January 23, 2024 • 42 mins
This is an encore episode while I focus on my teaching.
This week's guest is Amy Cook.
I first came across Amy's work by reading Clipping In, a story that pleasantly ties together portions of her life that many of us can relate to and all of us will enjoy. It was here that I learned about Amy's condition, Central Muscular Hypotonia -- Think Cerebral Palsy
Next, Amy takes us along on her runs through the area where she lives in New York City. What makes the imagery of Spring Picture Roll, 2020 unique is that it is during the dark days of COVID. My favorite line and one that represents her vision so well is "The sky, peppered with Bob Ross clouds, is at its most outgoing cyan."
Finally, Amy reads The Shadow Child for us. It's the preamble that pulled me in: "This is a piece about my family's history in relation to the Holocaust and secrets that were kept from children." It's eye-opening, and it offers yet another layer to what we know about the Holocaust.
Care to read more of Amy's work? Visit her website and enjoy.
Note: Oftentimes, links are not available on platforms such as Apple, iHeart, etc.. They are available within this episode on our website at https://lifesaroadtrip.podbean.com
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Being disabled or having a chronic illness can feel like you're moving forward in reverse.
(00:21):
I'm your host Scott Martin.
Join me and my new friends in this underrepresented community as we talk about disrupting the
status quo and creating change within the world and within ourselves.
A life's a road trip.
Hop in.
Let's turn on some tunes and go.
(00:56):
With me in the passenger seat and managing the radio is Amy Cook.
Amy is a MFA candidate at Pacific Lutheran University's Rainier Writing Workshop.
Her work has been featured in a dozen literary journals, magazines and anthologies.
She is the legal administrative manager at Lambda Legal in New York City and holds a
BA in Political Science summa cum laude with distinction from Rider University.
(01:21):
Outside of her professional work, Amy is an award-winning lyricist and disabled spin
official Natto and Marathonna.
She is married to lyricist Patrick Cook.
Hi Amy.
Hey Scott, how are you?
I'm doing fine.
It's two degrees here in central Wisconsin.
So we're moving forward with that aspect.
I want to move past today as quickly as we can because it's supposed to get warmer tomorrow.
(01:45):
How's life in the Big Apple?
Because that's where you live, right?
Yes.
I live on the Upper West Side of Manhattan where I am pleased to tell you it is about
50 degrees outside.
We just passed the record yesterday for the most consecutive days without snow on record.
Wow.
It's totally strange.
It feels like spring.
(02:07):
Everybody's been out all weekend.
You see people on the street.
It's actually very, very nice.
Very cool.
Hey, tell us about Lambda Legal, will you please?
Sure.
So I've been with Lambda Legal for about 11 and a half years now.
And what it is is the nonprofit celebrating its 50th year this year.
We do impact litigation on behalf of lesbians, gay men, bisexual people, transgender people,
(02:31):
and people living with HIV.
And so what impact litigation is is we choose cases strategically that we think will benefit
the most people in the entire country.
So while there may be one plaintiff, the case will impact millions and millions of people.
We also do public policy and education work.
We have six offices.
(02:53):
And when we started, people who were receiving our help wouldn't even want to be associated
with the name Lambda Legal because they wouldn't want their families to know that they were
receiving our materials, things like that.
There was certainly no marriage for same-sex people.
None of the rights that are in place today were even existed in 1973.
(03:18):
1973 was before AIDS was even in this country.
In many of our early cases in the early 80s, centered on protecting people with AIDS before
AIDS had a name.
So we certainly have come a very long way in five decades.
But it's still very, very busy.
We have a help desk that staffs about 5,000 calls per year of people experiencing discrimination.
(03:44):
And so it's certainly very, very busy at work.
And it's a wonderful career.
I have to tell you, Amy, that when I first thought about asking you on as a guest, it
was after reading something in a magazine.
And then when I dug into more with what you do with Lambda, it was, heck yeah, I really
(04:05):
want this person on because we could get off on a tangent easily and talk about human rights.
And people are being screwed over.
But we'll reel it in.
And we'll just focus on some of your writing because I think that it's non-traditional,
your approach.
And what I'm talking about first is I came across in a Spoonie magazine, a piece called
(04:29):
Clipping In.
And I started reading it's broken up into pieces.
And I have to tell you the first couple of pages I had to pause and hang on, because
of it's so non-traditional.
But that's also what attracted me to it because it jumps a bit, but it's challenging.
And it's intriguing.
(04:50):
It's mind opening with what you're writing about.
And that's what I want to get into and have you on.
And also mentioned for the guests that on the Life's of Road Trip website is going to
be, of course, a link to Clipping In.
I believe it is from Spoonie Press.
So could you please read Prolog number one and then Prolog number two just to get the
audience intrigued?
(05:11):
Sure, absolutely.
Clipping In.
Prolog One 2021.
Monday, April 12, 2021 via email.
Hi.
I'm a former flywheel devotee, but I also have a disability that makes it hard to sometimes
clip in on my own.
If I have an issue doing this at Comeback Cycle, will I be able to get help slash direction
(05:35):
or is that against protocol?
I'm fully vaccinated.
Cleanie.
Prolog Two.
And then Prolog Two, yeah.
1992.
We get the best outcome.
My mother loves to say this phrase.
She would whisper it to me as we walked side by side down the pristine hallways of Children's
Hospital of Philadelphia.
Look at those other kids, she'd prod.
(05:57):
See how good you've got it?
I didn't use a wheelchair.
I didn't have cancer.
I did have a day off from school.
After my appointments, we'd stop for McDonald's on the way home.
I drag my piping hot chicken nuggets through that little packet of sun warm tummy, honey,
and pop them into my mouth.
My mother would turn on light FM and we'd pop our head side to side, feeling the oldies.
(06:20):
This was the best outcome.
Well, when I was reading that, bopping your heads, I can imagine that.
But here's where I want to fill in the listeners.
All right, so you live with a condition called central muscular hypotonia.
Folks should think cerebral palsy.
I'm going to get into some medical ease here just to give people a medical explanation
(06:42):
of what hypotonia is.
It can be defined as abnormally low muscular tone or reduced resistance to passive relatively
rapid movement.
The imprecision of the definition reflects the lack of psychometric properties and
reliability and assessments for hypotonia.
Therefore, only clinical definitions currently in use by neurological specialists would be
(07:05):
used in this pathway.
Other terms for hypotonia include but are not limited to central hypotonia, floppy baby
syndrome, benign congenital hypotonia and neonatal hypotonia.
Holy smackers.
Amy, could you simplify that for us, please?
Absolutely.
So, as is usually the case with something like this, my central muscular hypotonia is
(07:28):
a result of a birth injury and what it means practically.
