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?
No.
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?
NO! NO! MONDAY!!
HHCPFH: Monday?
Yes.
HHCPFH: What time?
EARLY FREAKIN’ AFTERNOON!!
HHCPFH: OK. We’ll be there at 5 o’clock.
NO! NO GOOD! MAKE IT EARLIER!
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?)
One.
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 !!!
HHCPFH: One?
(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.