For those of you who are faithful readers of this blog you know that almost from day one of my ALS diagnosis I have planned to go boogie boarding. The idea was that of all the things I want to do this one was going to slip out of my grasp sooner than all the others – hence the haste. So while I have many many great Mexico tales to tell, they must wait for future blogs since the question about boogie boarding hangs in the air and must be answered.
First some background. The first time I went boogie boarding was during the last century in Waikiki. I found myself compelled to paddle out to the giant surfer’s waves despite being a mediocre swimmer at best. They were huge, formidable in fact. Not Maverick level but daunting still. I caught the first wave and hung on for dear life as the water propelled me into near flight and threw me rather unceremoniously to the shore. I was hooked.
Now I hate the cold, so most of my water sports are reserved for unseasonably warm days or tropical vacations so there were large spells between each of my boogie board adventures. Still it remained one of my favorite things to do. I tried surfing but even the triumph of standing ( barely) on the board has nothing on the weightlessness and utter surrender of boogie boarding.
So let me set the scene: My board is outfitted with Velcro (thanks Christopher, Wendy and Ali!) and I wear a Velcro glove to hold my bad hand to the board. The weather is stunning, the waves high. It really does look like a movie set – South Pacific with Bloody Mary singing Bali H’ai or the opening credits of Hawaii 5-O. Each day subsequent to boogie board day, the water seems more and more stunning, more vividly turquoise. Was it that beautiful? Did I just not see?
Maclen helps me down the stairs to the beach and I use my cane to get down the slope of sand to the water’s edge. Downhill is tough for me. Now comes the tricky part. We’ve gone from movie musical with Mitzi Gaynor to “plucky underdog film.” Think Bad News Bears but in swimsuits. I need to stand (now without the cane) in the water to get out deep enough to paddle out. Mac is holding me steady but I keep falling over onto him. Or onto my astonishingly white ass. Once I’m deep enough, I don’t have the arm strength to get my arms on either side of the board and Velcro the hand because the waves are still crashing me this way and that. I end up under the board, to the side of the board, on my knees with the fucking board still velcroed to me – everywhere but belly on the board pointed in the right direction. The Velcro works very well but I realize we never figured out a solution for the legs. Duh! Mac is doing his best but it is very new to him to have his mom hurled at him at gale force.
After one particularly undignified attempt a woman comes up and tells me I’m doing this wrong and do I want some tips. I explain that I know what to do, I just can’t. She presses me and I have no choice but to tell her the whole truth to which she replies without skipping a beat “I’m so proud of you.” I admire and envy her. I think I would have been able to express admiration in that situation but not pride – it requires one to be married to the whole human struggle – to take pride in all of us – the whole mess.
Anyway she leaves us alone to tilt at our windmills and I try some more, joking with Mac ( for him or for me? I’m not sure) by doing my best Ben Stiller imitation “they must have ripped the Qs out of my dictionary cuz I don’t know the meaning of the word quit!” But at a certain point a realization washes over Mac and me like a wave: it’s already too late. It’s not going to happen. We have planned for months and flown to a small town in Mexico known for it’s waves so I can boogie board before I end up in a wheelchair and it’s not going to happen.
Here’s where the movie goes from Hollywood blockbuster to Canadian independent film. Without a word passing between us, Mac and I start to laugh. We laugh and laugh until our bellies ache and time stands still and it’s just the two of us, doing what we do best together and damn it, I’m happy. I really am. I’m happy because I’m laughing in warm water in the sun with my beautiful boy. When we come up for air I say “did I say boogie boarding? I meant cockfighting!” And that was that.
We staged a photo (Mission Accomplished?) for all of our loved ones who helped make the trip possible with me riding the surfer’s sloppy second wave at shoreline and then we went about our day. There were no tears – what would be the point? No 11th hour intervention in the form of a taught-bodied stud coming to my rescue– it’s not that kind of movie after all. Just another lesson – we are only guaranteed this one moment and nothing more.
