One lopsided circle

I remember walking into my grandmother’s house and suddenly there was a full meal on the table. I have a friend in Maine who somehow produces shortcakes by the dozens without moving a finger. My own partner, CF, can do a little spin and clean the kitchen in an instant.

I used to have one of these magical powers. I could install and understand software in 10 seconds. People flocked from miles around to have me burp their electronic marvels back to harmonious buzzing. My nephew wrote his college application essay about how I introduced him to computers, and now he’s finishing his degree in computer science. I glanced at new hardware and understood it. I was a full-fledged nerd.

But then came Aug. 28, 2011. That’s the day that lightning metaphorically struck me, scarring my brain exactly at the spot that gave me my wondrous power over computers.

It’s been over five months now, and I went through a grueling test of my lack of power today. I needed to put some antivirus software on an old computer for my son, so he could use it for his online school (he’s going solo this year). Now, this normally would have been a snooze of a job. Click a few keys, go get a cuppa. Instead, it turned into two hours of now I understand why people hate computers.

As I said, it’s an old computer. I cranked up Internet Explorer and went to the Comcast website, where, as a subscriber, I can get antivirus software for free. Oops, Comcast tells me, I have to have IE 7 or later, and this old buzzard has IE 6, which, fortunately, has a Windows Update button. Otherwise, I’d be lost.

Windows Update is an automatic tool that comes with Windows that’s supposed to run at certain intervals to figure out if your software needs to be updated. This old buzzard hadn’t even been turned on for a while, so nothing had been run. So first, Windows Update has to update itself, which requires a reboot. So, OK. I’m game.

Now Windows Update presents me with a list of Required Recommended Suggested Essential Probable Estimated Punctuated Quadrupled Actuated Separated Updatable Updates Among Which I May Choose Select All Select None Start Over.

Since now I am lost, I select Select None. Then I hunt through the list, which is longer than springtime, find Internet Explorer 8, which I believe is even younger than Internet Explorer 7, and click it. My luck holds, and in just a few seconds it is downloading and installing onto the computer. I am gayer than laughter.

The computer prestidigitates, and Internet Explorer 8 shimmers into view. Back to the Comcast web site I glide, feeling quite like my pre-Aug. 28, 2011 self. Download, install, click, click. I grab the Sunday paper and wait. The old buzzard is slow.

I don’t realize it now, but I have fallen into a trap. Some undamaged portion of my brain has recognized that I am performing a task that I’ve done many times before, and performing it well, and is bathing my brain in chocolate-covered waves. At the same time, the damaged portion of my brain forces me to keep sneaking a look at the monitor, as it obediently marks the progress of the installation.

And finally the trap is sprung.

The installation finishes, and I allow a smile across my face. I have succeede—What?? Not enough memory?

The antivirus software says it doesn’t have enough memory to run on this computer. All of those chocolate waves are gone. In their place are pulses of pain from behind my eyes moving backwards.

Having written software for a living, having written software installations for a living, I try to count the number of places a decent programmer could have written code to check to see if the computer being used was suitable. Obviously someone checked to make sure the right version of Internet Explorer was available. From what I recall, it is easy to check if enough memory is available.

Too many places. I can’t count them, the places a decent programmer could have checked memory, before I spent two hours rebooting and downloading and waiting and installing. I don’t know if I can’t count them because there are too many, or because my brain is addled, but in any event, they are there, and I have spent two hours going in one huge lopsided circle.

Nothing to do but take a nap. Without a diaper. I’m home, after all. No one’s chaining me to the bed.


Smile nicely and say goodbye

Nearly fourteen years ago, my partner’s parents were traveling in Ireland when her mother suffered a stroke. They were traveling with a tour group, and MaryAlice had purchased the optional tour insurance that had been offered; this insurance eventually covered nearly all of her medical expenses and the other extra expenses. But that’s not my point, although it is a good one.

And this isn’t my point either: she ended up in a hospital room in with a dozen other women, all of whom will be there for extended periods of time, most of them warehoused because they have had strokes. That’s what happens in Ireland to stroke victims. Weeks, months, years in a hospital room, no hope, no change, no chance of a future.

I’m still not at my point, but I’m getting there. To get through the situation, two of the five daughters in this family ended up going to Ireland to help out: Sarah, who was conveniently close by, bicycling in France, and my partner, CF, who had no children (at the time). A third, Nancy, would help out from the States.

