CSN Said: Teach Your Children Well

John John was recently sick – high fever, general malaïse.  You know.  Sick.  Of course, as soon as he was getting better, Koko came down with the same symptoms.  Unfortunately, I’d run out of those ear thermometer shields by then, so had to go pick some up from the pharmacy and took John John with me.

We walked in to the Walgreens and went straight to the cold and flu aisle in search of those shields.  They were, happily, easy to find and our shopping excursion was blissfully brief.  “Let’s go,” I said to John John, who was rubbernecking all around the medicinal displays.

One in particular had drawn his attention.  It was a little card jutting out from a cold product, calling you to come and buy it for congestion relief.  The poor cartoon woman on the ad looked miserable.  Red nose, watery eyes rolling back in her head, a tissue in hand, and corks up her nostrils.  I’ve felt just that way before.

“Why did she have corks in her nose, Mama?” the ever-inquisitive one asked.

We were walking toward the check out already, and there was a line at the counter.  A perfect chance to kill some time while simultaneously growing some empathetic reasoning and logic in the boy, my parental-self thought.

“Well,” I asked, “How would you feel if you had corks in your nose?”

He considered this with some seriousness and thought.

“Angry,” he finally replied.

Then, “Mama, why are you laughing?  What’s funny?”

Nothing, my dear.  Absolutely nothing.

CSN also said: Teach Your Parents Well.  Clearly that is happening.

Hole in the O

downtown SJ fountain

I want to write something that’s never been written before,
I want to write the hole in the O

My thinking is the inking,
My belief is the leaf

What’s The Matter With Me? Podcast

Study of the Artist as a Patient

What’s The Matter With Me? is a podcast I’ve been working on since April. It examines my life as a person with Multiple Sclerosis. I release a new episode about once a week and they’re posted on Whatsthematterwithme.org as well as Apple Podcasts and SoundCloud. Currently, I’m up to episode 27.

Podcast As Social Practice

I’m an artist, and I’ve taken that approach to What’s The Matter With Me? My artist statement reads, “I believe in using the transformative power of creativity to achieve social justice.” I think of it as self-portraiture.

In Our Own Voices

Disabled people are too often invisible, and spoken about in the voices of others. We are cared for, and sometimes pitied, and too often we don’t have the chance to speak up in our own voices and to determine our own destinies.

Growing Connections and Building Empathy

The What’s The Matter With Me? Podcast connects me to my family, friends, caregivers, the disabled community, and the community-at-large. I hope that thinking about my life as a disabled person and the experiences of others fosters empathy and develops my Disability Consciousness.

Family Dynamic

John John is still very much in the inquisitive “why” stage, and it seems like the questions often come at inopportune times for me, like when I’m trying to merge on a crowded freeway, or we are trying to finish getting dinner on the table.  But instead of setting a boundary to get some space, I often just give in to answering these questions – it’s like some part of me truly believes that if I answer, then the subject will be closed and the questions will stop.  Of course, they never do.

It drives John nuts, all the back and forth that happens with John John and me.  He can’t understand why I let myself get sucked in.  Frankly, neither do I.  Which brings me to this story.


Yesterday, John John uncovered this plate I’d gotten from a thrift store when he was littler and never found useful as an actual plate, and so relegated it to the toy area.  I also did not understand the plate, and something about that disturbed me and made me uncomfortable using it. For example, if the little one is the baby, then the Salt and Pepper shakers are the parents.  What was the baby condiment supposed to be? And, why was the partition at the left so small?  “The baby condiment is red, and the partitioned area is small.  Maybe it is supposed to be for ketchup and the baby is ketchup,” you might logically think.  Except that there are holes in the baby’s lid.  You may not be able to see it in this picture, but there they are.  Also, why would salt and pepper’s child be ketchup?  The lack of logic of this plate bothered me, and these thoughts would run through my head every time I saw the plate, and I was relieved to relegate it to the toy drawer.

