# 183 Tuesday, July 4, 2006 - "IT'S A SMALL WORLD, AFTER ALL".
I love the "It's a small world" Disneyland ride.
For one thing, it is legitimately accessible for wheelchair folks. Too many
amusement rides are labeled accessible, but aren't. ("Oh, yes, completely
accessible, all you have to do is stand up, walk three or four steps,
pivot-turn and you're there!")
But Small World? In the midst of a bank of flowers, a smooth ramp leads to a
gentle canal. A river boat pulls up next to you, a gate opens, a smiling
someone secures the wheels of your loved one's chair, adds two safety
belts-- and the boat takes off.
"It's a small world after all."
Also it just plain makes me happy to see people from every nation getting
along, even if only for five minutes in a children's puppet ride.
Yesterday Gloria went back to the hospital again. Her chest "felt like an
elephant was sitting on it" and we thought maybe it was a mild heart attack,
or more pneumonia.
So she went through the usual tests (I hate it when they poke a needle into
the back of her hand to get blood) and found out that maybe it was something
simple, and easy to fix: the medication was not getting through.
A machine called a nebulizer blew medicine into her lungs instead of her
throat, and after twenty minutes she sat up and said she was bored.
A mere five hours later and we were just about good to go, another noisy
machine to take home. Some people have pets; we have nebulizers. Well, they
shed less.
All that remained was to pick up the new medications at the pharmacy. "There's
only a couple of people in line," the optimistic nurse assistant said, when
I groaned.
Hmm. I don't know which Niles pharmacy she was referring to which had the
short line.
Inside was a very short line-the dropoff line. That was nothing. Piece of
cake. Beside that was the village explainer. She told you what the
directions on the various bottles read, when you reached that state of
bliss, medications actually in your hand.
But first..To the right, a twenty-foot line to the far wall. Then, the line
stretched left across the much longer back wall of the pharmacy. Then left
again for another wall-
I took out my wait-in-line happy cards.
Everywhere I go, I bring my magic make-time-pass cards. If I am working on a
particularly troublesome issue, like why in Heaven's name the House
Republicans (allegedly) are making it a "Family Values Issue" to attack
Somatic Cell Nuclear Transfer, (SCNT, sometimes called therapeutic cloning)
I have a 3x5 card with key points written on it. Then I can study the points
(political suicide to abandon millions of suffering Americans just to please
a narrowing band of know-nothing fanatics; financially ridiculous to pass up
a chance to drastically lower health care costs; SCNT has nothing to do with
reproductive cloning, etc.) and the time goes by.
But today I had my handy-dandy Mandarin flash cards. On the Internet I
purchased this cool box of little cards "Chinese in a Flash" (Ha! Chinese is
many things, but learnable "in a flash" it is not!) so I always have about
five cards in my wallet. When the small talk runs out, I just reach for my
five cards and am not bored.
I think I mentioned I am studying Mandarin Chinese?
It is part of my secret backup plan.
I worry conservative leadership in my homeland will do something asinine--
like ban SCNT, or criminalize chimeric research, or moratorium-ize some
other vital ingredient of cure-but if they do, I have a back up plan.
If I can speak good enough Chinese, I could take Roman to China for an
eventual SCNT stem cell transplant. They do not have one yet, but they are
working it, and they do not have Senator Sam Brownback running for President
on an anti-science platform.
If Senator Brownback (R-KS) manages to pass his little bill making SCNT a
jail offense, Roman and I would both be eligible for ten year jail sentences
and million dollar fines on our return. That part of my secret backup plan
is not completely clear yet. Maybe we would have to live in China for a
while, or move to England where the government backs SCNT, or just hope
Senator Brownback's jails have good libraries-and how to pay a million
dollar fine? No idea. Kindly Senator Sam must move in very rich circles
indeed, if he can so casually suggest fining people a million bucks for
trying to heal their children. Maybe if I lived in subsidized housing (It is
my understanding that he and Senator Jim Talent of Missouri share a
rent-subsidized apartment in Washington, partially paid for by a
conservative religious group) I would not worry about money either.
But China is serious about embryonic stem cell research. How serious?
Last year, America's National Institutes of Health, the largest research
funding organization in the world-- spent $25 million on embryonic stem cell
research.
