Finally, perhaps. This is measurable by the fact that my yard looks groomed, a dead tree is down, and I am fully engaged in the hiring and management of an assortment of contractors. This might mean I can put my house on the market in the interest of switching to a lower-maintenance dwelling, or it might just mean I’m tired of feeling out of control and I’m just taking charge, money be damned. But you really can’t keep damning money, which takes us back to the lower-maintenance dwelling. When? Not sure. Check back. Never is one of the possibilities, but not the one I expect.

Our week at the Outer Banks of North Carolina was a fine one. Several days of gentle, navigable surf, and tolerable heat. Nice family too. It’s annual, and another one of those events that differs enough from the usual day to day life that you can use it to note the changes in a person who’s losing ground.

Last year Jeff went in the waves. Not for long, and I stayed with him, but I was not fearful that he would fall down. Big change in 12 months. Last week, a swoosh of foamy surf around his ankles would cause him to topple forward, and the one time I took him waist deep on a very gentle day he was quite discombobulated. I held him up and led him out. Katherine and I observed the obvious hazard on our last two beach days, when the waves were rolling in at random choppy angles. I could not let go of him in ankle deep water, as it quickly morphed to knee deep water, and we had zero confidence that Jeff would be able to stand up once he toppled.

I resorted to the method of beach-going my grandmother enjoyed in her declining years. I seated Jeff in a low-slung chair, just where the waves rolled ashore, so he could feel them but be in no danger of falling. He was happy.

frascati. It's Italian.

I really hate losing my mind. I wouldn’t do it if it seemed like I had a choice, but I probably don’t. I almost forgot to give the dog her evening snack for two days in a row, but each time caught a glimpse of her making her pathetic face and remembered, finally. Luckily, someone here has a brain.

Oh, the other thing is I’m getting Parkinson’s.* I might as well, my dad died of it and I’m all gangly like him, but weirder. Usually my clumsiness is worse in the morning when I’ve gone back to the coffeepot a few too many times. Caffeine jitters you say? Ok, maybe. That and the fact that my wiring and physical coordination have never exactly been state of the art could explain a few things, but I might as well have dementia and Parkinson’s because it seems neurological disorders are pretty much destiny around here.

Oh, and one more thing: Why are some people J.K. Rowling, and other people are not?

Something I am forced to wonder about is whether if you released J.K. Rowling into the Anne Arundel Medical Center complex of hospital and clinical buildings, would she be able to find her way from Parking Garage B to the office of the Greater Annapolis Medical Group? I actually did succeed in doing that today: It was down one ramp, through a door, past a barrier that indicated “don’t go this way,” down a stairway, across an outdoor place where people in cute scrubs go to smoke, in another doorway, down a hall, up a staircase, and around the corner. While it is possible that I have the worst sense of direction ever, I did that in both forward and reverse this afternoon, by paying careful attention. And giving Jeff verbal directionals. (“now we turn right,” “U-turn,” “up a curb!”)

I’m probably just mad because I’ve reached the final two stages (#s 21 and 22,) of Legend of Zelda: Twilight Princess, and I’ve realized—I don’t want to hit anything else with a sword, I stink at games like this in general, and I especially stink at this part. I’m inclined to force Gabe to complete the thing while I watch, just to achieve a sense of closure.

I will turn 50 at the end of this year. When I’m done being 50 I’m either going to laugh at myself or laugh at myself. I just hope I do it in a nice way, and laugh with me, not at me.

*not really, as far as I know. coffee, in fact, is thought to help.

They look good on me.

Today, when we stopped at the library, my sunglasses decided to surprise me by divesting themselves of the screw that holds the right earpiece to the frames. Still, I was able to manage for the next two legs of the drive by balancing them on my nose and one ear. “They look good on you,” said Jeff, who recalls that I recently got a new pair of glasses, and wished to comment in a helpful way. “Thanks,” I said. “They’re old and broken.”

I grabbed my not-so-trusty eyeglass repair kit (the one that comes with a small assortment of screws, none of which fit any known spectacles,) and we trundled off to lunch, me with the notion that I could fiddle with this project while we awaited food.

