Overdue blog about a lot of stuff

My new strategy with writing this blog is to train the voice recognition software before every attempt to use it. So far, the downside is that it is still only about 50% accurate and by the time I start the blog, I am already out of breath and mushy-tongued.

This blog is my lifeline, and you, dear Muselings, the rescue team holding the rope. I pledge to write at least two blogs, per month while I can, more if I can figure out a way.

I confirmed today that thanks to Wendy, I will see my brother, sister-in-love and the two adorables next month. I leave on the day Mac finds out if he got into Berkeley so pray for good news. That kid is due something good.

I was talking to Edith about anger. I have been finding myself irritated by a lot of seemingly unimportant things, which, if you are in my situation are actually not at all unimportant. For example: if someone puts my breathing machine together incorrectly, it fucks up my nap. If someone puts something away out of my reach, I can’t get it. If someone opens a window and forgets to close it, I am cold. A simple solution might be to have someone here every hour of the day to take care of those things, but I cling to my last bits of solitude and I won't let go of them until this cocksucking disease forces my feeble hand.

Edith wondered aloud if perhaps I was not angry at these things, but at ALS. I thought she might be right for about three days, but the more I think about it the more I feel that anger is not the right word for what I’m feeling. It's grief. I am finally at a point where I can no longer console myself by saying "oh well, I can’t (insert activity here) but I can still (insert activity here). Truthfully, I can’t do shit.

But I’m not angry. I have no need for that. I’m grief-stricken, but not just for me. Now and then, I correspond with other people who have ALS. People dealing with worse financial worries. People with more advanced symptoms. People more accomplished (no really) and who have contributed more in their field. None of us were chosen for this for any particular reason, we just drew the short straw. I grieve the losses we’ve all sustained but free floating anger is not the answer. It can’t be. I’ve sat and sat with this and I believe it. Anger can’t be the answer.

The thing is, I’m alive and I laugh every day. A guy I knew died yesterday of lung cancer. His name was Ron Stallings and he was this radiant, gentle soul who could always make you feel like the only person in the room. He played tenor sax and he played it well. He played it warmly and full of love and when he played I marveled that his horn sounded like an expression of his deep, sweet brown eyes. We didn’t get to play much together since I was, for a long time, married to another tenor player, but when I saw him, or heard him play, I felt good. Although he was ill, he was one of the many lovely musicians who donated their time for one of my benefits. Another musician I know once said of the passing of his mom “ I feel like there’s one less color in the world.” That’s how Ron’s passing feels.

So it’s hard to be angry, you see, because I’m still here. That being said, I want shit done right, get pissed off when it isn’t and get terrified for the future when I can’t speak or type my needs and preferences. And sometimes this all just sucks too hard.

And then other times it’s too much fun and I laugh until I gasp for breath like when Kris came up with the concept for “ALS Barbie.’ Think of all the accessories! I imagine pulling a string on her back and hearing a slurring voice say “ I hope I can poop today!” or “Silly me, I dropped my fork again!” or "Just my luck - Nurse Ken is gay!" The voice could slur worse each time you pulled the string. And I won’t even tell you the lyrics to ALS Barbie’s theme song. Somebody call Mattel!

But back to anger. (What?! You think there’s anger in those jokes???) In the last year or so I’ve had some amazing moments with amazing friends and some of the most intense and real of those moments have been with Edith (or “Central Control” as Linda calls her) performing her emotional angioplasty on my heart. I’m truly grateful that she helps me “go there.”

Words will never convey how much I adore her.

The other half of Central Control is Kathy, whose fierce love knows no (sane) boundaries. Even on her birthday, she is shopping for me and hand-grinding vitamins for fear I might choke on them. Kathy is the modern day Cassandra – who was cursed by Apollo with the gift of dire predictions that no one believed. She can foresee such horrible things, they should give her prognostications their own word like: “Kathastrophy” or “Kathamity.” When Kathy gives a disapproving glance I’m proud of myself for not wetting my pants in fear, though I’m sure many have felt that warm liquid sloshing in their shoes after crossing her. If they are lucky, they’ve also experienced her delicately chopped fruit festively displayed on a tie-died napkin, her willingness to brush someone else’s teeth, her gentle touch as she administers a hand massage or her determination to befriend a one-woman bird.

My son marvels at her with a grin on his face when she shows up with a funny t-shirt and sushi for him right before her birthday. She (and the other generals) are generosity incarnate.

Kathy’s birthday was this past Friday - finally, I understand why they call it Good.

Centraal Station Antwerpen gaat uit zijn dak!

From my friend Joanna :
This overwhelmed me - watch it all the way- it made me cry just knowing how we all want to be joyful and shed these technology--numbed skins.

Terry Fox ESPN

I am 46 years old and I still can't speak about Terry Fox without crying. He was only a couple of years older than me but he was a giant in my eyes. I have been through some things since then and now I don't see a giant, I see a precious too-young boy with a giant's heart.

I woke up from my nap full of thoughts of Terry, perhaps because of a visit this morning from fellow and former Vancouverites John Zaritsky and his producer Montana Berg. Terry was also from Vancouver and anyone with a particular lilt in their accent reminds me of him. Zaritsky and Berg by the way are going to do a documentary about me, but more on that later.

A few months before I graduated high school, Terry Fox dipped his remaining foot into the Atlantic Ocean. He had lost a leg to cancer and as a consequence decided to run 26 miles PER DAY across Canada. He was to end in Vancouver and this time dip his feet into the more familiar waters of the Pacific.

Like most Canadians, I tuned in to the TV every night to check his progress ( or in Canadian, "proh-gress"). Like most Canadians I was felled by grief when his Marathon of Hope ended after over 3000 miles. He learned in Thunder Bay that the cancer had metastasized to his lungs and he had to return home for treatment which was ultimately unsuccessful.

I can't quite say why I'm sharing this or what I want to say about him except that today, 28 years after his death, my heart is full for Terry. Here he is:

Pretty Burden

My voice recognition software thinks I mean to say “burden” instead of bird. While trying to decide if the bird is in fact a burden, I decided to look up the word to refresh my memory. The first definition of burden in the dictionary is "a load being carried" and one of the later definitions is “a chorus of a song”. I wonder if the loads we carry
( our pets, our projects, our pet projects…) and the songs we sing ( our dreams and aspirations) are what makes us want to keep on living and maybe when our body is the only burden left, its time to go. It is sad when someone like Natasha Richardson (who died after a seemingly minor fall on a beginner ski slope) leaves the earth with so many remaining “songs and burdens”. It also sad when someone who has shed all their burdens except for their body is left languishing on earth without relief.

