Thursday, October 30, 2008

Random Thoughts and Allison

Random thoughts as I wait for the sleeping pill to kick in:

1) Would John and Sarah refer to me as Carla the Canadian, Carla the Singer or Carla the Cripple?
2) New Rule: if I don’t know you and you pat me on the head I’m going to lick your face and hump your leg.
3) My friends keep buying me lovely clothes so I look like something of a dandy….a handi-dandy – get it?
4) I can’t move my left hand much and have lots of trouble with my right hand AND I STILL DO COOLER AIR QUOTES THAN JOHN MCCAIN! He looks like he’s trying to grab a rodent in his talons.
5) The best place I know to get political information is and click on THE MUSE in the top right corner
6) That’s my son’s blog.
7) Allison starts chemo tomorrow so if you like praying, send her courage, humor and a strong tummy. If you don’t like praying, send her positive thoughts and intentions. She’s a tough cookie with a creamy middle and two adorable kids who need her attention. I loved listening to her describe my brother today. “He’s such a nice man” she kept repeating. Good way to feel after 2 kids together. While you’re praying, throw in one for my baby bro.
8) Don’t tell the universe but I’m feeling optimistic today.
9) If you heard that universe, please don’t shit on me.
10) If you only had to feel love for people to be considered a slut I’d be the skankiest whore in town because I love all y’all Muselings.

Wednesday, October 29, 2008

The Best Damned Medical Team Ever...Period

Dr. Katz suggested I write a blog about him called “The Best Doctor Ever” since
“Worst Doctor Ever” blog shows up on the first page when you google Dr. Collier. What I would prefer to do is refer to the entire Forbes Norris ALS Clinic as “The Best Damned Medical Team Ever…Period.” They are number one. All other teams are number two or lower.

Kathy and Wendy came along to Clinic yesterday – 5 hours plus an hour of commute each way, plus the inevitable folding and unfolding of the chair and other heavy lifting. Kathy taking excruciatingly detailed notes, Wendy asking technical questions and getting marching orders ( like sew loops on blankets since I can’t pull them over myself in the middle of the night without great difficulty and frustration. I have to say I was disappointed in Wendy. It took her an entire 24 hours to complete the blanket retrofit sewing project and all she had to do besides that was pick her dog up from chemotherapy, feed her family, drive my son to his dentist appointment, buy me towels, hand and leg warmers, fill my prescription and have lunch with me, fold and unfold my wheelchair 6 times - 8 if you count the Clinic day. What a slacker! God knows how long it will take her to put magnets on the buttons of the sweater she bought me – it’s already been hours for pete’s sake.

But back to Clinic. Don’t get me wrong – the clinic days are really tough. They are long and offer me an unwelcome glimpse into the future. I need to go to bed immediately upon returning from a day there then I need to turn in early for the night which is hard when I need to wait on an accomplice to undress me. Nevertheless, I love those guys. For the purposes of their privacy, I won’t tell you their name when they are acting outside typical healthcare protocol since I don’t want them to get into trouble, but I will use their names to give flat out kudos or absolutely necessary fashion kudos/critiques.

So I hate my breathing machine and on my list of questions for them I had written just:“fucking bipap” which is what the machine is called ...bipap that is. "Fucking" was an editorial statement of sorts.

“Okay” says a certain gray haired man there whom I love “I’ll go ask about the fucking bipap.”
“I hear you’re having trouble with the fucking bipap” says the next lovely woman who comes in.
What I appreciate ( speaking as a professional) more than anything is the impeccable understated comedic timing.

Likewise, when I was explaining to someone else ( hint – she’s the sexy one) the instructions I was given for my toe she said “Wait –did Dr. Douche tell you to do that?”
Somebody reads the blog.

They are so damned real, funny, human and above all smart. They don’t act like any healthcare professionals I’ve ever encountered. I remember when my friend Bill’s fiancĂ© was in Med School he described the process as “them” attempting to suck all the personality out of her. My anecdotal experience is that usually that works (no, not you Barry) but not with this group of misfits. They could have their own wacky TV dramedy which I should write and make a ton of money.

