Tag Archives: M.S.

Notes on Being a Fake

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There are three ways to be a Fake:

  1. Unintentional
  2. Egregious
  3. Internally painful

For the purpose of this discussion, we shall dispense with the first two types rather quickly, since it is the third type in which we are principally interested, this being my blog and me being, unfortunately, the third type. Your opinion may vary, in which case you are a second opinion and you may write your own Note on Being a Fake, which you may send to me at your own expense.

Additionally, our discussion will be limited to Fakery as it refers to recovery from a stroke and/or life with M.S. and/or other such life-challenging situations. Fakery outside of this narrow field of health issues will not be considered.

Additionally additionally, I am giving my Observer to these discussions a Fake Name. I had to think for a while to come up with a name not likely to occur in human beings, and finally settled on Nilla, as in ’Nilla Wafers.

The Unintentional Fake
The Unintentional Fake is often not a Fake at all, but appears to be one by being over-enthusiastic about gains in health recovery, such as a gain in ability to walk, or speak, or even recover consciousness. The enthusiasm can be on the part of a patient or a caregiver or a health professional (doctor, nurse, etc.). The enthusiasm is genuine; the over-enthusiasm curdles it.

The Egregious Fake
The Egregious Fake usually has absolutely nothing physically wrong with him or her but wants you to know all about it. His cold is much worse than yours. Her knee is too painful to help carry those boxes into the house. He’s worried about his terrible headache—he’s had it for days. She hasn’t slept for weeks. But wait! Who’s that strolling out of the bookstore carrying an armload of books? Why, it’s your weak-kneed friend! And she’s with her friend who has overcome his intolerance to lactose and is enjoying an ice cream cone! The Egregious Fake is worrisome to be around until you realize that he or she is in fact an Egregious Fake and not For Real.

The Internally Painful Fake
The Internally Painful Fake walks among people every day, and she sees the judgment in Nilla’s eyes. Nilla sees my cane, and her eyes say, “The cane? Are you still using that cane?” Yes, the stroke was nearly two years ago, but I also have M.S., and the combination makes me stagger, makes me weak. It is internally painful for me to admit this, but whenever I leave my house I use a cane. It wards off other people, gives me balance, reminds me to be careful.

The Internally Painful Fake talks with Nilla every day, and she sees the judgment in Nilla’s eyes. She hears my hesitation, and she rushes to fill in the word I cannot find in my aphasic moment. She is thinking, “It’s been almost two years. I thought she was over all of that stroke stuff.” It is internally painful for me to admit this, but when I am speaking there are times when my mind becomes completely void of words and I cannot complete a sentence.

The Internally Painful Fake parks in the disabled parking spot near Nilla very often, and she sees the judgment in Nilla’s eyes. I don’t limp enough for her satisfaction, or use a wheelchair, or have enough missing limbs, or whatever her personal definition of disabled might be. She huffs at me to let me know that she considers me an Egregious Fake (about which see above), about which I consider acting like an Unintentional Fake (about which see above) to prove her wrong, but instead I just wobble normally into the store. It is internally painful for me to admit this, but when I park in a disabled parking spot, I am glad that I will be able to find my car easily afterwards because those lights in the store scramble my brain if I stay longer than 10 minutes.

The Internally Painful Fake is an amalgam of half-started, half-finished, half-baked disabilities. Nothing is right, but nothing is wrong. Doctors examine me and say, “Hmm, that’s not good.” Friends look at me and say, “Hey, you look great!” Family members look at me and say, “Wow, you look wonderful!” It is internally painful for me to admit this, but I feel awful. The truth is there will be effects from the stroke present in me for years to come: how I look, how I feel, how I think, how I act, how I talk.

What’s right? Nothing. That is one truthful answer from the Internally Painful Fake. Another truthful answer would be: I can read again. I can write again. I can usually remember to scribble down notes when I think of something good. I can usually remember to scribble down notes when I remember something important.

What’s wrong? Nothing. That is one truthful answer from the Internally Painful Fake. Another truthful answer would be: my eyes, my ears, my shoulder, my brain, my mood.

What is really wrong, actually, is that the Internally Painful Fake hates being the Internally Painful Fake. I would much rather be the Egregious Fake and have everyone discover my deception so I could just stop it all and go back to riding my bicycle everywhere and playing softball like I used to and taking long walks on Monhegan Island off the coast of Maine.

Except now that I am verging on old and decrepit, I probably can’t play softball anyway, and the walks would probably require at least a walking stick, and the bicycle might even require fat tires. We probably need to add a fourth kind of Fake: the Old and Decrepit Fake.

