Victory laps

Forgive me if this seems rushed. I had another blog entry all ready to go, but then two things happened that I decided were more important to write about, so I rushed to write this. That’s a bit of a joke, since me rushing to write anything these days means it takes me four days instead of seven.

But as you can see, my mind tends to wander a bit now, so my writing wanders too, and I really should try to get to the point a bit earlier, because I do actually have two this time, both victories of a small nature.

The thing with a brain trauma is there is no triumphant re-entry to the real world. There is no gigantic cast that comes off to reveal a healed leg, or realigned elbow, or un-discombobulated innards (is the opposite of discombobulated innards combobulated outtards?). All there is with a brain trauma is a bunch of little tiny steps back towards maybe normal, maybe not. Maybe yourself, maybe not. Maybe your old self, maybe your new self. You never know.

These two victories I think are one of each: one of maybe my new self, one of maybe my old self.

My new self graduated from physical therapy. I still walk with a cane, but that’s mostly for my own sanity. It reminds me to be careful. I think it makes other people give me wider berth. And it comes in handy when I am about to take a header, which is what it’s for, after all, and I do come close to falling way too often. So I guess I still need it. @$#%%@. And it gives me cred when I use a disabled parking spot. You should see the glares otherwise. Just ’cause you can’t see it doesn’t mean it ain’t there, folks!

But the big deal here is that I can step over boxes and stand on one leg and toss a ball and catch it and stand up/sit down repeatedly all so well that my physical therapist says I don’t have to see him anymore. Either that or we finally just ran out of stuff to talk about.

These therapy sessions take place in a big room, and everybody is talking and stepping and shuffling and bouncing at once, one big happy trying-to-become-better group. Some of the folks are from the rehab center next door, the one from which I fled, and others are outpatients like me. Occasionally I spot a client younger than I am, but usually I am the spryest in the room. My therapist is thrilled that I can throw a ball, and we got quite involved in kicking a soccer ball around, and then graduated to throwing it against a wall, which necessitated moving to a different room, which, I think, is what rang the death knell on my therapy. I was too good.

To which I say, good riddance.

So I hobbled a victory lap on that one.

And then there’s the old me victory. This one involves the two women who came to visit me when I was unconscious in the ICU, Julia and Teri.

I’ve known Julia and Teri literally since the first week I moved to Olywa. Our sons were all in first grade together, and I met them on the first day of class. Julia’s family and my family were new in town, and Teri and some other mothers fledged us as neo-Northwesterners. Julia has been caring for my conure (a kind of parrot) since August, and Teri has driven me to and from physical therapy once or twice a week. They have been wonderful friends, and they have wanted to take me to lunch for months.

And finally I felt ready. Finishing therapy had something to do with it. The new me was set free to let the old me emerge.

Going out for lunch with friends might not seem like a big deal, but it is a huge undertaking to someone who cannot multitask. It involves a great deal of planning and timing, and I got almost all of it right.

I had to start to prepare the night before, because I needed to set an alarm so I would wake up in time (my seizure medication can zone me out midmorning); I had to remember to give myself my insulin shot because my partner had left at 4:30 that morning and wasn’t there to do it; I had to remember to get my son situated because my partner wasn’t there to do it; I had to make sure four cats and a dog weren’t fighting like, well, cats and dogs; and I had to remember to get my little thank-you gift for Teri together and that’s what I forgot.

We had a very nice lunch and I had to trick Teri into coming back into the house with me so I could scramble around and get her gift together to give to her to thank her for schlepping me to and from P.T. all of those times so the slightly gimpy new me could emerge, able to step over 8-inch tall boxes and toss a soccer ball against any wall quite ably, and the old me could go to lunch with Julia and Teri and carry on a conversation, all the while downing a rather tasty lunch of Thai Ginger with Tofu.

It’s nice when the old me gets along with the new me.

 

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.

 

Road trips

We really didn’t plan it, but my sister and I managed to give our mother a rather rollicking September this past year. She is a robust 85+, and still manages to ride the waves at the New Jersey shore each summer. Don’t laugh. Those pounders can fill your swimsuit with more sand than you can believe if you don’t know what you’re doing.