Carissa - sister redhead referred to me as “my Carla” which makes a gal feel welcome to say the least. Bob can quote from the blog and has a wicked glint in his eye that belies the image of soft-spoken avuncular gentleman. Stacey’s mirror neurons fire so strong that the minute I started crying her big round eyes welled up like an anime characters’. Dr. Katz takes his time. He’s usually outlandishly funny but yesterday he silently held the space for me while I cried, then later had the balls to tease me about a sore spot of mine (actually the sore spot is no longer mine – we split up), which delighted me to no end, If you’re going to tease, go all the way. Mike M ( or as Sarah Palin and John McCain would call him “Mike the Wheelchair Guy” ) has eyes that shine like a lighthouse when he talks about his son and "one take Jake's" music career. It always puts me in a good mood. Bobby (the Cowboy) has enough personality for four people and is supportive, loving and naughty (thank god!) Lee is extremely conscientious and determined to make the fucking bipap work for me.

I didn’t see Jodi, Dallas, Jan, Dee or Cheryl yesterday but they are all awesome as well. And those of you at Clinic that read this – maybe there’s a way – perhaps a fortune cookie message – to convey to Dr. M that when he’s rocking the turtleneck he’s a damned good looking guy but it’s not possible to rock a bow tie unless it’s part of a tux and you’re James Bond about to nail someone ( take that in either context). He looked dashing. 15 years younger AND he was sick with a cold. If something isn’t done about it I may need to make it a “last request.”

“Apparently the last words she blinked were: tell Dr. M – turtlenecks! Then she closed her eyes forever.”

Tuesday, October 28, 2008

Jeannine's Favorite Things Entry

I love this, partly because Jeannine Frank rhymes so well and partly because she says I'm "fucking pretty" which I take to mean pretty enough get the idea. Stay tuned tomorrow for a Forbes Norris ALS Clinic Post (it's all done in my head, I just need to type it.)

Here's Jeannine:

Carla writes songs when the goin’ gets shitty
All that she faces – and so fucking pretty!
Tooling around in her really cool chair
Ever the knock-out with “to dye for” hair!

Old friends and strangers just can’t wait to log in
Anxious to read what this genius is bloggin’
Knowing we’re likely to both laugh and cry
Carla reminds us to live til we die

When our stocks plunge
When our friends sponge
When we’re feeling stressed
We click on your site – and we’re good for the night
Just knowing you makes us blessed!

Monday, October 27, 2008

Top Ten Ways to Feel Better after a Shitty Month

I'm too wiped to write a blog today but this is from yesterday. i am also including a poem and an announcement: Jeannine proposes a "My Favorite Things Lyric Contest" in response to my last post. I'll post her entry as soon as she gives me the green light - it's awesome.

here's the other 2 things.

Top Ten Ways to Feel Better after a Shitty Month:

1) Plan a cool Halloween costume. Consider dressing up as Larry Flynt, George Wallace or “Wheelchair-dude-Joe-Biden-told-to-stand-up-and-take-a-bow.”
2) Tattoo “out of order” signs on your feet.
3) Wheel around in nature.
4) Get a super cool cape or a poncho so that when it gets cold, Mac doesn’t have to button your coat for you.
5) Watch debate footage of John McCain wandering around like Grandad in his slippers with his robe hanging open. Do this repeatedly whenever you’re blue. Email the link to Republicans.
6) Dress like a mermaid and tell people you only need a wheelchair when you’re on land.
7) Go someplace by yourself.
8) Skip town.
9) Make a youtube video.
10) Carry a sign with you when you go to Marin that says “ You lose!” and hold it up to those rare cars with McCain/Palin bumper stickers. Don’t forget shit-eating grin.

The Patience of Ordinary Things

by Pat Schneider

It is a kind of love, is it not?
How the cup holds the tea,
How the chair stands sturdy and foursquare,
How the floor receives the bottoms of shoes
Or toes. How soles of feet know
Where they're supposed to be.
I've been thinking about the patience
Of ordinary things, how clothes
Wait respectfully in closets
And soap dries quietly in the dish,
And towels drink the wet
From the skin of the back.
And the lovely repetition of stairs.
And what is more generous than a window?