And floppy baby syndrome is actually a pretty good explanation.
Yeah, we've heard that.
I have super low muscular tone in certain parts of my body.
I've had two surgeries behind my eyes.
The muscles behind my eyes don't work correctly.
(07:49):
And so as a result of that, I don't have any depth perception at all.
And the muscle tone behind my neck is super wonky as well, I would say.
Mostly manifests itself now.
If I don't get enough sleep, I'm just not able to hold my head up all day, which is super
fun.
(08:10):
I can tell you that.
When I was little, it manifested itself by, I was almost three when I started walking.
I never crawled at all.
My mom says I would roll places to get around.
I had neurologists tell me that I needed brain surgery or tell my parents that I needed brain
(08:33):
surgery, which I never had.
And the last time that I had eye surgery, the doctor said, you know, you should come back
every 15 years or whatever in the 90s.
That was sort of the prognosis that you needed to have this eye surgery every 15 years or
so.
I go back for checkups every year and have not needed to have it yet, which I'm very
(08:54):
grateful for.
But it does make me super clumsy.
I walk into walls, you know, I fall a lot and often.
But it is a minor inconvenience in comparison to people who are living with cerebral palsy
and other conditions.
But it definitely, you know, for the first 30 years of my life definitely affected the
(09:18):
way that I thought of myself as a physical being on Earth.
Interesting.
Thanks for putting that so eloquently in and just simplified.
Let's get back into clipping in.
Will you please read part one and part two?
Yep.
One.
Birth story 1980.
Here are things that I know about my birth.
(09:40):
Number one, I was 13 days late.
Number two, my parents were watching a cult TV show called Cell Block H when my mother
went into labor.
Number three, something went catastrophically wrong.
That's all.
I let the mysteries sit behind Oz's emerald curtain.
When did they know that something was a miss?
Were there a flood of clues or just a moment that tipped a skew?
(10:04):
Do the when and how matter when I will never know the why?
And what do you want to know this for?
My mother asks every time I inquire.
I slink away.
Part two, Wild Tales 1980.
Whenever I complained, couldn't do this, couldn't do that, got called the R word again,
my mother came to counter my grievances with tales of my turbulent first years on Earth.
(10:29):
Now, I wasn't sick and I talked a mile a minute, but I was disabled in a way that doctors found
particularly enticing for experimentation.
They felt it urgent to tell my young parents that they needed to treat me aggressively.
My parents were not so sure.
One of them wanted to do brain surgery, mom would brag.
They were going to put in a shunt.
(10:51):
They thought you were having seizures.
And this one she really enjoyed.
The neurologist said you would never walk normally and you wouldn't have regular use
of your hands.
Well, she'd sigh, you have the prettiest handwriting of anyone I know, much better than your brothers.
Then she'd dismiss me.
This was the best possible outcome.
So backing up to the beginning, the R word I believe is retard, correct?
(11:15):
Yes, you know, yes.
Yes, I mean, that hence is, oh, yes, those times.
And we know that some people don't actually grow up at all and still talk like that.
Sometimes you know, and sometimes a verb.
Yes, you bet.
So fill us in.
I'm not going to have you read any more about, you know, from your work.
(11:40):
But tell us more about the story, please.
So I had actually written this as a piece for the Rainier Writing Workshop.
And I was trying to explore, I'm a memoirist and an essayist, I was trying to explore the
different ways that physical activity came to me.
(12:02):
I as a child did not participate in sports.
I, you know, quit dance class after after one try at it.
If we ran the mile in, you know, in school, I was always the last person coming up.
I assumed for a very long time that I was not capable of physical activity.
And that was something that I had sort of made peace with.
(12:25):
And then over the years, you know, between dance, between running and then ultimately
spin cycling, I came to realize that not only was I not the worst person, I was pretty
good at a lot of these things.
I often needed an accommodation to, you know, to fit in with everybody.
(12:48):
But not only that, but I really enjoy doing physical activity.
You know, I sometimes work out seven days a week now.
You know, I run marathons.
I, you know, and next fall I'm doing this wild thing where I'm going to run a half marathon
and a marathon back to back on my feelings.
I enjoy challenging myself and just seeing if I can do it.
(13:12):
I think part of that is because I was told for so many years that I couldn't and it was
okay that I couldn't and I should, you know, just deal with it and because I'm good at
other things.
But I enjoy the community aspect of fitness.
When I go, I mean, I went to a spin class at 645 this morning and it was dark and our
spin class is on a rooftop overlooking the Upper East Side of Manhattan.
(13:37):
And it's just very peaceful and challenging.
And there's a community of people who don't see my disability or they say they don't see
my disability, which I guess is a part of friendship.
But you know, I, that same thing, you know, about the the R word, you know, I had gone
to a fitness class, which I put in the essay as well.
(14:00):
I'd gone to a fitness class about eight or nine years ago and I could not keep up.
And it was just very, very difficult.
And the coach looked at me and said, oh, what are you a retard?
And this was the coach.
And I was like, okay, you know, and I ended up complaining about it to the fitness studio.
(14:23):
And they did not under they didn't understand the issue.
You know, they were apologetic about it.
And they gave me some of my money back, but they did not understand, you know, the long
history of that word and what it does to someone to be called that as an adult.
And so sort of the impetus for this essay was that, you know, I had gone back and looked
(14:44):
at that email that I had sent to that fitness company.
And then I was reminded of an email that I had sent to the owners of comeback cycle.
Back cycle was started during the pandemic when the other fitness studios had closed
and they had found this rooftop where people could cycle outside.
(15:05):
And part of the attraction for me was not only was this outside and it was somewhere safe
and, you know, it was somewhere that I could get to because I don't drive right to somewhere
that I could walk to.
But it was a community aspect in a time where there was no community anywhere.
And so I emailed them and I said, you know, I have a very hard time clipping in.
(15:29):
I have, you know, when you if you're not familiar with a spin bike, you have to clip your shoes
in.
And if you have coordination issues, you have central muscular, it's super difficult.
And sometimes takes me, you know, a couple minutes, you know, four or five tries to get
it right.
And I was like, well, I should ask them because at my old studio, they would usually come
(15:53):
and help me.
But now with COVID, I don't know like what the situation is.
And you know, within like two minutes, you know, they email me back, they're like, please
just come.
And so it was, you know, very affirming.
And that's what I like about, you know, all of the fitness that I do is that I find spaces
that are affirming for all people, which we don't have enough of in the world at all.
(16:18):
Right.
Have you found this is getting me off tangent because I have a disability and I went from
being able-bodied top soccer player and stuff to all of a sudden missing four parts of my
body.
And how I viewed people viewing me, how, you know, because you've had this condition all
(16:41):
your life, but were there times when people had really just, you wanted to say, shut the
hell up and leave me alone?
