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.

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.

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.

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 www.youtube.com/carlitazs.

With love, gratitude and a little crippled attitude

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).

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.

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.

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.

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.

"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.

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.

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.

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!

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?”
“Cesar.”
“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.

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.

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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.

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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.

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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.

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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.

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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.”

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:
http://hosted.ap.org/dynamic/stories/M/MUTTS_LIKE_ME?SITE=TNJAC&SECTION=HOME&TEMPLATE=DEFAULT

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.

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: http://www.change.gov/page/s/yourvision

In the meantime, I suggest we all work to ban Republican marriage and enjoy this song by my friend Roy: http://www.youtube.com/watch?v=bja2ttzGOFM

I wish he could retire this song.

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.

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.