I have been thinking a lot about the death of Natasha Richardson and how she died doing something fun and - judging from the fact that she was on a beginner slope when she fell - something new. She was a year younger than me. Her sons were 3 and 4 years younger than Mac. I’ve also been thinking about my physical life – the life of my body. It is letting me down at unpredictable times – like the other morning when I fell trying to get from the wheelchair to toilet. I am lucky to have gotten away with only minor aches and I’m trying to console myself with the knowledge that although my body is now very uncooperative, it did a lot of wondrous things at one point (thanks for that reminder, Garrick) –perhaps enough for a lifetime.

Here are some things that my body has done:

I t has stood up on a surfboard.

It has fallen off of a surf board and gotten a big black bruise on its’ little white ass.

It has jumped during an improv scene, from a 10 foot ladder and into the buff arms of an unsuspecting fellow actor’s body, warning him only by yelling "Lookout, catch!" And it leapt.

It has gone boogieboarding in 18 foot waves in Waikiki.

It has danced in parking lots, on beaches, alone in the apartment, and on stage.

It has run headlong blindfolded as fast as it could into a line of people.

My body has walked along the third story ledge of a dormitory for the sole purpose of executing a practical joke.

It continued to make snow angels and be buried in the sand long after it matured and would do so with or without children present.

Prior to my illness, it stood upside down (since 2002 that is) on hands or head, almost every day.

It used to run into the arms of men I liked (even just a little) and leap, wrapping legs around waists and arms around necks. It tended to get their attention.

It briefly rode a bicycle for a living….and rode a bicycle in a skirt and high heels…and rode a bicycle under-the-influence.

There are so many fun and silly things this body has done that able-bodied people I know have yet to do and may never do. It was never the healthiest or the strongest or the most flexible of bodies but it was mine and I made the most of it. I will continue to do so, lugging my blessed burdens along with me and croaking out my songs too. Even if on occasion, I have to fall.

And by the way, Matt Dick-taste thinks Natasha is spelled either “net nausea” or “NASCAR.”

Hello, how are you?

It took me half-an-hour to write two paragraphs of a blog, only to get Mac’s dreaded spinning wheel of death. I had to re-boot Matt Dictate and start all over. Nobody can call me a quitter.... at least not yet.

It’s difficult for me when someone I haven’t seen for awhile asks "How are you?" “Good” I will answer and mean it. "Really?" is often the skeptical response. How can I explain? Life is amazing and terrible, and hilarious and sad. Every day I face new hurdles and every day I laugh out loud.

I am in awe of the magnolia tree outside my window. I love my bird, who just foiled my voice recognition attempts by yelling “fuck ya" when I said "I love my bird," and who is continually messing up the program’s train of thought by shrieking "HI!" The bird forgets that she can’t fly and she falls rather unceremoniously, landing with a crash and squawking "Hello, how are you!" every time. She falls so much I would swear she has ALS. She is so adorable that she helps me remember to be good-natured when I fall.

It is really all a matter of attitude and perception isn't it? My niece hands my nephew some imaginary seeds, which she’s been carefully holding. She plants the imaginary seeds in an imaginary plot and shows her brother where he should plant the rest. He says no. She tells him he must plant them as she has instructed. Again he refuses so she grabs the imaginary seeds from him and walks away. My nephew is bereft . He cries tears only a toddler can cry as he displays his now empty palm to my brother who then has to ask his daughter to give back the non-existent seeds. This manages to placate my nephew. The power of the mind.

When I hear stories about my niece and nephew, I’m great. When I see the look on my brother’s face as he recounts them to me, I’m awesome.

So of course when I say "I'm good" it's true. Annabel and Atticus were playing a game and Annabel threw her hands up in the air and cried "I win!" And Atticus in turn threw his hands up in the air and shouted "I lose!" With equal delight. That’s how I feel – I mean like both of them.

Case in point: this bucking software drives me insane. (Matt Dictate wants me to call it “bucking software.” Sigh. Fine.) It takes forever to write one bucking sentence, then it gets the bucking names Annabel and Atticus correct on the first try.

What the buck?!!?

Okay, but if you look at it another way, how in the hell is it even possible that I am talking into a little microphone and words are instantly being typed? That is totally mind blowing. If I had had this disease even 10 years ago, how much harder would it have sucked?

Case 2: Sure I waited a ridiculous length of time for my wheelchair to be approved by DoucheNet….I mean HealthNet... but it arrives on Tuesday and it is chili pepper red!

I can choose how to look at things. That is the one thing this disease can’t take from me. That and love.

At least that’s what I tell myself as it gets harder and harder to feed myself and impossible to do most other basic tasks. It’s so surreal – I am so handicapped and yet I'm so damned good lookin'. (Please don't come after me for that one, PC disability police -it's a joke.)

But seriously folks....

It's helps me deal with the not so fun aspects of my life knowing how so many of you have shared with me that my illness has brought you in touch with your sense of gratitude. Knowing that so many friends and cyber friends recognize what an awesome gift it is to breathe, to eat, to walk, to type and simply to observe the life around us makes the bullshit go down a little smoother (and no, that is not intended as a mixed metaphor.)

I have to say though, all gratitude aside, I wish Matt Dictate were a person so I could give him a piece of my mind before kicking him in the balls. I bucking hate you Matt Dictate! (I'm feebly attempting to shake my fist. Matt appears un-phased.) By the way my friend, whose name I won't mention in case the ladies in her PTA read this blog, did not blog comment me the following, because she likes to pretend to be demure. As if. She e-mailed me and suggested that since it was MY software it should be called Max Dick taste.

So if you're wondering how I am, I am good. I am terrible. I am in love with so many things and I am so tired and so sad and so scared. Sometimes I want it to all be over soon and sometimes I want to pull the world to me with my hands on either side of it, draw it close and put my lips to it.

I want to stick my tongue in the mouth of the world.

Meet Matt Dictate

Greetings, Muselings! I’m writing to you with the help of voice recognition software, which calls itself Matt Dictate. You know you’re in trouble when your MacDictate program doesn’t know it’s own bloody name. Matt it is.