Or have you always been calm about it and understanding their perspective?
The former, I would say.
Okay, good.
Especially in middle school, there were days where I just refused to go because the harassment
(17:05):
was so constant and just like nonstop.
You know, and as a queer person, that intersectional lens was sort of combined, you know, I would
get slurs about my disability and then I would get called dike in the next sentence.
Right?
And so it's just like nonstop sort of.
(17:26):
And you know, my parents would try to, you know, walk me through fighting back in terms
of like, well, just tell them they're, you know, they're this and they're that.
And I just either I didn't want to or I couldn't, I was not able to stand up for myself for
a very long time, for whatever reason.
But I was always super aware that I was different only because like you said, like it's the
(17:51):
gaze of other people that makes you aware that you're different.
Even if you know, they have to tell you.
That's the first time I've heard that from anybody else.
And it, damn, it fits.
Because I always felt myself, especially the first few years after, you know, all of a
sudden I've got no hands and stuff.
Always related.
(18:12):
I saw myself through other people's eyes and how they reacted and I was hypersensitive
to it.
Wow.
Okay.
That's another thing that we could do a whole show on.
I was, I was hoping actually in some of these shows to be able to touch on some stuff that
gets me thinking and we could start bopping.
I also want to mention one thing.
The other day, I, and it's the episode before this, Sean Butcher, he runs a magazine called
(18:38):
Oovee Nighted.
And we were talking about a thread that runs through a couple of people he've done.
He's interviewed his podcast.
One was a lady, young lady that was part of a wheelchair dance team.
And another was a guy, a former soldier that was missing a leg and he was walking up the
(19:00):
Pacific Crest Trail from the Southern Board of the United States to the Northern Board
of the United States up to Canada.
And I think it caught Sean a little bit by surprise.
We had to think about this, the thread.
Well, you've got it too.
As in kind of a screw you attitude because we feel that stuff from people and we want
to just say, yeah, screw you and flip them off.
(19:23):
But also just a toughness about, I'm going to do this anyway.
I don't care what anybody thinks.
I don't care.
Actually, part of it might be the most difficult.
I don't care what I think.
Yeah.
Because sometimes you know that can get in our own way.
So okay, let's turn off onto a country gravel road here a little bit and talk about one
(19:45):
of your other writings called spring picture roll 2020.
I first want to mention to folks, you get an idea from the title, but it made me think
of when I was reading it a lyric from a Green Day song and that lyric goes, the photograph
still fresh in your mind.
And I want folks go ahead and listen, Amy's going to read this and you're going to notice
(20:06):
some things that she's able to write in a way that will allow you to see these things
in your mind as she's talking.
So go ahead, Amy.
Would you please?
Great.
I take pictures when I run.
I am athlete and artist, sometimes both, often neither.
I dilly dally, interrupting my miles to photograph a bee or the way the leaves rust and crumble
(20:31):
in autumn storms.
I pause the watch that police's pace and distance take out my phone, point and shoot.
I collect images, yes, but also places and times and the way humidity lingered in the
air that morning, boiling off the pond, the singular glee of dew on a tulip and e-gret
in weight, a witness.
(20:52):
The first of the spring pictures is dated March 26, which is fully spring on the calendar,
but usually why is it still fucking freezing spring in New York?
In the photograph, I've captured a cluster of shy magnolias, not yet ready to greet the
world, the plum to white ombre of the petals, expecting against the pale sky.
(21:14):
All of the flowers, of course, are oblivious to the end of times.
There is a fundamental disconnect with this sort of existence.
March 28, Saturday.
This is a meaningful term at this point.
I am somehow out the door in two miles from home, out of quarter to seven.
The Eldorado apartment building looms over the park reservoir, keeping its watch over
the west side.
(21:35):
This was the land of Zabars, the planetarium, and you've got mail.
Today it's Cloverfield.
The sky, which up until this moment has only shown the slightest promise of sunrise, now
explodes in rose.
Can rose be a shade of purple?
That is what this color is, rose purple, and it spotters itself on the Eldorado and the
(21:56):
countless buildings where important people sleep.
Those of us on the running path freeze in unison.
We are all taking pictures, but now we are looking at each other as well.
Are you seeing this?
We are two weeks into a nightmare, and we are incredulous to find out that we are awake.
April 4, 7 PM.
When we complain about the time change in the fall, it is because of nights like this
(22:19):
year.
The sky, peppered with Bob Ross clouds, is at its most outgoing cyan.
The wind could probably be called brisk, but change is sweeping sway across the currents,
and you don't need a jacket for a short walk.
Come play the night beckons.
Today I did not run.
I am running every other day now, having arbitrarily decided that being a good friend
(22:42):
and a good citizen means sometimes working out in my living room, subjecting our downstairs
neighbors to the thump thump of Barry's boot case acrobatics, boot camp acrobatics.
I would buy an extra yoga mat to pad the noise, but everything is a million dollars.
The sun still rose today.
Tonight, my view is bisected by our window frame.
(23:04):
A column of light from the west falls on a building across the street.
What the photograph I take does not memorialize is the sound.
No video can correctly tell you what this was like.
At the same moment every night in the city, which has been muffled with fear for every
other minute of the day, erupts with joy.
April 16, 640 AM, and perched on Fort Clinton, a battle meant used in two world wars, chosen
(23:32):
because it overlooks the enemy.
If you look in one direction, you see the marshmallow white hospital tents where six
people have died now.
And if you turn your gaze to where I point, the Japanese cherry trees are in full bloom.
The palace peach, the angriest magenta, a shock of white.
The trees sit on a bed of grass that is miraculously manicured.
(23:55):
Who mows the park at a time like this?
April 24, just before noon.
Rain comes down hard on the lake.
The agret is no longer in wait.
She is restoring herself.
May 7, hays before dawn.
Someone is tied assigned to the reservoir fence.
The message is scrolled in marker on green construction paper, with a red heart jutting
(24:17):
out from its upper frame.
It reads, happy days will come again, take heart, hold fast.
In the distance you see the skyscrapers, less full than they were.
May 16, just before noon again.
A parks department officer sits on a magnificent dabbled horse.
The cop wears a mask and stares back at me.
(24:40):
We do not smile.
May 18, gone.
A northern cardinal hunts from a branch.
The bright red plume, I cannot look long enough.
The leaves are fully grown now, reaching every which way to get my attention.
We all exist together.
Memorial Day, 2020.
Four days from now, Governor Cuomo will announce that New York City is to enter Phase One
(25:04):
of reopening.
I am jogging on the bridal path mid-morning.
The Gothic bridge appears in the distance.
I often stop here for the weather-proof fountain.