I don’t know why I thought that. I know I can’t do tiny work without magnifier glasses on, so I stashed the parts in a pocket of my backpack until we got home. Then I organized my tools. 1 tiny screwdriver, 7 worthless screws + the original which fell out, 1 pair of needlenose pliers, and the sunglasses, in two parts. Oh, yes, and my zebra-striped, supermarket +1.50 magnifiers, which I put on. “They look good on you,” said Jeff. “Thanks,” I said. “They’re just the magnifiers I bought at Whole Foods.”

After numerous false starts and a variety of attempts at ways not to drop the screw while finding an available set of opposable digits with which I could begin to screw it into place I did succeed in replacing the original screw. Otherwise it would have been Peeper’s Family Eyecare tomorrow. Where I get all my prescription glasses including my new set of progressives. Which, as it happens, Jeff thinks look good on me.

What will Terry do?

Last night I stayed up way past my bedtime (until 11:00pm, that is,) because I was watching a film made by Terry Pratchett on assisted suicide. It is called Choosing to Die, and it documents Sir Terry’s visits to a Swiss facility, run by an organization called “Dignitas,” which provides the space, screening, guidance, and medications involved. Also, he interviews two terminally impaired people choosing that exit strategy, and their loved ones.

Terry Pratchett (in case you’ve never read any Discworld, or Wee Free Men books,) is an English fantasy novelist who is contemplating the Dignitas option himself as a way to escape from the otherwise inevitable endgame of his posterior cortical atrophy.

Although I’ve known of Pratchett and his diagnosis for some time, this film was the first time I’d seen him in action, and I was struck by the amount of insight he seems to retain into realizing the scope of his illness-induced limitations. Sir Terry can no longer type, and he knows it. Instead he relies on his assistant to take dictation. Also, that he is able to conceive of and carry out the making of a documentary, and interview the people involved cogently and without seeming to lose the thread is evidence that Jeff has tumbled a good many steps below Terry, off the staggered cliffs of Alzheimer’s. Jeff could not determine the steps necessary to contact Dignitas. He could not understand why he’d even want to contact them. And these very factors bespeak a cognitive condition which would, in and off itself, disqualify him from the program.

I wonder, in a moot point sort of way, what I would think if Jeff were of sound enough mind to choose the Swiss option (which is, as I understand it, also available in Belgium.) I believe that I would be like the wife of the man in the film who is suffering from a degenerative motor neuron disorder and have to be supportive and cooperative. That said, I admit that we almost have to start with a reflexive reaction that says “What? No way! I’m not getting involved with that!” This is partly because you in no way wish to be complicit in someone’s death. Unless it’s yours, and it’s you choosing. Because there are not too many folks who’ve watched a partner fade into Alzheimer’s and not considered that—were it they—they’d want a way out. Short, sweet, quick. This is why I would have to go along. What if you wanted that option and everyone stood in your way, and told you you couldn’t...that you had no choice but to degenerate into fetal, mindless helplessness?

Lately I’ve been thinking about Jeff, and what he would have wanted. What would he have thought, as a hearty active 45 year old, of his life at 63? The existing Jeff does not meta-analyze. He doesn’t think about the fact that he can’t drive, put his pants on, wield a tool, have a conversation. It is one of the dubious “gifts” of Alzheimer’s that it often protects its sufferers from understanding what kind of condition they’re in. I know what he would have said. He would have wanted out. He would’ve said “no way.” It does me no good to know that. I have to deal with who he is now.

Well, this is why it’s “assisted suicide,” not euthanasia. When we euthanize a sick pet, we are choosing. When a human wants an escape route, he/she must be able to carry out the definitive steps him/herself, up to the final action of swallowing the potion. So, like most Alzheimer spouses, I’ll be on the boat ‘til it runs out of gas.

I wonder what Terry Pratchett will do? He acknowledges that, with AD, it’s tricky. He still enjoys life. He wants to keep writing, even by dictation. He feels that when he can no longer dictate a story, that’ll be the time. But will he still then be competent? Like the younger man in the documentary, who chose to go before his multiple sclerosis rendered him unable to take action, Sir Terry recognizes that he will likely have to decide before he’s really ready, and waiting too long is a choice by default.

tired.

Jeff does not need to be wearing Gabe’s shoes, but he put them on anyway.

Where are you going in Gabe’s shoes? I ask. Because we’re pretty much encamped here in the O.Henry Hotel, Greensboro, NC, for the evening.

