Tag Archives: brain trauma

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.

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).

Poof! The Magic Dragon!

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Those among you who are writers or who have ever done any editing or writing know that one tends to rearrange the odd bits and pieces of sentences one puts together as time goes by and inspiration strikes. That’s what I’ve done here, not necessarily to improve this piece of writing, but to demonstrate my frustration with my best efforts to take care of myself.

Ever since I had shoulder surgery in November, it has been impossible to type. It’s been impossible to do anything with my right arm, including drive a car, wash the dishes, put on my $996 sling, or clean the cat litter.

Finally Amazon had pity on me and sent me a $49 coupon for Dragon Naturally Speaking, which was cheap enough for me. I’d nearly bitten at $139 two weeks earlier. When the package from Amazon arrived, I ripped it open, ran through the installation, went through all the required training sessions so the Dragon learned how I talked/croaked, and started to dictate this blog entry.

The first thing I wanted to do was make the display in my word processor a bit larger and easier to read by using its zoom command. So I calmly and clearly dictated the proper Dragon command:

SET ZOOM TO 125

This is where the editing I mentioned earlier comes in. Everything I’ve written so far I wrote after I tried to set the zoom setting to 125%. Now I will show you exactly what Dragon Naturally Speaking typed for me when I told it to set the zoom setting to 125%:

set soon to 125

select resume to 125

set assume two 125

set soon to 125

Those are the exact lines it printed for me, rather than zooming. Then I gave up. The last line above them that I just typed is the first time it has ever printed the word “zoom” when I told it to. Victory! I just had to look up how to make it print an exclamation mark. I finally zoomed myself.

However, DNS has done pretty well with my general typing otherwise in this blog. I’ve been able to keep my right arm in my lap and use my left arm for everything. My physical therapist will be very happy to hear that tomorrow.

Before I purchased DNS, I tried some other dictation software that I found on the Web, some free stuff that had good recommendations. I tried to use it but it was the week I was writing about pretzels, and things didn’t go very well.

In fact, things were worse than with that zoom command. Unfortunately, in my frustration, I did not record the results. It was a ridiculously complicated pun, probably best forgotten, undoubtedly unnecessarily reproduced here. After numerous false starts and stops, deep fat fryers, plump young friers, and plump old friars, I ended up with:

Pretzels were invented by friars who baked them. They just as easily could have been invented by bakers who fried them.

Just to satisfy my curiosity, I tried out those sentences in DNS. Except for unnecessarily capitalizing the word “friars,” it cranked them out perfectly.

Speaking of deep fat frying, I was a bit worried about opening the DNS package. “Ignite, ignite, ignite,” it read, no fewer than eight times, in some sort of marketing ploy to inspire me to the heights of creativity. “Ignite Fun At Your PC.” “Ignite Convenience.” “Ignite Control.” This just sent me scrambling for the fire extinguisher to hose down the package before I opened it. Fortunately, CDs are waterproof.

Perhaps I am straining at gnats and swallowing camels as the Bible says. Hah! That actually came out as “straining at bats.” As you can see, I am having way too much fun with this software.

I have other bats to strain and I hope this Dragon will help me strain them, although dragons are usually associated with slaying rather than straining. Once again, the metaphor gets pushed beyond its natural boundaries.

By other bats I mean I have other things to write rather than this blog, things to get done before my arm is ready for me to do them. For example, I write the obituaries for Bates College, something I enjoy doing, believe it or not, because I write a little profile about every person. I’m also working on a novel. So I need either both arms or a microphone.

And now that DNS understands my conversation, I just have to get it to understand my commands. “Sit.” “Roll over.” “Zoom.” “Good boy.” Hey, we’re getting somewhere.

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.

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.

No sugar added

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When life gives you lemons, make lemonade. Sure. As long as you don’t add sugar.

There are several things they don’t tell you when you are unconscious in the hospital with a dozen tubes emerging from you at various unimaginable angles. These tend to be the same things that your loved ones accept without question as long as the little beeps keep beeping around you, as long as all those important numbers don’t slip towards zero.

Things such as, “If we keep doing this to her kidneys and pancreas, she’ll have diabetes forever.”