The fridge of water tastes like another beginning.
Here too, there is a sign hung against the bridge's rail.
This one is spray-painted onto a rectangle of white cloth.
(25:26):
The black print is emphasized by lime green shadow.
Even after all of these photos, I have not slept in ten weeks and everyone is both blur
and pointillism.
I am still stunned by what is in front of us.
We are still alive.
That is what I am talking about.
It is just reading that and now hearing you speak it.
(25:48):
I picture everything.
One line that really stood out to me was the sky peppered with Bob Ross clouds is at its
most outgoing sign.
Wow.
It is just pointed.
I want to go to the next one to keep people on a roll.
On Amy's personal website are a bunch of these and there are links to it.
(26:15):
Of course, this is going to be on the Life's a Road Trip website.
I am going to Amy's personal site so folks can go there and do some of this reading on
their own because we cannot take the entire day.
I want you to do one more that really stood out to me.
That is called the Shadow Child.
But first I want to read the preamble to this.
(26:38):
This is a piece about every family's history in relation to the Holocaust and secrets that
were kept from children.
I want to ask you first of all, is this a true story?
It is a true story although I will tell you later.
One fact I have learned since writing this is a little.
I am looking forward to it.
Go ahead please.
This is the Shadow Child.
(27:00):
The form is in French and Hebrew, complicated by the fact that my cousin's handwriting is
disheveled.
My eye is drawn to the bottom of the sheet.
Beneath the questionnaire is a bit of poetry or prayer.
I will give them in my house and in my walls, a place and a name that will not perish.
We write obituaries for the people who give us life.
(27:22):
These are blistering monuments filled with the accomplishments of the dead, the framed
degrees and collections of a grandson's art, the first decades of Saturday night kenastic
club, the honeymoon in Bora Bora.
And we neglect to tack on the weights that make us whole, for fear that someone is reading
their morning paper will feel unkindly about the person that we grieve.
(27:47):
This document is not that.
It is issued by the commemorative Institute of Martyrs and Heroes, cousin Arthur, who
signs and dates his testimony in August of 1985, reports that his brother was born in
Poland in 1940, the first born of Lyba and Simon.
Other documents give birth to the boy in 1942, yet others 1944.
(28:13):
I prefer Arthur's as it grants his brother more time.
The paper wants to know the circumstances of the death.
It's a curious phrase, no.
It has no gender, no care, no caution.
And it is here that I am most frustrated, because there is little I can make out.
There's a word that looks like despair, and there's a word that means children.
(28:36):
It's a long sentence with many missteps.
Arthur writes an apology in this box that I think says I was born in Palestine.
What is most striking to me is the third box from the top, where the form asks for the
little boy's first name, and Arthur has left me with a question mark.
He did not know his murdered brother's name, but he was thoughtful enough not to leave
(28:58):
it blank.
The question was not forgotten, it is just unanswered.
Did he ever hear the name in passing, or were his parents unable to speak it?
Did he grow up alongside a ghost, or did he later come across a photograph of a son that
wasn't him?
It occurs to me that my cousin may have shared a face with this boy, and very little else.
(29:20):
They were before and after.
I ask too many questions, and I ache for the things he could not begin to know.
How deep do we harbor inlets and darting shadows, that the abhorrence of taunting pain means
we cannot complete our testimonies as they are meant to be preserved?
Simon and Lava are listed as survivors in Krakow in 1945, but they've never lived there
(29:44):
again.
Arthur has three sons.
He names them, Jonathan Nathaniel Stefan.
Wow.
I got to slip in and then you fill us in on the other stuff.
I used to teach social studies in history, and I substitute a lot now, and sometimes
(30:07):
it's in those classes.
Is it okay if I use this in if I happen to get into a class that's doing World War II?
Because when I was teaching, I always had this statement, my mission is not to teach
you, but to put you in a position to learn.
I think that sort of thing will impact kids so they learn, not just information in and
(30:29):
information out.
They learn what it's like that these were real people.
Right, absolutely.
I really thank you for that.
So listen to what you found since you had this printed.
Since I had that published, I have actually found his father's Holocaust testimony, and
(30:50):
he recorded in 1947, and I had to have it translated because I don't speak Polish.
To only to find out that the child who I have written about was a little girl.
So I spend this whole essay talking about the son and this child's brother and this little
girl, this was actually a little girl.
(31:15):
And so the implications for that are so interesting because she would not have looked anything
like her brother necessarily.
But to me, it changes the trajectory of my understanding of my family a little bit.
Fascinating.
When we come across that stuff, I've remembered doing ancestry.com and finding relatives from
(31:36):
Ireland that were farmers and moved over here in 1760 just before the revolution and went
all the way back in the 1400s.
So when you do things like that and that's becoming more popular, it's amazing what you
can stumble onto.
Yeah.
Got your family, but it also makes you feel more because we're modern day and we're not
(31:57):
in those situations.
My God.
What did these people go through?
I had also heard from my parents, oh, don't ask great grandma Pauline about the Holocaust
because she had lost her whole family.
And my mother had said, well, she had maybe a dozen siblings who died and this one who
(32:21):
had survived.
And it is very hard if you had family in the Holocaust to get those records.
But ancestry doesn't know what to make of them.
These websites just don't know what to make of them because people moved, right?
They changed their names.
It's very, very hard because you have these holes in your story that are not as easy to
(32:43):
fill in as some other people.
Yeah.
Got to do that.
I'll go back to another one of my experiences right after we took off our masks, you know,
when COVID was done in the schools and I was subbing and I would talk to kids about
when I wouldn't mention the Trump years, but we live through the Trump years and January
(33:06):
six and COVID, all of this stuff, their kids, if it's not in a textbook in a semester course,
it's going to be a good portion of future American history.
And looking back and I tell the kids, you know, none of my parents wanted to talk about
World War II and my brother didn't want to talk about Vietnam.
(33:29):
He was over there.
I told the kids that don't not talk about COVID and these times.
Yeah.
You have to be able to talk about it.
It's just my two cents to pass on to these kids that were only going to see me for that
day.
Well, I see them other times, but you know, in the same way that, you know, I feel strongly
about, you know, my nieces and nephews, most of them were not alive on 9 11, right?
(33:54):
And I explained to them like what that was like, you know, and it's different now, right?
Because you can see the live footage on YouTube, right?
You can see like the challenge or explosion even see that on YouTube.
But to try and explain to people what it was like then to get on the subway after 9 11,
(34:16):
how quiet it is.
And so a lot of what I do when I write is I try to like fill in those invisible details
that it's, you know, it's firsthand secondhand testimony in a way that YouTube is not going
to ever tell you about.
You know, that is your responsibility.