"The Patience of Ordinary Things" by Pat Schneider from Another River: New and Selected Poems.

Tuesday, October 21, 2008

My Favorite Things

Can’t seem to kick this cold, which I’ve had for most of this month. The coughing is triggering laryngal spasms, which leave me wheezing and barely breathing. The good news is that I’m told these spasms are in no way life threatening. Dallas at the clinic says “You feel like you’re going to die but you won’t.” Apparently it’s a common ALS symptom. The key is to remain calm so if you’re with me and this happens, just chill. Unfortunately, laughter is a trigger – given the number of times a day I belly-laugh I’d say I’m a high-risk patient.

Jason was here Friday and Saturday. He’s one of the best people I know and I never get to see him. I love how generous he and Allison are with sharing their kids with me and I treasure every story. Thanks to those of you who wrote in with hat suggestions. Looking well-turned out is surprising healing and I should know. I want her to look like a chic New Yorker on the street when she ventures out to greet the world.

Don’t know when I will get to water walk again between the toe (6 weeks in the bloody boot) and the cold. That bums me out immensely BUT here’s the good news: I have a gig at Yoshi’s!! Day before Thanksgiving (November 26th) with my usual cast of characters plus horns. Yoshi’s is really tough to fill so start guilting your Bay Area friends into going now!

I really like my new accomplice. We both love yoga and Johnny Depp and we have the same pink bra from American Apparel. I told her it’s Johnny’s favorite bra. I have 2 night time accomplices, Katie and Desiree who only work 30 minutes a night. They both seem nice too.

So Maggie, one of our wonderful Irish sisters, wrote in with a bittersweet commode story which she prefaced by saying something like “there are no pleasant moments with ALS.” This challenged me to do two things: 1) buy bright red underwear to avoid commode mishaps (okay, they’re also really cute) and 2) come up with a list of pleasant ALS aspects though I must agree with Maggie that ALS moments can only be categorized as bittersweet at best. That being said, here are my favorite things about ALS. Please sing this out loud to the tune of “My Favorite Things.” If possible affect a British accent and dance around like Julie Andrews.

I don’t do dishes and people massage me
Ask for a blog comment, Muselings barrage me
Don’t ever stand on line at Trader Joe’s
ALS has a good side I suppose

I never drive so gas prices don’t phase me
People confide crazy shit to amaze me
Don’t do laundry, don’t fold, don’t touch a vacuum hose
ALS has a good side I suppose

When life blows chunks
There’s this cute hunk
Who cooks all my meals
I sit on my ass, tell a joke, pass some gas
Like the luckiest girl on wheels.

Friday, October 17, 2008

The Worst Doctor Ever

Okay so lately my life has felt like a funnier but equally painful version of a Chevy Chase movie: Terminal Lampoon 3 or something like that. The gods don’t shit this hard on anyone who hasn’t slept with Zeus and incurred Hera’s wrath (which I’m pretty didn’t happen cuz I would have notice a thunderbolt that big) so I’m starting to wonder “what the f$&k?”

So I wrote in my last post about being pain free then immediately wheeled straight into a desk and busted up my big toe. Now it is nearly impossible to go to the bathroom since I can barely balance on two feet, let alone one. My foot throbs, I can’t put any weight on it and I’m even more in need of help than I was before. On top of that, the doctor I saw (let’s just call him Dr. Evan Collier….cuz that’s his name) wins the “I’m a Douche-bag 2008” Award and between George Bush, Sarah Palin and others it was pretty stiff competition this year. Like Palin and Bush, this doctor ( Evan Collier) blends douchebaggery with ignorance as he thought it would be easier to have a broken toe with ALS. “You’re lucky” he said to me. “Yeah,” I said “Apart from the whole fatal illness thing.” “Well, you know” he says “Go Stephen Hawking.” Someone slept through sensitivity training. Because I’m in a wheelchair, my fist was right at the height of his gigantic balls and I wanted so very much to punch them. He had started out the exam admonishing us for coming in on an emergency basis….for a goddamn emergency…and asked couldn’t we have waited until the afternoon when it was better for him. He also repeated the same question about the color of my toes about 3 or 4 times, getting slower, louder and more irritated each time, finally prompting me to say “I’m in a wheelchair, I’m not retarded.”

