So much for the mall

It’s not what you’re thinking. This has nothing to do with holiday shopping and whether or not I’m going to shop at the mall or not. I gave up on that years ago. I did all of my holiday shopping downtown at the local stores or at craft fairs or via mail order.

What I’m talking about is my desperate need for a new pair of jeans. El Desperado. You got that right, pardner.

And the only place to buy Lee Jeans around here if you don’t know your size is at the mall. The dreaded Capital Mall. (It’s also the only place to buy Levi’s, by the way. I do not like this city.)

I don’t know my size because I have (ahem) gotten a bit wider without getting any taller.

So I strategically waited until I thought all the holiday shoppers had headed home, and then I veered off into the darkness towards Ye Olde Shopping Centre and that purveyor of everything necessary, J.C. Penney, to buy me a pair of good old Midwestern denim.

Once I located what I suspected might be the correct size size-wise width-wise, having added in an inch or so width-wise in the width area myself, I headed off to the dressing room. For some reason, it was in the lingerie department. This meant it was kind of gussied up. The mirrors had draperies on them that were held back by rings, and there was a padded stool as well. I was made to feel like a lady, even though I was trying on men’s jeans.

Just as I had strategically waited until the shoppers had headed home, I thought I had strategically dressed for trying on jeans. But I had forgotten about static cling. There is nothing worse than static cling in a dressing room. The pants I had on, made of some unnatural fiber that starts with “poly‑” and ends with “‑iber” (this is why I so desperately needed jeans to begin with) clung for dear life to my legs, realizing their time was nigh.

But first I had to get my balance. I don’t do well in small spaces. Especially ones where an entire wall is a mirror. Fortunately there were grab bars on another wall. They were intended to be bars on which you could hang potential purchases, but on which I chose to hang my wayward hands. Wayward hands thus steadied, I coaxed the polyhedral polyfiber Pollyanna pollypants off my legs somehow while the dinky little room became dinkier and dinkier and the brown carpet came closer and closer to my nose and the padded stool became tippier and tippier. <<CAUTION!! PERFECTLY USELESS ETYMOLOGY LESSON AHEAD!!>> For some reason, “dinkier” is an accepted word, but to many dictionaries, “tippier” is not. As for the etymological reason this is so, I can’t tell you. I lied about the lesson. <<END USELESS ETYMOLOGY LESSON>>

Polypants off, it was time to wrangle the denim pants on. Did you know that Lee owns Wrangler? Howdy doody, they do! Well, the parent company does. It also owns North Face and JanSport and Vans and a ton of other stuff. Very down-homey. If you go to the Lee website and sign up, you get 30 days o’ free shippin’ and returnin’. Just like the good ole’ days.

So anyway, the jeans fit, and all I had to do now was yank them off and tug the unwilling polynomial things back on my spastic legs in the ever-shrinking dinkiest tippiest dressing room in the lingerie department. Then I could find a register, pay for them and get out of there.

Yeah. Right. That lasted for 15 steps, just far enough for me to wend my way through the carpeted displays in the lingerie department and hit the nicely polished main walkway through J.C. Penney.

Splat. And I mean splat. As in on my face, nose first, suddenly surrounded by five sales clerks and two shoppers splat.

Splat.

The only thing I remember about falling is that I managed to push one of those pesky center-aisle tables out of my path as I fell, so at least I didn’t crack my head on it.

That’s the fun part with M.S. and balance problems. You just never know! Everything is fine, hunky-dunky as Uncle Felix would say, and then you’re eating the sidewalk.

They fussed over me and gave me something to wipe away the blood from a nasty scrape on my arm, and then a bandage for it (no biggie), and made me fill out paperwork for “loss prevention” (very nice woman in a very grim office designed for shoplifters), and mostly it was all ridiculous.

Splat.

But this is what happens when I go from a dinky room that makes me tippy to a crowded situation such as a lingerie department and then step onto a different surface and don’t pay enough attention to my footing.

Splat. Wait—what happened to those jeans I meant to buy?

I must have flung them somewhere as I fell, probably into the unyielding arms of a lingerie mannequin. I knew I didn’t belong in that department. I’m calling LL Bean.

MS. MS. MS. MS.

So this will be short, because I am doing five things at once, and I am mostly preoccupied with two of them, neither of them being the NCAA tournament, which is all my 15-year-old son cares about at the moment, which, given the variety of activities out there today, I suppose I am quite happy about.

MS. MS. MS. MS. These two letters have Continue reading

The theory of devolution

Huh. I got so busy blubbering away in my last blog post that I forgot to mention whether or not the M.R.I. results showed any more damage from the stroke or M.S.