“Fine, fine,” said CF. “I’ll stick a needle in her arm every day,” she said. A noble gesture on her part, a woman who hates needles.

I do love this woman, a woman who hates needles, making this noble gesture. I honestly, fully do.

Problem is, l love sugar. I honestly, fully do.

She does too. But she also loves salt. Not me. She can switch her sweet tooth to a salt tooth and be happy. Not me. No switch.

To categorize our household treat teeth, I’d put her at 50% sugar, 50% salt; our son NF at 20% sugar, 60% salt, and 20% vinegar; and me at 90% sugar, 10% salt. NF would be higher on salt if it weren’t for the vinegar, which he pours on everything, including things with salt on them, including chips with vinegar in them, including salted chips.

Not that this is our entire diet, let me point out. Just our treat teeth diet.

She sticks a needle in my arm every day, and off to work she goes, job done, mission accomplished, smile across her face, good to go, all’s right with the world.

I sit home and try to avoid sugar.

So what would I have said if I had heard them in the hospital?

“If we keep doing this to your kidneys and pancreas, you’ll have diabetes forever.”

“You mean hardly ever eating sugar forever?”

“That’s right.”

“You mean a needle in my arm every day forever?”

“That’s right.”

“You mean constantly obsessing about my level of blood sugar forever?

“That’s right.”

“What’s the alternative?”

“You die.”

“Oh.”

“So what do we do? Keep trying to save your life? Or give up?”

“Keep trying! Keep trying! Who needs sugar?”

Well, joke’s on me. Evidently, current guidelines actually allow people like me to eat a spoonful of sugar as long as it’s in the context of a healthy diet and does not account for more than 10% of the total calories.

Some days I admit that the spoon fills over with candy corn. But it is a vegetable. Other days I have a healthier starch and just lick the powder off the bubble gum. Not really. I just lick it off the inside of the wrappers. Not really. I just lick it off the back of the baseball cards. Not really. Just off the faces of the baseball cards. Wait a minute. Those are men. Not my type. Wasted sugar. Do-over!

Not really. Most days I have a healthy starch and stare longingly at the unhealthy sugars as they teasingly make their ways down the happy throats of the healthy youngsters around me, unaware as they are of the diabetic wretch next to them.

I laugh away their birthday cupcakes, content to wait for my own celebratory birthday blueberry pie, made lovingly with artificial sweetener by CF, or my special cheesecake, ditto. She’s become quite the expert with that fake stuff, a benefit not only to me, but also to her mother and sister, also diabetic.

CF has been diligent about shooting me every morning, never once missing the opportunity. But I must say, I came to find it annoying. She had to wake me enough to get me to unravel an arm from the blankets, which meant I usually woke up enough to actually open my eyes and see sunlight, and things went downhill from there.

So last week I told her I would take over the chore. I immediately dispensed with the little device that sticks you in the finger to measure your blood sugar level. This is the thingy all the late night ads want to send you for free if you are on Medicare (which I’m not). They all hurt like bejezus, let me tell you, no matter what the ads say.

They are designed to hide this thumbtack-like item from your eyes. Then you press this knob and the thumbtack shoots into your unsuspecting finger at the speed of light, drawing forth a single blot of blood and one thunderous bolt of pain that throbs through your entire hand and arm and body in a fiery roar that deserves to be explored by the Nuclear Regulatory Commission.

I found that instead I could use the insulin needle itself to gently stab my finger to get the needed drop of blood for the preliminary test, resterilize it, and use it for the injection. Yeah, yeah, don’t reuse needles, but on myself, within two minutes, give me a break. Plus it doesn’t hurt.

Huh. Microsoft Word is so upset with me for doing this that it won’t recognize “resterilize” as a word! Ah, what does it know?

We’ve never made any secret of this from NF, but somehow he managed to ignore it all until this week. He saw me putting the insulin back into the refrigerator and asked what it was.

Without thinking, I joked that I would have to go to the hospital if I didn’t use it, forgetting for a moment that it was little more than a year ago that he stood over me in a hospital bed, worried I was about to die.