Total Brain Dump

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When I was a kid (yes, I am actually starting out with New Jersey this time), we lived down the street from a dump. This is not as awful as it sounds. We were not rednecks. We did not live in some godforsaken beer-swilling rifle-cracking hog-grilling kind of place. No sir. We did not.

We lived in a respectable suburb smack dab triangulated between New York City and Newark, New Jersey, THE MOST POPULATED STRETCH OF LAND ON EARTH at the time, it seemed to me, and we had the BIGGEST MALL ON EARTH to prove it. Yes, we did, the Willowbrook Mall, built on land that once housed an amusement park, which somehow seemed appropriate to me.

Nevertheless, there was a dump up the street from us, on the land of a farm and nursery owned by the Pfitzenmayer family. They just let anybody who had anything to dump come and dump it. It was all very casual.

The nice thing about this was that the neighborhood kids—at least the ones that Mr. Pfitzenmayer approved of—could go rummage around the dump and find all kinds of neat stuff. We found old radios and magazines and dolls and just junk. Once we found $30, I think in the back of one of those radios.

Lately, my brain has been like that dump. I have been unearthing all kinds of neat stuff. No, not old radios and magazines, and certainly not dolls or $30. For one thing, as you might have been able to tell, it has been overwhelmed by details of my childhood. Vivid details of vignettes long forgotten have been sparking through my mind nonstop.

Just the other day, for instance, I remembered for the first time since the stroke a website I used to visit daily because I enjoyed it so much: Arts and Letters Daily. I recommend it if you want a good source to keep you up to date on the latest in all the arts journals we never get to read, the latest books we swear to buy, and the essays we wish we had thought to write ourselves. Plus it has an exhaustive list of columnists, online radio stations, newspapers, and so forth.

And then I had another brilliant find at the Brain Dump. This little gem is sure to come in handy for all of you folks who wear clothes, which I suspect is most of you, if I know my audience, which I suspect I do. Call me crazy, but for some reason I just picture most of you wearing clothes, and I really don’t think it has anything to do with me having brain damage. I think I would picture you that way whether or not I had had a stroke. Really. Not even kidding. Not even a little bit.

Maybe I should qualify this handy little tip a bit. Now those of you who know me can testify that I have an absolutely flat-as-a-pancake stomach. I mean, from my nose to my toes, it’s a straight vertical drop, 180 degrees, bombs away, look out mama, here comes trouble. Please keep that in mind as I describe the aforementioned gem in the followingmentioned explanation:

(But before we get to that—and you suspected this was coming when you saw the parentheses, didn’t you?—we must ponder the curious absence of the opposite of a word for “aforementioned,” which means CAUTION! ABSOLUTELY USELESS ETYMOLOGY LESSON AHEAD! which I have never done inside parentheses before, which shall, no doubt, present interesting punctuation issues. But in fact this turns out to be a decidedly uninteresting etymology lesson, since the proper opposite of “aforementioned” is simply “later,” yes, simply “later,” and now I’ve lost my place, oh well, let’s start a new sentence. And I am tempted to wipe out this etymology lesson entirely but I’ve tormented myself this far, and “aforementioned” is, I have found out, not even included in my copy of the Oxford English Dictionary except under “afore” [unfortunately, no more recent than 1987 but I am sure this was a word by then—and I told you we would get into some interesting punctuation issues, and Merriam-Webster confirms it was, by 1587], and now I’ve lost my place again. Oh, let’s give up. END USELESS ETYMOLOGY LESSON)

On to the followingmentioned explanation I promised a few breathless parenthetical breaths ago. Flat as pancake stomach, etc. The problem is holding up my pants. Or my shorts. Or my skirts. But I hardly ever wear skirts. I’m just not that kinda girl. And if I was, I would definitely want them to be held down.

No matter how tightly I cinch my belt or elastic, my pants have a southern mind of their own. Last week, I remembered my solution for this problem: tuck in my damn shirt. Waa-laa! Problem solved! After 18 months of pants-droopiness, I now am clam-happy. And as I’ve said before, light dawns on Marblehead. (I’m allowed to say that; I used to live there, and I’ve seen it happen.)

So that’s two very exciting finds at the Brain Dump in recent days. And then just yesterday I unearthed a third, this time from the computer pile, the long-neglected computer pile. I’d almost forgotten it was hiding there in the corner.

Now that I am no longer gainfully employed, CF and I have rearranged our house so that our computers are about six feet apart. Given my loss of software knowledge, this immediately put us at a disadvantage, networking-wise, because our cabling system was de-cabled. We would strangle each other trying to figure out cables, strangle each other trying to figure out Wi-Fi, or strangle each other paying someone to configure the whole thing. So for a couple of months, we have been emailing files back and forth six feet. Ridiculous, I know.