Yup. More crap on the M.R.I. Pardon my medical jargon.

See, evidently, strokes “evolve.” This I did not know. I thought they stroked and that was it, but no, they evolve. They keep on munching out bits o’ brain at their will. Nasty little things. Mine “evolved” from 2 cm to 6 cm. And just to keep up with the Joneses, my old pal, M.S. decided to throw in a new plaque also.

This is where Darwin and I part company. I no longer believe in the theory of evolution, because I do not want this blot on my brain to get any bigger. It already feels dangerously close to the place where I keep information about old episodes of Cagney and Lacey.

It’s bad enough to know that everyone’s brain shrinks as they get older—it’s just part of aging. A normal brain kind of tucks in its edges as it gets older, so it rattles around in the skull a bit more.

But my brain goes at it with more than usual gusto. First, we have the stroke. The Blitz. The grand mal seizures (at least three) followed by the stroke that threw my entire brain into topsy-turvy land. That wrecked who knows how many millions of cells. If only my third grade teacher, Mrs. Clawson, was still alive! I sure could use a refresher in multiplication tables. Do you hear me, Mrs. Emily Clawson?

And then we have M.S., which gnaws away at the sheath that covers the nerve fibers in my brain, exposing them like bare wires to short circuit. Zap! You’re fried! The fun part is that it’s anybody’s guess where the gnawing will occur in the brain or on the spinal column, so what damage will happen is always a surprise.

Speaking of damages, Mrs. Clawson had a way with them. The first marking period of third grade, I got a C in science. I had never gotten a C in anything. My mother was perplexed, her faith in me shaken. During the parent-teacher conference, my mother demanded an explanation. Mrs. Clawson delivered.

“Well,” said Mrs. Clawson, in that chalk-coated, properly-punctuated way, “we did not cover any science this term; therefore every student received a grade of C.”

Surprise! You are a C student! Next, please.

Speaking of surprises, Mrs. Clawson always delivered one every summer. She always showed up one day in her bathing suit with her synchronized swim team, “The Ripples,” at our neighborhood pool to entertain us with their semi-coordinated dipping and dabbling. Believe me, seeing your 43-year-old teacher in her bathing suit and flowered cap is a sight you do not forget, especially if until this very week you were convinced she was nearing retirement when you saw her. All I can think of when I see synchronized swimming is my third-grade teacher being ridiculous on a hot summer day in New Jersey while I wait impatiently to swim. You can imagine the clever names we called the group.

Speaking of ripples, that brings us back to the stroke, which rippled from 2 cm to 6 cm, remember? And the rippling infections that came with it did even more damage. They impacted my pancreas. Ergo diabetes. Ergo danke shoen. Last night I dared to eat a mini doughnut that my son had left around. Ergo blood sugar chaos this morning.

Is there no end to the fun?

Speaking of fun, Mrs. Clawson evolved to become my sixth grade teacher, so she was my teacher for two of the 38 years she taught in my hometown. She lived to be 94, probably dipping and dabbling all the way.

Speaking of dipping, I’m trying to decide if I’m going to dip into another M.S. “disease modifying treatment” again, since the latest M.R.I. (see above) showed a new lesion, about which yippee. I’ve tried Avonex but gave up because it felt like I had the flu all the time (its best-known and worst side-effect), and of course I had to give up on BrainScar (if you’re not sure what that did to me, check the archives of this blog).

I’m considering Copaxone, which has been around a long time, and whose worst side effect is lipoatrophy. That means you might get dimples in your skin where you give yourself the little shot because the layer of fat under the skin gets flattened out.

Speaking of dimples, if I decide to start taking this drug, I will be sure to keep them out of sight. I get teased about dimples enough already.

 

Caught by my own simile

I’ve found that there are two kinds of neurologists: good ones and ones who see you as a bundle of nerve fibers.

I went through several of that type when we first moved to Olywa. The trick is to have no fear about leaving them. They don’t care what you think about them. You’re just a bundle of nerve fibers. Move on.

The best way to find a good neurologist, I have found, is to ask your local M.S. society about who is on their advisory board. That’s how I found my neurologists in Massachusetts and in Maine, but not here in Washington. Here, I went with my backup plan: stab around in the phone book until you give up and ask friends.

My neurologist is at Swedish Medical Center Neuroscience Institute, and I adore her. She appreciates the idiocy of M.S. as well as its seriousness. She is very clear in her discussion of symptoms and treatments, and has been my primary medical caregiver as I recover from The Blitz.

