Friday, December 26, 2008

December 26th on the Beach

My friends and family met at a beach in Alameda to mark the anniversary of my ALS diagnosis, My friend Linda ended up at the wrong beach but what she wrote of her time describes the scene better than I ever could. She wrote:

The afterglow of the sunset was astounding,…The pampas grass became my shield from the wind as it swayed gently in the breeze while I took in the quickly changing dance of color before my eyes. Tide pools left behind by the receding bay reflected iridescent swirls of pink and orange. Flaming red rimmed the edges of the mountains in the distance until monotones drowned out all color. In a more brutal reflection, the monotones strangle all color from existence, but we know life goes on under the surface, and life replaces death with limited exponential frequency...

The only addition I would make to Linda’s description was how magical all my loved ones looked skipping rocks in silhouette against the sunset, their figures like shadow puppets against a pink and gold scrim. I am usually the type to be right in there – part of the action – but tonight I got to watch. It was sweet.

My family members and I spoke but for me the most gratifying speech was Maclen’s which I’m somewhat reluctant to print since it’s so incredible I may seem like I’m bragging but is so well-written and amazing I must kvell. A mother’s prerogative.

I close with his words which is ultimately how this blog will end when I’m no longer able to write it in any fashion.

Here’s Mac:

The theory of relativity says that if you flew a spaceship around the earth fast enough for long enough, everybody on earth would have lived fifty years of their lives in the time it took you to live a few years. How can one possibly sum up the life of a person who crammed eighty years of joy and eighty years of pain into 46 years? Carla Ann Zilbersmith, who I am privileged to call my mom, yes, I said the word, was not a singer, nor was she an actor, nor a director, nor a writer, nor a comic, nor an improvisor, nor a professor, nor is she a lady on death's door. She is an entertainer. She is a Bard. She is a professional human being.

Can you explain Wedding Singer Blues in a sentence? How about War and Peacemeal, can you find a genre for that? The works are like the woman, Sui Generis, and compelling to the last. People wonder how she is able to be such a faunt of creativity, and the answer is that every day for her is a performance. Not in the sense that she hides anything from anybody, so much as that we all wear masks when we associate with people, and she feels that, as long as we're all giving a performance, it might as well be fun as hell. Her artistic works are so full of contrasting humor, poignance, and philosophy because that is what her life is full of. Conversations with her have made junkies clean up their acts and have made straight-laced suburbanites loosen their tie.

But the way she has made the biggest impact in the lives of so many is that she is a mentor and a friend to so, so many. This is because she is rapport incarnate, and knows what people want to hear. It is because she cares about others more than herself, often to the point of folly. It is because she allows people to act in a way that they don't feel comfortable acting around anybody else. For somebody who lives life like a play, she sure knows how to make a person break character and talk about what's really on their mind. When Carla Zilbersmith walks into a room, a bus, a party, or any other area in which there are numerous people, she will make friends, learn stories, and make people think. Growing up around her was like growing up around a celebrity, not only because she has more friends than anybody I have ever encountered, but because she had a way about her that made people who didn't know her feel like they did. Whether on stage or in her life, Carla's aim was to please. Not because of the adulation which she received for all of her endeavors, though there was a significant amount of that, and not for the massive amounts of love that she generated, though there was a lot of that too, but because she likes making people happy.

Why would a woman like this get a disease like this? Random fucking chance. But this is not a tragedy. Tragic, is what you call somebody who lives to 60...70...80...90 and never for a DAY lives the way that Carla lives nearly every day of her life. Tragic, is those of you who let this event stop YOU from living the way Carla lives every day of her life. Tragic, is the fact that, the less Carla Zilbersmiths there are in the world, the less people are going to be called on their shit, the less people are going to be changed, and the less people are going to learn to really live their life. The odds are that Carla isn't the only one here who isn't going to reach fifty. Sound depressing? Well, it shouldn't be. We need to start playing by our own rules, the way my mom has for 46 hilarious and tearful years, because we shouldn't need a crisis like this to trigger us to live our lives, nor should we need a human being such as Carla Zilbersmith to trigger us to live our lives. So let's keep living it, let's keep living it, really living it. The help that Carla has received from her legions of friends has done nothing short of restoring my faith in the human condition, but do you want to know what you can do that will help Carla the most? Use humor to take arms against the slings and arrows of outrageous fortune, use love to combat uncertainty, find happiness wherever you can, and, most importantly, live your life until you can live no more. My mom does.

Wednesday, December 24, 2008

Traveling at the Speed of Enlightenment

I couldn’t breathe on Monday night for about a minute. Mac was at his Dad’s and I was alone and I couldn’t breathe. Now I remember Nurse Dallas told me to relax when this happens but I tend to relax by….breathing! I was scared and calm at the same time. I spoke reasonably and amiably to myself like a pilot talking to his passengers. “Good evening, this is your Captain speaking. I’d like to welcome the central nervous system as well as those of you traveling in autonomic class. Estimated travel time today is 2-3 years. Now, if I can just direct your attention for a moment to your upper body, maybe I could juuuuust get you to drop your shoulders, open your palms and let your arms dangle. Relaxing, isn’t it? Let me remind you to stay on the bed in case you faint. On behalf of myself and the whole crew we wish you a very pleasant crisis and hope you’ll die with us again.”

Eventually I was gulping some air, then breathing. Big ups to yoga and meditation, my sherpas on this crazy trip.

We are approaching the one year anniversary of my diagnosis (Dec 26). On that day, Edith, my dad and I were dumbstruck by the news that I actually had the disease I said was the one thing I couldn’t handle. My Dad and I are Canadian by nature (and birth) and Edith has a very Japanese kind of composure so the three of us combined couldn’t manage to russle up much of a scene, however the room was thick with emotion. Mac actually pinched his cheeks to see if he was awake when I told him. The grief I felt – and the grief of my Dad and Mac – seemed to me at the time quite unbearable. I felt more scared and alone then than I did on Monday night when I couldn’t breathe.

Yet here we are. On Saturday my hand was so tired ( I was using it by working…for money!) that Sofia had to feed me in front of the tech crew of the Zellerbach theater.

And we laughed. Hard.

I have gotten used to the wheelchair and I have made friends with it.

I have the best selection of cripple jokes, ALS jokes and dying jokes the world has ever known.

I dreaded having aides yet I love Mayra and Natta, my lovely accomplices.

I am a happier person than I used to be because I consciously make the choice not to be bummed by stupid things.

I would happily accept a cure but I wouldn’t give up this year and what I’ve learned about you and myself for anything except if giving it up was best for my son.

ALS is the worst thing that’s ever happened to me and it’s also the best Christmakwanzakah gift I have ever received. I can’t find the words to make this make sense to you so you’ll have to believe me. I’m not as full of shit as I sound (thank Fiber-sure!)

So I’d like to say to Santa – Listen man, I apologize for calling you a douche bag last year and for saying the ALS gift was lame – I mean it is lame (get it? Lame?) but it’s also pretty cool. Oh and Santa - I want to thank you for sending Allison home to Annabel, Atticus and to my baby brother Jason.

