That Was The Week That Wasn’t

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.


A bright, golden haze

Something very strange has been happening lately, something very strange indeed. I am almost afraid to mention it, because it’s the kind of thing that if you talk about it, you can jinx it.

This, before getting to my point, brings me to my word history lesson for the day. I subject you to these lessons because I find them fascinating, and as soon as I learn something new I am compelled to tell everyone else. The word jinx appears to come from the name of a bird, the wryneck. The wryneck is a type of woodpecker that can twist its neck around in a creepy way, as if it’s “jinxing” you. And what is its Latin genus? Jynx! There you go. Consider yourself etymologically enhanced.

Jinxing something by talking about it, by the way, which is also not getting to my point, seems to be related to baseball, specifically to a pitcher pitching something that isn’t, that is, a no-hitter. If you talk about how there hasn’t been a hit, there will be a hit. Hey, no hit! Hit. Or four-letter words to that effect.

My point is, to get to it, I figured out how to get to sleep.

Oh, big whoop.

Stop yawning, all of you. I know you’ve been sleeping since you were infants, and so have I, but I lost the ability to do easily about 25 years ago and it has been horrible. It became particularly problematic when we moved from Maine to the Outer Coast in 2004, 3000 miles and three time zones away from everyone I worked with in Florida, where they all started work before the sun had even cracked an eyeball out here (which, given the weather, was only about one day out of 23 anyway). Suddenly my secret luxury of snoozing until I absolutely had to stumble to the computer in my jammies was cut short.

Working from home, as I had been doing since the early 1990s, is a great solution if you have the right kind of job and the “right” kind of health problem. M.S. is one of those health problems, especially if one of the worst symptoms is fatigue, which it is for me. This is not fatigue like you did a bunch of yard work fatigue, or you hiked the Appalachian Trail fatigue, or you just swam the English Channel fatigue. Unless you had a Bradley tank strapped to your back while you did it. That’s just an approximation, of course. And it only covers physical fatigue, not the mental fatigue and emotional fatigue that comes with M.S. also.

Bradley tank, unstrapped

A Bradley tank, not strapped to my back

But now that I was in Olywa, my decent arrival of 9:00 AM was their indecent arrival of NOON WHERE THE HELL HAVE YOU BEEN?!?!?!?!? and they understood intellectually about the 3000 miles and three time zones and everything BUT WE HAVE PROBLEMS HERE YOU KNOW and how was your weekend WE HAVE BEEN WAITING ALL MORNING WHAT DO YOU MEAN YOU HAVE TO REBOOT??? so I usually didn’t talk too much about not sleeping well with my co-workers.

Speaking of co-workers, I once worked for an editor who was very persnickety about the word “co-worker. He gathered the entire staff around him one day, all 50 of us, and explained in great detail, how we must never leave out that little hyphen between the “o” and the “w” because if we did, you see, we risked, and he said this with all seriousness, we risked people reading it as “cow orkers.” I do not know what an “orker” is. Maybe that is why he was the editor and I wasn’t.

Anyway, years of sleeping pills, sleep routines, mind-numbingly bad books, mind-numbingly bad TV, guaranteed sleep this, and guaranteed sleep that, you name it, done it, tried it, all came to a nightmarish halt during the 20-day vacation at Providence St. Peter Hotel Hospital last August. Somewhere between trying to impress the nurses on the neuro ward by being the ideal patient and trying to get away from Fox News All. The. Time., I stopped sleeping, even with the yummy hospital drugs.

But the yummy hospital drugs did teach me something. They taught me haziness. And for this I have to thank the nurse in the rehab unit, who was always willing to strap me back into bed at night when I tried to wiggle free, and snarl, “Get some sleep,” at me. It was for my own good, really, because she knew I was going to have to gimp-walk the next day in front of incontinent old ladies and brawny young men who’d run their motorcycles off the road and would never walk again. Telling me to get some sleep was really telling me to let the haze from the drugs wash over me until I could at least remove myself a degree or two from my surroundings.