First, my sister’s oldest, Jen, the non-luger, set her wedding date for Labor Day weekend. This was the first grandchild wedding, a very big deal for my mom, of course. It was a big deal for me, too, my oldest niece, but I was having a hard time making plans to travel there. It would be a long and exhausting trip that would take me days to recover from, because of M.S. My sister suggested flying in a week early, so I could recover, but I didn’t think I could take that much time off from work. I was in a dither about it all. This, remember, is all before The Blitz (the stroke).

Little did I know that my inability to make plans, my annoyance with everyone pestering me to make decisions, my frustration with the necessity to do something was because of this new medication, this stuff I have come to call BrainScar, this stuff that would cause the stroke in a few days.

Wasn’t that great timing? I never had to make that decision about going to the wedding! I was in a coma! Jen’s wedding was planned for the “camp” her stepdad runs every summer in the Adirondacks, which meant I didn’t have to fly cross-country after all. I mean, if you’re going to have a stroke, at least plan it so you can save on airfare.

But the tricky thing was my partner, CF, now needed to tell my sister, Cindy, that we wouldn’t be at the wedding. Seemed polite to let them know. After all, we’d known Jen all her life. But CF knew my mother would drop everything and come racing out to Washington, at the expense of missing the wedding. And she knew I would be not like that (assuming, of course, that I recovered, which, at that time, was uncertain).

Actually, no one knew at this point that I had had a stroke. All they knew was that I had had some seizures. That’s what CF told Cindy. And Cindy downplayed the whole thing with our mother. And, as I understand things, the wedding went well. The pictures sure are nice.

The wedding couple on the dock after the ceremony

The wedding couple on the dock after the ceremony

So that’s how Cindy gave our mom a rollicking September. My part in the rollick (which I just learned is a blend of romp and frolic) came later in the month when Cindy and Mom made the cross-country trip to Olywa for a bit of hands-on healing.

I had escaped from Rehab by now, was free from Fox News All. The. Time., tilting around the house with that good ole’ tennis-balled walker, stammering and stuttering, still eating mostly cottage cheese and mandarin oranges, trying to figure out what had happened to me.

The big activity planned for their visit was a trip to the hospital for an M.R.I. My neurologist had been muttering dark things about me having had a stroke in addition to the seizures, but until now nothing had been confirmed. Where the idea of a stroke came from I do not know, but it was out there, and we were going to look into my brain for confirmation.

It would take an hour to drive to the hospital for the M.R.I., which reminded me of the trips we used to make to the orthodontist when we were kids. My sister and I would ride with our mom to the orthodontist so my sister could get her teeth fixed. I just needed a retainer, but she needed the whole mouthful. My mom drove a 1961 black Volkswagen beetle, on which little worked. The heat was permanently on, and burned our ankles; the speedometer needle one day spun around in viciously fast circles until it flung itself off its spindle and collapsed; and the turn signals beat double, triple, or no time, depending on unknown factors. The car had a real, big, yank-it-back sun roof and German inscriptions. Mom hated that the dashboard said FAHRT instead of START. Cindy hated that we opened the sun roof and sang “O Holy Night” at the tops of our lungs, no matter the season, on our way home. I hated my retainer.

My sister’s shiny rental car FAHRTed fine, no sunroof, no singing, no singeing (of burned ankles), and I believe they were properly impressed by our side trip to Snoqualmie Falls.

The hardest part of a day like this is that I have two different kinds of expert medical advice with me, neither of which can give me a speck of information about what’s going on. The first is the knowledge of the M.R.I. technician, who stares at the inside of my brain for a good 45 minutes or so, but will he tell me whether or not I had a stroke? No, of course not, don’t even ask, because the radiologist has to interpret the film, don’t cha know, and that will take days.

And the other kind of expert medical advice is my mother, who has given me advice all of my life, like mothers everywhere: “Wash that better so it doesn’t get infected.” “Drink all of this tea and you’ll be fine by morning.” “Because I said so.” But she can’t give me a speck of information on this, you see, because they don’t give mothers any information on what to do if their daughters come down with incurable diseases such as M.S. and then have strokes caused by “disease modifying medications” such as BrainScar that are supposed to help them with it. There is no helpful little booklet called How To Help Your Child After A Stroke Caused By BrainScarTM. In fact, there is no information anywhere on how to help anyone who has had a stroke caused by BrainScar.