But here it was, out, and John John asking to use it on the alternate days from when he wanted to use the other plate I got at the same time, from the same thrift store, that also bothers me (it appears to be a cute plate with the alphabet running around the edge, but upon closer inspection it had only ABCABCABCABCABC printed around the border, teaching nobody anything, and just looking like it says CAB CAB CAB at each and every glance…TOY DRAWER).

So, John John brought the dog plate out.  I was preparing dinner.  He began coming at me from all angles.  I’m deflecting, trying to get food done.  John is sitting at the counter, deftly ignoring us both and playing chess with someone online.

“What are those black and white containers, Mama?”

“Salt and Pepper”

“How do you know?”

“Because they are in shakers that we use for salt and pepper.  Also, salt is white.  Pepper is black.”

“What’s in that little one?”

“I don’t know.”

“Yes, you do!”

“No, I don’t.”

“YES, you do!”

“Maybe it’s, like, chili pepper flakes or something.”


“Because it’s red, and chili pepper flakes are red.”


“Yes, John John.”

“What’s a flake?”

I’m trying to think of how to describe the chili pepper that we’ve seen in shakers at pizza parlors, despite the fact that those shakers are always larger than the salt or pepper shaker; my mind’s a torrent as I also try to finish the salad dressing.  At this very moment, John (who I thought was ignoring our ricochet conversation altogether), piped up:

“It’s someone who says they’ll do something, but doesn’t.”

I just about plotzed.

Not For My Sister

John John loves his sister, but sometimes he needs to exclude her just to have something for himself.  Some space in an idea that he doesn’t have to share everything.

He often likes to engage in food related pretend play, where he is the server, John and I are the customers.  Some days he is selling ice cream, some days he is selling restaurant food.  Some of the time, he will tell me, “You and Papa can have this, but Koko can’t have any, okay?”

It cracks me up that he gets some satisfaction withholding pretend food from a girl who is not even around or interested when this type of activity is usually happening.

She is around, though, on occasion.  And then, he will have to make up a food that she can’t even pretend to eat.

The other day he was playing ice-cream shop.

“Mama, do you want ice cream?”

“Okay. What flavor is it?”

“It’s a grown up flavor, so Koko can’t have any.”

“What kind is it?”

“It has caff, caff…” he struggled to find the word for that thing we don’t let him drink.  We drink a lot of coffee and tea, and he knows it’s not for kids.

“Caff…caff… It has alcohol,” he finally came up with.

Yes, that is the other interdit for children in our house.

**on a side note, he was recently playing restaurant and asked me what I wanted to order.  I asked him for an ice cream sandwich, and he goes, “That’s disgusting!!” and I realized he had never had an ice cream sandwich, so took the words literally.  Ice cream sandwich, extra mustard, hold the mayo.  Yuk.

2016 Christmas Day at the Cement Boat

What a beautiful day to make our annual visit to the cement boat – though the boat is looking a bit worse for the wear…maybe much like the rest of us.  Still looks out on the gorgeous Pacific Ocean and wonderful California Coast line, though, so what’s there to be sour about!

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A Child’s Morning Time Wonderland

Saturday morning started out as usual – John John being peckish from the word Go. He ate a purple pluot while the remainder of breakfast was being made.

“Mama, this pluot is made from grapes,” he told me.

“Hmm,” I said, “Weird.”

John responded more appropriately, “You mean it’s a similar color to grapes.”

“Yeah,” said John John.

Then he watched me at the stove from a stool for awhile.  After a bit he said, “I don’t feel good, Mama,” in the most normal voice. He didn’t seem like he didn’t feel good, so I asked him, “Why do you think you don’t feel good?”

“It’s because I ate too many bugs!”

He wasn’t sick, by the way.  Moments after eating a hearty breakfast, he was dancing around like a crazy bird flapping to Mendelssohn.

Speaking of birds, on Sunday morning, also during the breakfast making ritual, he says to John,  “Papa, you know the one where the pigeon turns into a black pigeon at the end?”

“No,” said John, “Which one?”

“The one where the pigeon turns into a black pigeon at the end when the music stops.”

“I don’t have any idea what you are talking about,” John said.

“I don’t have any idea, too,” was John John’s reply.

I did, but I kept that to myself because of the cuteness.