(34:38):
And that's great that you're, you do it.
I'm coming up on 65 and I have no problem talking to kids honestly about life and stuff.
And especially they know my story with everything.
But yeah, that is our responsibility.
And it used to be that it was the responsibility and people would listen to their elders and
things because, well, okay, you're not that old lady.
(35:01):
But I understand that responsibility, but you went through that stuff.
You have to.
But you have a means for doing you have a great means for doing it, by the way, love
the way you write.
Thank you.
All right.
We're going to shift gears and we're going to wrap up show with what I like to call the
road trip roundup.
Now I've done, you're the six guests and the other five guests, I would always start off
(35:22):
with what you're going to fast food.
Well, I'm changing that now because three of those people didn't even like to eat fast
food when they're on.
So I'm skipping it.
Here's the new opener.
When road tripping, do you tend to do fast food or local diners?
Because that's what the other people tend to do with the local stuff.
I would say a mix of both.
(35:47):
That's because I'm in New York City.
And so like we get on 95, like a rest stop is the best way to do it.
But like if we're somewhere else, if we're like, you know, driving through, you know,
upstate New York or something, we'll go to a diner.
Cool.
Sue and I need to start doing this because I told her that I need to change that opening
(36:10):
question.
And you know what, Doc, on it, we're on road trip even if we're driving from here to Milwaukee,
which is two and a half hours, we usually stop and grab something just to break up the
trip.
Maybe we should stay a little bit longer and find like stop an Oshkosh and do a local
diner.
So I'm learning from my guests.
Diners are more fun.
Yeah.
Most definitely.
(36:31):
Most of it.
I hear you.
Absolutely.
Question number two, dream car for a road trip could be something you've had or something
you want.
So I don't drive, so I know nothing about cars.
So if you're in a passenger seat, then, okay, what would be a cool one to be hanging out
in?
I mean, my husband, like, talks about like there's like 60s, Cadillac's kind of a boat.
(36:57):
Yes, yes.
You know, hopefully one that's like a poster and has seat belts.
But like any of those like, you know, like late 50s, 60s, classic cars would be great.
See, I'm thinking of a Pimp car though.
It's all pimped out and shade carpet on the inside.
Cattle like that.
No.
Just a big comfy cup car.
(37:20):
I was in an Uber a couple of weeks ago and it was like completely decked out.
Like there were like neon lights everywhere.
It was, it was great.
Like, you know, I don't know.
I like luxury.
So anything that like screams luxury.
Okay.
It's almost like the perception of luxury.
That's what I'm looking for by these questions.
Let's hear what the speaker really feels like.
(37:42):
Okay.
Here.
Now we're going to get a little tighter on this.
Now you are of age.
Last cassette or CD that played while you were on a road trip.
Oh, um, I would say like Nirvana Nevermind probably.
Okay.
Okay.
You know, I was one of those people.
I was in middle school and Nirvana was my jam.
(38:04):
So, okay.
Very good.
Love it.
All right.
Four.
I'm not a bash to ask this question.
I'm not going to change this question because it's so simple.
Cocor Pepsi.
Not all of my guests are that easy.
Oh, lemonade or something.
Cocor Pepsi.
It Coke zero.
Oh, you're another one.
I switched to it.
(38:25):
Sue and I were in Europe during October and they didn't have used to be a Diet Coke or
Coke light as they would like.
And then it was yeah, Coke zero.
I'm hooked on that now.
I just think it tastes better.
Yes.
It does.
It tastes there's a little bit more something to it.
Have you done there?
Cherry Coke zero.
Yes, which is also great.
(38:46):
Oh, yeah.
You don't like that.
I have a sugar headache all afternoon.
Exactly.
Yeah.
I'll catch you some.
All right.
So here we get this.
I love this question.
And the results so far have been fantastic when I asked this.
This is our closing question.
Favorite road trip memory?
Oh, that's a good question.
(39:07):
There we go.
Okay.
This is my husband's going to hate that I say this.
We were driving Thanksgiving weekend.
This was like, I don't even know, 10, 15 years ago.
We had his father's car.
And just like if people kept honking at us and we were like, oh, what is the deal here?
(39:30):
And it was clearly was something wrong with our car.
They're like, your car is leaking.
And we're like, oh, okay.
So we pull over to the side of the road and this is in like New Jersey and between exits
one and two, which is like no man's land basically.
And our, you know, our tailpipe was leaking fluid or something like that.
And we had to call like triple A wouldn't come get us because of the road that we were
(39:54):
on.
And so we had to call for a local help.
And these people show up and take us to like, and it was like 20 degrees outside maybe they
take us to this trailer park basically.
And they were like, it's going to take four or five hours to fix your car.
Just go sit in the trailer.
There's a TV.
(40:15):
I was like, okay.
And so the TV only played infomercials.
So it's sort of a weird road trip story because like it was the opposite.
No, that's the best one.
We were in Tom anywhere for a very long time.
And we just ended up watching infomercials on this television for hours.
(40:37):
And that, you know, finally, like my mom came and got us because we were just like someone
needs to get us out of here immediately.
But we talk about it all the time because it was, it was how often can you see the same
six commercials and not completely.
That's fantastic.
It was, it was absolutely wild and unforgettable.
(41:02):
It's going to take a lot for a guest to beat that one for a humorous story.
I mean, at the time, maybe it wasn't so funny, but you got me with infomercials and the trailer
because I pictured that too.
Okay.
Okay.
Thank you for the chuckle.
All right.
So I'm going to, we're going to wrap up after I hit stop.
I want to hang out with you for a couple of minutes.
(41:24):
Okay, dude.
All right.
Thanks.
So everybody, thank you very much.
Thanks for listening.
Check out previous episodes with new ones dropping each Tuesday.
If you don't see a synopsis of this show where you're listening, visit our website at Life's
A Road Trip dot pod bean dot com for more information on this week's guest.
(41:49):
This is your host Scott Martin reminding you that Life's A Road Trip.
(42:18):
Thank you very much.
All right.
See you next week.
Thank you.
Good night.
Bye.
Bye.
Bye.
Bye.
Thank you.
Bye.
Bye.
Bye bye.
Being disabled or having a chronic illness can feel like you're moving forward in reverse.
(00:21):
I'm your host Scott Martin.
Join me and my new friends in this underrepresented community as we talk about disrupting the
status quo and creating change within the world and within ourselves.
A life's a road trip.
Hop in.
Let's turn on some tunes and go.
(00:56):
With me in the passenger seat and managing the radio is Amy Cook.
Amy is a MFA candidate at Pacific Lutheran University's Rainier Writing Workshop.
Her work has been featured in a dozen literary journals, magazines and anthologies.