As we are drifting off to sleep that night, Mac says to me: “I wouldn’t be surprised if I come back here on my own some day during Sayulita days.” I hope he does.
And yes – we did go to the cockfights. I’ll leave you in suspense about that little adventure.
Friday, February 29, 2008
Wednesday, February 20, 2008
Well, ain't that a kick in the pants.
I guess I’m no different from most people. I clutch onto tiny threads of encouragement, like a car salesman or a stalker or a Huckabee supporter might. I try not to admit that to myself because it hurts so much when you find out no one will buy the tru-coat or that Jodi Foster still doesn’t love you or that even John McCain seems more sane than your candidate or ...that you don’t have Lyme disease.
Yes, you guessed it. The results are in and I still have ALS. Bloody hell.
In 1991, I took 4 pregnancy tests before I believed I was pregnant. The Russian proprietor of the pharmacy did everything but hiss “whore!” every time I came in for yet another EPT package. She must have thought I was having a ball every night. I’m stubborn, I guess. I was sure there had been some error that made the stick keep getting pink. this time I knew the results of all the blood work (Lyme, Mercury poisoning, metal toxins, and AIDS – yes I was hoping for AIDS oddly enough) would be negative or I would have gotten a call…..Still I hoped.
On the positive side, I will start lithium in a couple of weeks so I will have a great shot at slowing this fucker down. I still have so much I want to do.
I may not be writing a blog for a few days as I’m off to Mexico for some boogie boarding and fun or as I put it on my message machine “ I’ve gone to a better place.” Nothing like some sun to return one to a sunnier disposition.
Yes, you guessed it. The results are in and I still have ALS. Bloody hell.
In 1991, I took 4 pregnancy tests before I believed I was pregnant. The Russian proprietor of the pharmacy did everything but hiss “whore!” every time I came in for yet another EPT package. She must have thought I was having a ball every night. I’m stubborn, I guess. I was sure there had been some error that made the stick keep getting pink. this time I knew the results of all the blood work (Lyme, Mercury poisoning, metal toxins, and AIDS – yes I was hoping for AIDS oddly enough) would be negative or I would have gotten a call…..Still I hoped.
On the positive side, I will start lithium in a couple of weeks so I will have a great shot at slowing this fucker down. I still have so much I want to do.
I may not be writing a blog for a few days as I’m off to Mexico for some boogie boarding and fun or as I put it on my message machine “ I’ve gone to a better place.” Nothing like some sun to return one to a sunnier disposition.
Monday, February 18, 2008
Barak Obama, Auntie Carla!
Some Random Thoughts
1) Favorite joke: Researchers are observing two children – an optimist and a pessimist. The pessimist is in a small room packed to the brim with the best toys money can buy but she sits in the middle of her riches crying because she can’t decide which one to play with. The optimist is in a room filled with horse shit and is gleefully flinging it around and about the room. The researchers ask the child why she’s throwing the shit around and she replies: “There’s got to be a pony in here somewhere!”
2) I called it. River is an exceptional album and I didn't need no Grammy award to know that. Hooray for Herbie Hancock.
3) Go see Walkin’ Talkin Bill Hawkins at the African American Cultural Center in SF. It’s a beautiful and moving show. For more info go to www.walkintalkin.com
4) Where the fuck is my pony?
5) My 3 year old niece supports Barak Obama.
6) This is not a useful demographic for him.
7) A lot (not all!) of my friends who are in relationships express discontent about said relationship (not your husband/wife gentle reader – just my other friends’) and a lot….okay almost all of my single friends express discontent about being single. So who’s happy? Rumi says: Longing is the core of mystery. Longing itself brings the cure. The only rule is, Suffer the pain.
8) Ummmm, Pony?
9) Twice this weekend I had people come out to support me – once for a gig I was singing on and once for a fundraiser organized by Allen Taylor and orchestrated by Kaila Flexer. It’s hard to know what to do with so much kindness. I’m ridiculously blessed to know so many fantastic people.