Jeff chuckles, sort of. No wonder they didn’t fit right, he says. Then he takes them off and starts rummaging around for his loafers.

Where do you wanna go? I ask.

Jeff asks when we’re going home and I tell him tomorrow, after breakfast. I’m too tired to drive home tonight. And even if we wanted Gabe to drive, he didn’t bring his wallet and license. I told Gabe that he is an adult now and really needs to bring his i.d. with him almost any time he leaves home. He shrugged, ok. Luckily, at a small college like Guilford, where he oriented today, they believed he is who he said he is, and he got his college card i.d. photo taken, and his “quantitative literacy” placement exam completed, all without needing to prove his personhood.

Today was too much for Jeff, there was no doubt. Not that we did much. We had complimentary breakfast buffet, then hied ourselves to the Guilford gymnasium for orientation check in. We sat through some panel talks, walked around the campus a bit (yes, it was steamy...thank goodness for trees,) ate some dining hall lunch, and waited for Gabe to complete his math test. But it was clear, by early afternoon, that Jeff was spinning in circles every time I took his arm as a substitute for a temper tantrum, before faltering into the hunched, glaze-faced shuffle that characterizes Alzheimer victims who are typically more degenerated than he.

I take Jeff on outings almost every day. Usually to Punk’s Backyard Grill or similar for lunch, with a detour for restocking orange juice and bagels. He likes it. I’ve wondered if such simple adventures are enough. Answer: They are.

He will be happier at home the next time I take a road trip. He will be happier at home with me at home, but that’s asking too much. When we got back to the O.Henry this afternoon, I studied the ads for our local “AngelCare Network,” and “Home Instead Senior Care.” I was looking for, and found, the magic words “respite care.” Yes, I hear stories. And yes, I know that you don’t always get just the right fit with home-care helpers, at least not at first. And I honestly swear I don’t know how they make sure the bases are covered if you leave your person home with hired help for 48 or 72 or 96 hours. But I’ll be talking to them. This week, I think. We move Gabe in on August 18. I don’t know whether I’ll take Jeff or not.

coffee not a l'orange.

Ok. When someone is holding a mini cup of free coffee from Trader Joe’s courtesy counter is not the time to ask him to look at a Gala apple so as to ascertain whether it is this kind of apple which he wants. There is a chance that even when you point out that the coffee is now trickling onto the floor of the produce aisle, he will still be so fixated on the apple that he cannot remember how to right a cup. If this should happen, you will be glad that Trader Joe also keeps a healthy stash of paper napkins near the coffee. That way you don’t have to tell anyone there’s a puddle of coffee on the floor. You can just soak it up.

Trader Joe is a funny place to shop anyway. They have carts—both the older drab looking ones and the newer shiny red ones (you usually try to get a shiny one if you have an easy choice,) but on a typical day you can’t count on being able to push your cart very far without ending up in a bumper car knot with three other cart-pushers. So it’s easier if you park it at an end cap, in front of the mini biscottis, get Jeff to hold the handle as if it’s a very important job, and run down the frozen aisle on foot to grab some fettucini alfredo.

As it is not a large store, soon you will be finished and have everything you need except for the orange juice you came in for, but forgot. There’s a great deal on the sunscreen spray, located in blue canisters in a bucket at the end of each check out line. You will forget to buy one of those too.

It is probable...

It is probable that I just need to find the guts to hire help, rather than running away.

oh, this makes sense! *(∧_∧)*

I’m going to try to explain my itch to move out of the house where I’ve lived for 25 years.

10 years ago I would not have viewed uprootedness as preferable to rootedness. But 10 years ago I was a partnered version of myself, which was a me with a fundamentally different set of comforts and discomforts, assumptions, and wishes. And self-image. Apologies for bringing notions as navel-gazy as self-image into things, but it’s hard to avoid. As a partnered person I was happy to embrace “the old homestead.” As a not-partnered person (terms perhaps best understood by AD spouses...yes, I realize I’m still married,) I am not so happy with the same house forever thing.