Thanks to you Muselings for your overly generous blog comments, your generosity and your love throughout this tough and utterly awe-inspiring year. I will meet with a small number of folks at the beach on Dec. 26 to mark the date and usher in a new year of love, loss, stretching, growing and being a grateful witness to it all.

And naturally, I’ll blog about it.

Sunday, December 21, 2008

Allison is improving

Thanks to all of you who expressed concern for my sister-in-love, Allison. She had Typhlitis, a painful and dangerous inflammation of the colon. The case she had was aggressive and it was dicey for awhile there. My brother did yeoman's work, keeping it together for the kids and Allison. She has been moved from ICU into a regular hospital room, her white blood cell count is up and she impresses the doctors with her rebound. Turns out that thanks to Allison, we will be going to Australia after all. She apparently said (from her hospital bed) that it was unacceptable for us to miss the trip on her account. So off we go on Saturday and I will sing at the Sydney Opera House steps (her challenge to me) just for her.

Friday, December 19, 2008

Holiday Letter

Dear Muselings,

I sent this out as my seasonal letter:

Dear Friends;

Last year at this time I wrote to you to tell you about my ALS diagnosis which followed on the heels of the dissolution of my 20 year marriage. I told you that like Lou Gehrig I felt like the luckiest person on earth and like Louis Armstrong, “I think to myself, what a wonderful world.”

I write this the day after my sister-in-love ( as my accomplice Mayra calls her) came within minutes of death. I write this as she breathes through a tube and a snow storm threatens to keep her separated from my brother. She has Stage 3 breast cancer and was rushed to the hospital yesterday with an intestinal infection and no white blood cells to fight with.

I write this with a failing right hand ( left one is pretty much useless) from a wheelchair where I permanently reside.

I write this as a former singer, teacher and actor having taught my last class, done my last show and this Thanksgiving at Yoshi’s, sung my last gig.

I choke on food and water, my speech slurs when I’m tired and breathing is now more labored. I need someone to dress and shower me and prepare my food. Sometimes, I don’t know how one person is supposed to take all this.

But guess what? I stand by last year's letter to you. I defy any cocksucker gods to try to get me to stop loving this beautiful fucking world and all of you who have sent me, Maclen and my family emails, blog comments, tasty meals and your prayers. You have buoyed me, sustained me, made me laugh until my larynx spasmed, given great (and shitty) advice, driven me all over the Bay Area, taken me to the hospital in the middle of the night and to the butterfly sanctuary in the middle of the day. Your faces shone out from the audience at gigs, your music propped me up better than any walker.

How could I possibly NOT be grateful when I live in, as Shakespeare wrote, this “brave new world that has such people in it”

Here’s a bit of what I’ve learned this year:

The thing you think is the worst thing imaginable can be endured and occasionally even enjoyed.

Losing things makes you fiercely love what you still have.

Plans don’t always work out perfectly. Big fucking deal.

If you read all the titles of all the self-help books and treat them as a kind of list of rules, you don’t have to waste your time on reading the whole book – Don’t Sweat the Small Stuff – nuff said! Bad Things Happen to Good People – no shit, Sherlock.

Show up to your own life. Disable the auto-pilot and live this bitch.

It’s more fun to write about snogging British men than it is to actually do it.

Even if it hurts to laugh, even if it makes you stop breathing, it is the best thing to do. Laugh every day.

Have as much sex as you can. I am as serious as a heart attack.

When you are facing death you won’t give a shit about the shit you have. You will yearn to hear your kid laugh one more time, for an old lover to hold you and for your friends and family to be near. You’ll remember wet sand between your toes, the smell of fall leaves burning, the feeling of holding a warm cup between your hands and soft lips touching yours.

When you have a fatal, debilitating illness, people will listen to anything you say so you
can pontificate until their eyes all roll into the backs of their heads. It’s awesome.

People always ask me “is there anything I can do for you?” Well, I am very well taken care of but there are two things:

1) Set aside time to live like you are going to die and then love the fuck out of your life and the people in it.
2) When you see someone in a wheelchair, don’t treat us like we just won a medal in the Special Olympics. When you patronize us, we silently judge you.

So there it is. My second annual weird-as-hell form letter. Have a great spending season – remember – the economy is counting on your conspicuous consumption.

As always, I will update regularly on the blog and plan to start vlogging in the New Year as well. I think vlogs will be posted at

With love, gratitude and a little crippled attitude

Thursday, December 18, 2008

Prayer Time

This afternoon my sister-in-law, Allison, was rushed to the hospital with a high fever and chills. By late afternoon it looked serious and in a couple of hours she undergoes surgery for a rare condition that is caused by being neutropenic ( no white blood cells to fight infection). It's a very rare condition that her oncologist has only seen once before....and that case was Betsy - Allison's sister. It's serious and my brother is a wreck. If you like to pray, please send out some good ones for my sister-in-love (as Mayra pronounces it).

Sunday, December 14, 2008

The Sydney Challenge

It's that time again - I'm going to Australia and I'm accepting non-snogging challenges. i'll take 3. So far I have one from some former students which is whenever someone asks me why I'm in a wheelchair I have to tell them a dingo ate my baby. I leave December 27th so put your thinking caps on now.

Thursday, December 11, 2008

And P.S.

I was getting off the bus this afternoon. The driver had parked by a steep driveway. The ramp is also steep. My chair got trapped in the valley between the two slopes. I am sitting at an angle for 20-25 minutes, unable to move up or down, in the cold. People get off the bus, pissed that I'm holding them up but not inclined to help. Finally I call Kathy who lives nearby and just hearing her voice makes the tears spring to my eyes and I have to blink hard to stop from making a spectacle of myself, plus I have trouble talking after I cry - I seem to literally drown in my own tears. SO my acupuncturist shows up at the same time as Kathy and her giant son Eric and they unwedge me and off I go to get needles stuck in me.

Watched Cadillac Records that night with Gerry and that's when the tears hit. My first music movie as a former singer. God I love singing and I used to be able to do everything Beyonce was doing vocally in that film. Now i hang on to a tune for dear life. I cried through the credits. I cried until the place was all clean for the next show. Gerry was a rock solid friend and just held me and let me cry. I told him that sometimes I don't feel big enough to hold all of this.

And now I avoid going to bed as long as I can because tomorrow I have to get up and start again, like Sisyphus rolling that damned rock up the hill, I have to find my way back to the place I love to be - the place of gratitude and acceptance of this cocksucking disease.

