Saturday, August 30, 2008

You Don’t Need ALS to Have a Bad Hair Day.

Scene: About 1970, the era of women’s wigs, at a major intersection in Glendale, me in my ‘66 Mustang (“Charlie Horse”), windows open, gorgeous summer afternoon, I’m pulled into the intersection waiting for the light to change to make a left turn. The light changes, the opposing cars stop, I start my turn and some creep guns it from the curb lane to beat the light, and broadsides my car.

My wig flips off my head out the window into the intersection. (“OMG, my wig !!!”). I pull the car out of the intersection to the curb, and duck down, trying to get the bobby pins out of my hair. I’m in my mid-30s, but most of my hair is already gray, and I just let it go and let it grow under my trusty wig. So I’m hunched over in the car, trying to comb my hair with my fingers, and people are crowded around, peering in the window, thinking I’m injured and in pain because I’m clawing at my hair.

Meanwhile, there is much commotion and screaming coming from the bus stop across the street.

From my left side rear-view mirror, I can see my wig in the intersection. Traffic goes one way, and it tumbles along in that direction a few times. A few people run over it. Then the light changes, and the wig starts tumbling in another direction. Back and forth and all around it tumbles in the center of the intersection.

From the distance, I hear a siren. Thank God, I think, I can hide out in an ambulance. But the ambulance pulls up to the bus stop, not to me. Someone gets loaded on a stretcher and it drives away.

Suddenly, a kid from the corner gas station pushes his way through the crowd around my car, holding my wig with his index finger and thumb, pinky in the air, like it was fresh road kill. He says, “Is this yours, lady?”

I grab it and shove it down on my head. Dignity restored, I let people pull me from the car. As I wait for the cops (the guy who plowed into me had only managed to get his car a half block, then he took off running. I learned later, the car had been stolen), I talk to the onlookers, or as I prefer to think of them, my defense witnesses, and get the whole story.

A woman at the bus stop, who happened to be an epileptic, saw my wig fly off, and thought it was my head. The screams I’d heard as my wig bounced around the intersection were hers. “The head! The head!” The woman then had a grand mal seizure. Hence the ambulance.

I noticed as I talked to the cops and the tow truck driver and my witnesses that people were looking at me very strangely and not getting any too close.

When I got home, I looked in the mirror ... and there I was, long gray hair sticking out all around my head, with the brown wig perched precariously on top ... backwards! ... with tread marks on it !!

To this day, I still make three right turns to avoid making one left turn at that intersection.

Saturday, August 16, 2008

Putting the Hell in Health Care

The worst thing about ALS so far is the paperwork.

Actually, that’s a bald-faced lie, but it makes a good lede. The real worsts, alphabetically, include cramps; dementia; drooling; fatigue; muscle atrophy; not being able to breathe, speak, or swallow normally; and twitches hither and thither.

But paperwork does make it into the top-40 annoyances. I have now accumulated five case managers, all busily managing my case for different purposes, and there are two more looming on the horizon, as soon as I can work them into my dance card. In the last two months, I have filled out more forms than H&R Block does in a year.

It seems that in the 21st century, you can’t just get sick any more and lie around complaining about how lousy you feel. Now you have to explain yourself to a lot of random strangers.

Among my current symptoms, I think dementia has the most potential for fun, but for now, let’s talk talking. In particular, talking with health-care providers who do not speak or understand English very well. Not that I’m judging them harshly for this, because, basically, I do not speak English any more, either. And unlike me, they’re going to get better and better at it. I’m just saying . . .

My speech is pretty much kaput and my voice is going fast, but I can still gurgle things out loud as long as there are no consonants involved. I wish I could speak clearly for just 20 minutes a week to take care of essential phone calls, but I know that even if that wish were granted and I called someone I needed desperately to talk to, I’d probably just be put on hold.

Here is a verbatim transcript of a phone call yesterday. I believe the caller was Russian, but I’m not too good at sorting out accents. Anyway, she was a newly hatched English speaker from somewhere.

Phone rings.

Hello? (In Beth Speak, this comes out “ehh owe?”)

Home Health Care Provider From Hell: Hi, this is XXXX, and I’m with XXX Home Health Care. Our nurse will come to see you this afternoon about 5 p.m.

(Surprised pause. I didn’t know I had a nurse.)

HHCPFH: Hello? Hello?

Yes, hello.

HHCPFH: Hi, this is XXXX, and I’m with XXX Home Health Care. Our nurse will come to see you this afternoon about 5 p.m.

That’s no good. We won’t be here.

HHCPFH: Where will you be?

Excuse me?

HHCPFH: Where are you going?

(long pause) Out.

HHCPFH: You won’t be there?

HHCPFH: When you do want us to come?

Uh ... how about Monday, early afternoon. (Beth Speak: “Uh, how uh but mun ay, ur eee af er nune?)

HHCPFH: Thursday?

No, Monday.

HHCPFH: You don’t want us to come today?

No, we won’t be here.

HHCPFH: You’ll be gone till Monday?

No, we’ll be gone this afternoon.

HHCPFH: You’ll be gone tomorrow? You won’t be home?

No, we’ll be home tomorrow.

HHCPFH: We can come tomorrow.

No, please come on Monday.

HHCPFH: You don’t want us to come tomorrow?

No, I want you to come on Monday.

HHCPFH: What time?

Early afternoon.

HHCPFH: OK, we’ll be there between 5 and 5:30.

No, early afternoon.

HHCPFH: Thursday afternoon?

No, Monday afternoon.

HHCPFH: OK, Monday, 5 o’clock.

No, early. EARLY. (Beth Speak: UR EEE!!)

HHCPFH: Thursday?


HHCPFH: Monday?


HHCPFH: What time?


HHCPFH: OK. We’ll be there at 5 o’clock.


HHCPFH: Why don’t you want us to come at 5?

It’s not a good time for me.

HHCPFH: What time do you want us to come?

(Long pause. Clearly, the concept of “early afternoon” is not ringing any bells with this woman. I think furiously: What words am I still able to pronouce that she might understand?)


HHCPFH: Hello? Are you there? Hello?

I'm here.

HHCPFH: When do you want us to come?

Monday, 1 p.m.

HHCPFH: OK, Monday. What time?

(At top of lungs) ONE O' CLOCK !!!


(whimper) Yes.

HHCPFH: OK. (click)

And just think — I get to sit down with this woman and chat about amyotrophic lateral sclerosis and frontotemporal dementia when she shows up Thursday at 5 p.m.

I think my dementia just kicked up a few more notches.