I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts


the life of a bird

who does not love so much

that it hurts






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I wish I was fine

It’s like my brain

is doing a freakin’ crime....


From a rap by a child, age 11


Bicycling, Sweat, and Tears

I am pumping my bicycle pedals through the thick, exhausted air, feeling a line of sweat trickle down the side of my face. Lovely.I've pedaled hard down the hills, not letting myself fly at anything less than 20 mph. I've put on a good show for myself on the climbs. But the day is heading toward lunch hour, the heat rising around me.

There is a slight upgrade, ever so insidious. I know from experience that this upgrade will go on and on for a couple of miles or more.

"What goes up must come down," I hear in my mind. I always have a tune in my head. Not a playlist. Just one tune that keeps coming back like bad food. It could be Call Me Maybe (indigestion) or Penny Lane (there's a dance studio on one route with that name--too bad I don't recall all the words. Penny Lane doesn't make it far beyond my ears, eyes and those blue suburban skies.) Today, because of the hills, it's Spinning Wheel

If I look at the road just the right way, and make myself believe it, I can convince myself that I'm actually riding downhill instead of up. Less stress, to ride downhill. And if I'm going downhill, there's no reason to ride any slower than, let's say, 13 or 15 mph. So I give it everything I've got.

I finish the 24 miles at a good clip, my average speed higher than ever.  I'm strong and I know it.Twenty years ago, I rode to socialize. On Friday evenings, I'd do the quick Greenwich 20 mile ride, then drive to dinner with my fellow cyclists. I'd wake up early on a Saturday to do a longer, hillier ride with another group of friends, acquaintances and people I hadn't yet met. I'd ride once more on Sunday mornings. Sometimes I'd rollerblade in the afternoons as well. I had energy, youth and no children.

Cycling is like my life now. Not in a California-girl sense, but in a metaphorical sense. I'm strong. I can handle my son's illness. I can pedal uphills. I can handle the distress it gives my family. I don't like to sweat (cry,) in front of other people. I can make major medical decisions. I consult with the most knowledgeable doctors and warrior mothers. I can ride 50 miles. Yes, I'm tired, but I can do this. Even if it takes me pushing myself 20 mph up those hills, I will make sure that my son is better someday. I will keep him alive long enough to believe it. I will bicycle through Europe with my family someday. This is a commitment, not a daydream.

I don't have to look at the road, mapped in front of me, as one big uphill. Instead, I can play tricks in my mind and pretend some of it is downhill. Going to an appointment or a meeting, I get into character. All that theater in my 20s taught me how to divest myself of who I am, what I feel and how to become someone else. I'm not cheating. I'm not lying. I'm simply the person who writes this column, the warrior mom who is determined to spread awareness of these diseases for all the children suffering out there, the woman who can quickly hammer away a 24 mile bicycle ride or a slightly slower 42 miles ride. I'm not bragging, as my daughter is telling me to write. I'm telling you that if I can do this, so can anyone. 

Twenty years ago, this is how I became Tuptim: sitting backstage, each night, I'd imagine myself being carried into Siam on a litter, my lover/boyfriend secreted among the servants. I'd feel the warmth of the sun on the long journey, smell the scented oils, feel the soft silk robes. My 20th century persona lost, I'd shyly walk onto the stage wondering--would the King like me? Be fooled by me? Would I ever see Lun Tha again? Could I adapt to this new life? 

Now I practice, once again, getting into character. Cyclist. Teacher. Writer. Someone with a new meaning in life. I purposely forget that I cried behind my sunglasses this morning after my son raged, threw away his medicine and sobbed that he's just a little boy/he can't help himself/no one helps him. 

Don't ask me about myself and really mean it.

Don't ask me how my son is doing today.

Don't get specific on me. You don't want me "talkin' bout [my] troubles. (It's a cryin' sin.)"

Because I'll break character. And break into tears. But thank you for caring. I truly mean it.

I want the world to know that these diseases are out there. I want to spread the word and help somebody else; helping somebody gives our ordeal some much-needed meaning.  I want people to donate to research so that our scientists can finally discover a cure. I want you to care. 

But I also want to be able to live my day, to enjoy that bicycle ride, to savor feeling stronger than I've ever been, both physically and mentally. Maybe it took a horrible act of illness to discover this about myself, but I'm the person I once longed to be. 

And sometimes, I just want to race down those hills, feeling the soft air hug my knees, the sweat dry from my back. I just want to, "Drop all [my] troubles, by the river side, Ride a painted pony, Let the spinning wheel fly."

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