The other day I moved a refrigerator with my wheelchair. Now you need to understand that I can’t even comb my own hair, but I can move a frickin’ refrigerator. I think that sums up my life pretty well. It took me almost a week to write a blog about health care. It got accidentally deleted. My hands are aching from the effort several days later and the damned blog has disappeared into the ether. Fuck. It was a great one too. An indictment of the fart joke we call a medical system in this country. Damn it was funny. I don't think I will ever be able to find quite as insulting a description of Julie, the gatekeeping bridge-troll from Dr. Gjeltema’'s office. You see, I was finally approved by the mega-corporation, Health Net (who reached me from their flagship office on the Death Star) for my own wheelchair. Health Net has yanked my chain about this chair for seven months. When they aren't torturing cripples, Health Net likes to take candy from babies (By the way, my voice recognition software thinks I said “can be thrown babies.”)

Now, apart from moving refrigerators, wheelchairs are great for getting cripples from point A to point B. (Yes, I am a cripple. I am not “differently-abled” except perhaps on the moon.) I wonder how they thought I was getting around without a chair? Lucky for me, the Muscular Dystrophy Association lends durable medical equipment to people who are Jerry's Kids like me. Thanks Jerry, I almost forgive you for your homophobic public comments. As I love to tell people, whether they want to hear it or not, Jerry Lewis should not be afraid of gay sex since he can already fit his head up his ass. By the way – at this point, I would like run over Matt Dictate with my newly approved wheelchair. After all it can move refrigerators so it should be able crush Matt Dictate.

Matt Dictate will not let me say “fuck” or “cock sucker” or “head up his ass”. It says “fox” instead of “fuck” and when I let loose with a rant including a series of the aforementioned curse words here is what Mac Dick thinks I said. Read all the way through, trust me:

Cheney a hot pink thought they won't they had up to that good as that look at this as a pp in his head very is not a prayer gay sex than they are in a head to bed did have all cake out in wall they thought a long day and out of the bag as that would at this as a new depicting students at his wings' skull of a fluke or so a little studio soon as a new news and say a for him his own he was asked about in what it calls a and contributed to his for a wife's is and I clitoris for life and also the choice right run it like you should read or choose life for Jews that modeling by the show's life good new rules went off solo wound you believe that abortion is the choice of what and are absolute stuff with the choice of sites noting you don't need the film is from the because you've been designing and conducting fell for that what I can't say when like that I can flit in and from a

I did not make any of this up – how could I?

Along that absurd same vein, I ordered a “blanket cradle” from the medical supply place. It’s for people who can’t move blankets with their feet or legs. Wendy opened the box, which contained the blanket cradle and a flyer for dildos and vibrators!!! Not even special handicap friendly dildos (chin strap-on?) but your garden variety able-bodied sex toys. I’m pretty sure I’m this company’s youngest customer and even I was taken aback so what gives?

Kathy made a wheelchair bird perch for Ronald who enjoys hanging out with me flitting from perch to lap to the big perch. The other day while seated on the perch she set off my life alert alarm with her beak! Fortunately, the operator found it amusing. Perhaps I need to teach Ronnie to say “Help, I’ve fallen and I can’t get up!”

I’m trying to teach her to yell “Freebird!”

So my right hand is almost gone. I tried to give Mayra the “thumbs up” sign the other day to indicate I was fine and my hand cramped up something awful. Just imagine how much it would hurt to high five!

Joni Mitchell said “Laughing and crying, you know it’s the same release.” Or as Matt Dictate would say: “Land less than an and know his name in the release.”

ALS is fucking hilarious. Stay tuned for more "mac-a-propisms."

Dying as a Work of Art

I am a performer who doesn’t perform. A singer and actor who can no longer sing or act. I have spent a lifetime using the happiness and heartache that has come my way as artistic fodder. I shamelessly poached from my own life and put it on the stage to the point that in the midst of a mugging at gun point or while being asked to fellate a creepy driver as I walked along a lone New Jersey highway or while walking 6 blocks to the hospital after my water broke because my baby daddy was too cheap to pay for hospital parking, I would console myself by thinking: this will make a great story if I survive!

So now I have this great material and truthfully, I don’t know any way to deal with it but publicly. I share with all of you because I don’t know another way. I am actor and spectator – watching in fascination at the comic and macabre tricks my body is playing on me, then reporting it all back to you with gusto and (I like to think) flair. I’m not blogging to help anyone feel better about their life or to offer a catharsis service – I do it because I don’t have a better idea. I was talking to my brother about this very thing and I was so grateful he got it, even though he is an immensely private person himself.

It’s becoming harder and harder to type and talking aloud is tiring and finding time when no one is around so I can talk aloud freely is hard. I hate to think that eventually even this blog will be taken away from me.

My right hand is very weak and will soon be as useless as the left one. With that hand will go the last of my once-treasured independence. It all becomes kind of ordinary - these little losses cut up into tiny digestible pieces –like god is playing Kathy Sprague! (Inside joke alert: Kathy always cuts my food for me –even the stuff I could maul apart crudely).

I hold onto the present moment like it’s a tree in a tornado. If I look back at my gorgeous life too wistfully I’ll crumble, if I look ahead to a time when I will be a prisoner in my body, I won’t want to go on. This is it, I tell myself. So you can’t sing? Then love how your bird sings along to all kinds of music. Dance in your wheelchair. Laugh with your son. Keep a brisk pace because if you slow down, despair will come nipping at your heels. Love, love, love then love some more.

And write about it all as long as you can.

Shake A Tail Feather!

Your smile for the day. Watch the whole thing!

The Thing with Feathers or the H Word

I was taking a walk with the walker across the room using the arm splints I got from Michelle (my gorgeous PT) to hold myself up. Natta walked behind me to brace me. It was an exhausting and shaky little walk, but it felt great too. I walked past Ronald’s cage and she freaked out. She forgot that her wings are clipped and she kept trying to fly only to fall rather unceremoniously. I said to Natta “She sees me walking so she thinks – well hell, if she can walk, I must be able to fly. We laughed until I almost lost my balance.

Hope is the thing with feathers.

I’ve been thinking and talking a lot about hope lately. With Kaila and her friends, with my doctor and with Jason. With all due respect to President Obama, I’m not a fan of hope. Hope is a kind of passive emotion. We hear about hopes smashed, hopes thwarted but we never say someone made their hope come true. Hope is vague just as luck is indiscriminate. Hope waits around. Hope gets disappointed.

I hate it when people tell me not to give up hope. Of course I won’t – I never had any to begin with. What I have is belief: belief in the science that says for now ALS is incurable and belief that I can have a good life despite this fact. My outlook may not seem optimistic but I am an optimist. My good attitude is not contingent on the medical cavalry rescuing me at the 11th hour. It is unconditional and un-tethered by heavy hope.