He better pray that someone else has already bought the domain name

Now that I’ve got that off my chest….

With the help of Edith I have now hired an accomplice 3 days a week. This will take some of the burden off of my friends and ease me into the whole idea of someone here helping me. Ironically, I think it might give me more freedom. The young woman we hired is Mayra and she’s smart, strong and beautiful. I like her. I now have a professional person to do my physio 3 days a week and Mayra is a Pilates and Yoga teacher so she will take over 2 days – again freeing my friends to be friends a little more of the time – not that being my friend doesn’t require some heavy lifting.

I was thinking about all of you Muselings and how you buoy me through these challenging moments. I was thinking of you as I was making a choice whether to go back to being miserable in light of recent events or to march onward. I thought about those of you who are true ladies and gentlemen who would never use the kind of language I do chuckling at my calling Dr. Douche out and how you are now commenting to one another and how we have woven a web of connectedness across this impersonal medium and I decided not to be sad – a little pissed off perhaps but not sad.

My son said the other day “You’re like Job only instead of affirming your faith in God you keep yelling “Fuck you, is that the best you’ve got?” Hmmmm. If that’s the case, maybe I need a more diplomatic tactic.

My fabulous brother is due here any minute. I have 48 hours to get in as much Jason time as I can before he returns to Allison who starts chemo soon. If you know of amazing online hat sites, hip me to them. I want her to be the most gorgeous bald woman ever – she’s no Britanny!

Finally – Jay (aka redscoutdog): I won’t be at the walk but I would love to meet your dad. He can look up my friend Alison who will be walking for Driving Miss Craisy or you can send me your contact info ( I won’t publish it) and I’ll be in touch.

I love you Muselings. Have a great weekend.

Tuesday, October 14, 2008

She Ain't Heavy...

I bought a little IPOD shuffle and a waterproof case with waterproof earplugs. If I am going to be confined to a wheelchair, I need my exercise so as soon as I’m well I intend to water walk every day whilst I listen to my tunes. I cleaned my ITunes out of any random music that I didn’t want to hear on the shuffle since a) I can’t control the buttons on the shuffle by myself and b) I don’t want to hear karaoke versions of Copacabana, toilet flush and gunshot sound effects or yoga lessons while I water walk. While I was cleaning up the tunes I came across a recording of my ex singing a song he had written. His voice sounded sweet and to my surprise I was reminded of the fact that I used to love him very much. It’s so easy to forget that when someone has exhausted all your good will, but there it is. I did love him. Part of me wants so much to invent a past in which I never loved him but I did. Life is messy like that.

There is very little in my life that isn’t full of complications and contradictions and so much effort goes into accepting all of it – the hilarious heartache - the tragic farce. Wendy and I were marveling today at all the hits I’ve taken in the past couple of weeks, yet how quickly I’ve bounced back. Can’t walk? Fine, I’ll go to the pool. Doesn’t work out with a guy I like? Move on. I’m taking the hits and playing rope-a-dope with ALS or the gods or maybe myself, I don’t know. I don’t have time to stay depressed – it’s life in the fast lane (remember that song by the Eagles? “She was terminally pretty…”)

But still the complexity of it all challenges me. I want to be able to make a certain sense and order out of my life like how Kris swoops in to the chaos that is my apartment to organize and label my shelves and drawers. Life is not so simple though and there are things that don’t seem to fit into any large category in my mind, relationships I will no doubt go to the grave without having resolved and things I will never fully understand try as I might to get a handle on them.

What I do know is: it’s another gorgeous day. I’m pain-free. My son is growing up to be the most interesting and committed man. I have the best group of friends that exist in the known universe. I have a family I love that loves me very much and tells me so in no uncertain terms. I’m blessed with a helium spirit and I choose to be happy.

Yesterday Kathy was trying to figure out how to get me into a house they are looking at for me. It is not yet ramped so it would require someone to carry me in to see it. We discovered that Mac can carry me around with great ease. How strange. For years I carried him around and now he is cooking me dinners, helping me with bottles and even lifting me up. There was something oddly comforting about it – when I go, I will leave a strong and capable man behind who happens to be my baby but who is ready and able to carry this weight.

