Three strikes or winning run?

Every summer, my partner’s sister, Peggy, comes to visit. She’s the one sister who still lives on the East Coast, despite concerted, whining efforts to get her to move out here to the West Coast where the other four daughters live, three in Washington and one in California.

Peggy is the one closest in age to CF, and they have been best friends their entire lives. When I had the seizures last August, even before we knew I had also had a stroke, Peggy and her younger daughter Sharon flew out here to help CF, because that’s what kind of people they are, always sticking their noses into everything.

No, not really. They just wanted to help. They kept CF going. And they kept our son, NF, going too. (Not to shortchange my friend, Amy, or my mom and sister, who also raced out here to help, or all our local family and friends, but right now I’m writing about Peggy.)

Here it is, summer again, although last night at the baseball game we sat swaddled in blankets and sweatshirts in 40 degree weather while NF’s team WON THE CHAMPIONSHIP, beating a team that had beaten them all season long, even though that other team was all 14-year-olds and they are all 13-year-olds no I am not bragging just stating facts now we move on to Pony-13 Regionals woo hoo oops back to what was I saying oh yeah.

Here it is, summer again, which means that it’s time for Peggy to visit. Normally, this is a time of great anticipation and excitement as we joyfully plan activities and prepare accommodations and race around desperately cleaning the house for her arrival. We especially need to fumigate NF’s room to remove all traces of dead and dying baseball socks, historical remnants of Hot Pockets, and gnarled bits of pizza crusts.

But I find that I am preoccupied with what Peggy will think of me.

The last time she saw me, I was essentially unable to walk more than 10 feet, and I was using a walker, the one with tennis ball feet. I had barely made it home from the dreaded rehab unit, the place where they kept me locked in my bed, the place where they made me wear the burqa-sized diaper, the place with Fox News All. The. Time.

The last time she saw me, I was a wreck. I could barely get out a sentence. I couldn’t remember what was going on, what had happened to me, what had happened the day before, what had happened an hour before. She’d come half-expecting to attend my funeral.

So what will she think of me now?

How scrutinizing will her scrutiny be? Does she expect me to be the model of health, a perfect physical specimen, ready to climb Mt. Rainier, the local vertical challenge, or swim Hood Canal, the local horizontal challenge? Does she expect me to conquer the television game shows, her mother’s daily challenge?

Or does she expect me to be the same semi-comprehensible semi-drooling semi-smiling semi-clothed semi-conscious dragabout that I was last September? I’m not sure I can go back there. For one thing, I’d have to load myself up with an awful lot of Vicodin to drool like that again. Not to mention to smile like that again. Not to mention clothe myself like that again.

Not to mention feed myself like that again. Back then, I was eating mostly cottage cheese and mandarin oranges. I’m not sure I can look at mandarin oranges again for another year or two. Or three. Or even at Mandarins. Or at oranges. Or at navels. Or navies. Or at the navels of naval officers. The Mandarin Navy was eating mandarin oranges as their navels were inspected by midriff-baring naval officers munching navel oranges. Or some such modern nightmare.

But back to Peggy and that fast-approaching day-mare. Why aren’t there day-mares? I mean, you can look up the word and find a definition, but not much else, not a full and juicy tradition like you can for nightmare. Guess the sunlight kind of ruins things. Oh, yeah, back to Peggy.

Peggy will be my first repeat visitor, so to speak. Most friends and relatives have been around me all the time. I see them every day, or every week, so they have seen me morph back to where I am, more or less. Peggy will see me all at once to where I’ve gotten, less or more, in one gigantic plop. Will she think, “OH!!” or “ohh…”?

She’s talked to me on the phone, so I suppose part of what she thinks of me depends on how well my voice carries on the phone, which I fear is not too well. I know the croak doesn’t work well on Ma Bell. Even CF has to ask all the time if I’m OK when we talk. Strike one?

And it also depends on what CF has told Peggy about how I’m doing. I think she paints a pretty positive picture, except I know that they like to play a woe-is-me game with each other about how much they each have to do. (“I made 45 meatballs today.” “So what, I made 55 meatballs.”) That might work against me, if CF moans about taking care of me. Strike two?

And it also depends on what time of day Peggy’s plane arrives. If she gets in late at night when I am frozen stiff with exhaustion from M.S. anyway, all of the progress from the last year will be hidden anyway. Strike three?

But I’m going for the long ball here, and I think Peggy will score the winning run. I think Peggy will take one look at me, throw down her carry-on bag, fling her arms around me and say, “You look great.”

A note about a previous blog: The truly obsessive among you might recall my obsessiveness over the word “co-worker” a few blogs ago, and how the managing editor at a newspaper where I worked insisted that we always use a hyphen in the word, so that it never be read as “cow orker” by mistake. Wouldn’t you know it: in our local rag, The Olympian, just this past week, its printed edition ran an obituary with the hyphenated word “cow-orker.” I was so happy! Yes, I saved it.




The Almighty Sprite

Last week CF and I went to the annual brain injury conference hosted by the Washington State Traumatic Brain Injury Council. We went to workshops, talks, lectures, and luncheons, and came away with the same conclusion:

We were pooped.

It was too many people in too small a space trying to do too much in too short a time and having too much fun doing it, but it was worth it. We knew only one other person, and were surprised to see her there, having had no idea that she had suffered a brain injury, and were happy to make several new friends, we hope. I came home and slept for two days, I think, at least according to the calendar I did, although it felt like about 45 minutes.

There’s something disorienting about being in a room with several hundred people all talking about brain injury. For one thing, you can’t tell who has a brain injury and who doesn’t, for the most part.