Then yesterday dawned light on the dump and the brain woke up again. I noticed a funny little item in my list of folders on my computer that seemed to be CF’s folder. I clicked on it, and what do you know, it was! I could copy a file directly from my computer to hers! Through the magic of my superior operating system I had complete access to her computer. At least I think that’s why. I’m not sure. I don’t understand these things anymore. Please don’t try to tell me why. Those brain cells are really gone forever. I think.

If they come back, I’ll let you know. I think.

Therefore, I am.

Stack overflow

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Better tighten your shoelaces, everyone, because I am about to combine software, brain trauma, elementary school, piles of junk, and who knows what else — oh yeah, New Jersey — into the next several hundred words.

First of all, stack overflow. For those of you who are mercifully uninitiated, that is, those of you who were never forced to learn what the heck it means, it means that the computer memory got all jammed up, and it didn’t have enough room to put everything. It overflowed. Who knows why they use the word stack? I don’t.

CAUTION! ABSOLUTELY USELESS ETYMOLOGY LESSON AHEAD! And why do they use the word “bug” to describe a problem in computer stuff? Well, it was a moth that gummed up the works way back in the dark ages of room-sized laptops. You can find it taped to the pages of a log book on display at the Smithsonian Institute. The word “bug” was used to describe something out of whack long before computers came along, but this moth brought it to the computer world, and it also inspired the invention of the word “debugging” by computing pioneer Grace Murray Hopper, a word still used today to describe the process of ridding computer software of its flaws.END USELESS ETYMOLOGY LESSON

Now where was I? Oh yeah, stack overflow. Having gone through that stroke thing, that brain trauma incident, the grand explosion, the Brain Twister, I have a new perspective on stack overflow. Some of my stacks overflowed, all right.

I’ve muttered a bit about how I’ve lost the ability to do long division, but that never really mattered to me all that much—that’s what calculators are for. More significantly, my ability to do anything sparkling on a computer just fizzled.

You’ve seen the commercials on TV where those little girls go stamping along the tops of picnic tables flinging the tops of their computers at each other, haven’t you, showing off how great Microsoft Surface is, or completely grown men in completely serious business meetings snap their laptops shut in corporate harmony while some well-paid orchestral group swells in eight-part harmony? Yeah, well, I don’t get it.

We gave NF one of those Surface things for Christmas, and I sat down with it the other night, and it sparkles, all right. Wow, does it sparkle. I mean, I wanted to play with it so much I broke a sweat. (This is the first time he has let it out of his room since paper-tearing day because he loves it so much, so it’s the first chance to play with it that I have had.)

But as I sat there watching it sparkle, I realized that I couldn’t sparkle back. I couldn’t even glimmer back. I could give off a sort of dull glow, like a flashlight about to die.

Yeah, I don’t get it. My stacks have definitely overflowed forever. I have become one of those geezers who can’t figure out new technology.

Much to CF’s dismay, I will always be a stacker. She, on the other hand, is a stuffer. I pile everything into stacks; she stuffs everything into drawers. My piles drive her crazy; her stuffed drawers drive me nuts.

I have a theory that every successful couple has one stacker and one stuffer. I don’t think two stackers or two stuffers could survive in the same house. If you are part of such a couple (stacker & stacker / stuffer & stuffer) and you are successfully sharing living quarters, please let me know, and send photographic evidence.

One of my vows for the new year was to get rid of the stack overflow from my office. That has not yet happened, and the year is nearly one-fourth gone. Therefore, in order to embarrass myself, I am posting evidence of my overflow, hoping that by next week I can post evidence of my underflow, with an affidavit from CF attesting to my honest cleanup effort (i.e., that I didn’t just stack it elsewhere).

Hmmm. I planned to post photographic evidence, really, but I have spent three days trying to do so, really, that’s why this post is so late, but my withered computer skills once again let me down. With any luck I will post before and after pix next time.

I learned to not be a stuffer the hard way in fifth grade (and, oh no, here comes the New Jersey stuff) when our teacher, Miss Coffin, asked us to rearrange our desks. These were the good old-fashioned wooden desks that had a drawer underneath the top without an end cover into which you could stuff all kinds of papers, and a groove on the top for your pencil or pen and even a hole bored in it for your bottle of ink. I know that makes it sound like the 1890s, but I think they used those desks well into the Clinton administration.