The story is long and involved and involves lots of wobbly driving on the wrong side of the road and Waterford crystal and candy stripers delivering tea at tea time and sheep getting in the way and things that might have been charming if the Irish health care system hadn’t been so alarmingly backward that MaryAlice was trapped in an iron bed whose only feature was a huge iron crank that could be ratcheted to raise her head since extra pillows did not exist, nor, it seemed, did a single aspirin, not one, not a single aspirin. Sarah took charge of Dad; CF took on the doctors.

While CF was cornering doctors all over the hospital in Waterford, Nancy was calling everyone she could find at the various embassies in Washington, demanding that her mother be released from the no-hope ward.

And finally, here is my point: if you stand in one place and scream loud enough and long enough, if you stare into the eyes of the person who thinks they know better than you do, who thinks they know the patient better than you do, sometimes that smart-ass person, that doctor, says, “Hey, it’s your dime.”

That’s why CF’s mom was flown by medevac out of the hospital in Waterford to London with a doctor straight to Heathrow. From there she flew first class direct to Vancouver, B.C., and then rode in an ambulance, siren and lights, to Anacortes, Wash., where she was living at the time. That’s where she got physical therapy, speech therapy, and an aspirin.

Which really brings me to my point. When I wanted out of that rehab unit, I needed my partner like I never had before. I needed her to advocate for me in ways I am only now starting to understand. All I knew at the time was that I could not bear to be there anymore.

Fox News All The Time is what broke me, but having an alarm pinned to me didn’t help; wearing a diaper ten times too big was insulting; having to strip naked in front of strangers to prove that I could shower by myself was mortifying; realizing that someone else was rearranging my bathroom supplies was disgusting; and sitting at a table with complete strangers wearing pajamas to eat lunch was humiliating. Especially when they drooled and told you they were going home today and you knew they couldn’t even find their way back to their own rooms.

But back to my point. I had my advocate, my partner, who asked me, “Are you sure you want to go home?” and when I told her yes, she turned on her heel and made it happen.

I needed therapy but I didn’t need hospitalization. I didn’t need nursing care. I had a nice comfortable bed at home, and a partner who had already arranged to take family leave and so could be home with me.

She made it happen. I smiled nicely at the doctors, but she made it happen.



All. The. Time.

Here’s the thing about being in the hospital: either you’re on the verge of dying, or you’re on the verge of dying.


I mean, either you have so many tubes sticking in and out of you, and doctors and nurses poking and prodding and assessing and prognosticating and muttering that you’re about to croak, OR everything has been patched up so neatly and so well that there’s nothing left to do except wait for the doctor to finish talking on the phone so he can tell the head nurse so she can tell the nursing assistant so she can tell the orderly so he can get a wheelchair so he can wheel you out the door to physical therapy before you keel over from boredom.

The best part about going to P.T.—the best best part—is that it gets me away from the television. You’d think I’d appreciate the change in scenery, the chance to stretch my legs, someone with an intact brain to talk to perhaps, but all I care about it getting away from the television.

That roommate of mine? The 75-year-old living in sin with her boyfriend? Lipitor, Lipitor, Lipitor? She keeps the television on all the time. To Fox News.

All. The. Time.

The television is attached to the wall opposite our beds, near the ceiling. There’s a speaker built in to each bed. For some reason, mine won’t shut off. She is hard of hearing and keeps cranking the volume. Every time she leaves her bed, I turn off the television. She never takes the hint. I ask her to turn it off. She leaves it off for five minutes.

Fox News. All. The. Time.

P.T. for me consists of trying to walk with a walker. Yes, it has tennis balls cupped over the feet. No, I am not wearing two hospital gowns. I am wearing my own clothing. Well, sweat pants and tee shirt. And a gait belt.

A gait belt is a long strip of cotton webbing that gets buckled around your waist so the therapist can grab hold of you should you start to fall. Like the diapers, they’re built for two, so there’s a lashing and whipping of the extra stuff every time one goes on.

And they come in different colors. I don’t know if the color is significant, like a karate belt. Some people had fluorescent orange ones. I was sure I would get one of those, since I was still a FALL RISK. But no, I got an ordinary white one. Maybe the P.T. department didn’t prejudge.

Walking with a walker was hard. I found that I could not talk and walk at the same time. Being brain injured made that impossible. As near as I can reproduce it, this is how my brain felt when my therapist asked a question while I was trying to move my left foot:


which, loosely translated, means, “Can you lift that foot higher?”

But at least I couldn’t hear Fox News. All. The. Time.