The stakes are high. I don’t have time to dick around with hope or despair. Those twin time suckers hang out together all the time. I have time for laughter and joy and sex and music and work and play and children and birds. I have time for water and movies and family and poems and tears. I have time for girlfriends and butterflies and brandy and practical jokes and the internet. There’s simply no time for hope.

Jason was talking about one interpretation of hope – I think it was Jung’s but I’m often wrong – involving Pandora’s Box. All of the evils of the world are unleashed but the box is slammed shut before hope escapes. “Think about it,” he said. “That means hope was one of the evils.”

Wow.

On another note, my pal Gina is throwing a benefit for me next Friday at The College of Marin. For info call 415-485-9555. Laughs are guaranteed.

On yet another note, I want to be the face for Thick-it ! I fucking love this stuff! It’s a water thickener that makes water nectar consistency but it still tastes JUST like water. When your larynx says “stick it” just try Thick-it. I think I’ll do my own commercial so stay tuned.

The Holiest Place on Earth

First I wish to apologize if I haven’t returned a phone call or email from you. Talking too much tires me and typing is tough. What can I say? It sucks to be popular. Please don’t give up on me though – I love hearing from you. Today I couldn’t do that mouth-pursing thing you do when you apply lipstick. The top left half of my lip wouldn’t do what I told it to do – I felt like Meg Ryan after the botched collagen job.

I feel lucky to find these things curious rather than tragic…mostly.

Ronald is settling in to our home. If I leave her alone and go to another room she yells “Hi” in a really loud voice then she tries to get me to count to 4 with her and when that doesn’t work she says “Fuck you” over and over again, punctuated by the occasional maniacal laugh. I love this damn bird!

Over the weekend, Mac, Jamie and I flew to Orlando to go to The Holyland Experience - a Christian Theme Park. The park boasts a “He is Risen” topiary, a gift shop with Bible highlighter pens and 7 dollar crowns of thorns ( a bitch to take in your carry-on –they’re pointy!), the kid’s “fun zone” where you get to be swallowed by a whale with Jonah and a number of sea creatures who speak ebonics for some reason (don’chu be listenin’ to that starfish now Jonah, mercy me it sho is dark in this here whale belly!) and of course the main event – regularly scheduled crucifixions.

Jesus is whipped and beaten with great vigor, regularity and yes, punctuality and in such a realistic way, Mel Gibson would be proud, though Mel might object to the lovely young black woman with the amazing voice who sang like Beyonce into a headset mic as Jesus got his ass handed to him. Mel would have at least had her sing in Aramaic. People wept as they watched Jesus stagger through the streets of….Orlando and their children hid their heads in horror as the Romans whipped Jesus and the red-tinted corn-syrup blood (please let it be corn syrup blood) sprayed off of his lash-torn back. Side note: Jesus had a full and hairy beard and no body hair at all. Jesus waxes!

I brought him (aka Him) a Valentine, which I hoped to give to him personally but they keep him under wraps. The man has suffered enough, I suppose. I had wanted to secure my place in fundamentalist hell by luring him with a valentine, getting him to hug the cripple then slipping him the tongue. It would have been my magnum opus. Instead I ended up trying to con a nice shepherd girl into getting me to him.

Let the record show I didn’t lie.

I told her we traveled across the country to see the Holyland. True.

I told her I really wanted Jesus to get my valentine bear and chocolates. True.

I told her I had ALS and that it was progressing quickly and I would die probably in the next couple of years. True.

Something happens to these events when you put too much of your real self in them. They get real. If you’ve seen the plays I write you know my pattern – get ‘em laughing so they’re off kilter then sucker punch the audience with a true moment. This time I did it to myself.

The shepherd girl embraced me, crying. She said “Bless you, you’ll soon be with our Lord.”

And much to my surprise, I cried.

I thought I was crying from guilt at attempting to manipulate this sincere woman.

Then I thought I was crying because “soon be with our Lord” is a euphemism for dead and that’s a tough one to hear out loud.

Then I realized that I cried because this devout fundamentalist and this foul-mouthed, satirical Berkeley-ite had reached across a vast divide and found a plane where both of our truths could momentarily fuse.

I cried because compassion can flow from the unlikeliest sources.

I cried because in the midst of plastic Jerusalem artichokes, canned religious musak, and “take your picture with Jesus” displays, I was forced to look at the layers of complexity at play, forced to put on the 3D glasses and see real people.

Ironic, huh?

I didn’t see Jesus, I just wanted to leave at that point.

We arrived at our cab 15 minutes late but the driver – half Greek Orthodox, half African Muslim, all agnostic said “ I told my dispatcher I will not keep the meter running. These are good people.”

Mac had told Jamie that every cab driver would tell me their life story and every crusty old man would go out of his way for me. No one proved him a liar. I was especially moved by the Moroccan Disney Shuttle driver, who was recruited by Disney to move from Morocco to Orlando to play his flute in a live show several times a day. Back in Morocco he had made his living by playing the traditional music of his region. Then they cut the Morocco show and switched him to van driver. The world is simply swollen with broken dreams.

Disneyworld (aka The Crappiest Place on Earth) was underwhelming. Wheelchairs go to the front of the line there but every line held a fucking fleet of them. The disabled Olympics don’t have that many wheelchairs. I felt like I was at murder ball tryouts. The sick part was that most of the wheelchair people could blithely spring from their chairs and dash to the ride to get the best car while Mac would grab me under the arms and Jamie would grab my legs and they’d sort of pour me into the ride. We did the rather disappointing Pirates of the Caribbean ride, It’s a Small World ( who needs hallucinogens when you have this ride) and the teacups (weeee!) That took the entire day.

The best part of the trip, however was hanging with Mac and Jamie. We had a great chemistry together and Jamie was nothing short of perfect as a helper. If you could only have seen the two of them hauling me in and out of cabs from the wheelchair, administering the seated Heimlich/assisted cough like old pros and causing me to laugh myself into choking fits. I had at least half a dozen pseudo bulbar episodes (uncontrollable and out of context laughing or crying fits) all of which were laughing episodes and they just laughed along.

Jamie lost her mom when she was barely pre-school age and she remembers asking her if she was going to die, just like Mac asked me before my diagnosis. It broke my heart to think of this sweet little girl asking such a grown up question. Like my boy, she has had to grow up fast and though it isn’t fair, they’ve both grown up pretty damn special. If she were my daughter I’d be mighty proud.

SO there I was on a funny trip that turned poignant with two cynical kids who really aren’t cynics at all. Why do we ever expect things to be like we planned?