China, an economically disadvantaged country, spent ten times that much--
$250 million.
And the lady in line in front of me appeared to be Chinese.
Sometimes, when I say, "Excuse me, do you speak Mandarin?" I get an answer
like, "No, I am Japanese, Cantonese, Vietnamese, Thai". naturally one does
not wish to offend.
But this time, there was a cautious "yes?".
I pointed to the Chinese characters on the card, with the English
translation below it: asked her how to pronounce the words: "Ni buneng
shufei-quzhi"-which means "You cannot twist the meaning of it".
Some of the words had little squiggles above them, like notes in music.
Chinese has up and down "tones", so that the same word said on a different
note may have a completely different meaning. I had previously tried
Cantonese, which was a six-month disaster. Mandarin has four up-and-down
tones; Cantonese has nine. But, I figured, how important could that be? This
was during one of the plays we put on to raise funds for Christopher Reeve,
and one of the characters in our play (an 8th grade Chinese girl) was
correcting my Cantonese pronunciation. When I read from the text book aloud,
she covered her mouth, as close as she could come to laughing out loud. I
inquired, somewhat stuffily, for the reason for her hilarity. She said what
was I trying to say? I said, "Did you turn out the light?" Or so I thought.
But because of the tonal difficulties, what I actually said was, "Did you
eat the desk?" Sigh.
"Knee boo-nung suffhey-chewsuh", said the lady in the line, and when the
native speaker said the words, they came out so easy and natural, like a
little song.
I tried to duplicate her efforts. She lied politely, saying I spoke very
well-and then we started to talk (in English, fortunately) and the subject
somehow drifted to stem cells.
When I said "stem cells", she said, "I do not understand that words"-- but
fortunately I had just learned the Chinese for it, "Gan si bao"-and she
said, "Gan si bao? Oh, very good, Gan si bao, very important!"
Turns out she was a chemistry teacher in China, and now works as a
neurologist.
And then she told me about her husband-who has Parkinson's.
Would I mind talking to him? He was just outside, she would go and get him.
I held her place in the line, while she went into the next room.
She came back, said he was not interested.
We looked at each other.
"You talk to him anyway, I think?" she said.
He stood up with great dignity, a tall man.
He was vibrating slightly, tremors like Michael J. Fox.
We shook hands.
"I have only minor Parkinson's, of no consequence," he said.
I told him about Joan Samuelson, founder of Parkinson's Action Network, and
a member of the Independent Citizen's Oversight Committee, what a
magnificent advocate she was for cure of every disease and disability, and
that 29 members of the group shared the same opinion, that cure for one was
cure for all, and we should work together.
I forced my card on them, (it has the public address www.cirm.ca.gov website
so they could know about the meetings), babbled about this column, talked
about the formerly paralyzed rats which walked again, and the man in
Minnesota who made the natural cancer killer cells, you know, the usual.
We said goodbye, and I went running around the building (literally: I forgot
which parking lot a certain blue Volkswagen currently inhabited), before
Gloria called me on the cell phone and told me where to go.
Sigh. I get told where to go fairly frequently, nowadays.
But I remember thinking, as I shuffled past the jam-packed pharmacy for the
third time:
Every person in that room has a friend or family member with an incurable
disease.
Every man and woman in my city and my state has a loved one with a chronic
condition.
Everybody in the world knows someone who is suffering right now .
What if everybody in the world went out in the backyard, and shouted, "OUR
FAMILY COULD BENEFIT FROM EMBRYONIC STEM CELL RESEARCH!-all at once-- maybe
even the most tone-deaf politician could hear.
Remember, we have a Senate vote coming up for the Stem Cell Research
Enhancement Act. There should be no slightest doubt how the vote will go.
And speaking of which-
Where do your Senators stand on S 471?
It would be great to send a bill with 100 "Yes!" votes to the President,
total Senatorial agreement; a bill with that much support, it would not
matter if he imposed his first veto.
Also, do you know anyone who lives or works in any of the following states:
Georgia, New Mexico, Arkansas, Iowa, Indiana, Minnesota, Missouri, Virginia
or West Virginia?
If so, please email me!
Let's work together. Because, as the song says--
"It's a small world, after all."
By Don Reed www.stemcellbattles.com
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