Friday, February 27, 2009

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.

Sunday, February 22, 2009

Shake A Tail Feather!

Your smile for the day. Watch the whole thing!

Friday, February 20, 2009

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.”


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.

Thursday, February 19, 2009

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?

Tuesday, February 10, 2009

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.


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.


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!

Friday, February 06, 2009


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