Monday, October 13, 2008

You think ALS Sucks? Try the Common Cold.

Now I know why people with ALS have to avoid colds. Wow. In the daytime it’s a normal awful cold for the most part, punctuating with bouts of wheezing, choking and gagging. Night time is another story. Sheer misery. I’m barely able to breathe, I get winded rolling over in bed ( which takes me some time anyway to be fair) and I get stuff caught in my throat that makes me gag and not be able to breathe at all. Very scary.

First Mac then Kathy pointed out that an email we had gotten from Mary whose husband Brian had ALS (see blog entitled Brian’s Song) said immediately call the doctor at the first sign of a cold. This was of course the one instruction I didn’t follow since I didn’t get the email til AFTER the first sign and I’m very literal. Just kidding. I just hate calling doctors is the thing.

The upshot is I called Dallas, the research nurse in charge of the lithium study I’m on and now I have a plan of action now and I’m doing better- had a decent sleep and no wheezing/choking until morning. Big improvement. As winter comes, the prime directive seems to be stay warm and germ free. Kathy and I were already scheming about clothing that is both warm and easy for someone to help me with in the bathroom since staying germ free means drinking lots of fluids means peeing a lot means lots of muscle power for my accomplices. We came up with skirts with thigh high socks – easy to negotiate yet a little saucy for the naughty cripple in the know. Don’t suggest crotchless panties, please – after all I might catch a draft!

So one of the things I like about being single ( I like almost everything actually) is that if you have a husband, other men don’t help you fix shit because they think your husband can do it which would in my case have been ever so faulty of an assumption. On Friday Jon Evans noticed that the brake and the wheel on my wheelchair weren’t lining up just right. I had noticed this too but ignored it. Upshot is I was about a day away from losing a wheel, which was narrowly averted by his eagle eye and mechanical skills. I whip around pretty fast in that chair so loosing a wheel could have been ugly.

In the meantime I have Wendy’s husband Barry selling my beloved Miata, installing off-set hinges on doors and fixing a loose threshold made looser by my reckless driving. It’s like when you go out of town and they give you an upgrade at the rent-a-car place and you’re driving around in a vastly superior vehicle to your own at home AND you don’t have to take care of it since it belongs to someone else. Rent-a-Man!

I officiated another wedding today and think I would have made it through had the wedding started only half an hour late rather than one and a half hours late. I thought that only happened in romantic comedies. What doesn’t happen in those movies is your minister doesn’t call in a pinch hitter because she can’t be understood. That’s what happened. As I can’t drain the mucus it pools up so I am virtually unintelligible. Luckily Sofia ( who jumped in to pinch-sing at the last wedding when I broke down crying in the middle of the tune) read the service until the point where I could talk again. She also took me home and got me out of my dress which she did at the last wedding too. The next wedding I’m supposed to officiate assuming I can is hers so we need to find a new Sofia before then.

If I ever get a cold again, I’m going hunting with Dick Cheney.

Thursday, October 09, 2008

Is that a Wheelchair or a Crazy Magnet?

My close friends say that I’m a crazy person magnet. It’s somewhat true. Strangers say things to me that I would only tell my best friends. In the grocery store line someone will tell me about the special meal they are preparing and why. Waiters will pull up a seat and tell me they are considering dropping out of college. A 70 year old lady at the pool flashed her tits to me ( Oh yes she did and they were outstanding. I know 45 year olds who would be thrilled to have this lady’s rack).

My son, who likes philosophy says that my problem is that I view everyone as “I-you” and no one as “I-it.” I disagree. It’s the red hair. Red heads are by definition mutants. Freaks. Crazy people look at the hair and they see a fellow outcast. Throw in a wheelchair and you have a perfect storm.

Today’s crazy sightings were the flower delivery guy and the wedding site grounds manager. The flower delivery guy – a smooth customer sporting a grey parka and a Borat-style accent says to me:

“Do you get deez flawerz fram your boyFREN?”
“Highly improbable” answer I.
“Well den” he leers “ I weel like to be your boyFREN,.”

