Thursday, January 29, 2009

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.

Thursday, January 22, 2009

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.

Wednesday, January 21, 2009

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.


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 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).


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!)


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!)

Friday, January 16, 2009

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.

Sunday, January 11, 2009

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.

Thursday, January 08, 2009

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.

Wednesday, January 07, 2009

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.

Sunday, January 04, 2009

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.