It was a stupid answer to an innocent question, one that I have just resolved to answer more thoughtfully at the first opportunity my 14-year-old knows-everything man-child will let me.

 

The view from shoe level

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When those nice little old ladies fall on T.V., they always show the devoted daughters plugging in the handy dandy tracking device that calls the ever-vigilant bright-eyed neatly-dressed attendant at some distant calling center who promptly promises to send help “right away” when dear old mom next tumbles to the ground, sending prunes or grape nuts scattering in all directions.

What they don’t show you are the hours of physical therapy the nice little old ladies need before they are allowed back in those accident-prone, handicapped-inaccessible kitchens, the ones with overhead cupboards, ancient faucets, outdated appliances, and lack of walking space.

Let me tell you, falling and not being able to get up is the least of the problem. It’s likely to be that last bit of rest you’re going to get for a long time.

Sooner or later, a neighbor or friend or partner or wife or husband or child will wander by and you will have to admit that you are not looking at the interesting mid-20th century variegated pattern in the handsome wall-to-wall carpeting of your hallway, that in fact they might as well haul you to your feet, that—ouch—your right arm isn’t quite what it should be and perhaps we’d better call the doctor.

And so begins the usual round of Dr. This and Dr. That and x-ray this and x-ray that. It all takes a couple of weeks and a bunch of hemming and hawing and gulping down horse pills and sleeping with heat patches glued to your arm and tossing and turning all night long and nearly dropping the half-gallon of milk because you forget that you are one-armed these days.

And of course I can’t drive because I use hand controls and that takes two to tango. And oh, have I mentioned that CF broke her OTHER hand and is in a cast for three weeks? We shan’t discuss the sad circumstances under which it happened except to say that I will describe my stupidest fall and then tell you that hers was even more stupid:

I was doing yard work a few years ago, walking down our driveway, pushing our 65-gallon plastic garden waste cart ahead of me. It looks just like a garbage cart, the kind the town gives you for your garbage. Fortunately it was empty, and the top was open. I was tired, always my excuse. I lost my footing and stumbled forward, and ended up flat on my stomach, with my head and shoulders inside the garden waste cart. As far as I know, no one saw me. It happened on my birthday. At least hers wasn’t on her birthday. But it was close!

My most recent fall did not happen out of sight of friends and neighbors; it happened in plain sight of CF and just out of sight of NF, who had, let’s say, “neglected” to hold the door open for me, causing me to stumble up the short flight of stairs tween garage and laundry room, crashing to the ground and somewhat crushing the semi-antique aluminum cake carrier I was no longer holding but instead flinging to the ground, although I did try to brace myself by pushing off the wall dead ahead of me which simply caused me to double-bounce on top of said carrier and ricochet off the pile of newspapers waiting to be recycled. There was a slight cushioning effect, the one and only time, I am sure, that Mitt Romney will ever be of benefit to me.

The x-rays showed damage that will require physical therapy, which did not surprise me. I have done this before, because I fall a lot, and I always damage the right shoulder, which amuses me. I am left-handed, and for many, many years, I was a fast-pitch softball catcher. I imagined that at the least I would have new knees by now, or a ruined left shoulder. But no, those joints are fine. It is the much less used right shoulder that is turning arthritic, has bone spurs, and is continually being crushed and mangled by my falls.

The doctors can’t tell without an MRI if I’ve actually “torn something” in the rotator cuff or not, but they shot it full of cortisone and now it’s off to P.T. twice a week, where, should I fall, I will be immediately whipped back to my feet by two or more extraordinarily athletic young people. I need to warn them that I get dizzy if I stand up too fast. These are the same people who coaxed CF’s first broken paw back into shape, therapy that involved, among other magic treatments, dipping her hand in hot wax, a treatment that sounds so spa-like that I purr with envy. I suspect the closest I will come to hot wax will be bumping into the air freshener candle in the bathroom.

However many times I may stumble in P.T., I am sadly certain that I will fall again in real life, that I will again damage this shoulder. What I think I really need is to go to Falling School. I need to learn to fall properly. They must teach that somewhere. There must be professional fallers. Someone to teach you to not stick out your arms so you wreck your shoulders, but to tuck in your arms and roll with the flow. Someone to teach you to do a floor routine, like those gymnasts in the Olympics. After all, when I was in grade school, they taught us to survive a nuclear bomb. Certainly they can teach me to survive a three foot drop to the floor now.