It was the first day back after winter break, and our desks were in a circle around a very bedraggled Christmas tree, which in those benighted days we were allowed to have in our classrooms. As I recall, my sister’s doll got to be the baby Jesus in the school play, and she got to play a dreidel, which offended our Catholic mother somewhat, but seemed to make everything balanced in the school’s ledger. Someone did offer an infant brother for the baby J part, but that offer was rejected,we thought because of the diaper problems, but in hindsight other issues now present themselves.

As we pushed our desks back to their normal places, out from my overstuffed desk drawer fell my brand new glasses case, which I had hastily stuffed in there as soon as I got to school that morning before anyone saw it.

“Ooh,” hissed Donna to Carol, “she got glasses.” I snatched the glasses case up as quickly as I could, but the damage was done. Donna and Carol were the trendsetters, the cool kids, the cheerleaders-in-training, soon to sprout pom-poms and rah-rahs from every pore on their body.

For some reason, I poured my fury about my imperfect eyes in the eyes of their perfect ones into stuffing. I unstuffed everything and became a stacker. I was cured of stuffing. No more stuffing for me.

Except for Thanksgiving. I was addicted to Thanksgiving turkey stuffing, especially my grandmother’s turkey stuffing. There was something unique about her stuffing.

We never figured out what made it unique, and she could never tell us what it was. We watched her every year, joked that it was her sweat, or the water in Irvington, N.J., or her well-worn bowls. The secret, whatever it was, she took to her grave.

And now I must go make short work of at least one pile of my precious crap before next week. It pains me, it really does. So much of importance in that stack of paper, so much of significance, so much of….overflow.

Will You Be My Valentine?

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All of you, each of you, every one of you who reads this blog any time I manage to post something wins my heart. You are my Valentines.

I don’t know what it is that keeps you reading me, week after week, blog after blog. Maybe you are a friend, a relative, a stranger who stumbled on my blog, or someone I met in passing.

Maybe you read me while waiting for your iTunes to download. Maybe you read me while waiting for the teakettle to boil. Maybe you read me while waiting for the dog to do his business. Maybe you read me on your iPad while on the Green Line in Boston and no one reading over your shoulder can figure out why you’re reading about someone in Washington who keeps talking about New Jersey.

Writing a blog like this one isn’t easy. It’s all very self-centered, since I’m writing about my stroke, my brain damage, my recovery. My, my, my, ain’t I selfish, talking about myself?

Just before I graduated from high school (in New Jersey), I remember I promised one of my teachers (who happens to read this blog) that I would talk more in college. I wasn’t very successful at that, but a few years later, two friends pummeled me good-naturedly enough that I learned to carry on a decent group conversation. I thanked them for teaching me to learn how to talk, but I still prefer to write.

When I first started to recover from the stroke I was having a very hard time putting thoughts together. Since writing was still my preferred method of communication, it was natural for me to at last come up with the idea of a blog, rather than try to talk things out.

But since I was convinced I made no sense, I gave everything to CF to read first. For all I knew, I was spewing forth in dactylic pentameter unconsciously, or nattering about celebrity gossip I had overheard on TV while drooling the day away.

Only after the writing had gotten CF’s seal of approval did I post it online.

Even after she started to assure me week after week that I was making perfect sense I continued too make here read me, word for word. I was convinced i was making an idiot of myself somewhere biy lapzsing n2  co0mpleeete nonnseeeense unknown 2 me  and she had to sAVENE ME FRUm nyslfef.

This is the first blog entry she has not read ahead of time. That is because the rest of this blog entry is about her, and I didn’t want her to have a chance to stop me from writing it. She is my loveliest Valentine.

Many years ago, when CF and I were young and in love, she used to worry that there would come in day when I would take her for granted.

After nearly 31 years that day has not arrived. I don’t think it ever will.

Because I have MS and because I had a stroke and because the stroke gave me diabetes and because all this made me unsteady and I fell and tore my rotator cuff and because I needed surgery from that fall and because I got blood clots from the surgery and because I now have to have my blood thickness tested, I have had an enormous number of doctor appointments in the last 18 months.

CF has driven me to and/or from most of those appointments. She also sat next to me in the doctor’s office, making sure I understand what to do. Which was rarely.

She has also almost single-handedly maintained our household and raised our son.

She has been a fierce protector, a tender caregiver, a tough coach, and a gentle soulmate. Could I ask for more?

It’s not as if her own life has been quiet. Remember, she broke both of her hands in one way or another last summer. One of her sisters moved out of town last year, which placed more responsibility on her for their elderly mother, also. She has accepted more responsibility at work, also, with a nice promotion, meaning more responsibility, of course.