My most recent appointment was to discuss the results from a repeat M.R.I. I had in early March to see if there had been any further changes since the M.R.I. I had when my mom and sister were here, and to decide if I should try any other disease modifying treatment, since BrainScar hadn’t worked out so well for me.

She’s been careful not to blame BrainScar for The Blitz, however. She’s made a joke out of it: she doesn’t want to have to do the extra paperwork that would involve (although I know she’s actually done it). But every time I’ve seen her since The Blitz, she has come closer and closer to saying it. And this time she actually really practically came close to genuinely nearly saying it.

“She’s had a hard time with BrainScar,” she said, introducing a new doctor to my partner and me. Let me tell you, CF and I practically danced in our chairs when the two of them stepped out for a minute.

But after my doctor returned, the visit got harder. That’s when I broke down in tears. I don’t usually do that, because doctors don’t really like it. For one thing, my nose tends to run, and that just makes another symptom they have to deal with, as well as paperwork, about which see above, although the tissues in this case were handy.

And in this case it wasn’t clear at first if the tears were sad tears or happy tears because sometimes whether or not you have a brain trauma emotions get all scrambled in your brain and come out sideways from your head and no one can tell what in fact you are trying to say or do, and what you need is a sign or something you can show of a smiling face or a frowning face depending on what your tears mean.

I can tell I’ve gotten off-track here.

I cried because I didn’t know how to ask my neurologist if she thought I would ever get back to experiencing the world with the vibrancy I once did, if I would ever get back to thinking the way I once did. Would my mind ever again be full of a hundred different thoughts on a hundred different subjects? Would my imagination ever again take me to places I couldn’t find on any map, to worlds that existed decades before I was born, to ones that lived only in books? Would my head ever again be full of thoughts spilling over each other, like a roomful of filing cabinets on spring vacation, like a lake in springtime being filled by dozens of overflowing streams and rivers?

How could I explain this to her? How could I explain how slowly my brain worked now, how agonizing every thought was, how slowly each thought takes to form, how it takes me all week just to write one blog entry, how carrying on a conversation exhausts me, how trying to sound intelligent sometimes wasn’t worth the effort?

Then I spotted the bulletin board in the examination room.

“Like this,” I sputtered in my half-croak, pointing to a full-color brochure. “It used to be like this.” The brochure was golden yellow, red, blue, green, lively, lovely.

“But now,” I said, as I moved my hand to a poorly photocopied black-and-white flyer with a rainbow on it, “it’s like this.” The rainbow’s colors were drab grays.

And that’s when the best part of the visit came. Even though I was crying full-force now, I realized I was caught by my own simile. My brain had just worked. I had just constructed a rather tidy way to demonstrate to my doctor how things used to be, and how they were now. And she understood.

“I know, I know,” she said. “It will get better. You’ve been to hell in a hand basket.” And she hugged me.

Now that’s what I call a good neurologist.

 

Blackberries

Picking blackberries on a late summer afternoon at the beach with my sweetie. She loves them. I love to pick them because she loves to eat them. I love to feel the brambles brambling me because I know she will love to eat that juicy little orb just out of my reach. I love to find just the right one—just the right one—right over there—the one that thought it could escape me.

But you know, I think I’m done. My plastic bucket isn’t full, but I can hear the tide nibbling at the pebbly beach, and suddenly more than anything I want to sit in my little canvas chair and watch the water come and go. I mumble something towards my partner, about ten feet away, she mumbles something back, some cozy communication that we’ve perfected over nearly 30 years of sharing our lives, and I pick my way over the salty rocks and the drifted wood to our two chairs, set primly together in the afternoon sun.

My balance hasn’t been good for years, the result of multiple sclerosis that has its way with me as it pleases, but mostly I’ve been able to manage. My partner knows when to help, when to back off, so she stays in her own tangle of blackberries as I stumble just when I reach my chair.

Blackberries scatter between the chairs. I groan as I sink into mine and gather up nearly every one that has spilled. After all, I hadn’t even filled the bucket. I couldn’t shortchange my sweetheart any further.

She joins me a few minutes later.

“Did you drop your bucket?” she asks.

“Yes,” I tell her, “but I got most of them.”

She looks at me oddly.

It would be a month before I found out that in fact there were only a half dozen blackberries left in my bucket, that the rest were still scattered about, and that she sat next to me for a few minutes scooping the berries off the pebbles back into my basket without me noticing.

Much later that evening, she managed to get home and put them in the refrigerator. After she did, she turned the car around and drove right back to the hospital where she had left me, unconscious after a stroke and at least three seizures, after an ambulance crew had dragged me off the beach and, siren wailing, taken me to the local emergency room.

She would never eat a single one of those blackberries.