My sister and I engaged in some long-distance web cam beach bumming this week, although only one of us got any sun.
She was lounging on the lovely white sands of Long Beach Island in New Jersey, hoping I would be able to find her on one of the many web cams that poke their nosey lenses along its 18 miles, while I was snuggled in my nice and chilly 70-degree centrally air conditioned house in Olywa, some 3,000 miles away.
I could picture her with the sand between her toes, the salt air—nah, I couldn’t. I couldn’t find her on any of the beach cams anywhere on the island. All I could do was imagine what it felt like.
That was pretty easy to do. I’d spent hours on those beaches, hours tossing her daughter high into the air, watching her splash down into the water laughing excitedly. I’d spent hours watching my son and nephew boogie their boards over the obliging sands, and I’d gladly tasted the “original” salt water taffy again and again (and again) as required by law.
But now: now I am all about 68 degrees and dark, or 70 degrees and partly cloudy, or sugarless tasteless taffyless candy. Pardon my outside voice.
Because SHE gets to spend the summer lolling about the banks of Saranac Lake swilling down gin and tonics while her husband spins about in a power boat giving debutantes and their dates another thrill at water skiing until it’s time to head to Barnegat Light and a week of glistening at the Shore while I get to FESTER in a darkened, moss-riddled house, stumbling my way from room to room, grateful only that I do not SWEAT and thus suffer the consequences of an M.S. exacerbation.
Barnegat Light. How easily I used to climb your stairs. How casually I used to take the view from your top. Hah. No more. Farewell, my Barn. Gone are the days when I can climb your irregular rungs. Farewell, my friend.
Farewell, too, to the beaches, to the wide, sandy expanses of sandy sand. What a challenge you always presented, trying to walk in the shade created by other footprints, the only small pockets of coolness to be found in your vast expanse. Without their small respites, it was one bit of hot pocket after another until the relief of the tideline, where, inevitably, the jagged edge of a clamshell would await me.
Ah, but if it’s farewell to the beaches, it’s farewell to the sandy shoes, and who could ever miss the sandy shoes? Who could miss having to take off and empty again and again a shoe that does not, no, it does not contain a grain of sand, no matter how much it feels like it does? It is only my absurdly sensitive feet, can I not get used to that? Yes, they had sand in them when I left the beach, and yes, maybe they did the first time I emptied them after that, but after that they didn’t, and no, we will not stop the car again so I can empty them again, no matter what I say.
And farewell to that $%%@ saltwater taffy, that stuff I’ve been eating since I was 8 years old, that stuff that comes in a collectible fake barrel that used to be made of papier-mâché (but now are cheap plastic; my mother always cautions me to be sure to hold on to my papier-mâché ones) and about a zillion flavors. I’ve always been partial to the licorice and clove and cinnamon flavors, the flavors no one else likes (clever of me, eh?) but what with this stroke-induced diabetes any flavor is forbidden except of course their stinko normal sugar-free flavors. Why bother?
And yes, farewell to my sister, wasting her time on the beaches….no, wait….there she is! I see her! Next to the lifeguard! In the red chair! Hi Cindy! Wave to me! Wave to me! Wait! I’ll call you on your cell! Wait!
Ah, vicarious living is great! Hmm. Maybe I’ll start a magazine: Vicarious Living Today.
From the time he was little, CF and I have tried to impress upon NF that boys and men don’t wear hats indoors, no matter what all the sports heroes, rap stars, and his own uncles and grandfathers do.
It hasn’t been easy. And it gets even harder when he see girls and women wearing hats indoors, even if it’s in church. Explaining why this is considered acceptable just plunks us down into a good old-fashioned gender role discussion, one that we find we are surprised to find ourselves defending.
But this really has nothing to do with what I want to discuss, but as always I will digress. What it all comes down to is our old-fashioned insistence on NF displaying old-fashioned good manners. I don’t mean knowing his salad fork from his fish fork; I mean speaking nicely to relatives and friends, and observing common human courtesies. This includes dressing decently and speaking non-obscenely.
Our efforts to de-hat him indoors have been pretty successful, although now that he has gotten all of the hair shaved off his head, I’d just as soon he kept it covered. He had unruly hair until a few years ago, when his entire baseball team decided to shave themselves bald for good luck, and he’s kept the look, despite his rather lopsided head, ever since.
On the other hand, I’ve taken to wearing hats myself more often than not, no matter the status of the roof over my head.
The hats that women are allowed to wear inside are the fluffy-duffy Easter bonnet kind, the ones covered in feathers or flowers that you store in boxes covered in feathers or flowers and stack neatly in a closet, the kind of box that Audrey Hepburn swings from her arm as she saunters down Fifth Avenue.