When I think back over our years together, I realize we’ve been through three heart attacks, three strokes, one bout of colon cancer and two deaths together. Everything but my stroke belongs to our parents.

We’ve also invited two of her sisters to live with us for extended periods of time, stood by my sister through a difficult time in her life, helped nurture an infant nephew through his first year, adopted a child, moved cross-country, lost a house to the mortgage crisis, and suffered through an interminable lawsuit. (I don’t use that word “suffered” lightly. It was truly awful, as many of you know. If you don’t know, just Google “Madsen v. Erwin” for 33,400,000 explanations.)

I suppose in some ways I have come to take CF for granted. I’ve come to take for granted that she will be honest, that she will be loyal, that she will be true, in some sort of grand and glorious post-Girl Scout way. And I don’t think that’s a bad thing at all.

CF and I have always agreed to not get “mushy” on Valentine’s Day. I have always gotten her a card with lace and hearts and a red envelope and she has gotten me nothing, at my insistence. I am breaking with tradition by writing this blog. She will not speak to me after she reads this.

Just kidding. I hope. Happy Valentine’s Day.

Crossing birds and dotting eyes

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Sometimes, as they say in Massachusetts, light dawns on Marblehead.

The double meaning of the name “Angry Birds” finally dawned on me. It’s a rather silly double-play on “crosswords,” as in, cross meaning angry and words rhyming with birds. It took me only 18 months to realize this.

It also took me only 18 months to be able to solve the Monday crossword puzzle in the New York Times, something I used to be able to do without glancing up from the newspaper. There was a bit of consternation and foot dragging and gnashing of teeth, but I did do it in pen with only one slight over printing, and no cheating by looking things up in the dictionary or on the web, I swear.

Of this I am very proud, even more proud than of my Jumble Triumph a few weeks ago, I blush to say.

Then I got greedy. I tried the Tuesday puzzle. And it didn’t go too bad. Not being a big consumer of Apple products, I got hung up on the iMac clue, and having no idea who Emma Stone is also hung me up, but other than that, I sailed through.

Unfortunately, those two clues were in critical places, which gummed up the works significantly. Then, one thing led to another and I missed doing Wednesday’s puzzle. When I looked at Thursday’s puzzle, it was full of puns and little quiz-like things and references to pop culture, never my strong suit (I have referred to my sister’s gift of an iron buttercup before, when I got the name of the band The Iron Butterfly wrong.)

Thursday’s puzzle was a disaster; Friday’s puzzle was a no-go. I will look at Saturday’s, and despite the promises I made several weeks ago, I have yet to make it through a Sunday newspaper.

But I have, haven’t I, made good on my promise of a weekly blog entry, whether you’ve wanted one or not?

As for my third promise, a tidy office, well, I’d have to say that promise has been half-way fulfilled. And that half has been half-way fulfilled by CF.

Since I am no longer gainfully employed, it seemed a bit selfish of me to continue to occupy an entire room of our house as an office, especially since her desk was perched uncomfortably next to the kitchen counter. So we decided to rearrange the room that was my office so we could share it. This meant that someone had to clean half of it. More precisely, this meant she had to clean half of it.

So right now, our dining table is stacked with piles of my crap. This dining table, I should point out, is handcrafted from 200-year-old pine boards harvested from the floor of the old barn behind our first house in Maine before it collapsed of old age. It is the most gorgeous object in our house. But right now you can’t see an inch of it.

Nor can you see an inch of any other surface in my office, except the surface of my monitor and keyboard, which is all I need to keep working. Oh, and that of my headset, which I need to keep speaking into my handy-dandy Dragon software, which has worked surprisingly well for dictating this blog.

My son snickers at my headset, which has those big, comfortable ear cushions that make you look like a real science geek. He of course has his iPhone earbuds flung casually around his neck 24/7, which is good because if they were actually in his ears I think they’d be pretty painful.

As I admitted earlier, I’m not exactly up-to-date with everything Apple has to offer. I’d never heard of the iMac, for instance. But I do own an iPhone and iPad (a huge admission from a diehard PC programmer), although I do look at that Windows phone with some envy.

I don’t know if it’s because of my brain injury, or because I was a PC programmer, but no matter what I did, I could not figure out how to copy a paragraph from one place to another on my iPhone. In desperation, I asked my son. He glanced up from his Xbox (a Microsoft product), rolled his eyes, grabbed my iPhone, copied the paragraph, handed the phone back to me, and went back to his game.

Was this the day that I was undone by technology? Was this the day that my son knew more about it than I did? Or was this simply a day that my brain injury got in the way?