Now as much as I love a man who’s missing a tooth or two, this feels a bit sudden to me and I hate to rush into things. I have Kathy on hold for which I’m grateful particularly when he asks me :

“ Do you not have sam wan to help you here?”
“Yes” I reply “This is her on the phone now.”

I don’t know what scares me more – the thought that he was buttering me up for a tip and that was his best play ( for once in my life, I stiffed him) or that he was some kind of wheelchair predator.

Later in the evening I go a wedding rehearsal for this Sunday’s upcoming nuptials where once again, I’m officiating. The wedding is taking place in the heart of the ghetto and the grizzled groundskeeper smells like he lives on one of the nearby streets. Again he is a tooth or two short (swoon) and he has nautical tattoos on his forearms – or at least they appear nautical – they are faded beyond recognition and so is he. After the rehearsal he asks me about my ministry and I explain that I’m ordained by the internet. I am pretty sure this guy hasn’t heard of the internet and he continues to refer to my ministry as though I’m L. Ron Hubbard, despite me insisting I just like marrying people. He himself started a church in his livingroom but ultimately decided to expand to a “sidewalk ministry” which shifts locations periodically. Yep. He’s a crazy man who talks about Jesus on street corners and of the 15 people at the rehearsal he found me.

Then comes the inevitable question about the wheelchair, my answer and the surprising response.

“God chose you for this ministry. You are god’s hand and you bring a great gift to all the people you touch because of how you accept death God chose you because you accept death without complaint.”

“Well I wish I’d gotten that memo because I would have complained like a motherfucker if I had known I could avoid this.”

“God gave you that sense of humor too.”

“Did he give me a sense of humor or did he make human beings so silly you have to laugh at them?”

“You see? Your ministry is so important. People need to hear what you have to say. I hope you can keep preaching for a long time to come.”

At this point I give up trying to convince him I am not a preacher, I have no ministry, I’m not a cute crippled servant of the lord and I just shake hands with him and say “ see you Sunday.”

“I’m not working Sunday.”


“Maybe I’ll just stop by and say hello.”


Tuesday, October 07, 2008


I’m home with a killer of a cold but also with a sense that things might be turning a corner. I’m only crying a few times a day now, starting to think about making plans again and reconciling myself to wheelchair life and life with an aid. I hate the word aid so I’m going to need to think of a new one. Sidekick? Henchman? Trusty manservant? See, I told you I was getting better. There is dirt under my fingernails and something wriggling up my pants leg but all in all I am clawing my way out of the snake pit.

It helps to perform ( so if you know a good venue in your town….) it helps to travel and it helps to meet people dealing with more than I am and having a great attitude about it. It also helped to spend a concentrated chunk of time in LA with someone I don’t get to see very often, who makes me feel so loved and who is one of the dearest human beings I know.

My heart goes out to people with clinical depression – I don’t think I could take feeling this bad for much longer. One of the ways I generally stay happy is I try not to attach a story to my material circumstances but rather just look at what’s facing me at that particular moment in a Jack webb – just-the-facts-m’am kinda way. That has been impossible the past few weeks – everything provoked a story from the past (painful childhood, crappy marriage) or the future ( it’s only going to get worse then I’ll die) or the unknown (how’s chemo going to be for Allison, what if having me visit compounds their problems?) Whenever I am yanked back into the present I feel better but man was it tough to be there the last couple of weeks.

So now I emerge. I want to go see the butterflies in Pacific Grove with Stephanie. I want to go to Las Vegas with someone who will help me get up to no good. I want to dance if at all humanly possible at Patch’s wedding this weekend. I want to hug my brother in the flesh. I want to go to the pool every day and to get more gigs. I want to hang out with my girlfriends and not have them have to do anything but hang out.

Yes, I’m definitely feeling better.

Sunday, October 05, 2008

Broadway Danny Rose

Jeannine Frank is the LA Broadway Danny Rose. She has unerring taste in artists and boasts a handsome roster of talent. She produces shows that have inspired me and made me laugh more than any other shows with the exception of Flight of the Conchords.
( Jeannine by the way refers to herself as a cross between Mel, the crazed fan and Murray the bumbling but tirelessly faithful agent of the Conchords).