She is the legal administrative manager at Lambda Legal in New York City and holds a
BA in Political Science summa cum laude with distinction from Rider University.
(01:21):
Outside of her professional work, Amy is an award-winning lyricist and disabled spin
official Natto and Marathonna.
She is married to lyricist Patrick Cook.
Hi Amy.
Hey Scott, how are you?
I'm doing fine.
It's two degrees here in central Wisconsin.
So we're moving forward with that aspect.
I want to move past today as quickly as we can because it's supposed to get warmer tomorrow.
(01:45):
How's life in the Big Apple?
Because that's where you live, right?
Yes.
I live on the Upper West Side of Manhattan where I am pleased to tell you it is about
50 degrees outside.
We just passed the record yesterday for the most consecutive days without snow on record.
Wow.
It's totally strange.
It feels like spring.
(02:07):
Everybody's been out all weekend.
You see people on the street.
It's actually very, very nice.
Very cool.
Hey, tell us about Lambda Legal, will you please?
Sure.
So I've been with Lambda Legal for about 11 and a half years now.
And what it is is the nonprofit celebrating its 50th year this year.
We do impact litigation on behalf of lesbians, gay men, bisexual people, transgender people,
(02:31):
and people living with HIV.
And so what impact litigation is is we choose cases strategically that we think will benefit
the most people in the entire country.
So while there may be one plaintiff, the case will impact millions and millions of people.
We also do public policy and education work.
We have six offices.
(02:53):
And when we started, people who were receiving our help wouldn't even want to be associated
with the name Lambda Legal because they wouldn't want their families to know that they were
receiving our materials, things like that.
There was certainly no marriage for same-sex people.
None of the rights that are in place today were even existed in 1973.
(03:18):
1973 was before AIDS was even in this country.
In many of our early cases in the early 80s, centered on protecting people with AIDS before
AIDS had a name.
So we certainly have come a very long way in five decades.
But it's still very, very busy.
We have a help desk that staffs about 5,000 calls per year of people experiencing discrimination.
(03:44):
And so it's certainly very, very busy at work.
And it's a wonderful career.
I have to tell you, Amy, that when I first thought about asking you on as a guest, it
was after reading something in a magazine.
And then when I dug into more with what you do with Lambda, it was, heck yeah, I really
(04:05):
want this person on because we could get off on a tangent easily and talk about human rights.
And people are being screwed over.
But we'll reel it in.
And we'll just focus on some of your writing because I think that it's non-traditional,
your approach.
And what I'm talking about first is I came across in a Spoonie magazine, a piece called
(04:29):
Clipping In.
And I started reading it's broken up into pieces.
And I have to tell you the first couple of pages I had to pause and hang on, because
of it's so non-traditional.
But that's also what attracted me to it because it jumps a bit, but it's challenging.
And it's intriguing.
(04:50):
It's mind opening with what you're writing about.
And that's what I want to get into and have you on.
And also mentioned for the guests that on the Life's of Road Trip website is going to
be, of course, a link to Clipping In.
I believe it is from Spoonie Press.
So could you please read Prolog number one and then Prolog number two just to get the
audience intrigued?
(05:11):
Sure, absolutely.
Clipping In.
Prolog One 2021.
Monday, April 12, 2021 via email.
Hi.
I'm a former flywheel devotee, but I also have a disability that makes it hard to sometimes
clip in on my own.
If I have an issue doing this at Comeback Cycle, will I be able to get help slash direction
(05:35):
or is that against protocol?
I'm fully vaccinated.
Cleanie.
Prolog Two.
And then Prolog Two, yeah.
1992.
We get the best outcome.
My mother loves to say this phrase.
She would whisper it to me as we walked side by side down the pristine hallways of Children's
Hospital of Philadelphia.
Look at those other kids, she'd prod.
(05:57):
See how good you've got it?
I didn't use a wheelchair.
I didn't have cancer.
I did have a day off from school.
After my appointments, we'd stop for McDonald's on the way home.
I drag my piping hot chicken nuggets through that little packet of sun warm tummy, honey,
and pop them into my mouth.
My mother would turn on light FM and we'd pop our head side to side, feeling the oldies.
(06:20):
This was the best outcome.
Well, when I was reading that, bopping your heads, I can imagine that.
But here's where I want to fill in the listeners.
All right, so you live with a condition called central muscular hypotonia.
Folks should think cerebral palsy.
I'm going to get into some medical ease here just to give people a medical explanation
(06:42):
of what hypotonia is.
It can be defined as abnormally low muscular tone or reduced resistance to passive relatively
rapid movement.
The imprecision of the definition reflects the lack of psychometric properties and
reliability and assessments for hypotonia.
Therefore, only clinical definitions currently in use by neurological specialists would be
(07:05):
used in this pathway.
Other terms for hypotonia include but are not limited to central hypotonia, floppy baby
syndrome, benign congenital hypotonia and neonatal hypotonia.
Holy smackers.
Amy, could you simplify that for us, please?
Absolutely.
So, as is usually the case with something like this, my central muscular hypotonia is
(07:28):
a result of a birth injury and what it means practically.
And floppy baby syndrome is actually a pretty good explanation.
Yeah, we've heard that.
I have super low muscular tone in certain parts of my body.
I've had two surgeries behind my eyes.
The muscles behind my eyes don't work correctly.
(07:49):
And so as a result of that, I don't have any depth perception at all.
And the muscle tone behind my neck is super wonky as well, I would say.
Mostly manifests itself now.
If I don't get enough sleep, I'm just not able to hold my head up all day, which is super
fun.
(08:10):
I can tell you that.
When I was little, it manifested itself by, I was almost three when I started walking.
I never crawled at all.
My mom says I would roll places to get around.
I had neurologists tell me that I needed brain surgery or tell my parents that I needed brain
(08:33):
surgery, which I never had.
And the last time that I had eye surgery, the doctor said, you know, you should come back
every 15 years or whatever in the 90s.
That was sort of the prognosis that you needed to have this eye surgery every 15 years or
so.
I go back for checkups every year and have not needed to have it yet, which I'm very
(08:54):
grateful for.
But it does make me super clumsy.
I walk into walls, you know, I fall a lot and often.
But it is a minor inconvenience in comparison to people who are living with cerebral palsy
and other conditions.
But it definitely, you know, for the first 30 years of my life definitely affected the
(09:18):
way that I thought of myself as a physical being on Earth.
Interesting.
Thanks for putting that so eloquently in and just simplified.
Let's get back into clipping in.
Will you please read part one and part two?
Yep.
One.
Birth story 1980.
Here are things that I know about my birth.
(09:40):
Number one, I was 13 days late.
Number two, my parents were watching a cult TV show called Cell Block H when my mother
went into labor.