I have more stories than I have strength to tell. Sometimes I wonder how I will get them all down. I won’t live on but dammit, I want the stories to be immortal – the sad ones, the funny ones and the ones I haven’t figured out yet.

And the ones I haven’t lived yet.

I leave you not with a story but with the image of a beautiful girl with kooky attire and an unsightly hoop through both nostrils wedged into an airport bathroom, hugging her crippled former teacher who is crying because wise and beautiful boys and girls shouldn’t have to grow up so fast.

Ironic, huh?

Are Your Problems a Punishment From You-Know-Who?

I have a sign on my front door directed to people selling magazine subscriptions, political ideology or religion (in particular I call out Jehovah’s Witnesses). The sign explains that I have a fatal illness and I don’t want to be disturbed. It cannot possibly be misinterpreted.

Well.

The other day two Jehovah’s Witnesses stopped dead in their tracks partly up my front steps. They carefully read the sign. They consulted with one another in hushed tones and at great length. What a dilemma! Clearly they needed to save my soul….and quick! But what about honoring my wishes? What Would Michael Jackson Do? The conversation continued while I spied out the window from my wheelchair like Jimmy Stewart in a much less suspenseful Rear Window.

Finally.

They left their literature at the front door opened to a particular page, which boasted the title: “Are Your Problems a Punishment From God?” Sometimes life is so funny you need adult diapers.

Rest easy, though Muselings, God is not punishing you for your sins (yes, I read the article) so sin away – it is the devil who brings about your pain and suffering. I never did trust that guy. The devil reminds me of Rainer, my son’s childhood imaginary friend who drew blue crayon all over the walls, fed the dog forbidden treats and turned over toy bins into the heating vent.

All I know is that these guys were sent by angels, because they gave Mac and me a lovely laugh.

Kathy and I went to the Forbes Norris clinic yesterday. A six hour visit. Oy. It was great as always to see everyone and I didn’t cry once (so where the fuck is my cookie? I’m waiting Forbes Norris!) Speaking of treats, Kathy offered Dr. Katz a piece of gluten-free carrot cake and he explained he was “gluten-only” and that if he ate anything gluten-free he got diarrhea. Kathy always brings yummy snacks to share on these marathon days. I would say I wish she would adopt me but since she already feeds, dresses, washes, flosses and financially supports me, I guess she already has adopted me (sharing custody with Edith, Kris and Wendy).

So I did it – I tattooed “Out of Order” on both feet. Why? Because if I tattooed my fingers I’d look like Robert Mitchum in Cape Fear, my Lloyds of London insurance policy doesn’t allow me to do my legs ( I have the sexiest crippled legs in Crippledom) and diaphragm tattoos don’t show. I insert a picture here for your “Oh no, she di-dn’t!!” pleasure.



Friday Mac, Jamie and I leave for the Holyland….Experience in Orlando, Florida. Get ready for your heart shaped box of chocolates, Jesus!

Ronald

Here's the main reason I haven't been posting. I'll write about the rest later. In the meantime, meet my girl Ronald!

U Suck Healthnet

After one too many glasses of wine I slalomed the traffic pile-ons on my street (it was my stepmother’s idea). Unfortunately the chair slows down on sharp curves so I wasn’t terribly impressive. It reminded me of something Nurse Bob told me (in case you’re wondering, we love Nurse Bob) about how wheelchair drivers can be charged with DUIs. Think about that. When you get a DUI, the authorities revoke your license to drive. My license to drive a wheelchair is ALS, which technically the cops would have to revoke. Someone needs to give Nurse Bob a grant and while you’re up, pour me another drink.

The cure for ALS will probably seem that easy. All the years of research will soon be forgotten and parents will say to their kids “ you have to understand that back then, it was a death sentence” like I did with my son as we watched Philadelphia on DVD, trying to explain to him the AIDS research strides. Yes, the cure for ALS will seem easy and will most likely pre-date the cure for the American healthcare system.

Obama told a moving story during his presidential campaign about watching his mother on her deathbed, fighting with insurance companies and how it compels him to want to reform our broken system. Doesn’t seem that hard, does it, to move to a model of care that every other industrialized nation uses? I think it will be next to impossible. I won’t bore you with statistics you probably already know, I’ll just share a bit of my experience.

Healthnet, I’m sad to say, has been my “health insurance” carrier (cough, cough) for 16 lamentable years. It is a for profit company that puts roadblocks up for care that they state in writing that they cover. They have rejected my claims for prescriptions, for specialists and drowned me in red tape over breathing machines and a frickin’ wheelchair!!! My health care advocate (who I have thanks to Kris) has 2 appeals out against their rulings and they are out of compliance by not even bothering to respond. Now their nefarious deeds are to be expected, they are after all, an insurance company, but what about the gatekeepers at the doctors’ offices who refuse to pick up the phone and make a call or two to help someone in need, who are rude and act like I got ALS just to annoy them, who cannot be melted even when I explain I have a debilitating fatal illness ( yes, I’m talking to you Julie from Dr. Gjeltema’s office, may you thank the gods everyday that I don’t have that flamethrower wheelchair or you would be Bitch Flambe ). Whose side are these people on???

That’s why I hold out little hope for American healthcare. It’s not just the insurance companies – it’s the system – all of it. Let’s call the Forbes Norris Clinic the standard deviation from the mean – they are compassionate, human, competent, helpful and fun. With them as a notable exception, I have to say that both Australia and Canada have VASTLY superior healthcare systems ( and my German nurse complained about how bad healthcare was in Oz – I told him “never work or get sick in the US.”) For a mere $2000 Australian I had 3 days in the hospital, xrays, ekgs, numerous blood tests and excellent care. Here’s an amazing concept: when you hit the nurse’s button in Australia….someone comes right away! That should seem normal shouldn’t it?

We are numb to how wrong this system is. We are Patty Hearst suffering from Stockholm Syndrome. We have been served a giant turd and all we can say is “this chocolate tastes a bit stale.” We all live one major illness away from knowing just how hard American healthcare sucks.

So write a letter to Obama and tell him to make this right – for the memory of his mother and for all the dying mothers out there who really don’t need this shit.

Prayer Corner

Many of you have included Allison (my sister-in-love) in your religious or secular prayers and I thank you for that from the bottom of my heart. I now ask you to include Tumurbaatar Sumiya, husband of my new accomplice Soyumba who is taking over the night shift (Mayra and Natta are still with me in the daytime and my friends help on Sundays.)