I believe the technical term for this is daydreaming, but I’ve also heard it called dissociation. Depends on what professional degree you have. Since mine is in English, I’ll stick to calling it daydreaming, even though I try to sleep mostly at night, except for naps, which I tend to do during the day. Friends of mine who have practiced dissociating professionally tell me that you can get dissociated permanently if you’re not careful, sort of like crossing your eyes permanently, if you cross them too much, or going blind if you—ahem—do something else too much.  I hasten to add that my daydreaming is strictly G rated. Well, PG rated. Well, M sometimes. Never beyond M. Really. What sort of girl do you think I am? My brain is not that damaged.

The haziness lets my thoughts go off into my comfort zone of warm images from my life, off to distant places of fond memory, back to pleasant scenes with friends and family, cozy moments when Band-Aids fixed everything, quiet moments sitting under forsythia bushes and studying pure gold flowers against pure blue sky, an unbreathable time watching a flock of cedar waxwings feast on a tree of apple blossoms, a brilliantly bright time of my son smiling at me when I finally open my eyes at the hospital.

Sleep seizes the moment to steal over me, to claim its power over my worries about all of the cuts and bruises in our lives. Ah, if only Band-Aids still were the only cure for everything!

Well, enough of that. Now, if any of my former cow orkers are reading this, would you mind setting your clocks back three hours? I need a nap.

Shifting gears

And in one swell foop, the foot is on the other shoe. I mean what comes around goes around. I mean you don’t know what you’ve got ‘til it’s gone. I mean tomorrow’s always better than yesterday.

I mean that CF broke her arm.

This is not good. It is her right arm, which is the wrong arm for her to break, not that there is a right arm to break, but this is definitely the wrong arm, because she is right-handed. Thus she is immediately hampered in everything she does, including but not limited to everything she does.

For example, when we went to go to the hospital on Sunday, the day that she broke her arm, my car keys could not be found, because someone who shall remain nameless (but amazingly has the same initials as I do, not to mention the same name) did not put them back in the one and only place where I keep them and CF was in such pain that we had to take her car with her steering it and me shifting. That worked out fine, because her car has power steering and she could steer one-handed.

But coming home she was completely bonkered on painkillers so strong it took two nurses to wrestle them down her throat, which meant that I had to drive, which presented a problem, because, unlike my car, her car does not have hand controls, which I use to drive. Oh, I probably haven’t mentioned that before. I use hand controls to drive. That way, my feet are useless appendages in the car. My hands do all the appendaging.

The last time I used my feet to drive was, coincidentally I swear, the time someone ran into me head-on at an intersection (the other driver was at fault I swear—she got a ticket, I was at a dead stop waiting to turn left and she came straight through a yellow light in a left-turn only lane) and it wasn’t until we were halfway home from the hospital that I realized I was driving the very same car that that accident happened in. I should point out that I did use my hands on the steering wheel and used my feet only on the pedals, as I am sure most of you do. It is only in my car that my hands are used exclusively. Nowhere are my feet used exclusively. But my hands and feet did get us home, seven appendages unscathed, one scathed but splinted.

Speaking of being hampered in everything she does, I had to secretly wipe my brow and thank all of my lucky stars that she broke her arm right after she finished cleaning nearly every room in the house. Phew. I would not have looked forward to doing that. Now I need to clean only our bedroom and bath. She had even picked up all of the dog poop in the back yard.

The truth is, CF does more than her fair share of everything in our household, because I had this Thing happen last August, which is why I keep wondering Who Stole My Brain to begin with. I can, when pressed, zap a dinner for myself and can even cook a frozen pizza for our son, as long as CF writes down the directions every time, but beyond that I am of little use in the kitchen. I did drive through Crap-in-the-Box for him for lunch the day he surprised me with a trip to his teacher’s office, which showed more motherly skills in one day than I had for many months.

But the whole cleaning thing tends to make me nauseated, all that up-and-down motion, not to mention back-and-forth, not to mention to-and-fro. (Is “fro” short for something? Seems like it should be, because it’s sort of short. But no, just fro.) I used to love to vacuum, but now just the sound of it makes me ill, just like the smell of watermelon makes me ill. Not to mention cantaloupe. I am not good around melon salad. Or sucking sounds.

It is largely propitious that I started to drive before CF chose to dance on her wrist bone, don’t you think, so that I did not have to start driving in the heat of the moment? I spent most of Monday driving one or another member of my family to one or another doctor, and for the first time in many months none of the appointments were mine. I had to take a two-hour nap when we finally got home at 4:30.