None of the above, I decided. It was…just a day.

But it was a day when I knew a four-letter word for a mound containing prehistoric remnants (TERP) and a three-letter word for a boggy land (FEN) (sorry, that’s an in-joke, that some of you might happen to be aware of, that is, you might happen to [KNOW]), and some day there will be a crossword puzzle with both of them in it, and I will take that puzzle and shake it under my son’s nose and point out those clues to him, and he will pull his earbuds from his ears, glance up at me, and roll his eyes, confirming, once and for all, that I come close to the craziest of all two-word phrase for an AMC series starring Jon Hamm (MAD MEN).

My Own Mr. Mxyztplk

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To tell the truth, I was always a pretty casual Superman fan. I only bought the comic books on snowy days, when school was cancelled and my sister and I got permission from our mother to trudge three-quarters of a mile from our house, past our elementary school (where classes had been cancelled) to a small delicatessen known to us as Bob Butt’s, where we bought a pound of sliced liverwurst, six hard rolls, and a can of cream of celery soup.

We then went to the little newsstand/tobacco shop two doors over (there were only three stores in this little row) that we called Al’s. Here we perused all of the usual kids’ magazines, conveniently placed on the lowest shelf. I have no idea what sort of salacious magazines he had on his upper shelves; I never looked. I only ever bought Mad Magazine or Superman.

Mad Magazine cost a dime. I still remember “The Sound of Mucus.” It was this dyspeptic movie satire that finally broke me of the MadMag habit, sad to say.

That rascal Mr. Mxyztplk should be here

Mr. Mxyztplk

Mr. Mxyztplk wasn’t in every issue of Superman. He was some sort of evil guy from another dimension who could thwart Superman with practical jokes. What got me was his name. He could be banished only if you got him to say his own name backwards: Kltpzyxm.

But Mr. Mxyztplk is in my newspaper every day in the form of the Jumble puzzle (by David Hoyt and Jeff Knurek). You’ve seen it: four mixed-up words to unscramble, some letters circled. Take those circled letters and form them into another word to solve a riddle, usually some sort of ridiculous pun, usually not worth solving.

Pre-stroke, the Jumble puzzle wasn’t worth my time. (Sorry, Mr. Hoyt and Mr. Knurek.) I would glance at it, just glance at it, and the four jumbled words would leap into order. RREVI? RIVER, of course. DEEWG? WEDGE, easy. DRANTS? STRAND. COTREK? ROCKET.

Post-stroke, I found I had to avoid that part of the newspaper. Staring at those nonsense clumps of letters hurt my head.

Of course, I was also avoiding the New York Times Crossword Puzzle. And not just the Sunday puzzle, legendarily the hardest one. I was avoiding all of them, even the Monday puzzle, the easiest one.

Oh, I’d tried them all, and failed them all. I’d gotten a clue or two (“Fab Four leftie”) but nothing cross-worthiness. (Paul, of course.)

I was avoiding all games, word and otherwise: card games, board games, strategy games, computer games. Actually, I’ve always avoided card games. The brain rehab therapist tried to get me interested in some online brain game sites; I refused to try them. Even when CF’s mother or my mother had Jeopardy on TV I couldn’t watch it.

This was all stuff I used to gobble like potato chips. It was my junk food. Now I couldn’t go near the stuff. It was from another planet. No, wait. Not to push the metaphor, but … it was kryptonite.

But then last week something went … kltpzyxm.

Abruptly changing metaphors:

You know that look of surprise a baby gets when something happens—the wide open eyes, the rounded mouth? That completely innocent, babe-in-the-woods look?

Surprised baby goes here!

Wow!

Yeah, that one.

Or maybe that was an analogy. Anyway.

By the time I clamped my mouth shut, the letters of the Jumble puzzle had settled back into their scrambled places, but I still knew what their unscrambled order was.

YOW! KA-BLAM! BAZOOKA JOE! Oops, wrong comic strip.

I took another peek at the Jumble and my brain did it again: another jumbled Jumble unjumbled. Two out of four jumbled Jumble words had unjumbled themselves so far!

This called for a pen with which to scribble on the newspaper, easier said than done, since there are four pen-hiding cats, one pen-eating dog, one pen-squirreling son, and one pen-hoarding partner in this household, not to mention one pen mis-placing me. Not to mention approximately two dozen unsharpened pencils, despite having approximately three pencil sharpeners, including a handy desktop electric sharpener, ready, waiting, and plugged in.