There is an effect caused by becoming an AD spouse unusually early which I feel in spades. That is (and I know I’ve mentioned it before,) a sensation that you’ve been fast-forwarded past a part of your life which "should" be rather rich and fulfilling into the life of an 80 year old person. Again, no offense intended toward 80 year olds who should, in my estimate, be striving for rich and fulfilling lives, but I sure expected a different character to my 40s than I got, and staying...now and forever...in the old homestead makes me think this: It makes me feel like all the elderly widowed ladies who have ever lived on our streets, staying as fixtures in their old homes until they disappeared. Not that there’s anything wrong with that, ok? It’s a psychological problem for me though, see. I feel like I’m entering the golden years disappearing act before even turning 50.

Part #2. I don’t like maintenance. It scares me. I don’t like the idea of maintenance. That unsettles me even more. I would like to plant about 4 or 5 shrubs in a little back garden that the cat could sit in. (Ok...how is this different from moldering in place here? Good question. Maybe it’s not. But uprooting myself shows, for a minute, that I’m still alive.)

Part #3. I might, for all we know, be caregiving for decades to come. Well, probably not more than 2, but you cannot make assumptions about these things, and it is not useful to play “when and if” games, so you might as well structure your life in a way that attempts to provide serotonin-stimulation to your brain.

I realize that everything I’m talking about is a “way of looking at things,” and that, in theory, it is sometimes better to change an attitude than to make a physical change. I do not disagree. But physical changes can be fine too.

Oh, wait...I'm not quite done yet. I expect an objection along the lines of how extraordinary my house is, and how much personalization and hand-crafted work it contains. This is true. But, to imply that these features should somehow require me to stay here actually has the effect of making me feel more stuck than I would if there were no such compelling ties. Yes, it's wonderful and lovely. But that doesn't mean I have to keep it forever.

kissing coffeecups.

I can’t remember what Jeff was trying to tell Olivia’s lemon cake the other day. I do remember that Olivia was working somewhere else, the sink perhaps, and asked Jeff to please not hover over the two fresh out of the oven layers which were cooling on the butcher block. Because at first glance, that’s what you might have thought he was doing—inhaling their lemony aroma. At second glance it was clear that that was not his intent. He was speaking to them because he thought they were Olivia.

The truth, possibly subjective, is that Olivia looks even less like a lemon cake than Becca looks like a cat, and I’ve already mentioned the time that Jeff was asking Becca a question while posing it directly at the cat in the chair beside him. But such, apparently, are some of the quirky dysfunctions of a brain with an atrophied posterior cortex.

Sometimes Jeff likes to give us (as in me or his children) a kiss. A few days ago, as Olivia left for work at the hardware store while toting her morning mug of coffee, Jeff leaned over and gave the coffeecup a goodbye kiss. He frequently aims for my shoulder. I don’t know why. It doesn’t look much like a coffeecup.

Bag it all.

The thing is, I never really had a concept of myself as a particularly tidy person. And in fact I am probably not particularly tidy. In my nuclear family of origin, I may have ranked 5th out of 5 in terms of neatness, or it may just be that I’m comparing myself in an out-of-proportion way to a sister who had her awards neatly pinned in a line, her bed made daily, and her closet negotiable, whereas my room tended more toward being a victim of entropy.

Still, there existed a critical threshold of disorder at which I’d be distracted enough to mount a thorough cleaning initiative. Then, I’d spend a day or two strolling into my room and thinking how nice before entropy would gain another foothold.

I seem to have spawned at least a couple or so kids who don’t have that built-in threshold tripping their straightening instinct (those who do have such a thing may protest below.) Instead, piles of discarded garments, strewn in random fashion, do NOT cause them any apparent consternation, nor does a bathroom countertop cluttered liberally with empty face-wash tubes, smudges of toothpaste and other goo, and clothing tags which have been cleft from new items only to become decoupaged, by soap and shampoo, to the sink or its environs.

Their stuff tries to grow. As stuff goes, their stuff has a real empire-building inclination and tries, not infrequently, to assert squatters’ rights in the kitchen and entryway. I beat it back, with greater or lesser gusto depending on mood, but hold my turf all in all, leaving their bedrooms to roil like Calcutta on a busy day. Or at least that’s what I presume happens when no one’s looking, given the seemingly random distribution of objects.

I can’t remember where I was going with this. Oh, right...my attempt to help. At present, in the upstairs hallway, (the one with eight or so paint swatches on the wall, waiting—years—for me to hire a painter...we all have our issues,) I’ve taped two signs to the perpendicular walls of a corner. One says “give away,” and the other says “throw away.” Conveniently located nearby sits a box of jumbo sized black garbage bags for filling. So far, at least somebody has taken a little advantage and produced a few bags which I’ve helpfully carted to the Goodwill truck or dumpster.