Wednesday, December 10, 2008

Bitch, bitch, moan, moan

It was California cold last night – in other words low 40s. Mac and I waited the length of a presidential primary for our bus only to be told when it arrived that the lift was broken and we had to wait for the next one. We got home from our 5:30 movie at 10. On the way back a crazy man ranted about black on white racism on the transit system, while sitting next to me pretending to be talking on a cell phone. This included telling the “person” on the other end that he would lose them in the tunnel. Method acting meets crazy. Once through the tunnel he turned his sights on me. He told me I had beautiful hair and not to worry because he “doesn’t hit on people.” “Well that’s great,” I reply. Now when you’re in a wheelchair on the bus you can’t move away from the crazies as you are literally strapped in place with grappling hooks, which are impossible to remove on your own. Of course crazy man got off at our stop and said cheerily to the black bus driver “Bye! Sorry you hate me for the color of my skin!”

And that was the good ride.

The way there, the bus driver tried to not pick us up at all despite us both waving and being right in the bus stop. She was genuinely pissed at having to deal with me. When part of the lift wouldn’t drop she refused to help move it. “Are you really going to make me do this myself?” I asked. She shrugged. At every stop she slammed on the breaks so all of us – especially me – flew forward then whipped back. Unflappable Mac was so mad at how she treated me he took down her bus number.

Still, I greatly prefer the bus or BART to Paratransit which is bumpier and takes 4 times as long.

Not complaining – just sharing. Wheelchairs, my Muselings, are not for sissies.

Handicapped bathrooms don’t have handicapped doors. Opening the door anywhere is a chore.

The bathroom mirrors are too high for a wheelchair.

Most restaurant tables are too low for my legs to fit under them completely so I don’t get close enough to the table - which, since I spill a lot, is a drag.

One step makes a restaurant or store inaccessible.

The shelves and racks at many stores are too close together for a chair to easily pass. I often take out a rack as I pass.

The sales counters are at neck level.

I sometimes wheel a block only to find that there is no curb cut and I have to go back where I started or “jay roll” and risk that a motorist doesn’t see me.

SUVs often don’t see me either way so I have to be extra vigilant.
If the elevator in my building is out, I’m stranded. If there’s a fire, I have to scoot down 3 flights of concrete stairs on my bum and hope I can open the exit door.

I never thought about any of this. It never occurred to me that someone in a wheelchair couldn’t spontaneously pick a restaurant or go for a walk or that travel routes, accessibility and bathrooms had to be carefully considered. I never realized every time my car butted out past the driveway that I was inconveniencing and possibly endangering the scooter lady down the street.

And if it’s a hassle for me, how much worse must it be for people without my support network? I have more help than most folks in wheelchairs, I’ll bet so for me this stuff is only a minor inconvenience. Imagine if you lived alone without a super squad of friends to help you.

Saturday, December 06, 2008

Bravo Boundaries

I received a few blog comments lately that I feel need to be addressed.

I got one yesterday complaining that I didn’t publish their previous blog comments. The person asked if I pick and choose which comments to publish.

Of course I do.

It’s my blog, I can do whatever I want.

In regard to another unpublished blog comment, I need you to know that I am so sorry about your depressed friend but I am utterly unqualified to help anyone with their personal problems. It sounds like your friend needs professional help ASAP. I feel great compassion and sadness for anyone who is suffering, but I can’t take on any new people’s baggage right now since my own and that of my loved ones is fairly hefty. I’m not convinced that I wouldn’t add fuel to the fire anyway.

Finally, the few of you gentlemen who are seriously projecting romantic fantasies on me, please keep them to yourself. If you read this blog and watch my shows you don’t really know me and your courtship doesn’t flatter me, it makes me feel invisible.

Mostly, I want to say that this blog is for me and for my closest friends and family. If someone else gets something from it I’m really happy. I’ve been enriched by meeting Pat, Jay, the Irish sisters and so many of you I don’t have the finger strength to list, but I’m ultimately doing this out of enlightened self-interest. I make no apologies for what I write or don’t write, publish or don’t publish. I have my reasons but I don’t feel any obligation to share them here. I also make no claims to being anything other than an unlucky gal who writes good. I am moved and flattered by the kind words on this blog but I do what I do in order to have a great life, not to be good. I don’t want to be good.

In fact sometimes I want to be bad.

My mother recently told me a story about me as a 4 or 5 year old. I apparently said “Mom, I’m very special - there’s no one else that is like me in the whole world- but everyone else in the world is also very special in the same way, so I guess that makes me not so special after all.”

I haven’t learned much since then I guess cuz that makes perfect sense to me.

Tuesday, December 02, 2008

"Though wise men at their end know dark is right.”

I watched an old 60 Minutes segment about this communication device, which uses thought patterns to help people communicate. The man who was using the device had ALS and could only move his eyes. In order to use the device, the subject has a caregiver put a skullcap on his head and put cold conduction gel into the little holes next to the scalp. Electrodes go into the holes. The man ( I think his name was Scott) stares at a screen as letters go by and when he sees the letter he is looking for, a part of his brain lights up and the computer knows which letter to choose. The process takes 20 seconds per letter.

My reaction was amazement of course and also a realization that I am not going to “bank” my voice as I had originally planned. Voice banking is the process of recording your voice saying as many words as possible to be used later for communication devices. The whole thing is not a fit for me – I don’t want to live beyond a time when I can breathe my own oxygen, eat my own food and speak my own words. I don’t want to dig my fingernails into this life, clutching until I draw blood. I DO want to go gentle into that good night.

Does that make me a coward or brave? In my brief time as a disabled person I’ve come to realize that living life from a wheelchair can be tough at times. People who choose to hang on hoping for a cure that may not come in time, who endure the many tiny indignities that accompany each day with this crazy disease, and who stay positive amidst the slow leak that is ALS – well they are heroes in my book. I just don’t think that’s me and I don’t think it takes any less resolve to NOT do the ventilator, or NOT do the communication device or NOT take any other measures that would keep me alive but not necessarily living. I think it takes strength whichever road you choose.

A family friend of my former in-laws (I’m now an outlaw) was literally yelling at me on the phone tonight to go to some website that has a cure for anything, “even cancer” as though that would help me. My son wrestled me for the phone so he could hang it up, but I was able to out-yell the guy in time to save him from Mac’s wrath – Mac who told me tonight I was a 1984 Gremlin with hover capability and no engine. When I asked him what he meant by that, he said “You’re of no practical use, but you’re really cool.”

He learned how to do the Heimlich Method tonight (I’ve been choking) and he also made me laugh my ass off right at a moment I was resolved to feel sorry for myself. I couldn’t grab my wallet with my good hand so I said “I hate my fucking hand!” and he said “Really? I'm rather partial to my fucking hand so I guess that’s where we part company.”

No one who knows me and Mac at all would think for one nanosecond that he isn’t the first thing on my mind when I ponder these (hopefully distant) future decisions. He’s also the last thing on my mind. That said, I promise to shut up and let others die however the hell they want to and all that I ask is to be afforded the same courtesy.

My Mother, Myself

Like many women, my mother and I have always had a tricky relationship. I wonder sometimes why mother/daughter and father/son dyads are more often more fraught with challenges than their father/daughter and mother/son counterparts. Is it that a same sex parent has more trouble differentiating from their child? Is it that the child identifies strongly with the parent who shares their gender and looks to that parent for guidance in how to be a man or woman? Does gender even play into it?