Number three, something went catastrophically wrong.
That's all.
I let the mysteries sit behind Oz's emerald curtain.
When did they know that something was a miss?
Were there a flood of clues or just a moment that tipped a skew?
(10:04):
Do the when and how matter when I will never know the why?
And what do you want to know this for?
My mother asks every time I inquire.
I slink away.
Part two, Wild Tales 1980.
Whenever I complained, couldn't do this, couldn't do that, got called the R word again,
my mother came to counter my grievances with tales of my turbulent first years on Earth.
(10:29):
Now, I wasn't sick and I talked a mile a minute, but I was disabled in a way that doctors found
particularly enticing for experimentation.
They felt it urgent to tell my young parents that they needed to treat me aggressively.
My parents were not so sure.
One of them wanted to do brain surgery, mom would brag.
They were going to put in a shunt.
(10:51):
They thought you were having seizures.
And this one she really enjoyed.
The neurologist said you would never walk normally and you wouldn't have regular use
of your hands.
Well, she'd sigh, you have the prettiest handwriting of anyone I know, much better than your brothers.
Then she'd dismiss me.
This was the best possible outcome.
So backing up to the beginning, the R word I believe is retard, correct?
(11:15):
Yes, you know, yes.
Yes, I mean, that hence is, oh, yes, those times.
And we know that some people don't actually grow up at all and still talk like that.
Sometimes you know, and sometimes a verb.
Yes, you bet.
So fill us in.
I'm not going to have you read any more about, you know, from your work.
(11:40):
But tell us more about the story, please.
So I had actually written this as a piece for the Rainier Writing Workshop.
And I was trying to explore, I'm a memoirist and an essayist, I was trying to explore the
different ways that physical activity came to me.
(12:02):
I as a child did not participate in sports.
I, you know, quit dance class after after one try at it.
If we ran the mile in, you know, in school, I was always the last person coming up.
I assumed for a very long time that I was not capable of physical activity.
And that was something that I had sort of made peace with.
(12:25):
And then over the years, you know, between dance, between running and then ultimately
spin cycling, I came to realize that not only was I not the worst person, I was pretty
good at a lot of these things.
I often needed an accommodation to, you know, to fit in with everybody.
(12:48):
But not only that, but I really enjoy doing physical activity.
You know, I sometimes work out seven days a week now.
You know, I run marathons.
I, you know, and next fall I'm doing this wild thing where I'm going to run a half marathon
and a marathon back to back on my feelings.
I enjoy challenging myself and just seeing if I can do it.
(13:12):
I think part of that is because I was told for so many years that I couldn't and it was
okay that I couldn't and I should, you know, just deal with it and because I'm good at
other things.
But I enjoy the community aspect of fitness.
When I go, I mean, I went to a spin class at 645 this morning and it was dark and our
spin class is on a rooftop overlooking the Upper East Side of Manhattan.
(13:37):
And it's just very peaceful and challenging.
And there's a community of people who don't see my disability or they say they don't see
my disability, which I guess is a part of friendship.
But you know, I, that same thing, you know, about the the R word, you know, I had gone
to a fitness class, which I put in the essay as well.
(14:00):
I'd gone to a fitness class about eight or nine years ago and I could not keep up.
And it was just very, very difficult.
And the coach looked at me and said, oh, what are you a retard?
And this was the coach.
And I was like, okay, you know, and I ended up complaining about it to the fitness studio.
(14:23):
And they did not under they didn't understand the issue.
You know, they were apologetic about it.
And they gave me some of my money back, but they did not understand, you know, the long
history of that word and what it does to someone to be called that as an adult.
And so sort of the impetus for this essay was that, you know, I had gone back and looked
(14:44):
at that email that I had sent to that fitness company.
And then I was reminded of an email that I had sent to the owners of comeback cycle.
Back cycle was started during the pandemic when the other fitness studios had closed
and they had found this rooftop where people could cycle outside.
(15:05):
And part of the attraction for me was not only was this outside and it was somewhere safe
and, you know, it was somewhere that I could get to because I don't drive right to somewhere
that I could walk to.
But it was a community aspect in a time where there was no community anywhere.
And so I emailed them and I said, you know, I have a very hard time clipping in.
(15:29):
I have, you know, when you if you're not familiar with a spin bike, you have to clip your shoes
in.
And if you have coordination issues, you have central muscular, it's super difficult.
And sometimes takes me, you know, a couple minutes, you know, four or five tries to get
it right.
And I was like, well, I should ask them because at my old studio, they would usually come
(15:53):
and help me.
But now with COVID, I don't know like what the situation is.
And you know, within like two minutes, you know, they email me back, they're like, please
just come.
And so it was, you know, very affirming.
And that's what I like about, you know, all of the fitness that I do is that I find spaces
that are affirming for all people, which we don't have enough of in the world at all.
(16:18):
Right.
Have you found this is getting me off tangent because I have a disability and I went from
being able-bodied top soccer player and stuff to all of a sudden missing four parts of my
body.
And how I viewed people viewing me, how, you know, because you've had this condition all
(16:41):
your life, but were there times when people had really just, you wanted to say, shut the
hell up and leave me alone?
Or have you always been calm about it and understanding their perspective?
The former, I would say.
Okay, good.
Especially in middle school, there were days where I just refused to go because the harassment
(17:05):
was so constant and just like nonstop.
You know, and as a queer person, that intersectional lens was sort of combined, you know, I would
get slurs about my disability and then I would get called dike in the next sentence.
Right?
And so it's just like nonstop sort of.
(17:26):
And you know, my parents would try to, you know, walk me through fighting back in terms
of like, well, just tell them they're, you know, they're this and they're that.
And I just either I didn't want to or I couldn't, I was not able to stand up for myself for
a very long time, for whatever reason.
But I was always super aware that I was different only because like you said, like it's the
(17:51):
gaze of other people that makes you aware that you're different.
Even if you know, they have to tell you.
That's the first time I've heard that from anybody else.
And it, damn, it fits.
Because I always felt myself, especially the first few years after, you know, all of a
sudden I've got no hands and stuff.
Always related.
(18:12):
I saw myself through other people's eyes and how they reacted and I was hypersensitive
to it.
Wow.
Okay.
That's another thing that we could do a whole show on.
I was, I was hoping actually in some of these shows to be able to touch on some stuff that
gets me thinking and we could start bopping.
I also want to mention one thing.
The other day, I, and it's the episode before this, Sean Butcher, he runs a magazine called
(18:38):
Oovee Nighted.
And we were talking about a thread that runs through a couple of people he've done.
He's interviewed his podcast.
One was a lady, young lady that was part of a wheelchair dance team.