She produced the show we did on Friday night, did a silent auction, booked us into a lovely hotel and showered me with love – even going so far as to help me undress and tuck me into bed. In Flight of the Conchords, Murray cautions the band not to be too “rock and roll” in the hotel by doing things like eating from the mini bar. I got very rock and roll on the balcony, backing my wheelchair into a glass table, knocking down the glassware and sending a bottle of Acai juice over the rail from the 5th floor. I’m wild like that but Jeannine doesn’t seem to mind.

The show was fun – Andy Kindler and Betsy Salkind ( one of my favorite comics) opened for us and then we did one set. The guys all sounded great and I couldn’t have felt more supported. I have the best band in the world – they are cuter than all other jazz bands, funnier than most (John R. is THE funniest musician, period, Jon Evans is damned funny on a consistent basis and David is one of those that tells fewer jokes but when he does tell one, it’s so funny a laugh just explodes out of me – sort of a Jason Capone of humor) and they are the kindest and most helpful guys you could hope to meet. Jon sweeps me up and carries me onto the stage and the other two are at the ready for car transfers, help with taking medicinal herbs, opening bottles – you name it. They have the luckiest wives on the planet. It was a great night and in some respects one of the best I can remember.

Performing is one of the only times I forget about all the other stuff. I feel safe and loved on stage and I adore finding the story in each song and telling it. I loved how the band sounded, how we played together, some of the magic moments. I loved meeting new folks and seeing old friends. I met Scott Lew (mentioned in a previous blog and subject of the documentary Living With Lew) and his fabulous wife Anabel and Don Heckman (who wrote the wonderful review) and his wife as well. Scott has had ALS for 7 years and has an amazing attitude. David mentioned that during a quiet duet with John R, Scott’s breathing machine was almost accompanying us it was so loud and Scott’s wife wondered if they should step out but David said “no.” I agree with David. The sound of the machine seemed appropriate to us both.

Lots of adventures. Two nights out of 3 alone in the hotel (yippee!) and a solo flight back home. It was not easy to travel without my Lisa but I managed. One the way she helped me in the airplane bathroom. As we closed the door, I caught the flight attendant’s eye and said “Mile High Club.” “Girl, you are bad!” he gasped. At Rent-a-Wreck, Lisa told Dave the manager why we were there and he decided to give us the car for free. Life is a constant surprise. A gentleman connected to the music school upstairs from the hall gave me a gorgeous photo and love and kindness was everywhere.

I’m still not out of my slump but I feel myself pulling slowly out of the muck and moving into this next phase. I think of Scott, needing this ventilator, having to repeat himself when I can’t understand him, and just so very cool and I think, “Hey girl, you’re lucky. Love this time as much as you can.”

Wednesday, October 01, 2008

Dear Muselings

I got ALS this weekend. I know, I know. I was diagnosed on December 26th, 2007. It has been confirmed and reconfirmed. I have used up many words discussing it but I didn’t know how good I had it. I am starting to get an inkling of what this disease is now and it’s a whole new ball game.

Now we (me and my super squad of elite action heroes that could make a Navy Seal cry from their disapproving glance) are looking for an aid.

Now we are trying to find a way to pay for an aid (Kathy estimates 11,000 per month).

Now people are over almost all the time tending to the most personal and intimate needs.

Now I’m afraid to walk a few steps on my own.

Now the Vietnamese girls at the nail shop cry and hug me when they see me wheel by.

Now I am shrinking and shrinking so I feel like a character from “Honey, I shrunk the Crip” and expanding and growing so I feel like I am about to have god or Mel Gibson or someone whisper the secret of life into my ear.

I am the Black Knight from Monty Python and the Holy Grail.
I am a float at the Macy’s Parade with a slow leak.
I am a dripping salt water faucet.

I am performing on Friday in Los Angeles. One of my angels, Jeannine Frank has set up the whole thing. I fear it’s the last show. I hope not. If you’re around, come hear it – I won’t be this sad – I know it because I’m never sad when I perform.

I won’t be back until Sunday so no blogs until then.

The show is 8pm at Steinway Hall, 12121 Pico Blvd at Bundy

By the way – you are the Muselings and I love you.