Regardless of the reasons, I find myself wishing I could connect with my mother in a way that would bring her peace and happiness but always holding a bit of myself in reserve. As I’ve said before, life is full of sad things that can’t be fixed. My mother and I have both worked so hard to understand each other and she has made huge changes in how she interacts with me. Changes that involve a lot of determination. We get along better now than I can ever remember and yet there is this wariness that may never resolve given our current time constraints.

It got me thinking of what I would like to leave to my mother. What I came up with was a list. I’d like to leave her a list of all the ways I’m cool because of her and I’d like her to know about these things while I’m still alive so here it is:

1)Love of color
…or since my mom is Canadian, “colour”. My mom’s townhouse was a riot of purple and pink and her clothes insured that she would never be hit by a car. The dress she wore to both my wedding and Jason and Allison’s wedding was a symphony of greens,pinks and blues. When I put my apartment together I remembered her admonition: People who live in beige houses have a beige lives. Color makes me so happy and I get that from her.

2) Appreciation of flowers.
Whenever I worked in my garden I remembered how my mother loved every plant and leaf. I surprised myself by how many names I already knew and by how good I was at making flowers grow. (again I picked BRIGHT colors)I can’t garden anymore but my friends made me a beautiful deck garden and I love love love fresh cut flowers, especially gerber daisies.

3) Dancing and singing in the house.
I did this until I was in the wheelchair full time – dancing even in my walker. After my folks split, my mom said “please, God, send me a man who can dance.” She would boogie around the house and sometimes in public, which horrified me. Many years later, I was in Vancouver on New Year’s Eve and a bunch of Hari Krishnas were dancing in the street by Robson Square. I joined them much to the horror of my teenaged son. I get that from my mom.

4) Dirty humor and shameless flirting.
Mayra my accomplice said to me one day, “When you was walking you must have been very dangerooz.” Recently I pondered aloud to a friend “What if I had the sexual confidence I have now with the looks I had in my 20s?” “You would have died of AIDS instead of ALS” she said matter of factly. My mom has always delighted in a good filthy joke and is a champion flirt.

5) Cursing.
What the fuck else can I say?

6) Guessing the ends of movies.
I used to think she was a witch until I could do it too. This used to piss off my ex to no end. Happily, my son has inherited this gift so someone can continue to torture my ex long after I’m gone.

7) Excellent fashion sense.
My mom was always turned out well and looking like a million bucks. She’s married to an older man now so she doesn’t need to try so hard but man did she look great all the time. I used to be jealous of how snappy she dressed and how dumpy I looked. It takes awhile to learn how to dress for your body and she really knew how to do that.

8) Open door policy.
Every day when I came home from school there was someone at the table having tea. We could have used a revolving back door for friends and neighbors. My mom drove her friend Sylvia shopping since Sylvia didn’t know how (to drive – she knew how to shop, oh yes she did) and if I couldn’t find her, she’s be at Sylvia’s helping make drapes, homemade granola or working on some other project My mom loves company and so do I. This has made the transition from independent to dependent much smoother for me.

9) Love of public radio
It was always on and when it wasn’t, she would say “ I heard the most interesting thing on the CBC today….” For me it’s KPFA or NPR.

10) Irrepressible love of the every day things in life
To be truthful, many was the time I felt overcome with a homicidal rage when we would be walking to a specific destination and my mom would gasp loudly, scaring the crap out of me, exclaiming :”Oh, Carla! Look at the flowers!!” She would proceed to smell them, admire them, talk to strangers about them, etc. all while I silently shouted “let’s get a move on, people.” Now I am the one to hold up the expedition party to smell a rose, watch a hummingbird or enjoy a funny scene played out on the street. I don’t gasp audibly but inwardly my heart yells “Holy shit – look how amazing this is!”

11) Humor with an edge
Growing up with a handicapped and very troubled brother was no picnic. I have learned from both my parents that a little humor goes a long way to getting through adversity. My entire family is hilarious and I have memories of all of them cracking me up at one point but my mom is perhaps the most devilish in her humor. I remember (not entirely fondly) family car trips in which my dad took his goal of how many miles we’d drive on any given day so seriously that you’d think we were escaping Nazis rather than heading to Disneyland (coincidentally, Walt leaned in the Hitler direction so we were running to the Nazis). We would have our legs crossed begging to pull over to pee and my dad would say “As soon as we hit Eugene.” Or something equally horrifying. Finally one day my mom took off her seatbelt the buzzer to which did NOT automatically turn off like they do today. She crossed her arms and smiled a Cheshire cat grin for the longest time while the nasal buzz of the seatbelt warning taunted my Dad (okay, me and my non-deaf brother as well) until finally, my Dad couldn’t take it anymore and pulled over where we could gratefully relieve our bladders,

It’s not been an easy relationship for either of us - my Mom and I. I suspect that it will remain bumpy, however I am aware of how much my illness is tearing my mother apart and if I can leave her with the knowledge that a lot of what people love about me comes from her, that she helped make me the person I am today, that I can see her good traits – her charm, her delight in the every day things, her creativity, maybe we can make this bitter pill go down a little easier.

PS – if you see me in a pretty sweater, she probably bought it.

Thursday, November 27, 2008

Singing Goodbye

So much of my life is about this gradual loss, this slow dying. So much is out of my control. So little of what happens to me is chosen by me. I think I am going to choose to quit singing now. I know many will try to talk me out of it. I know none of us want to believe that what will happen to me is going to happen. But I believe it. I feel the changes every day and I can't ignore them. That's why I want to walk away from singing with the memory of a good gig and on my own terms. i want my last show to have been with David Rokeach, Jon Evans and John R Burr. There can be no substitutes for them and I've been on a lucky roll having them available, that has to end sometime.

I kept saying to myself at Yoshi's "just be here, Carla" and I was. I basked in it. I felt the warm golden glow of the lights, I thrilled when the band locked into a groove, I was moved by how many former students - some going back more than ten years - were in the audience. I gobbled up Jon's virtuosity and utter commitment on Big Yellow Taxi and I was moved by his songlike solo on I'll be seeing you, I was in awe of David's amazing groove and his passion in executing it and the way his kick drum lands in the perfect spot every fucking time and how it sounds so rich, powerful and resonant. I was grateful for his smile when we did our little duet . John R.'s remarkable versatility was killing me. From his chop-laden solo on The Way You Look Tonight to his bouncy stride on Smile to his unabashedly beautiful solo on Circle Game, he slayed me. I basked in it. The love from the audience poured over me. At one point i thought I couldn't go on and I saw Jay in the audience - someone I only just met from this blog - and I knew I would be okay. I felt bathed in love and I was right there and it was all so beautiful I could barely muster up a good joke all night.

As John R. carried me off stage I realized it was probably the last time and I lost it. It was a momentous night in my life.