It is my hope that by encouraging this de-clogging of space, I will be able to re-purpose certain bedrooms at the time it becomes necessary (for reasons such as stair hazard,) and move certain people who now reside upstairs, downstairs.

Pic: Lonely corner says “please feed me.” The picture hides the electrical box, and don’t even mention the paint swatches. Thanks.

NIHing.

4th Floor, Clinical Center, National Institutes of Health. I am parked in the waiting area, outside conference room 4C304, where Jeff is answering some test questions for Dr. Snow, the neuropsychologist. At least I presume he is answering the questions in some fashion. The last time Jeff participated in this form of testing was in 2007 at Johns Hopkins, and the results served as one of the the bases for our Alzheimer’s diagnosis. (Even though the neuropsych part itself suggested a variant which, we’ve come to realize, was the more accurate track.)

Among the things I’m sure of in life is that Jeff isn’t going to perform swimmingly on this testing today and tomorrow. Another thing I’m sure of is that he’ll be glad to have it over and done with at the end of tomorrow’s session. On the plus side, the results, combined with the two scans we’re scheduled to complete today—one an MRI, the other a PIB PET scan which highlights amyloid plaque deposits—will (I hope) provide us (as in me) with a good working understanding of Jeff’s precise species of difficulty, the relative slope of his progression, and a prognostication derived from those elements. In return, NIH gets another set of data to apply to current and future research. Oh yes, and I get a small helping of caregiver guilt, stemming from the fact (which became obvious once we jumped into this study) that Jeff has had enough of this nonsense. That we’ll be finished tomorrow is what keeps my engine pulling us over this one hill.

To my right, a blondish kid who looks like a linebacker for the peewee football league is playing around with the waiting room computer. Directly in front of me sits a bin for commingled recyclables. (nice going NIH.) To my left, a print on the wall called “Still Life with Otis.” Actually, it’s probably not called that, and Otis does not even appear in the picture, but the tablecloth is pulled so askew that I’m almost certain he’s been there.

Dr. Kreisl just popped by with the room service menu so I can make us a lunch selection. Thing is, I’d rather just skip the hospital food and eat the apples I brought (we had a big breakfast,) but I have a weird neurosis about not telling people “no. I don’t want it.” So I picked a tuna salad sandwich and some chips and orange juice. We will be happy to share.

try not to breathe this...

I got Jeff to talk a little bit about his days as a furniture refinisher. We were in the car, and sometimes that is the easiest place for insights or trapped memories to emerge from the cognitive nerve tangles.

He couldn’t tell me much—that he and his brother had done work for a dealer when they were in high school or college, that they’d worked on maybe 20 or 30 pieces, and that they’d done so with no precautions and in unventilated conditions. I heard the story in better detail in years past. Then he said “methyl chloride.”

”Methyl chloride?” I repeated. “Is that what the stripper was made of?” Yes. Google methyl chloride and you will find that its more common name these days is chloromethane. It has been used as a refrigerant, a solvent, and an herbicide, but now occurs primarily in industrial chemical processes. It also turns out that it has been deemed sufficiently toxic as to be no longer available in consumer products.

I cannot help but wonder if youthful exposure to a neurotoxin might be just the thing to set a brain up for the decades-long process that results in Alzheimer’s and its variants. Especially in light of my dad’s death from Parkinson’s disease. Dad speculated, after his diagnosis, that perhaps his neurodegeneration was launched in his teen years—when he heaved chemicals out of crop-dusting planes in rural Virginia. Herbicide again. I wonder if it was chloromethane? Not that there aren’t, undoubtedly, dozens of other contenders for things which you shouldn’t spend your youth enveloped in a cloud of.

I’m not trying to be falsely scientific. I can’t know what triggered either of their cases, but my personal hypothesis is that this early chemical buffeting is a strong possibility

.

Miss Nancy

Today, I am speaking like Miss Nancy from Romper Room. Actually, I probably speak like Miss Nancy rather often these days. I am going down (pause) stairs. If you want to watch t.v. with me later, you should come downstairs too! (smile)

The truth is though, you want to run Miss Nancy over with a truck, even if she’s the easiest person for you to understand. My human guidance system, meanwhile, is almost totally hands-on these days. Sometimes I take peoples’ hand. Sometimes an elbow or arm. Sometimes this is not a welcome bit of help. Like today, when we got out of the car at the hardware store. Jerked that arm right free. Sometime it is clear when you’re not being given full clearance as “competent human.”