My walk ended in the rehab unit’s cafeteria. This room has five big round tables flanked by sinks and refrigerators and a television. There are some magazines to read, mostly old copies of Arthritis Today and the hospital’s in-house monthly. We’re supposed to hang out here and chat. My therapist sat me down and got me a cup of ice water. At the table with me were two younger men, the only other residents who were younger than I am. We were the only people in the room.

I had just a split second to decide, before the therapist disappeared: did I stay with these two guys who were sitting two feet from a 36-inch T.V. watching some program featuring men with long bushy beards, lots of beer cans, and alligators, or did I go back to Fox News (which, for a split second of that split second, became one in my damaged brain, one huge bushy-haired beer-swilling no-new-taxes reptilian newscaster spewing about flecks of Obamacare), a decision so critical to my future that I was driven to my feet with all the urgency I could muster (took three rocks back and forth, as I recall, and a push off with both hands, and I had to grab the table).

“WAY!” I screamed. It was a strangled, warbled, garbled, indistinct, plaintive scream, but a scream nevertheless.

“Yes?” said the therapist as she turned back towards me.

“I want to go home,” I whispered.


Nurses are grand, wonderful people, devoted to making the lives of the sick and miserable less sick and miserable. I really do mean that. Most of them really are, even the ones who attach bed alarms to your bed. But they all have a little button on their right hip that they press whenever you complain about being tired, and when they press it, out chirps the same bright little voice, pre-recorded in some quaint garden in Nottinghamshire:

“Try to get some rest, dear.”

And then with a great silent whirl on inch-thick rubber soles, he/she is gone through the swirl of pastel curtains and you are left to wonder how, in the clatter of metal-on-metal surgical tools, china-on-china luncheon ware, and nurse-on-nurse shouting you are supposed to get some rest, dear.

It’s not exactly Mary Poppins.

It’s not even Mary Grantham, under whose care I am sure I would thrive, in any room in the mansion.

After impressing no one on the neurological unit with my charm, or steadiness of feet, I was moved to the rehab unit. The nurses and doctors give this a big buildup, because this is The Final Step! before going home! Here I will learn How To Take Care Of Myself! before going home!

Mostly I just want to sleep.

I don’t want to do physical therapy, I don’t want to do speech therapy, I don’t want to eat meals in a cafeteria with everyone else, I don’t want to watch T.V. and play games with everyone else.

Mostly I just want to sleep.

I am at least 15 years younger than everyone else in the unit, except for the guy who fell off the tire swing crossing over a river and the guy who crashed his motorcycle. My roommate, I notice, is the youngest woman, besides me, and she is a good 15 years older than I am.

She’s also a bit out of it, because she’s had a stroke, and she’s using that to mislead the nurses, I think, to hide her embarrassment. They want the name of someone close, in case of emergency, and she keeps giving them the name of her son, who is in Sri Lanka, or Indonesia, or someplace like that (that is, oceans away), pretending to misunderstand “close” (“There’s no one closer?”).

This is a Catholic hospital, you see, crucifix on the wall, saint in the name, and my theory, brain damaged though I am, is that she, brain damaged though she is, senior citizen that she is, doesn’t want to admit that she is living in sin with her boyfriend (for lack of a more modern word), that doing so will somehow put a big angry mark on her permanent record.

I want to yell at her that the box for LIVING IN WANTON LUSTFUL SIN is right above the box for LEZZBIAN but mostly I just want to sleep.

The nurses finally get over this closeness thing when the sinful boyfriend walks into the room and, clever Catholics that they are, they get his phone number for their charts. Unfortunately, they are not clever enough to get a list of my roommate’s medications from him before he leaves.

No, that list is extruded from her by a Greek chorus of nurses sometime after midnight, backlit on the curtain separating our beds like some bizarre shadow play:

“What medications do you take?” they intone.


“What? What medications do you take?”



“Mmfr! Mmfr!”

“Oh, Lipitor,” says the head of the chorus.

“Ah, Lipitor, Lipitor, Lipitor,” echo the rest, their arms fluttering as butterflies in the breeze.

I let the word float through my mind (Lipitor, Lipitor, Lipitor) and picture the little waves of the beach that day we were picking blackberries, the waves nipping on the worn salted stones (Lipitor, Lipitor, Lipitor) and I feel myself starting to not feel anything, that feeling of not feeling you get when you’re going to sleep.

“What other medications do you take?” Greek chorus.

And now I have to pee. Fortunately, the diaper is properly nestled from shoulder to knee.