Tumurbaatar has lymphoma and the young couple has 2 children - a 12 yr old back in Mongolia and a 2 yr old here in the US. She tells me that some days she is hopeful and positive but some days she just can’t believe how unfair life is. “ Good people die young,” she tells me. “This is not fair.” I pull out my boiler-plate line “Do you want to be the one who picks who lives and who dies?” This never works so I should shut up already. Gerry’s response when I asked this was “YES! I DO want to pick and then you don’t die and someone who deserves to does.” I don’t want to pick but I don’t like thinking of people who have little ones being sick. It isn’t fair.

So put a kind thought or word or intention or prayer out there for him and I will do the same.

A Few Things

So here's a few things:

I was initially so dismayed that Rick Warren was chosen as a spiritual representative for the Obama Inauguration. For one thing it was a slap in the face to all the gay couples, families of gay people and friends o’ gays that took the passing of Prop 8 as a heavy blow. For another, his dogged and foolish fight against stem cell research has influenced others. The lack of stem cell research in this country has caused an unknown number of deaths, maybe even my own –and for what? A gross misunderstanding of the use and the acquisition of embryonic stem cells. For example – what about the embryos that fertility clinics throw out every day? Ignorance bothers me, but willful ignorance – man that pisses me off.

But when I listened to Obama I had to wonder if one of the many ways he challenges us to show up and participate in the affairs or our world, our country and our community is the challenge to accept and forgive. This morning I was talking to Mayra, a devout Buddhist, about a difficult person in my life and she said “Ya, but you gonna have to forgive or you keep coming back and meeting that person in the next life until you learn.” No fair! Who wants to forgive? Gene Robinson does. He’s the first openly gay Episcopal Bishop who gave one of the many Obama inaugural week benedictions. When he and Rick Warren crossed paths, Bishop Robinson was friendly and told Warren he would pray for him. This guy gets major points with me not only for that but also because he’s hilarious enough to crack Jon Stewart up. Stewart asked him if it was hard to get around D.C. when he could “only move diagonally” to which the Bishop replied “don’t forget, there’s also a queen on the board.” Sweet.

Maybe the hardest folks to forgive are the ones we need to start with. Hamas and Israel. How does that one end happily without a mountain of faith and forgiveness from one side or the other? Prop 8. Can gay people and those of us who fiercely love “our gays” forgive the homophobes in this state? IS there anyway for them to understand us without us loving the fuck out of them? (their greatest fear) Can we ever forgive Iraq and Afghanistan for hoarding our oil? (D’oh! There I go again – you see I’m new at this benevolent shit.)

Obama was gracious to the domestic terrorist Bush but it wasn’t appeasement. He talked about restoring science to its proper place, he rejected the false choice between safety and ideals and he said that the stale political arguments that have consumed us for so long no longer apply. If that didn’t make Bush squirm in his seat I don’t know what could.

As for me, I will try not to expect too much of Obama and expect more of myself. I think I’ll start by working on that pesky forgiveness thing…um….can I wait til tomorrow? That way I can hate the shit out of someone and just get it out of my system? No? Drat.

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I haven’t figured out the vlog thing yet (too sleepy) but I did upload a video of me singing at the Sydney Opera House. It’s on my youtube channel which has some kind of dodgy stuff on it (I mean like worse than the blog) so don’t watch stuff if you offend easily. My comedy partner Gina and I did a series of dating service videos that are on there and I also have some videos from my now defunct website Iblewbush.com where different characters talked about having sex with Bush since apparently that’s the only way to get someone impeached in this country. Anyhow – long way of saying that the Sydney video is there along with some videos from when I could actually sing. (That sounded whiny).

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I didn’t eat vegemite in Oz as all challenges kinda went out the window after the hospital stay. I am however accepting challenges for my Orlando trip to the Holyland Theme Park. I will ask Jesus to help me walk (duh) but I’m open to anything within the borders of Holyland and Disneyworld and the Pirate-themed hotel in which we’re staying (yes, they have wheelchair accessible pirate rooms, Virginia!)

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Finally, I’m including a picture of the most bad ass wheelchair ever! This chair would ALMOST make ALS worthwhile. (It has a flame thrower!)

No Place Like Home

I arrived home to a fully furnished new home. The pictures were hung on the walls, which were freshly painted. New curtains hung in the dining room – sheer panels of purple, turquoise and gold. A new leather sofa courtesy of Wendy and Edith rested against the living room windows. Mayra and Natta playfully taped one of my bras overtop of the bare breasts on one of the paintings and Lucy made a Welcome Home sign to which all of the helpers contributed a signature. Edith bought plush plum towels and John put in a new sink and a piece of wood to ramp an abrupt drop between the kitchen and dining room and he is coming back on Saturday to see what else he can fix.

There was a large and enthusiastic workforce by all accounts, which was led by Edith, Kathy and Wendy who were also the Welcome Home Committee, making sure I had food, a shower and a high enough toilet so the transfer to the wheelchair is easier. Oh, yes and my wheelchair is now swathed in leopard skin.

It is impossible to describe how it feels to come home to a HOME you’ve never seen and have it feel like home. It’s as nice a place as I’ve lived my whole adult life and so festive and colorful! It’s impossible to describe how it feels to know so many people were there for you, chipping in. It’s impossible to give enough credit to my “moving captains” who think of absolutely everything and there’s no amount of thanks that feels sufficient.

Mayra and Natta are organizing a Mexican dinner complete with FIREDANCING to thank everyone so that’s a start! Next week Kris will begin the task of organizing the kitchen and closet and Mac and I will nail down plans for our next trip!

Mac is loving his internship with a local legislator and is already working on writing a bill! He is finishing of his sophomore credits and if all goes according to plan he’ll be junior at Berkeley this coming fall and continue working at the State senator’s office. Life is good as the t-shirt says.

It’s great to be home.

The Aussie Adventures, Part 4: The Final Countdown

I’m here because when I said rhetorically to Mac “Do you know where we should go?” we both answered in perfect unison “Sydney, Australia.” It was the first time either of us had uttered the name in that context.

I’m here because he was willing to be away from his busy life and do the heavy lifting involved with traveling with me.

I’m here because Lisa gave up 2 weeks of her life, contributed a significant (HUGE for her) chunk of money for her part of the travel, showered and dressed me every morning and got me ready for and into bed every night. She also was integral to the wheelchair assembly/disassembly, got me a soy chai latte every day and reported in vivid detail on all her adventures that I missed. She’s such a wordsmith, it’s like I was there.

I’m here because while I’m here, my friends are packing up my apartment, painting my new house, installing a wheelchair friendly sink and pulling out the old one, buying a sofa, moving me in and unpacking me. Don’t bother re-reading that paragraph again – your eyes were not playing tricks on you. They really did do all that! I am coming home to a brand new home I have never seen with my stuff in it.