I don’t want to be Miss Nancy or a jerk, so I think I am tiring of taking the class on excursions. Any place. Because verbal directions are about as useful as guiding a missile with chopsticks. This is not safe in parking lots. This isn’t really too safe anywhere that isn’t a wide open field. Anyway, I am bored with being Miss Nancy. I don’t even like her very much.

so rewarding

Last Spring I agreed to something called BGE “Peak Rewards.” This is something our gas and electric utility company promotes as a means of saving energy and garnering a few credits toward your monthly bill.

A technician fiddled around with our compressors behind the house after I signed up, and now they each have an odd little box riding shotgun, which sometimes shows a green light, but might—during the time we’re “cycled” to save energy—have a red light also.

This afternoon I didn’t have to call a repair company to tell ‘em our ac is broken, because I already tried that during a heat spell last summer, and they suggested I look at my Peak Rewards box. It had its red light on. Still, as the temp in our bedroom climbed into the 80s earlier today, it took me a few seconds to think of the reason. Woohoo. Peak rewards.

I did a little Googling later, to see how much evidence I could track down about how many people love it or hate it. Surprisingly, some think it’s dandy. They seem to be people who spend their days at the office, and come home to find that their cycling time has ended and the air’s kicked back to not-swelter. So it’s probably a combination of our Frank Lloyd Wright (the early years) cathedral ceilings upstairs hanging onto a batch of hotness, then releasing it to envelope the furniture when the ac let’s up a bit, PLUS the fact that we’re not usually out of the house when they cycle us that leads to my conclusion that this isn’t the deal for us.

For some reason I just decided to put up with it last summer. I think I don’t want to anymore. Tomorrow I must call BGE and request that they cease to reward us in such a manner as this, peak or no peak. Will they remove their boxes, or have we been irreversibly assimilated by the Borg?

The Porch

Outside is usually Jeff’s domain. Not that I’m never there—I must traverse the yard to get to my car, and I am responsible for any exterior maintenance that happens. Mostly, these days, that’s feeding birds and controlling insects. I’m just not big into trying to turn a suburban plot of ⅓ acre into the kind of masterpiece some folks value. And we’ve got too many shade trees to grow veggies, which might strike me as a worthwhile enterprise.

But Jeff, in the state of “can’t really do anything-ness” in which he exists these days, finds wandering about the yard a nice change from wandering about the house, and I can’t blame him on a day like today.

For the moment, I have toted my mini-Mac and my phone (so as to get updates from Olivia, if she’s detained at work) to the front porch, and the temperature (probably about 75℉ right here) and light breeze are the perfect accompaniment to one of those green rocking chairs I spend a summer trying to find and now don’t use nearly often enough.

Now I’m thinking of that first trio of rockers, ordered from L.L. Bean, which came “ready to assemble,” but wouldn’t go together no way, no how. I tried two of the three before requesting to return them. (One in partially glued together condition. That took a special box.) Shortly thereafter, those particular rockers disappeared from the Bean catalog, never to be seen again. Not surprising. I’ve often wondered whether if a passingly handy person like me couldn’t do it, could anyone? Later I ordered these ones (one of which I’m now sitting in) from a furniture company in North Carolina, and put them together with no trouble.

Anyway, the tulip poplar right in front of me is so enormous that it blocks about a quarter of my view to the road, but I can’t complain about its shade. (I can complain about the branch its sister dropped on my car in February though.)

But look—there’s Olivia’s car pulling up

(see? I see it.) Gotta skedaddle. Lunch and groceries to do.

And the Most Likely to Fall off a Cliff Award goes to...

I don’t know whether this is good for my brain or not.

Having exhausted my tolerance for the tedious portions of Epic Mickey (despite a continued impulsive inclination to be making Mickey jump gaps and pop spores,) I’m trying to move on. Arguably, I don’t have time to play video games. Equally arguably, I don’t care during my present life interlude. Escapism has its place.

So, based on a recommendation from someone named Nick, whom I don’t know, I’m trying The Legend of Zelda: Twilight Princess. We had it anyway. No waste.