It is a rare privilege to get to perform for people - to make them laugh and cry. Except for friends, family and my beautiful boy, nothing has made me happier. I didn't have a choice when I had to quit performing Wedding Singer Blues and I truly thought "dying can't be half as bad as this". If I choose when to stop singing, at least I'll have some control.

My voice used to soar. I felt like I was taking flight when I sang. Now it's all I can do to get the notes out. I know I sound okay but it breaks my heart to remember how I used to sound and know that's no longer possible. It's hard to explain.

It's so hard for us to let go of who we were, what we had and what we dreamt we would be. I wanted to "make it" as a performer, to find "the one" and live happily ever after and of course to watch my son get married and have kids that I could swear in front of. None of that is going to happen for me and yet I feel like a success. Go figure.

I will of course sing now and then - a tune here or there while I can- but I pray I can have the strength to be like those Buddhist Monks destroying the elaborate sand mandalas they just completed. I imagine them hiking up their robes, joyfully kicking up sand and laughing.

Wednesday, November 26, 2008

Giving Thanks

Mayra my accomplice is pulling my pants down so I can use the commode when I collapse on top of her. She is holding me up – barely – and she says “Whoa, don’t fall in love with me.” “Too late” I reply. A minute or two later she is trying to get me back in the wheelchair. I do a wild pivot and land kerplunk in the chair with Mayra on top of me. “Don’t fall in love with me” I warn her. “Too late,” she responds.

My legs are shakier and less dependable all the time it seems. The night time commode trips are precarious. Bed to chair in the morning is an adventure as my knees lock and my legs stiffen like boards and I generally fall backwards onto the bed. The day I pitch forward is going to suck. Good thing my knees hyper extend – harder to fall forward I think. My wrists are losing strength as is my right hand. Eating is hard, tiring and messy. The lady at the Thai restaurant automatically brings me a straw now. Soon I’ll be too embarrassed to eat out. Soon I’ll need help eating.

The elevator in my building was out briefly this morning and I connected with that part of me that feels very vulnerable. I don’t usually think that way. I get up and try to walk to a calendar, I offer to meet friends places rather than get a ride all the time. I forget that I’m now a handicapped person.

Okay so here’s the weird part. I’m in a good mood. On the outside it looks grim – not enough money, no man, very handicapped, lousy living situation, no job, my singing career is coming to an end…. But here’s the thing. I have this amazing kid who entertains me and lets me take him clothes shopping, who tells me if there’s a fire he’ll carry me down the stairs and who laughs and says “don’t worry, I’ve got you” when I call for help because I forgot I can’t walk and I walked to (and landed partway in) my closet. “How do you forget something like that?’ he asks me.

And here’s another thing – my parents fly from Canada to see my gig and understands that I can’t hang out with them until the gig is over. My brother calls to tell me it breaks his heart not to be there, my sister in law calls mid chemo misery and we share a loving half hour together. I’d say something about my friends but I’ll sound like a broken record. I am blessed at every turn.

Do I sound full of shit when I say that? I hope not because it’s really true. ALS has torn my heart wide open and there are unimaginable gifts in this disease. If I read this 2 years ago I would have thought I was a self-deluding, kelp eating weirdo but here it is.

This weekend Jupiter an Venus are closer together than they’ve been in modern times. George Bush has pardoned his last turkey. I get to sing tonight in front of a loving audience with the most supportive and talented band imaginable and I found great red shoes. There is a lot to be thankful for.

In Kindergarten, Mac was watching the older kids do a pageant portraying the mythical meal between Pilgrims and Indians (pre-small pox blankets etc) and at the end the narrator said “And to this day there are Native Americans living among us.” And little Mac yelled out angrily “Not very many!” The next day we still celebrated Thanksgiving despite its sketchy origins. We sat down and ate a great turkey dinner and talked about what we were thankful for. That’s life is it not? Good, evil, joy, grief, tears and laughter – give me all of it.

So this Thanksgiving I am thankful for ALS. No bullshit. (But check back in a few months, no doubt I'll change my tune!)

Hope to see you at Yoshis.

Thursday, November 20, 2008

International Hug-an-Edith Day

By the time most of you read this post it will be Friday November 21st, better known as International Hug-an Edith Day. If you know an Edith, commence to huggin'. If you know or know of my Edith, now would be the perfect time to write a comment telling her how awesome she is. Now I could write about all the rides, commode bag changes, last minute rescues, getting up more times a night to help me than I got up with my newborn, endless durable medical equipment purchases, medical fund management, thank you card making, poster making, stretching, showering, food buying, woman lifting, trip organizing, reality checks and listening that she does but I'd rather tell you some cool things about her:
1) She has an unnaturally strong love for carrots.
2) She changes purses almost every day.
3) She leaves weird and funny post-its for my son.
4) If she doesn't like a joke of mine, she hits me.
5) She has a friend named Big Johnson. No really.
6) All of her undergarments are the same color.
7) She can pack away 3 entrees in one sitting and still order desert.

8) As you can see from the picture this has not had the ruinous effect one might expect. (This is my favorite shot of her)
9) If she were vetted for VP, I would be her only dark secret. Apart from groping my lady parts, this gal is clean as a whistle.
10)She could be captain of USA's Olympic Shopping Team.
11) Her sense of humor is stealthy and horribly evil.

It is my great honor to know her and I urge you to blog comment a Happy Birthday Message here.

Happy Birthday Beautiful. I'll be sure to say something horrible about you on the radio!

Tuesday, November 18, 2008

Butterfly Moments

Whoever is running the universe acted like the perfect hosts and hostesses this weekend, conspiring with one another to show me the best time ever.
“Look, she’s not here for long,” I imagine the amorphous blob in charge saying. “Let’s pull out all the stops.”
The special effects blob perks up. “ I could do that cool shooting star thing if you want.”
“Good. Make it happen.”
And it did. As if the yellow moon hanging low over the water making a golden path between Pacific Grove and Monterey and the sea lions’ barks carrying across the bay and the memory of 15,000 butterflies weren’t enough, we saw a shooting star on the way home. Pure magic.

Not that there were no hitches in the plan. My friend Stephanie traveled all the way from Michigan to accompany me on this trip and the morning after she arrived she caught a cold. My friends mobilized (as you faithful Muselings know by now my friends do) and Stephanie bunked with Kathy. I missed having my time with her but I can’t take another cold. By Saturday morning things looked hopeful but not 100% safe so Kathy drove Stephanie and Edith drove me as we made our way to Pacific Grove to see the butterflies. The Czar of fun (Lisa) was in Half Moon Bay on one of her innumerable wacky adventures and she met up with us for part of the trip regaling us with amusing stories and poetic descriptions of what we were seeing and running reconnaissance missions to insure we were always heading into wheelchair friendly space. Our scout called us Kimosabe, Kimosabo, Kimosaba and Kimosabu. (Hey I looked up the spelling in Wikipedia – this is the best I can do).

So I’ve been looking forward to seeing the butterflies for some time. I have kind of a thing for them, so much so that Ali has threatened an intervention if I buy one more butterfly-related item of clothing or piece of jewelry etc. The love of butterflies is a stark contrast to my persona as foul-mouthed wisecracker but there you have it. Hello, my name is Carla and I have a butterfly fetish.