Nevertheless, given this landmark event, I persevered. At last I unearthed a slightly salty yet workable Pilot EasyTouch gel pen from a forgotten summer baseball take-along bag, and confidently wrote in WHARF where it said FRAWH and MOUTH where it said TUMOH.

That left me with GLEPED and NOYRED. Ignoring the obvious –ed endings (which these guys never would be so obvious about), I stumbled on PLEDGE pretty quickly, but YONDER took a few minutes. They claim the four jumbled words are ordinary words, but the only person I’ve ever heard say “yonder” is Romeo. Then again, I barely pronounce the “R” in WHARF myself so I guess we’re even.

Even though I haven’t bought a Superman comic book since those snow days in elementary school when I still ate liverwurst, I felt pretty Superman-ish having actually solved a Jumble puzzle some 17 months after a stroke. We take our small victories as they come along.

I don’t plan to leap any tall buildings in a single bound although I think my cane would give me a nice vault for a head start. The $996 arm sling might hold me back, though.

A Shoulder To Cry On

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Loyal readers are no doubt sputtering at that headline, wondering how on earth I am going to segue from “A Shoulder To Cry On” into a discussion on pretzel-thoughts, which I promised last time I would discuss this time.

Well, I’m not going to. You’re going to have to wait a week for that scintillating discussion, maybe even longer.

Depends on how good the anesthesia is.

See, on Tuesday, Nov. 20, the bone doc, Doc Z., is going to pin my tendon back on to my rotator cuff so I can use my right arm again without rattling the roof rafters with my screaming. And that little bit of surgery is all that’s on my mind right now.

“Pin” is not the correct medical term, of course. I believe he will actually sew it back on, a technique I never quite mastered, despite two terms of home economics classes in seventh and eighth grades at Grover Cleveland Junior High School, the same school where I was taught to dance the hula and square dance.

Along with Vicky L. and Kathy R., I was quickly identified as a H.E.H. (home economics hopeless) and forced to sit in the kitchenette closest to the teacher, where we scorched the toast, burnt the broiled grapefruit, spilled the tea, and generally lived up to our potential.

When it came time to switch over to the sewing half of the course, we were faced with the task of making a wrap-around skirt. I chose a trendy denim fabric, and stared at it helplessly for several class sessions, measuring out my pattern pieces again and again. Even Vicky L. was ahead of me. I never did sew the buttonhole; I just punched it through with the scissors and let it go at that.

It was worse in eighth grade, where the normally shy and sedate Sandy B. led the rebellion to make an A-line skirt and weskit (very trendy) rather than the normal jumper (very fifties), leaving all us H.E.H. in a panic. I didn’t even try. I gave my fabric to my first-cousin-once-removed, who gave it back all sewn up. I didn’t care. I managed to hold my head up high when forced to trot across the stage in the mandatory home economics fashion show. I wore the hated stockings but refused the makeup. I have my limits.

So I can’t blame M.S. or the stroke for my inability to sew, sad to say. But I can blame both for the shoulder surgery. Without M.S., I never would have been taking BrainScar, the drug we all (tacitly or not) blame for the stroke I had in August 2011. And it was either M.S. or the stroke that caused me to stumble and fall up the stairs that night in September that tore apart my rotator cuff.

Rotator cuffs can fall apart all on their own, because they are used for so much. They lie deep inside your shoulders, underneath all the muscles and bones and tendons. They’re kind of like Grand Central Station for your arms. Move your thumb? Gotta go through the rotator cuff.

One of the last things I did this week was have a tooth fixed. I found out that my dental hygienist is recovering from rotator cuff surgery, caused by years and years of cleaning people’s teeth. Poor Laurie!

It takes months to recover, lots of physical therapy, with and without physical therapists. Fortunately I already have found some good P.T.’s. I was working with them on this shoulder until we decided that the pain wasn’t getting any better and an MRI was needed to see if the rotator cuff was in fact torn.

Answer: Yep.

So a week after the surgery (just long enough for all the anesthesia to have worn off), I’ll return to the physical therapists to start the recovery process.

I’ve been trying to picture what sort of bandaging they’ll wrap me in after this surgery. The doctor was a bit vague about what sort of incision he was going to do: arthroscopic, he said, but then opening it up a bit, waving his fingers around in the air as if that explained it all, assuring me that he would also remove the arthritic matter that was in there. Seventy minutes, tops.

So I figure either a little Band-Aid, like you can get at the supermarket, or a two-by-four strapped across my shoulders with a roll of duct tape. I’ll have to go through doors sideways and carry a beeper for when I back up.

In either event, it won’t be me rattling the rafters anymore. And for that I am very happy.