The hat that I wear inside is a baseball cap. Not the perky kind that you might see the chirpy 25-year-old moms wearing at toddler t-ball practice, the kind where you can stick your pony tail out through the opening in the back so it bounces around all perky, the kind that says something cute on the front, like, “All Kids Finish FIRST!!”
No, my baseball cap is the real thing, smashed down low over my eyes and tilted to the right, the better to block out the light from the lamp on the table next to me. I want the lamp on so I can see, but I cannot bear the peripheral glare. The lamp has a normal light bulb in it, and I know it does not really make any noise, but to me it gives off a perpetual buzz-light, a constant whine-light, one of those fluorescent nicks of a scraping dental drill on the tops of your teeth.
And that sets off those headaches I’ve been moaning about for a while. Jamming a baseball cap over your eyes has not been endorsed by the FDA as an approved method of headache remedy, but it does give me something to do while I wait for the extra Topimax to kick in. Just last week my neurologist prescribed an additional drug to try to really kick the headaches out of me, so we’ll see how that helps.
I’ve always been a bit sensitive to light, I admit, but it has gotten significantly worse in the last year. I didn’t think much of it when I started jamming caps over my eyes shortly after The Blitz because, after all, I’d just had a stroke, and it kind of made sense that my eyes would be sensitive.
Everything was sensitive. Bed sheets were sandpaper, water was bullets, music a screech, sun light a pulsing torch—so a baseball cap seemed like a small concession. A couple of earplugs and sunglasses and a walker and several layers of polar fleece, not to mention round-the-clock seizure medication, and I was completely normal, right?
All of those efforts to block my senses have waxed and waned over the past year, but I’m wearing the baseball cap more and more. When pressed, I substitute a cheap, slightly Australian-looking crusher hat (emphasis on the words cheap and slightly), mostly because I figure it’s better to wear an extremely neutral, colorless beige pseudo Aussie hat than a definitely maroon baseball cap with a red polo shirt. My brain damage has not affected my inner color wheel. It exists in exquisite sharp detail and in fact hurts my eyes very often.
The Aussie-ish hat is for outdoor use mostly, and CF, being a good sport, pretends she is not embarrassed by it. For NF’s baseball games, I have an orange and black baseball cap from his team, and he dare not complain about that.
There is a trend among the adults associated with youth athletic teams these days called fanwear, which can add significantly to the cost of youth athletics. Adults are more or less expected to purchase tee shirts, sweat shirts, sweat pants, caps, and other paraphernalia emblazoned with the team name and perhaps their athlete’s name and/or number, along with their athlete’s uniform and wear this so-called fanwear to games and/or practices. It’s pricey stuff, especially once you start adding in grandparents and siblings, not to mention practice gear for the athlete.
Digression alert: skip this paragraph if you are not interested in a vitally interesting digression. This is your word history lesson for the day. Paraphernalia has an interesting etymology. In law, it is considered the property owned by a married woman that is not part of her dowry; that is, that is not owned by her husband.
At baseball games, with my fanwear hat, I can wear my fanwear sweatshirt and my fanwear sweatpants and be fanwear fantastically fantastic. Also fanatically identical to nearly every other fan next to me, the only difference being those who have chosen base black or base gray for their outfits. In either case, our senses are properly dulled against the cold, should there be any, as there often is, especially if we huddle together in front of our trusty propane stoves and layer the fleece blankets across our legs.
If it is hot, off come the sweatshirts and sweatpants to reveal, in my case, a modest fanwear tee shirt and shorts one can only purchase from L.L. Bean. The other mothers have on fanwear tank tops and shorts that allow for a tan. I keep my regulation baseball cap jammed down to keep out the sun.
NF is lucky in that he is allowed to wear his regulation baseball cap in the dugout and in any restaurant his team might go to afterwards to celebrate an especially important victory, although should the parents be there, we tend to glare at them until someone rolls his eyes in that particular way all parents purse their lips at, and someone finally removes his hat, which causes all the other players to look sheepish, and they too remove theirs, and then pizza is consumed in relative good graces.
Having a short fuse can be handy. If you’re going to lose your temper, it helps to do it as near as possible to whatever it is that gets you angry in the first place. It makes it easier to solve things that way.
I mean, really, what good does it do for me to sit here stewing over a list of perceived minor infractions allegedly committed by CF until a long fuse finally burns down and I erupt over something absurd? Might as well erupt over something reasonable when it happens.
For instance, pronouns.