10) I hope I have more steam on future gigs. It’s hard to keep up the energy. Impossible to know if it’s cold related or ALS related, permanent or passing. I live inside a giant question mark.
11) You are my pony. You all know who you are.
1) Favorite joke: Researchers are observing two children – an optimist and a pessimist. The pessimist is in a small room packed to the brim with the best toys money can buy but she sits in the middle of her riches crying because she can’t decide which one to play with. The optimist is in a room filled with horse shit and is gleefully flinging it around and about the room. The researchers ask the child why she’s throwing the shit around and she replies: “There’s got to be a pony in here somewhere!”
2) I called it. River is an exceptional album and I didn't need no Grammy award to know that. Hooray for Herbie Hancock.
3) Go see Walkin’ Talkin Bill Hawkins at the African American Cultural Center in SF. It’s a beautiful and moving show. For more info go to www.walkintalkin.com
4) Where the fuck is my pony?
5) My 3 year old niece supports Barak Obama.
6) This is not a useful demographic for him.
7) A lot (not all!) of my friends who are in relationships express discontent about said relationship (not your husband/wife gentle reader – just my other friends’) and a lot….okay almost all of my single friends express discontent about being single. So who’s happy? Rumi says: Longing is the core of mystery. Longing itself brings the cure. The only rule is, Suffer the pain.
8) Ummmm, Pony?
9) Twice this weekend I had people come out to support me – once for a gig I was singing on and once for a fundraiser organized by Allen Taylor and orchestrated by Kaila Flexer. It’s hard to know what to do with so much kindness. I’m ridiculously blessed to know so many fantastic people.
10) I hope I have more steam on future gigs. It’s hard to keep up the energy. Impossible to know if it’s cold related or ALS related, permanent or passing. I live inside a giant question mark.
11) You are my pony. You all know who you are.
Sunday, February 10, 2008
A plug and a poem
First the plug:
This Friday I'm singing at Anna's Jazz Island at 2120 Allston way in Berkeley at 8pm. Please come! No pity party allowed, just some great musicians backing me while I sing some great songs. Should be lots of fun.
Now the poem, a beauty by Barbara Crooker
"All That Is Glorious Around Us" by Barbara Crooker
It is not, for me, these grand vistas, sublime peaks, mist-filled
overlooks, towering clouds, but doing errands on a day
of driving rain, staying dry inside the silver skin of the car,
160,000 miles, still running just fine. Or later,
sitting in a café warmed by the steam
from white chicken chili, two cups of dark coffee,
watching the red and gold leaves race down the street,
confetti from autumn's bright parade. And I think
of how my mother struggles to breathe, how few good days
she has now, how we never think about the glories
of breath, oxygen cascading down our throats to the lungs,
simple as the journey of water over a rock. It is the nature
of stone / to be satisfied / writes Mary Oliver, It is the nature
of water / to want to be somewhere else, rushing down
a rocky tor or high escarpment, the panoramic landscape
boundless behind it. But everything glorious is around
us already: black and blue graffiti shining in the rain's
bright glaze, the small rainbows of oil on the pavement,
where the last car to park has left its mark on the glistening
street, this radiant world.
This Friday I'm singing at Anna's Jazz Island at 2120 Allston way in Berkeley at 8pm. Please come! No pity party allowed, just some great musicians backing me while I sing some great songs. Should be lots of fun.