Coming in from the Cold

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I have survived a stroke. I have survived a series of grand mal seizures. I have lain inert in a medically-induced coma for 13 days. I have survived three or four or five or six exacerbations of multiple sclerosis, unable to walk or hoist myself out of bed.

But what brought me to my knees, what made me unable to function, what made my world stop spinning….was the common cold.

I don’t know where I got it. I don’t know who gave it to me. I just know that it announced itself one evening as a little tickle at the back of my throat that trumpeted to my entire body, “Uh, oh.”

And my entire body moaned back, “Holy crap.”

I’m a bit superstitious about colds. It’s part of the reason I’m glad I’m not out there in the general workforce, breathing all that germ-laden air all day long.

It’s pretty well established that M.S. is related to an overactive immune system. And what is a cold? Your body’s overactive immune system’s response to a viral invader. Ipso facto I give colds wide berth.

I must admit that I do not know of any research pointing to a relationship between onset of colds and onset of M.S. exacerbations, but I’m not taking any chances. I will continue to wash my hands every chance I get, carry extra tissues with me, and spritz anyone who approaches me with Clorox. Not really. Just a little Lysol. Not really. Baking soda, I swear. Dissolved in club soda, that’s all. Really.

This cold walloped me right in the nose and then stuffed sawdust down my lungs. The combination reduced me to a slack-jawed whimpering tissue addict, knocking back large slugs of cough medicine every four hours. I set my alarm clock so I would wake up for the next dose. I had to reintroduce myself to my son after six days.

When the cold symptoms finally began to fade, I tested myself for the dreaded M.S. symptoms that might indicate an exacerbation. Did my toes tingle more than they usually did? Was I dizzier than I usually was? Could I even walk?

Living with M.S. is lots of fun. I have the kind of M.S. called relapsing/remitting. That means that it comes and goes, but every time it comes, it leaves you a little worse off when it goes. So my toes are always numb, and I am always dizzy, and always tired, and I can never walk in a straight line.

Then, if I get an exacerbation, all of that gets worse for a while. I can’t feel my feet at all, or my legs. I look like I’m drunk when I walk, if I can walk at all, and I’m so exhausted I mostly stay in bed. The cure, if you can call it that, is to stick a needle into my arm and pump me full of steroids. Those of course just plump me up like a Thanksgiving turkey, which, to be frank (and I’m a vegetarian), I’m rather thankful for, because eventually I am able to walk again and feel my feet and carry on a conversation.

And, oh yeah, before the steroids kick in, my eyes might crap out on me, too. That’s one of the signature symptoms of M.S., called optic neuritis, where the nerve that carries images from the eye to the brain swells up and you can’t see anymore.

I am happy to report that so far, so good. Just a cold. Just the normal numbness and dizziness and tiredness and zig-zagginess. Looks like we got through this cold spell unexacerbated.

Except I can’t get rid of this little nagging cough. I stopped taking the cough medicine when the sawdust went away, because there wasn’t enough of a cough left to justify the medicine, as tasty as it was (I could get addicted to Nyquil if I wanted) and as soundly as I slept (ditto).

It took me a few days to realize what the nagging cough was: the stroke-cough. It was the cough left over from the tubes that were jammed down my throat when I was unconscious in the hospital after the seizures and the stroke in August 2011. That little nagging cough was still hanging around.

Recognizing the stroke-cough was my first realization of a post-stroke marker. I had already checked in with my M.S. markers: numb toes, dizziness, fatigue, zig-zagginess, all my usual markers of how my M.S. was doing.

Realizing my relative dullness of mind and witlessness took a bit longer, of course. There are more layers of inert gray matter to pound through before active thought forms. Snap, crackle, fizz. Oh, yeah. A thought. Huh.

Speaking of which, that is another post-stroke marker: pretzel-thoughts. As its name implies, it’s a knotty one, or perhaps I should say naughty, as it tends to get me in trouble, or rather it tends to get my relationship in trouble, nothing that can’t be fixed, I hasten to add, because CF and I have 30 years of experience in getting ourselves out of trouble, dating way back to our favorite escapade when we nearly broke up over a can of black olives (I am not making this up) while sitting in our car at the side of the road.

It was very dramatic. I was wearing a filthy dirty softball uniform and it was a hot summer evening in Massachusetts and we barely made it through that fight but we still love black olives not to mention each other and I think I will wait until next time to talk about pretzel-thoughts because my M.S. markers are calling.

Long distance beach bumming

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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.

Barnegat Light

Barnegat Light

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.

Good Manners, the FDA, and Bright Lights

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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.
End digression.

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.