Me no get the pro of noun. Put too many in a story and lost is me. Or I. Woe me. Whoa.
CF is a pretty good storyteller. She knows how to introduce her cast of characters, set the scene, get the flow going. We’ve been swapping tales for years, work stories, childhood stories, you-won’t-believe-this stories, you’ve-told-me-that-four-times-before stories, no-wait-let-me-finish stories, and so forth.
We are such compulsive story tellers that we even have a rule to stop ourselves when the other needs a break: The Three Time Rule. Just hold up three fingers to invoke it, and the other person must stop. We inaugurated it to stop ourselves from reading all the good stuff in the newspaper to each other, but now we use it whenever one of us starts to get carried away on anything the other wants to savor herself.
When CF comes home from work, I usually stop what I am doing (which this week is frantically writing obituaries for my college magazine) and we decompress for a few minutes in the comfy chairs, and she gives me a rundown of her day.
Her particular field of work happens to employ mostly women, and everyone in her department happens to be female, except for the head of the department. Therefore, almost all of her pronouns are female. This has been true for many years. It has never presented a problem to me when she recounts stories.
Last night, however, the fuse blew.
“Pronouns!” I shouted at her. She was a bit startled, I think. I was more than a bit confused.
There weren’t that many people in her story, but I had no idea who was who or who was where or what was going on when or why. Somebody was something somewhere was all I knew. I needed a proper noun and I needed it now. Either that or I needed little dolls to act it all out.
Screaming “Pronouns!” at someone isn’t much help, I know, because it implies that you want more pronouns, when the opposite is actually the case, but it was all my brain could muster at that point, since it was all my brain could focus on. The pronouns were dripping off every inch of gray matter left inside my skull (and believe me, I don’t think there’s much there), clogging up any hope I had of making sense of anything.
How old are children when they figure out pronouns? “Bobby want milk!” “Bobby, can you say, ‘I want milk’?” “Mommy want milk?” “No, Bobby, you want milk.” “Bobby want milk!”
Clearly I am not going to get the people around me to salt their conversation with proper nouns rather than pronouns. I’ll just have to get good at guessing what’s going on, or asking CF later, or interrupting by saying, “You mean Gertrude?” or whatever is appropriate.
I suppose there is some sort of parallel between pronouns and computer programming, in that pronouns are indirect references and programming involves indirect references. So perhaps it makes sense that pronouns are another area of my brain that fell into the black hole of brain damage.
Speaking of black holes, I dared to approach the programming black hole the other day. Those obituaries I’m writing came with a CD full of short profiles from the college, 125 of them, but they weren’t ordered in a way that made sense to me. I wanted them ordered in chronological order by year of graduation, since that’s the order they will appear in the magazine. Instead, they were ordered on the CD by first name, with the class year tacked on the end.
Not to bore you to tears, but this is what typical entries looked like:
Grover Cleveland ‘48
Thomas Jefferson ‘36
Zachary Taylor ‘52
And this is what I wanted them to look like:
36 Thomas Jefferson
48 Grover Cleveland
52 Zachary Taylor
Any decent programmer would be able to whip up a few lines of code to take care of that in a few minutes. Since I am no longer a decent programmer, I stared at the directory listing for, oh, 10 minutes or so, muttering dark and unprintable things.
I no longer have any of my whiz-bang programming tools on my computer, which is just as well, since I could probably cause grave danger if I did. But I do have Microsoft Word, which has a programming language in it, something that most of its users try to avoid, because it is incredibly poorly documented and stupidly put together. It has annoyed me from the first day I was forced to use it for something because you have to practically offer burnt offerings to Redmond, home of Microsoft, just to get it to select a block of text.
Word’s programming language is this uneasy amalgam of super-duper power-mongering world-conquering giant programming concepts and diddly-squat rinky-dink move-the-cursor-one-letter-to-the-right word processing commands. Definitely schizophrenic. Programming it goes like this:
CHANGE THE WORLD now scratch your nose.
What possessed me to think that I could manipulate the names of these little files in Word’s programming language is beyond me, but before I knew it, there I was, indirectly referencing Grover Cleveland like he’s never been indirectly referenced before. In fact, I indirectly referenced him so indirectly that it is clear he will not be back in time to serve his second term.
This in fact explains why he is the only president to serve two non-consecutive terms as president. He was caught in a bad programming loop.
Fortunately, I had the good sense to give up the task before ruining the entire chain of presidents. I found a perfectly serviceable third party utility that did the job of renaming for me in just a few seconds. It handles all kinds of nifty things you might need to do with file names.
I’m considering writing to them to see if they can add a pronoun option.