Hi Carla!

So sometimes, but not very often, everything goes more than right. The universe conspires to show you the time of your life. We stumble on the grove on the best butterfly weekend of the year. It’s unseasonably warm and the monarchs are flying all over. I slump down in my wheelchair and rest the back of my head on the chair so I can look straight up into the tall branches of the eucalyptus trees where the most action is taking place. The sun is bathing the trees in light and the scene looks too magical to actually exist – a cinematographer’s vision of what the world should look like. It also looks like a snapshot you might play in your head just as your dying. Something that encapsulates your sense of what life is in all it’s grace. I look up and I believe in god, but not how you think. I believe we created god so as not to go insane trying to understand that which is incomprehensible. I didn’t want to believe in god before because the one I had invented was merciless and unjust. Now I believe god is just a magic moment, a butterfly, a laugh hanging in the air, a question with no urgent need for an answer. This is a god I can deeply love.
So I look up at this holy scene and it’s too beautiful to take and I weep, leaving a few puzzled butterfly tourists to invent a story about the sad woman in the wheelchair. I bet they all guess right.

I wonder as I weep if Stephanie will feel okay about recording this moment. She is recording our trip and since it is an audio recording she keeps asking “How would you describe this in words?” Lisa describes the sound of butterfly wings as a silk slip rustling under a cotton skirt and Edith describes the moment when 100s of sleeping butterflies simultaneously take flight and scatter in an orange blur as a heart bursting open. (Kathy and I compare the sound to tiny helicopters so no gold star for poetry this time.)

Sometimes the universe drops something in your lap and winks. I meet 2 African Grey parrots named Paco and Chanel at Cannery Row – the ultimate tourist trap. Kathy arranges for their owner to let me hold them – or rather they perch on my arms, which rest on the arms of the wheelchair. Paco has a great personality and I salivate for a bird. More and more I relate to birds, both from a singing and a flying standpoint. I dream about flying like a bird sometimes and my legs just dangle in the air. They’re useless in my dreams but it doesn’t matter. I also think, as my voice slips away, about Maya Angelou’s poem Caged Bird in which she says “The caged bird sings with a fearful trill of things unknown but longed for still….”

I’m hoping I will get through Yoshi’s next week without any wheezing or spasms. That would be nice. I did pretty well over the weekend except when Edith was transferring me from chair to car by holding onto my ass and I started to pitch forward. She grabbed what she thought was my shoulder but was actually my boob. I’m trying not to fall as one of my dearest friends, sister of my heart gropes me in two spots at once and says “we need a guy for this job.” I crack up triggering laryngal spasms and every time I calm down enough to breathe, I crack up again and start wheezing. And repeat. I can’t tell you why it’s hilarious and not horrifying except to say there was one lone guy on the seawall where this occurs and he must have wondered about these women molesting a crippled woman then being very calm as she appeared to be having a scary asthma episode. He’ll be extra vigilant when looking for caregivers for his elderly mother – especially if she has a rack as nice as mine.

Sometimes the universe has a sense of humor.

We are getting out of the car to see harbor seals and sea lions when I drop a water bottle ,which a chubby boy about 9 years old picks up for me. He watches with ferocious intensity as Edith gets me out of the car and into the chair.
“What happened to you?” he asks.
“Oh, I’m sick so my legs and stuff don’t work so well,” I reply.
“Oh. Why are you putting on a seatbelt?”
“Well, this one time I hit a bump and I flew out of my chair. Kind of like if you go over your handlebars on your bike. Did you ever do that?”
“No. Yes.”
“ So I wear the seatbelt so that won’t happen. What’s your name?”
“Thanks for picking up my water bottle, Cesar. Are you here to see sea lions?’
“No. What did you hurt when you fell from your chair?”
“I skinned my knees.”
“Then what happened?”
“Well, I was by myself so I had to wait for someone to help me.”
“I would have helped you” he says with all sincerity.
“Thank you, Cesar.”

And with that little hypothetical gesture, Cesar has no idea of the gift he’s given me on this already amazing day. I would have helped you. One stranger reaching out to another for a suspended moment in time. It’s like being visited by an angel.

We go to the beach by the Lighthouse (yes, I know I’m going out of order, girls) and look out at the water. Stephanie a woman who exudes pure love from every pore is down by the water recording ambient sound.

“Do people tell you all the time that you’re adorable?” Edith asks her. Good question. Kathy is balancing precariously on the rocks to collect sea water in a bottle which she brings back along with a sea onion, seaweed and a little sand. She pours the sand and water on my foot. She has brought the beach to me.

It’s not every day that the sun shines down on you like a blessing and you move from marvel to marvel. It’s not every day that nothing goes wrong, the food all tastes good and the traffic is smooth. It’s not every day that something you wanted happens and it’s even better than you’d hoped. That’s why they call them special days.

I tell you what does happen for me every bloody day. Every day someone blesses me with their love and friendship whether that means a check in phone call in the middle of the day, or getting up to help me pee all night, or traveling to help me fulfill a dream or bringing me a beach. I dare you to find someone luckier than me.

Wednesday, November 12, 2008

Happily Assembling Disjointed Blog for your Pleasure

When the fall sun disappears, Albany quickly chills from a balmy 70 degree afternoon but my riding partner Bronwyn and I don’t notice. We are keeping one another warm as we wheel from Memorial Park back to my apartment. Bronwyn is a 2 and a half year old pistol of a girl who fearlessly headed right for the giant slide along with the big kids as soon as we arrived at the park. I’m visiting on this day with Bronwyn’s mom Lisa and Lisa’s sister Janice who are in from Vancouver for the long weekend. They lived with and took care of their mom who died of ALS many years ago now. Last year they did the ALS walk around Lake Merritt with their other sister Nancy.

Bronwyn’s warm little body is pressed against mine. It’s been so long since I held a kid because first I was afraid to drop them then I couldn’t do it at all. But B is on my lap in the wheelchair with a belt fastening us both safely in. When she starts to fall asleep, listing to the left, her dead weight is too much for my feeble arms so Lisa holds her right arm to pull her back to center. It’s quite comical. At one point I feel overcome and I ask Lisa “Do you ever look at her and wish your mom could have met her?” Lisa very politely does not point out what a “duh” question this is. I feel Bronwyn’s weight on my thigh and try hard to imagine she’s my granddaughter.


Sunday I met one of our Muselings and her lovely partner. I liked them both instantly. ALS got introduced into their lives via a parent who I hope to one day meet. Either way it was a great experience to meet them. For me, Muselings are this blog’s richest gift.

I’m going to be interviewed on KCSM Jazz 91 on Fri November 21st at 1:00. It’s my friend Edith’s birthday so all the schools, banks etc will be closed I would imagine, so you can all tune in.