Now the poem, a beauty by Barbara Crooker
"All That Is Glorious Around Us" by Barbara Crooker
It is not, for me, these grand vistas, sublime peaks, mist-filled
overlooks, towering clouds, but doing errands on a day
of driving rain, staying dry inside the silver skin of the car,
160,000 miles, still running just fine. Or later,
sitting in a café warmed by the steam
from white chicken chili, two cups of dark coffee,
watching the red and gold leaves race down the street,
confetti from autumn's bright parade. And I think
of how my mother struggles to breathe, how few good days
she has now, how we never think about the glories
of breath, oxygen cascading down our throats to the lungs,
simple as the journey of water over a rock. It is the nature
of stone / to be satisfied / writes Mary Oliver, It is the nature
of water / to want to be somewhere else, rushing down
a rocky tor or high escarpment, the panoramic landscape
boundless behind it. But everything glorious is around
us already: black and blue graffiti shining in the rain's
bright glaze, the small rainbows of oil on the pavement,
where the last car to park has left its mark on the glistening
street, this radiant world.
Saturday, February 09, 2008
HOPE
There is a new clinical trial based on a double-blind study in Italy. Apparently lithium might significantly slow down the progression of ALS. In Italy, 16 test subjects took lithium and 22 controls took a placebo ( some of them along with their Rilutek – a drug I am taking now). 4 of the lithium patients were bulbar onset ( meaning the disease first presented in speech, swallowing or breathing which means shorter life expectancy) and 7 of the 22 controls were bulbar. All of the lithium-taking participants survived and stayed relatively stable over a period of 15 months, while there was definite decline in health in the control group, and 30% died (it’s not indicated how many of those who died were bulbar onset – that might be really important to know.)
Lithium was able to cause an increase in what are called Renshaw cells in the spinal cord thought to be involved in the disease process of ALS. Lithium also helps motor neurons get rid of “structures” within the neuron that cause damage and promotes a number of other processes that keeps motor neurons from dying.
The only drawback to the study is the small number of participants. That’s where I hope to come in. Clinical trials will begin all over the US in the next month or so and I’m an ideal candidate – limb onset as opposed to bulbar, young, in good shape before I got sick, etc etc.
The doctor I spoke to yesterday said they’re hoping to extend people’s lives long enough for stem cell research to provide a real cure My interpretation? This is not going to save your life, just lengthen it and keep you walking and independent longer. Fair enough. I'm in.
A little hope is enough. Meanwhile, outside the world has bigger fish to fry than my little drama. We are down to four in the presidential campaign - all minorities of a sort. Who would have thought it would come down to a choice between a woman, a black man and two mentally-challenged people. The world is changing faster than we can keep up. As Obama would say "Yes we can."
Lithium was able to cause an increase in what are called Renshaw cells in the spinal cord thought to be involved in the disease process of ALS. Lithium also helps motor neurons get rid of “structures” within the neuron that cause damage and promotes a number of other processes that keeps motor neurons from dying.
The only drawback to the study is the small number of participants. That’s where I hope to come in. Clinical trials will begin all over the US in the next month or so and I’m an ideal candidate – limb onset as opposed to bulbar, young, in good shape before I got sick, etc etc.
The doctor I spoke to yesterday said they’re hoping to extend people’s lives long enough for stem cell research to provide a real cure My interpretation? This is not going to save your life, just lengthen it and keep you walking and independent longer. Fair enough. I'm in.
A little hope is enough. Meanwhile, outside the world has bigger fish to fry than my little drama. We are down to four in the presidential campaign - all minorities of a sort. Who would have thought it would come down to a choice between a woman, a black man and two mentally-challenged people. The world is changing faster than we can keep up. As Obama would say "Yes we can."
Tuesday, February 05, 2008
I am turning into a walking cliche but hey, at least I'm walking.
Yesterday I dreamt that I could no longer move my arms or legs but instead I had grown wings like a fairy’s or a butterfly’s. They were mighty and strong and I controlled them from my back muscles. I flew up above everything and felt the air on my face and chest and it was transcendent.
Not once did I worry about what to do about my arms and legs once I landed. I was just riding on a current of wind, looking down, amazed at all the beauty.
Not once did I worry about what to do about my arms and legs once I landed. I was just riding on a current of wind, looking down, amazed at all the beauty.
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