Sometimes the wheelchair is a giveaway, sometimes it’s not. Does that person use a cane because of a brain injury or because of an old football injury? Does that person stutter because she’s nervous or because of a brain injury?

Should I help that person pick up all those papers or is that an insult to his self-respect? Can I sit next to the person in the power wheelchair or is it reserved for her attendant? Is the front table in this workshop reserved for the deaf or can anyone sit there? Would it be rude to wear sunglasses, considering how bright the lights are in this room? If someone attends only the yoga and massage workouts during every class session, can he still apply for continuing education credit? If I have a brain injury, can I go to a workshop designed for caregivers?

You can see how confusing everything was.

What was also confusing was the topic of the conference: “Who am I now?” The subtitle was “Celebrating the journey to the new me.” I gotta tell you, I thought the conference did a pretty good job of asking the question, but just an OK job of celebrating the subtitle.

My memory’s a bit fuzzy, but I’m pretty sure my high school biology teacher was named Mr. Korn, and my high school horn teacher was named Mr. Koren, but the biology teacher did a pretty good job of teaching me basic anatomy, so I was comfortable following the discussions of what happens When Brains Go Bad in the workshops I attended. No, wait, Mr. Korn was chemistry. Mr. Berisso was bio. Never mind.

My point is, and for once I’ll get right to it, I did well enough with science in high school that I understand intellectually what happened to me with the stroke. It’s the cognitive synaptic disruptive non-happening part that has me stumped.

Celebrating the new me would be fine if the old me didn’t keep wondering where it went. Celebrating the new me would be dandy if the new me would just stop wobbling around and forgetting everything and staring into space all the time.

Celebrating the new me would be good if food didn’t taste so bizarre and if my skin didn’t exude this oily sweat and if my blood sugar would go back to normal and if music would stop hurting my ears and if I could talk without stumbling over my words or losing my voice or forgetting what numbers are or where roads go or what day it is.

To illustrate the “journey to the new me,” the conference had two inspirational speakers: Jason Crigler, a musician who had recovered from a devastating brain hemorrhage, and Ginny Ruffner, a conceptual artist who was in a serious car accident. Both told spellbinding stories of disaster and recovery.

But here’s the thing: Their new “me”s are essentially the same as their old “me”s.

Jason is still a singer and songwriter. Ginny is still a conceptual artist. Sure, it took them years to get back. Sure, Ginny has lots of trouble talking and walking. Sure, Jason has a shorter fuse (says his sister). Sure, they both paid a terrible price. Sure, they wish the whole thing never happened.

So what’s the message here? That eventually my new me will be as good as the old me? That some people luck out and get back everything they once had? That all of this fuss and muss and foot dragging and ball tossing and diaper wearing is just a round trip diversionary exercise foisted on us by some felicitous Almighty Sprite?

Well, Almighty Sprite, if that’s your game, your diaper is no match for me. I got you beat.

Driving Me Crazy

Here in Washington State, if your eyes roll back into your head and you twitch all over as if you have somehow plugged yourself into the high voltage switch where your electric dryer should go, you’re not supposed to drive for six months. They don’t send anybody out to check up on you to make sure, but they expect you to check in with your doctor before you get behind the wheel again.

They call it “being seizure free for six months,” and I am now officially well past that point. I have yet to drive the car down the driveway.

When I was trapped in the hospital wrapped in a burqa listening to Fox News All. The. Time., the thought of not driving for six months drove me out of my mind. Wait. Can I say that? My mind was not injured. It was my brain. So yes, I guess I can say it figuratively drove me out of my mind. I don’t want to conjure up any images of little slices of my brain flopping about the hospital without me. Continue reading

Spring, sprang, sprung

Now that I was a living, breathing troublemaker and not some mutant Medusa with a strep infection in her blood, the critical care unit was ready to unload me onto the regular neuro wing. So they double-knotted me into my bed and wheeled me off to the fifth floor.

Clearly they had phoned ahead to alert the nurses, because the first thing my new nurse did was clip the bed alarm onto my bed.

“This alarm will go off if you try to get out of bed,” she told me. I tried to smile at her, but she was glaring at me. So was my partner, CF. So was Amy. So was my partner’s sister, the one who came from out of town with her daughter, who was also glaring. At least that’s how I remember it.

I figured there wasn’t going to be just one tiny little leaf outside my door indicating a fall risk. No, there would be the entire tree, ripped off about four feet from the ground by a windstorm, its jagged trunk at just the right height to take out eyeballs, its massive shattered top blocking the roadway, crushing several cars and a stray puppy.

Yup, they had my number over here.

They also had mandarin oranges and cottage cheese, which I found to be a particularly tasty combination at that point in my recovery. I practically lived on it.

And they had the biggest diapers I have ever seen. No, bigger than that. No, bigger. If I put it on upside down, it would be a burqa. I am talking wrap-yourself-AND-your-double-bed-in-it big. Not that I had a double bed. It was your normal hospital cot-like bed. The diaper was way too big for it.

Not to get too technical, but I was using the diaper as a tool. I had to buzz for a nurse to get out of bed to get to the bathroom, but I usually couldn’t wait that long, if you know what I mean, so the diaper did the—ah—paperwork for me. That way, the nurse didn’t have to change the sheets, which I thought was a nice little gift from me.

I was trying to redeem myself. I wanted them to take down the big fallen tree sign outside my door and put up a smiley face. I wanted the nurses to fight over who got to bring me my mandarin oranges. I wanted to be their favorite patient.

Mostly I just wanted to sleep.