The calendar tells me that last week happened, but I remember little of it. CF and I dragged ourselves home from California late Monday night and the next thing I knew, we were at a Friday barbeque with her co-workers (note the correct hyphenation). What happened?
Fatigue. Bone-stealing, mind-crushing, life-squashing fatigue.
But before I go any further, I must make it absolutely clear that although this fatigue is the worst part of all the M.S. and post-stroke garbage, it was worth it this time. And for once, CF agrees with me.
It was worth flying to southern California, sitting in the hot, unshaded bleachers of a ball field, cheering my lungs raw, watching my son get the BEST HIT (one of only three his team got) against a far superior team from Hawaii (it SAILED over 2nd base, dropped in neatly for a solid single). It was worth it to see his smile as he stood on first base grinning at himself about it. It was worth it to see him trot onto the field in the next game, against another superior team, to hear the announcer call his name as he modestly scooped up the warm-up balls. It was worth it to see him completely at ease with all of his friends, horsing around in the pool at the hotel, eager to explore the gaudiness of SoCal now that they were out of the tournament of 13-year-old Pony baseball teams.
And now that they were out of the tournament, CF and I could return home with clear consciences. She had to return to work (big deadline) and I had to return home (couldn’t continue without her help). Believe me, we wanted them to win, but we knew, no matter what, we wouldn’t be there to see it if they played past Sunday.
And then came Tuesday and Wednesday and Thursday and most of Friday, all of which passed without me knowing about them, with me not asleep so much as sprawled across the bed or the floor or some air conditioned horizontal surface relatively close to plumbing (both intake and outgoing) that CF could find and crack open my jaw on a regular basis and pour in a protein source every so often.
I know we drove up to Seattle to pick up NF from the airport on Thursday, but consciousness doesn’t really return until the barbeque on Friday, when we were entertained by a future Olympian named Tom-Tom, toddler son of a co-worker, who will win a medal of some sort in a sport TBA in 2032, as long as it involves kicking, catching, falling on your butt, and making adorable faces, especially if it uses a ball that comes up to your knees.
NF specialized in badminton at the barbeque, which is unfortunately not his sport, which I lament, since I used to be a pretty fair badminton player. Don’t laugh. Badminton is a very aggressive sport, and I have the friends to prove it, one a state champion in college, and she will happily stuff a shuttle down your throat. It’s the second-most popular sport in the world, and that pathetic little plastic thing you use in your backyard is made of ballistic cork and bristling feathers in the real world, and travels at 200 mph on the real courts and makes big, ugly bruises. Backyard badminton is to real badminton as t-ball is to major league baseball.
After the barbeque, I fell back onto the floor or the bed or the bathtub until Sunday morning, when we celebrated our nephew’s 19th birthday, something I very much wanted to do, since I care very much for him, and I think I managed to stay awake for all of the time I was there, but you would have to check with him. I know I haven’t even looked at the Sunday papers yet, normally my preferred form of worship, and it is going on Tuesday evening as I write this.
And it being Tuesday evening, it is over a week since we arrived home and I still want to do nothing but lie on a horizontal surface and close my eyes and will the world away. But I have too much to do, including a major assignment for the college from which I graduated, one that occurs thrice a year, one that I enjoy, although you will probably think I am a bit odd for doing so.
And it being Tuesday evening, it is over a week since I posted my last blog entry, and for that I apologize, but when one cannot move, one cannot write. In fact, one cannot even talk. One cannot even mumble. One can indicate one’s preference for protein source (yogurt vs. cheese, for instance), and one can indicate one’s preference for television source (MSNBC vs. PBS, for instance), with, perhaps, a wobbly wiggle of a finger before lapsing back into another period of fetterless narcolepsy.
One can indicate one’s appreciation for the care one’s partner administers, by casting a wan smile in the appropriate direction at what one hopes is the appropriate time, and one can indicate one’s joy at one’s son’s skill at baseball by casting a weak thumbs-up in the general direction of the blur of one son’s shadow when she hears his voice, and one can indicate one’s anticipation of tomorrow perhaps being the day when at last one can stand on her own two feet and walk about the out-of-doors and perhaps fetch the mail on her own and maybe drive to the store and buy a new basketball net for her son since the rain rotted away the old one (quel surprendre!).
Such is the world of M.S./post-stroke fatigue, which I normally do everything I can to avoid. I usually avoid the sun, and I usually don’t get overheated, and I usually don’t get overtired, and I usually don’t “do too much,” and I usually “take care of myself,” and I usually blah blah blah blah boring boring boring.
But sometimes you just have to say, “Who cares about my health? This is my child.”