Finally and most importantly, I’m here because my Dad wanted to give me the trip of a lifetime. He spent a ton of money on the three of us, effortlessly welcomed Lisa into our family ( easy to do), went along with everything we wanted including sitting through some of the WORST theater ever, arranging to get me on the stage of the Opera House to sing for Allison’s challenge, letting me take risks I needed to take (leaving the hospital against doctor’s orders and taking a crazy ride) all while coping with missing his wife and dog and worrying about me and Allison. He put up with me yelling at him when he broke traffic rules and responded to me like a perfect gentleman. He and Mac hauled and lifted my increasingly weakened body and occasionally my wheelchair with me in it.

In short, he was a hero.

Here’s what I didn’t get to do:

All the sights with stairs.
Didn’t meet Bruce or Sheila.
Didn’t take Nat King Cole records to Newcastle (Coles to Newcastle – get it?)
Didn’t (couldn’t) challenge an Aussie to a drinking game.

I was often too tired to do much of anything. When I sang at the Opera House, I was so weak from being carried onto the stage over a precarious ( probably deadly fall) pit and so moved to be singing that my voice shook and I couldn’t tune it to save my life. My last night included theater that was an insult to actors everywhere and a fight with my precious son ( great make up talk though). I could easily tell you the story of a disappointing trip.

But then I would have to leave out the birds – lorikeets, ibis’, conures, pink cockatoos, emus. I would have to leave out holding a baby Wallaby in my arms, seeing a Joey peek out from its mom’s pouch, seeing a koala close up, have more people call me “darling” in two weeks than I’ve had the rest of my life. I would have to leave out how people in wheelchairs nod or say “hi” or even want to talk, much to the bemusement of Mac, and the laughs and the sunsets and the feeling you get when you’re in a new place for the first time. It cost a lot to be here (not just money) and I don’t know if I have another “far away” trip in me, so this is the story I want to tell.

The Aussie Adventures, Part 3: Birds and "Birds"

We are in the Blue Mountains. 5 brilliant red and blue wild crimson rosella parrots live in the backyard of the house, and come right up to the bird feeder on the porch. A glorious Australian Magpie sits on the porch rail looking stately. On our way here we went to a grove where cockatoos flew freely and congregated in large groups. This is a bird lover’s paradise. The house is equipped with a rolling commode, 2 wheel-in showers and a hoyer lift. All the halls and doors are wide. It’s as perfect a handicapped house as I’ve ever seen.

On the way here we laughed and marveled at some of the signage. We saw some rough looking fellows “erecting” a scaffolding for the Viagra Scaffolding Company. The logo is a comic strip sexy woman whose breasts fly in the face of Sir Isaac Newton’s Law. The hammer which hangs from her tool belt obscures her….coif (Lisa’s term) and her mane of blond hair bursts out of her hard hat. The slogan? “Let us help you get it up.”
I simply lack the imagination to make this up.

A billboard on the freeway shows another sexy woman (real this time) looking disdainful and crooking her pinky finger into the universal sign for “that guy has a very small penis.” The caption? When you speed, no one thinks “big’ of you. Wow.

All along the road are adverts for the rest stops which say “Rest, Revive, SURVIVE.” Seems a bit alarmist if you ask me.

On the other hand, the people are polite to a fault. No one has asked why I’m in a wheelchair so I’ve been unable to fulfill one of my challenges to answer that question with “because a dingo ate my baby.” One of our waiters said to me as I rolled over his foot: “Sorry, I think my foot is under there.”

For a few days prior to arriving here we were at Coogee Bay – a lovely beach with jewel-like water, light, soft sand and tiny nocturnal seagulls the size of doves. The ramps go right to the sand so I could sit against a wall and watch the action. Lisa found one ramp at Covelly Cove which went right to the water so I could sit on the edge of it and dip my feet. I had morning beach time with Dad, looking out at the water as he rubbed my hands and feet to help with circulation, delicious retail therapy with Lisa which included her finding the perfect gift for me to get my moving captains and lovely walks along the boardwalk, talks and meals with Mac.

The last night was very warm and Lisa and I sat at the beach and just watched. The water was that indigo and the night light made the whitecaps iridescent. Young people ran joyfully in the sand and I was flooded with gratitude that my memories of running in sand until I fell down are not distant memories, nor are my memories of playing chicken with the waves, boogie boarding and falling off of a surfboard. I had a ball on the beach until I couldn’t anymore.

I remember a couple of summers ago playing “running, blind word-at-a-time-stories” with Rebecca Stockley an amazing improvisor and friend. She held on to me and I was blindfolded and as we collaborated on a present tense story, alternating one word at a time, I remember the wet grass between my toes, climbing a rope hammock blind ( we were on a pirate ship), feeling the cool night air and not just remembering being a kid but really for that moment being a kid. I felt supremely alive.

Moments. Maybe that’s our life – we stitch them together like my friend Wendy does with her quilts – taking scraps and making something whole and beautiful and unlike any other.

The Aussie Adventures, Part 2: Last Tango in Sydney

In my dream we drive past an aviary, a huge enclosed space full of greenery and sparsely populated with exotic birds. They are caged but would barely have cause to complain since the cage is wide and high. The dream is so real that in the morning I am resolved to go back and find the aviary until I remember that I only dreamt it.

Sometimes I barely notice my cage and feel little cause to complain. There is still width and breadth for so much.

Lisa is my proxy sightseer. Up at 5 or 6 for a walk, yoga and to buy us both our drugs of choice (chai for me, caffeine for her) in bed after a long walk by 10 or 11, she spends the day a captain of industry, uncovering every quirky adventure to be had in Sydney then dutifully reporting them in thick description. I thirst to hear of her latest adventure – like Thomas’ Pool for Women, Girls and Juvenile Boys ( presumably this means young men who act very immature?) The pool is really the ocean with a barrier wall and it sports a sign that says “Warning: dangerous creatures may wash in.” Behind the walls of Thomas’ pool, Muslim women shake off their super – hot (not in the good way) chadors and enjoy the relief of the cold water, hardy elderly women do their laps and people like Lisa soak it up and hope that sharks are not among the dangerous creatures washing in.

I forgot to mention in my last post that Nurse Peter wheeled me out of the hospital and into the parking lot on New Year’s Eve where Lisa, Dad, Mac and I ended up having a brilliant view of the fireworks. They exploded into hearts and cloudbursts and off at Circular Quay we could hear the crowds cheering. The fireworks are said to be among the best in the world. We all thought I’d miss them so to us they seemed especially grand and Mac perked up for the first time since I got sick.