And really I have no idea how I am going to muster the energy and skills needed to keep our household in livable, sanitary enough condition to support the three of us. We will at least have milk, because that is home-delivered. And, if given enough sitting-down time, I think I can haul our never-ending supply of daily newspapers to the recycling bin, and I think I can nag our son into hurling the trash to the curb and dragging our dog around the block. And even though I failed this part of the test at Brain Retraining School, I’m pretty sure it’s dishes into the dishwasher and clothes into the washing machine, right?

But is it the dog or the boy who gets the big rawhide treat?

One lopsided circle

I remember walking into my grandmother’s house and suddenly there was a full meal on the table. I have a friend in Maine who somehow produces shortcakes by the dozens without moving a finger. My own partner, CF, can do a little spin and clean the kitchen in an instant.

I used to have one of these magical powers. I could install and understand software in 10 seconds. People flocked from miles around to have me burp their electronic marvels back to harmonious buzzing. My nephew wrote his college application essay about how I introduced him to computers, and now he’s finishing his degree in computer science. I glanced at new hardware and understood it. I was a full-fledged nerd.

But then came Aug. 28, 2011. That’s the day that lightning metaphorically struck me, scarring my brain exactly at the spot that gave me my wondrous power over computers.

It’s been over five months now, and I went through a grueling test of my lack of power today. I needed to put some antivirus software on an old computer for my son, so he could use it for his online school (he’s going solo this year). Now, this normally would have been a snooze of a job. Click a few keys, go get a cuppa. Instead, it turned into two hours of now I understand why people hate computers.

As I said, it’s an old computer. I cranked up Internet Explorer and went to the Comcast website, where, as a subscriber, I can get antivirus software for free. Oops, Comcast tells me, I have to have IE 7 or later, and this old buzzard has IE 6, which, fortunately, has a Windows Update button. Otherwise, I’d be lost.

Windows Update is an automatic tool that comes with Windows that’s supposed to run at certain intervals to figure out if your software needs to be updated. This old buzzard hadn’t even been turned on for a while, so nothing had been run. So first, Windows Update has to update itself, which requires a reboot. So, OK. I’m game.

Now Windows Update presents me with a list of Required Recommended Suggested Essential Probable Estimated Punctuated Quadrupled Actuated Separated Updatable Updates Among Which I May Choose Select All Select None Start Over.

Since now I am lost, I select Select None. Then I hunt through the list, which is longer than springtime, find Internet Explorer 8, which I believe is even younger than Internet Explorer 7, and click it. My luck holds, and in just a few seconds it is downloading and installing onto the computer. I am gayer than laughter.

The computer prestidigitates, and Internet Explorer 8 shimmers into view. Back to the Comcast web site I glide, feeling quite like my pre-Aug. 28, 2011 self. Download, install, click, click. I grab the Sunday paper and wait. The old buzzard is slow.

I don’t realize it now, but I have fallen into a trap. Some undamaged portion of my brain has recognized that I am performing a task that I’ve done many times before, and performing it well, and is bathing my brain in chocolate-covered waves. At the same time, the damaged portion of my brain forces me to keep sneaking a look at the monitor, as it obediently marks the progress of the installation.

And finally the trap is sprung.

The installation finishes, and I allow a smile across my face. I have succeede—What?? Not enough memory?

The antivirus software says it doesn’t have enough memory to run on this computer. All of those chocolate waves are gone. In their place are pulses of pain from behind my eyes moving backwards.

Having written software for a living, having written software installations for a living, I try to count the number of places a decent programmer could have written code to check to see if the computer being used was suitable. Obviously someone checked to make sure the right version of Internet Explorer was available. From what I recall, it is easy to check if enough memory is available.

Too many places. I can’t count them, the places a decent programmer could have checked memory, before I spent two hours rebooting and downloading and waiting and installing. I don’t know if I can’t count them because there are too many, or because my brain is addled, but in any event, they are there, and I have spent two hours going in one huge lopsided circle.

Nothing to do but take a nap. Without a diaper. I’m home, after all. No one’s chaining me to the bed.