For the first time in years, I cannot look my mother in the face. Her eyes hurt me, because I know she is looking at me and for the first time not seeing me as her 2-year-old toddler, as her 10-year-old swimming champ, or as her 21-year-old college wunderkind, but as a 60-year-old stroke victim. I know that suddenly all of those illusions are broken for both of us. We are suddenly who we are.

Mom at wedding

Mom at wedding

Tunnel Vision

My sister has one of the best summer jobs around: all she has to do is go to happy hour every day. All her meals are made for her, her house is cleaned for her, her kids are taken care of, she gets to play golf and tennis and swim—she just has to be home for happy hour. Of course, I exaggerate a bit. She gets this summer of luxury only because her husband is working his butt off running a summer camp on Saranac Lake in the Adirondack Mountains in New York for Saint Lawrence University. Her duties as the director’s wife are rather loosely defined, but she does have a pretty light schedule.

When we visited her there the first time, I was intrigued by how close the “camp” was to Lake Placid and the remnants of the town’s Olympic glories. Sonja Henie won her third consecutive gold medal there in 1932, artificial snow was used for the first time at the 1980 Olympics, and the Miracle on Ice happened there in 1980. Maybe someday when we visit we’ll pull ourselves away from dockside long enough to visit some historical sites. On our way to buy more suntan lotion maybe.

But what really intrigued me was the training center for future Olympic athletes there. My 10-year-old niece was a budding athlete at the time, and I had dreams of her training to become a bobsledder or luger (sliding downhill on a bobsled track while lying on your back on a little sled, something I had always wanted to do—really!). I knew Jen liked these things, since I still have nightmares about a time years earlier when we babysat her, and she took off downhill in her Big Wheel—she was maybe two years old—and CF and I chased after her, convinced the neighbors were all calling the police.

Jen never became a luger but instead played field hockey and lacrosse, good enough to play varsity at a very competitive college level, but I never gave up my dream to ride the slide. My sister and I revisited the wicked steep hills of our youth, marveled at our daring, and I even managed a run down that childhood hill that would have won $10,000 on America’s Funniest Videos, if we’d brought a camera.

Then I got M.S.

No more luge for me. No more sledding. No more bicycling, no more roller coasters, no more grocery shopping, no more escalators, no more riding in glass-walled elevators. It all made me too dizzy, too nauseated, too wobbly. I either fell over, vomited, or passed out. Or all three.

Then I discovered the little-known world of M.S. patients: the M.R.I. tunnel. The doctors tell you it stands for Magnetic Resonance Imaging, and that they slide you inside this tube so magnets can align themselves to take images of your brain (and make honking loud noises while they do so), but which I realize actually stands for Multiple Rocks and Ice.

If you watch a real luge race, you see that the racer has to sit up and rock back and forth a bit to get little bit of speed going before pushing off, and then lie down flat on her back, point her toes and hold perfectly still for the rest of the race (except to wiggle her toes a bit to steer). So that’s what you do in the M.R.I. You sit up and rock back and forth a bit until they tell you to lie down, then they back you into the tunnel, and you hold perfectly still. There you are in this world of white ice and snow, being bombarded with the sound of rocks being thrown at you.

It’s all slightly hallucinogenic anyway, four of your five senses deprived, easy to slip out of reality, since your head is strapped into place, you probably have a headset on, a heated blanket over part of your body, irregular loud loud loud clanking bonking noises coming from nowhere, your elbows smashed into your ribs, your nose oh please don’t let it start to itch, when you find yourself on the luge run at Lake Placid, yes, you can hear the crowd just outside the track, the horns bleating, drums banging, they are cheering for you as you round the omega curve, as you sweep through the backstretch, take the high curve easily, 55 miles per hour, you are sailing, you can feel the sled beneath you responding to the slight tips of your toes—

“Just a few more minutes and we’ll be done.” It’s the lab technician, tumbling you off the mountain and back into his dark little magnetized world.

Here you are stuck in a dark little tunnel with a cold blanket on top of you, earphones jammed on your head and uncomfortably loud noises crashing in your ears.

M.S. sucks. And my nose itches.