With Epic Mickey, I had a little something on Gabe, since I was partway through my third play-through by the time his semester ended and he got home from Connecticut. That he pretty much lapped me from that point notwithstanding, I could still point out a thing or two, such as—where you can find robo-Goofy’s body parts, or whether it’s a bad idea to smash the pipe organ.

Zelda is a different story altogether. I’ve made it through the so-called Prologue on dumb luck and uncoordinated random shaking of the wii-mote and nunchuk, and arrived at a point where which button you push when begins to make a difference in whether you can proceed through the various battles or not.

Gabe likes to watch, if he catches me playing the game. I was stuck, knowing that I needed to retrieve an explosive spider-pod and heave it at a carnivorous plant, but failing utterly to execute the task. Here’s what could be overheard:

Turn around! Where? There! Over the gap! There’s a gap? Yes! That’s a gap! (at this point I make Link fall into the gap and lose health points.) No! Block that with your shield! You mean the Z button? Yes, lock on! Like this? No! That’s “item of interest”...don’t do that, just lock on! Don’t let it bite you!

Etc. You get the idea. By the time he’d coached me through saving the remaining two captive monkeys, he said “this is really strenuous...for me.”

I could see that it was, and pointed out the parallel that popped naturally into my head. “Okay,” I said. “NOW you know what it was like, teaching you to drive.” Because it was. Just like that. He laughed.

Then I was at the part where I had to knock a baboon off a perch and give it a good spanking while snapping, toothy, venus-fly heads lunged periodically. Perhaps I will begin to grasp the various 24 or so different buttons one can deploy on a set of wii controls. Perhaps not. At any rate, I broke the cardinal rule of gaming, handed the remote to Gabe, and said “here, you do it.” He did it. So, I got the boomerang I was supposed to snag next, and will move on from there with a hopelessly inadequate skill set.

I got the hang of Mickey, more or less, but this Link kid I’m operating in Zelda just has a few too many modi operandi for me to suppose that the hand-eye skills of someone who can’t even play whack-a-mole are going to get me through. And I still don’t know whether it’s good for my brain.

Say "cheese," brain.

We have a bad habit of coming to NIH and having things gum up. A couple weeks ago, on our last visit, an MRI was scheduled. Jeff has had at least four MRIs over the course of being diagnosed and serving as a vaccine study participant. Maybe five. But when I let slip that he got a bit of sterling silver installed in his ear 40 years ago for otosclerosis damage repair, and it turned out that NIH machines exude at least twice the magnetism of Georgetown machines, and after A called B, and B called C, and C called D, before D finally got back to A, our MRI was scratched in favor of a low-magnetism version next month. Instead that day, our major accomplishment was a second round of “convince the social work people we’re willing participants,” and sign some stuff. Which in itself is no small step.

Today, our final two PET scans were on the books. Yay, I was thinking. We’ll get all the scanny stuff, and all the related IV sticks out of the way in just one day, so we can finish up in June, wireless and drip-lineless.

No dice. All set, all stabbed, all peed and ready to go for scan one, it came to pass that the wizards who brew up radioactive injectable #1 had produced an inadequate quantity, thus tanking phase one of today’s 2 phase ordeal. So we are dozing in a chair, awaiting the passage of enough time that we can undergo what was to be scan #2 with a suitably empty stomach. Apparently injectable #2 is ready and waiting, and we’ll have accomplished ½ of what we were scheduled for.

Now the missing MRI and the missing scan are to be caboosed to days #1 and #2 of the neuropsych testing in June, and those, therefore, will be more exhausting days than we’d wished. Still, science ho! I presume our contribution will proceed as rescheduled, and we can officially retire from clinical research.

Because, frankly, I perceive our interest level and understanding of what we’re up to to be flagging like an untrained XC runner on the home stretch, so I’d counted on the easiest of final visits. It’s okay. I can be the Little Engine that Could, and get our circus train over that hill in June. It’s just that I’m starting to feel a little bit like a blue meanie, herding a volunteer who has no volition himself, but simply trusts me.

p.s. Scan #1, which was meant to be scan #2, is happening as I type. I sit here, watch the timer, and hope Jeff remembers to hold still so we don’t add any monkey wrenches to the tool clutter. Next: food.