Mac tells me that Barack Obama’s first act in office will be to reverse several of Bush’s executive orders including the funding of stem cell research. I felt strongly about this before ALS (see Oct 2006 blog ) but now it’s personal. Yes, I know stem cell research has continued anyway and yes I know ALS stem cell research has made great strides but what might have happened with 7 extra years of federal funding? How many more deaths is GW responsible for? It took me 2 days to be able to talk about Barack’s impending reversal without breaking down.

Allison painted a bench yesterday. My poor sister-in-law has been very nauseous from the chemo drugs and struggling with all the natural feelings that go along with a grave illness but yesterday she sounded alive and present and she painted a bench. Lisa (Bronwyn’s Mom) was telling me how much she liked Allison when she met her this summer, which says something good about them both since Lisa was engaged to my brother at one point.

I’m drained lately. I’m tired most of the time and little things like getting locked out of my apartment can bring on tears. Today my amazing angels met for a marathon session with P ( from earlier blog On Orange Carpets and Little Deaths) to discuss Proper Care and Maintenance of Your Carla. Some of them couldn’t make it so I’ll write about them another time (this means you Laundry and Legal Department – I love you) I love these women so much I would play Bunko with them in Heaven ( I can make that promise cuz I’m sure there’s no Bunko in Heaven). I love these women so much I would turn Johnny Depp down if he invited me to come live with him in France (fuck their socialized medicine, I won’t leave my girls. ) I love these women so much I will keep writing about how Lisa drives all the way to my house so I can tell her I’m too tired to go the demonstration she was driving me to and doesn’t blink at the waste of time or how she wants to put an Ididerod-style platform on the back of my chair and yell “Mush” at me or how uber-competent rock Kaila shares poems and heartbreak and music and will suddenly explode into tears on my behalf or how Ali and I just stared at each other tonight, both in tears after she told me “You’ll never know how much WE love YOU so THERE!” or how Wendy calls “Hi Cutie-Pooty and arrives bearing multiple gifts and leaves taking things to retrofit with magnets so I don’t have to fumble with buttons. A blur of industry. A Tasmanian devil of love. I’ll keep writing about pretty Kathy with her sharp eye, positive outlook, brilliant mind and iron determination and Barbara who I have gotten to know in a deeper way this year and whose soulful, sound insights open up new vistas for me and of course Edith of a thousand and one tasks whose eyes flash mischievously when she tells how she’s going to make an instruction card for the ATM wheelchair “Japanese style.” This means if you plan to assemble or disassemble that chair, prepare to do it “happily.”

Saturday, November 08, 2008

Black President - Check! Puppies - Check! Let's See, What's next? Oh yes, Gay marriage!

Barack Obama beat my friend Terre to the punch as you can see from this piece in the AP:

The Obamas will have a shelter dog!

In the meanwhile I hope to be part of another movement on Tuesday to oust another administration whose impact though not far-reaching like that of the Bush Administration has been devastating to public education. My old college - The College of Marin currently has the most corrupt and incompetent administration and this coming Tuesday, at 5:30 PM, my beloved colleagues will hold a job action to protest the refusal of the Board of Trustees to negotiate their contract which they have been without for 17 months. If you are connected with the College, I urge you to join us outside the cafeteria entrance to the Student Activities building The Musician Action's Group will be performing and I have a renewed sense of optimism that change can come even to Marin where they appear to hate change so much they wouldn't even send me a custom written retirement letter. I got the same one al the 65 year olds got which went something like this:

Dear Carla,

Congratulations on your retirement! We at the College of Marin are so excited about what is in store for you.

Maybe it was custom written and they just hated me that much. They are excited about what's in store for me? Wow. The HR administrator - let's just call her Linda Beam ....because that's her name ....responded to my complaints by saying she was sorry I "took the letter the wrong way." You can't make this shit up. By the way there were only 5 other retirees so, you know, they weren't swamped.

It's a new day though and people are believing that they can be instruments of change.

Meanwhile, I am learning that change often comes whether we want it or not and I'm trying to ride bigger and bigger waves of change without wiping out on the rocks.

I used to be 5'8" with long legs. As a guy I adore said to me "you're long and tall and that's not all." Now I'm 4 foot something with fat wheels. I used to be a half decent cook, now people serve me food. I drop my fork at least once per meal and drink beer from a straw. My bedroom used to be this lush romantic space now it has a commode and a walker and a wheelchair parked by the bed which boasts a bed rail. I had an impeccable home, now chunks of plaster have been knocked out of the wall by a maverick wheelchair driver and the carpet is stained with the many drinks I've dropped. The orange carpet is long gone. SInging gets harder, getting in and out of cars, the shower, the commode all tougher and my energy is limited.

Change comes like it or not. The cure is more change. Every time I do something new I feel powerful to tackle this, be it go on an excursion, start shopping for a pet bird or striking up a conversation with someone new and learning something cool as a result. In those moments it's delicious to be alive.

Friday, November 07, 2008

On Gay Marriage and Puppies

People are hearing the call and rising to the occasion. Two straight couples I know (independent of one another) are investigating how to get very publicly divorced and becoming domestic partners. These are long established couples with kids but do not want to enjoy a privilege that their gay friends are so unjustly being denied. Charlize Theron had already said she wouldn't get married until gay people could. United we stand, divided we have 8 years like the last two bullshit terms.

Another friend is launching a campaign asking all of us to email Barack Obama and asking him to please adopt a puppy instead of buying one from a breeder. What a message that would send. All around me people are thinking about the causes that matter to them and putting their money where there mouths are.

Here's the Barack Obama website:

In the meantime, I suggest we all work to ban Republican marriage and enjoy this song by my friend Roy:

I wish he could retire this song.

Wednesday, November 05, 2008

Tears of Joy,Tears of Pain

There are now 17 women in the Senate.

Think about that.

We still don't know if we have our fillibuster proof majority but there is hope.

A black first family will live in the White House with their new puppy.

A man of integrity will lead the country.

ANd yet.

In California a basic human right was torn from us - and I mean all of us - because when one group is oppressed we are all diminished. Gay people no longer have the right to marry. Now I am not a fan of straight marriage myself. 50% of marriages end in divorce and those are the lucky ones - the others end in death. Nevertheless, if people want to get married they should be able to. I hurt for all my friends who have been told by this vote that they are second class citizens.

And yet.

In the Castro last night, gay men danced in the street for Obama, putting aside the cruelty and injustice of this decision and looking at the big picture. I watched the TV in admiration as they boogied down and I wept tears of joy and pain.

Tuesday, November 04, 2008

Rainbows, Hummingbirds and Straight Men Who Like Shopping for Clothes With You

It doesn't happen very often. Mostly in the movies. I cheer and cheer but the Phoenix Suns never seem to triumph and my favorite shows get cancelled after a couple of seasons.

But sometimes, as rare as a rainbow, the good guy wins.