My dad has been amazingly generous – generous with money, with his time and with allowing me time to just be with Mac. You see Mac and I will never again have a vacation alone. I’m so glad we acted like Sayulita was our last solo trip because it was.

How many “last times” have you had when you absolutely knew it was the last? Last day of high school or college? Making love one last time with an ex? Moving from a home that you’ve lived in for a long time? Aren’t those last times rich – swollen with memories, mourning, passion and possibility? I have “last times” a lot. The latest was amusement park rides. We were at Luna Park an old 30s style park ground which we got to by a fascinating ferry ride with a crusty old one-legged skipper. Although the ferry is wheelchair accessible, there are steps from the ferry to Luna Park. Our one-legged skipper shouts “Oy” (spelled the same as the Jewish “oy” but never to be confused for the other) and a large young fellow runs up to help Dad and Mac lift me and the wheelchair up the steps.

We decide on our rides – Lisa and Dad to the ferris wheel to see the view, Dad and Mac on the bumper cars and Mac and me on the Tango. Now sure, I could continue to go on some pussy ride like the swan bench on the carousel but that kind of defeats the point now doesn’t it? We chose a ride that was moderately adrenalizing rather than a full-on roller coaster which even I knew would be suicidal.

Later Lisa reported that my Dad was not comfortable with my doing this particular ride but in the end felt it was my life. I love that about him. The guy taking tickets had to go get a supervisor who asked me a series of questions re-my fitness to take the ride. Once he was satisfied, they moved me from chair to car and I had a ball ….for one quarter of the ride. Once the car picked up speed I realized how useful hands are for holding bars and ankles are to brace oneself against overpowering G force. Mac put his shoulder over mine and pressed me against the back of the seat to the best of his ability, speaking to me calmly “Are you okay? “I got you” “Do you want me to stop the ride?’

Yes. I stopped the ride half way at the point where they tease you that it’s about to go much faster. My hands and feet were shaking so hard I couldn’t hold on at all. They shook so hard I couldn’t help at all with the transfer back to the chair and the feet continued to shake until the ferry arrived.

Bittersweet to experience this last time with my boy who I used to comfort on scary rides and who has grown into a nurturing young man. I remember taking the Indiana Jones ride at Disneyland with him when he was 5 and reassuring him to no avail as we were assaulted by snakes and rogue boulders until finally when the ride ended he bolted and I had to chase after him. “THEY LIED” he screamed when I caught up to him. “THIS IS NOT THE HAPPIEST PLACE ON EARTH!” I cracked up. Tears and laughter seem to go hand in hand.

The Aussie Adventures Part One: Lord of the Toilet Rings

Our trip begins quietly. An uneventful flight, through which I sleep I and make the nearly impossible odyssey to the toilet. Lisa and I check in to our “handicapped” room which has an accessible shower and two beds as requested….and four stairs leading into the room. The woman at the front desk is in no way nonplussed by this information and I want her to be. Nevertheless she remains……well…..plussed. Our next room has a curb leading into the accessible bathroom. Yes, you read me correctly, a curb. I am at this point apoplectic and the woman is confused at why these things would bother me and utterly unapologetic. Never stay at the Darling Harbor Holiday Inn. They all suck except for Andrew. Our final room has one single bed and they refuse to bring in a rollaway since now they claim we only wanted a single room. What?

Here’s a modest proposal: if you boast the sign with little blue stickman in a wheelchair, don’t put the towels 6 feet off the ground and make doorways wide enough for a wheelchair to pass! Otherwise make a blue sign with a stickman leaning on a cane, or using an ear horn or having a bipolar episode.

The 4 of us propose a scavenger hunt. We need to find a guy named Bruce, a Starbucks, a Latino and a store with the name SHeila in the title. I pick up my Aussue condoms lest I forget (Mom, don't forget my Mexican condoms) and our trip has begun!

That night my fever spikes and I begin vomiting. This continues until we get the hotel doctor to see me. It continues until the ambulance arrives. I am severely dehydrated and in the words of those immortal bards aptly named Foreigner: hot blooded, check it and see, got a fever of a hundred and three. Upshot is I’m in the hospital 3 days. BOO! I’m released with an “against doctor’s orders” note and an order to come in the following day to have my potassium level checked which is almost but not quite low enough to necessitate putting me back on the IV.

Now a word about Syndey doctors. They look like American fireman. Cuter even. I see 5 doctors. 4 are hot enough to hold the big hose, 2 are hot enough to play TV doctors in America and one is cute enough to play an American TV fireman. No wonder my fever wouldn’t go down. Lisa, who worries worst case scenario far more than I do is worried I am in deep health trouble until she sees me flirt with Doctor Mark ( or Maaaak as he calls himself) in between bouts of vomiting. The flirt force is strong in this one. Now Mark is aware that I have MND ( aka ALS – everything is different there) and aware that I’m wheelchair bound so can’t kneel to the porcelain throne. Yet he asks me “Other than the fever, weakness and vomiting, how’s your health?” I give him my most wanton smile and say “Apart from the fatal illness, generally I’m great.” He smiles. It’s so on. Later I find out Mark’s last name is Tybalt – kinsmen to mine sworn enemies, the Capulets. “Oh fair Tybalt, defy thine father and deny thy name. A cute doctor by any other name would smell….so manly, mmmmm – oh oh – time to puke green stuff again.” (That’s my inner monologue).

SO my illness has left me depleted and with about 2 hours worth of sightseeing in me per day. Needless to say I’m in no shape for challenging an Aussie to a drinking game but I have tried Kangaroo and crocodile meat. Kangaroo is tough and chewy and crocodile tastes insincere.

The trip has been hard on all of us in different ways but Mac the most. He told me watching me in the hospital with tubes coming out of me made him wonder if he was glimpsing the future. He and I work so hard to find the silver lining for every cramp, every aspiration, every fall and it’s a never ending task and somehow here, looking out at the glittering turquoise water it’s even harder for him. It's at those times that it hits me -I'm not faking it, I'm not researching a role, this isn't some elaborate plot from the bowels of my imagination. I'm sick, I'm getting worse and I don't want this thing.

But rather than dwell, I work on my AUssie accent, collect words (current faves: dodgy and fuckwit) and look out at the waves.

Tomorrow it’s off to Luna Park ( an old –style amusement park) and then Lisa and Mac will sample some Aussie Improv. More later.

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.