I’m not too old. I can still learn. And I’m pretty sure there’s enough newspaper in the garage to use for cushioning.

Mixed emotions

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It is difficult to believe that the small, squealing delight of dirty diapers that we call our son has grown into nearly six feet of smelly armpits, and that he’s starting high school. But he is.

And with that has come his first request for a steno notebook.

We were not prepared. Has it really come to this? We had 3-rings, pens, pencils, backpack, and so forth, but….

Actually, it hasn’t come to this. In his best ninth grade penmanship, he had actually asked for a “stental” notebook. Perhaps it was the rush of the first day.

The request was scribbled on a form that the parental units had to sign. There were two forms, and CF asked me to look them over. She had her back to me at the computer as I studied the form, looking for where it mentioned the steno notebook. I couldn’t find the place. She hadn’t mentioned that NF had written it in by hand, and we weren’t really paying too much attention to what each other was doing.

“Where?” I asked. “I can’t find it.”

“It’s there,” she answered. “Keep looking.” She was involved in whatever she was doing. I glanced over the two pages again.

“I can’t find it.” I was getting annoyed, as if this was a test of some sort. Why couldn’t she just show me? It wasn’t that big a deal. I’d found a notebook already; I just wanted to confirm that it was OK.

“It’s right there. Check it again.”

I looked over the two forms again. Nothing.

“Still can’t find it.”

She whirled around in her chair and turned over the pieces of paper and pointed out his handwriting.

“Right there,” she said. “I told you to turn them over.”

Sure enough, there it was: stental notebook. But I never heard her tell me to turn the form over.

Damage done, I hurried off to my office to lick my wounds.

And wounded wounds they were.

It was absurd, it was ridiculous, I know, I know, but there was something about the whole situation, maybe because I was staring at sheets of paper looking for something, maybe because she had her back to me as if she was timing me, maybe because she whirled around a bit too much like an impatient teacher, but I felt as if I had just flunked a test.

It felt as if I had just flunked a test in rehab and they weren’t going to let me go home yet and I was going to be stuck even longer with Fox News All. The. Time. and men with gigantic beards who haven’t quite copped to the fact that they will never ride their motorcycles again.

It was a momentary panic but it lasted long enough for CF to catch me blubbering at my desk, which made it all a bit worse, because I think she was trying to be funny, because after all, it is kind of funny to have your son ask for a “stental” notebook. It’s not often that you get to add a new word to your family dictionary when your only child is in ninth grade. That usually ends when they are, oh, three or four, and get a pretty good grasp of the English language.

The stental notebook I gave NF is one that I had used a bit, and I tore out the few pages I had scribbled on. They had had directions to various ball fields in Western Washington, ball fields we can now find even without caffeine. It also had a nifty pocket for storing loose sheets of paper and handy six-inch ruler. One lucky boy, eh?

So last night as we were driving home from another baseball game (What? You though the season was over? Hah! As their tee shirts say, there is no off-season in baseball.), I asked him how the notebook was working out.

“Good,” he mutters from the back seat, then says, louder, “You left some stuff in it.”

“Oh?” I croak, trying to sound disinterested, realizing I sound alarmed. If he found stuff in that notebook, was it just more directions to more ball fields, or was it the start of some bit of writing I’d forgotten about? Had he read it? Was this why he was telling me about it? Was he reaching out to me?

After he got home from school today, I wandered down to his room. He was smashing something to bits on his TV screen using a wireless piece of plastic he held in his hand. They call this recreating.

“Hey, did you keep those pieces of paper or did you throw them away?”

“Threw them away.”

“Did you read them?”

“No.” He hasn’t looked away from the TV yet.

“Was it paragraphs of writing or just scribbles?”

“I don’t know.”

Do I push this or do I walk away? I sniffed the air. Literally. His almost six feet of armpits didn’t smell too bad. His room was in semi-decent order. Whatever it was on the TV screen was collapsing nicely.

I walked away.