Savor it today. The sun is shining here and we are assured a victory. Savor it as people flood the streets dancing and banging on pots and pans. Savor the moment because it will fly away like a hummingbird and our normal lives will continue and after a couple of weeks we will stop waking up in a state of wonder. But today is our St. Crispins Day and "this story shall the good man teach his son" as Shakespeare ( or Henry V if you will) said. But instead of a "merry few" the whole world is waiting and hoping for this and it's actually going to happen.

It's an amazing day to be alive.

President Barack Obama.

Monday, November 03, 2008

Morning Cup of Poem

by Pat Schneider

I have learned
that life goes on,
or doesn't.
That days are measured out
in tiny increments
as a woman in a kitchen
measures teaspoons
of cinnamon, vanilla,
or half a cup of sugar
into a bowl.

I have learned
that moments are as precious as nutmeg,
and it has occurred to me
that busy interruptions
are like tiny grain moths,
or mice.
They nibble, pee, and poop,
or make their little worms and webs
until you have to throw out the good stuff
with the bad.

It took two deaths
and coming close myself
for me to learn
that there is not an infinite supply
of good things in the pantry.

"Lessons" by Pat Schneider from Another River: New and Selected Poems.

Saturday, November 01, 2008

My Hero

Barack Obama has stated from the outset that his race was not about a cult of personality but a movement – a movement which requires something of all of us. Like Kennedy said “Ask not what your country can do for you but what you can do for your country.” The next several years will require us to be the best we can be.

It is in that spirit that I emphatically state that Barack Obama is not my hero. My hero is a 16 year old man. This young man has been dealing with his parents’ unnecessarily painful divorce and the fact that his mom has one of the worst illnesses a person could have. He watches as piece by piece she is taken away from him. He cooks all his own meals. He sometimes carries her or buttons her coat. He stays calm if she suddenly can’t breathe or she wakes him up screaming because she’s broken a toe. He has the courage to tell her when life with her feels like “holding a hot poker” and a love of life that allows him to put it behind him at times and just laugh with her.

All that would be enough to make him my hero, but wait – there’s more. This 16 year old has angered some very immature adults who happen to run our small town by having the temerity to disagree with them ( in a measured and balanced way I might add) in his blog on the Albany High site. These “leaders” have called this 16 year old out publicly and accused him (in leaflets dropped on Albany doorsteps) of “Karl Rove-like smear tactics”. Still his response is mature and measured and far more fact-driven than that of these adults, who should be the ones setting the example.

My hero has always combined wisdom and intellect. It was never his amazing brain that got me, but his measured eye and his tender heart - a heart that has been growing like a sea monkey this past year. I’m proud to leave behind some good writing and recordings of my singing but my true legacy, the thing that makes it all worthwhile – is Maclen Zilber.

Another hero is Allison who had a scary allergic reaction to one of her chemo drugs yesterday and as a result will have to have her chemo extended until June. This is a huge disappointment for her and not much to be done for it except perhaps cheery spring hats and lots of love. She is at the beginning of a long and difficult journey.

All you Muselings who write in and tell me about your mom or dad with ALS, your own battles with diseases, the loss of children, loved ones – we all have a story to tell that would break our listener’s heart. If only we could hear that story before we jumped to a conclusion, or took an unfortunate action. The audacity of kindness and understanding.

Hafiz says:

If God
Invited you to a party
And said,

In the ballroom tonight
Will be my special
How would you then treat them
When you

Indeed, indeed!

And Hafiz knows
There is no one in this world

Is not upon
His Jeweled Dance

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.

Sunday, September 28, 2008

Time to get a shit colored fan

I have had the shittiest couple of weeks I can remember and what sucks the most about it is I haven’t hit rock bottom yet. Friday I found out I had hurt my sister-in-law, which is not something I ever intended to do nor something I will easily get over. She is in the middle of the health crisis of her life, juggling 2 darling kids ( not literally, they’re too big for that) and coping with the grief of transitions, adaptations and of course the fear that cancer always instills – facing our own mortality. Allison is such a remarkable woman and great mom and I love her so much that it is devastating to think I caused her even a thimble full of pain.

But wait, that’s not even the sucky part. Around 5 or so, I was getting ready for my gig and I fell fully backwards, missing my hard headboard by about a foot but landing on the back of my head with huge impact. Of course I had taken off my medic alert bracelet (“Help, I’ve fallen and I can’t get up”) for the gig but I was able to crawl to the cell phone and reach Edith. I lay there on the floor sobbing and wondering how the hell I could possibly perform.

Once I got to the club, I was surrounded by so much love and laughter, I got through it all with the help of brandy and painkillers. Lisa made sure I was well iced and the small number of folks who knew what was happening rallied to the cause. Edith informed me she was sleeping over which I felt was unnecessary until I fell again and again hit the back of my head. Again I sobbed and sobbed – less for the pain that the symbolism. These were the two worst falls since before my diagnosis, so scary, violent and random that even I am now forced to agree with many of the health care professionals I work with and most of my friends. I need to be in the wheelchair almost all the time.

Transitions are hard and this one is a bear.

I don’t want this.

I want to be normal.

Sometimes I wonder how many body blows I can actually stand. Since Allison’s diagnosis I have been sick with grief for her, for my precious and amazing niece and nephew, for my poor family who are already reeling and of course for my beloved baby brother for whom I would happily take a bullet (especially now!) While they have been fighting their battles, I’ve been dealing with my own decline, severing a 25 year tie with someone who has been very unhealthy for me, worrying about the state of my son’s hurting heart and slowly realizing that someone I really like does not reciprocate my feelings – or maybe just finds it way too depressing to date someone with my challenges. Either way it has the same effect.

It’s better if these things aren’t jammed into 2 weeks I think.

But here’s the funny part – blessings abound. The boys in the band offer their superb musicianship and their loving friendship, their wheelchair schlepping services, their jokes, their Carla-lifting and love. At the ALS event on Saturday there was no chair lift as promised and one of the men said “Don’t worry, we have all kinds of people around here trained in lifting people” and my piano player John R said “But they don’t love her like we do, “ and my bass player Jon said “Yeah, we’ll carry her.” Which he did, honeymoon-style up the steep set of stairs.

More love – my mom brought the famous (to this blog) Pat H. to the Bay Area to hear the gig. What a treat to meet her in the flesh!

More love – my dad and brother admitting to crying when they read the recent review, my dad covering my head with kisses after the gig and hearing my drummer David talk about joking with Dad at the urinals. He said something to the effect of “your daughter would say something really funny about now.” No doubt.

More love – my amazing, phenomenal, gorgeous girlfriends swooping in, bossing me around and knowing what’s good for me even when I can’t see it. The way they hold me when I cry, hold the space for me to vent, deal with things I don’t want to, mother me in a way that is so hard for me to accept but so deliciously comforting, look gorgeous in velvet dresses and laugh when I offer to help them bury their husbands.

Yet more love – if you saw me sing Friday night, I wasn’t being brave or faking it. I was just thoroughly loving the moment. It’s a joy, honor and privilege to get to sing and tell Sarah Palin jokes. It just doesn’t get much better than playing with those three guys for all of you.