And another was a guy, a former soldier that was missing a leg and he was walking up the
(19:00):
Pacific Crest Trail from the Southern Board of the United States to the Northern Board
of the United States up to Canada.
And I think it caught Sean a little bit by surprise.
We had to think about this, the thread.
Well, you've got it too.
As in kind of a screw you attitude because we feel that stuff from people and we want
to just say, yeah, screw you and flip them off.
(19:23):
But also just a toughness about, I'm going to do this anyway.
I don't care what anybody thinks.
I don't care.
Actually, part of it might be the most difficult.
I don't care what I think.
Yeah.
Because sometimes you know that can get in our own way.
So okay, let's turn off onto a country gravel road here a little bit and talk about one
(19:45):
of your other writings called spring picture roll 2020.
I first want to mention to folks, you get an idea from the title, but it made me think
of when I was reading it a lyric from a Green Day song and that lyric goes, the photograph
still fresh in your mind.
And I want folks go ahead and listen, Amy's going to read this and you're going to notice
(20:06):
some things that she's able to write in a way that will allow you to see these things
in your mind as she's talking.
So go ahead, Amy.
Would you please?
Great.
I take pictures when I run.
I am athlete and artist, sometimes both, often neither.
I dilly dally, interrupting my miles to photograph a bee or the way the leaves rust and crumble
(20:31):
in autumn storms.
I pause the watch that police's pace and distance take out my phone, point and shoot.
I collect images, yes, but also places and times and the way humidity lingered in the
air that morning, boiling off the pond, the singular glee of dew on a tulip and e-gret
in weight, a witness.
(20:52):
The first of the spring pictures is dated March 26, which is fully spring on the calendar,
but usually why is it still fucking freezing spring in New York?
In the photograph, I've captured a cluster of shy magnolias, not yet ready to greet the
world, the plum to white ombre of the petals, expecting against the pale sky.
(21:14):
All of the flowers, of course, are oblivious to the end of times.
There is a fundamental disconnect with this sort of existence.
March 28, Saturday.
This is a meaningful term at this point.
I am somehow out the door in two miles from home, out of quarter to seven.
The Eldorado apartment building looms over the park reservoir, keeping its watch over
the west side.
(21:35):
This was the land of Zabars, the planetarium, and you've got mail.
Today it's Cloverfield.
The sky, which up until this moment has only shown the slightest promise of sunrise, now
explodes in rose.
Can rose be a shade of purple?
That is what this color is, rose purple, and it spotters itself on the Eldorado and the
(21:56):
countless buildings where important people sleep.
Those of us on the running path freeze in unison.
We are all taking pictures, but now we are looking at each other as well.
Are you seeing this?
We are two weeks into a nightmare, and we are incredulous to find out that we are awake.
April 4, 7 PM.
When we complain about the time change in the fall, it is because of nights like this
(22:19):
year.
The sky, peppered with Bob Ross clouds, is at its most outgoing cyan.
The wind could probably be called brisk, but change is sweeping sway across the currents,
and you don't need a jacket for a short walk.
Come play the night beckons.
Today I did not run.
I am running every other day now, having arbitrarily decided that being a good friend
(22:42):
and a good citizen means sometimes working out in my living room, subjecting our downstairs
neighbors to the thump thump of Barry's boot case acrobatics, boot camp acrobatics.
I would buy an extra yoga mat to pad the noise, but everything is a million dollars.
The sun still rose today.
Tonight, my view is bisected by our window frame.
(23:04):
A column of light from the west falls on a building across the street.
What the photograph I take does not memorialize is the sound.
No video can correctly tell you what this was like.
At the same moment every night in the city, which has been muffled with fear for every
other minute of the day, erupts with joy.
April 16, 640 AM, and perched on Fort Clinton, a battle meant used in two world wars, chosen
(23:32):
because it overlooks the enemy.
If you look in one direction, you see the marshmallow white hospital tents where six
people have died now.
And if you turn your gaze to where I point, the Japanese cherry trees are in full bloom.
The palace peach, the angriest magenta, a shock of white.
The trees sit on a bed of grass that is miraculously manicured.
(23:55):
Who mows the park at a time like this?
April 24, just before noon.
Rain comes down hard on the lake.
The agret is no longer in wait.
She is restoring herself.
May 7, hays before dawn.
Someone is tied assigned to the reservoir fence.
The message is scrolled in marker on green construction paper, with a red heart jutting
(24:17):
out from its upper frame.
It reads, happy days will come again, take heart, hold fast.
In the distance you see the skyscrapers, less full than they were.
May 16, just before noon again.
A parks department officer sits on a magnificent dabbled horse.
The cop wears a mask and stares back at me.
(24:40):
We do not smile.
May 18, gone.
A northern cardinal hunts from a branch.
The bright red plume, I cannot look long enough.
The leaves are fully grown now, reaching every which way to get my attention.
We all exist together.
Memorial Day, 2020.
Four days from now, Governor Cuomo will announce that New York City is to enter Phase One
(25:04):
of reopening.
I am jogging on the bridal path mid-morning.
The Gothic bridge appears in the distance.
I often stop here for the weather-proof fountain.
The fridge of water tastes like another beginning.
Here too, there is a sign hung against the bridge's rail.
This one is spray-painted onto a rectangle of white cloth.
(25:26):
The black print is emphasized by lime green shadow.
Even after all of these photos, I have not slept in ten weeks and everyone is both blur
and pointillism.
I am still stunned by what is in front of us.
We are still alive.
That is what I am talking about.
It is just reading that and now hearing you speak it.
(25:48):
I picture everything.
One line that really stood out to me was the sky peppered with Bob Ross clouds is at its
most outgoing sign.
Wow.
It is just pointed.
I want to go to the next one to keep people on a roll.
On Amy's personal website are a bunch of these and there are links to it.
(26:15):
Of course, this is going to be on the Life's a Road Trip website.
I am going to Amy's personal site so folks can go there and do some of this reading on
their own because we cannot take the entire day.
I want you to do one more that really stood out to me.
That is called the Shadow Child.
But first I want to read the preamble to this.
(26:38):
This is a piece about every family's history in relation to the Holocaust and secrets that
were kept from children.
I want to ask you first of all, is this a true story?
It is a true story although I will tell you later.
One fact I have learned since writing this is a little.
I am looking forward to it.
Go ahead please.
This is the Shadow Child.
(27:00):
The form is in French and Hebrew, complicated by the fact that my cousin's handwriting is
disheveled.
My eye is drawn to the bottom of the sheet.
Beneath the questionnaire is a bit of poetry or prayer.
I will give them in my house and in my walls, a place and a name that will not perish.
We write obituaries for the people who give us life.
(27:22):
These are blistering monuments filled with the accomplishments of the dead, the framed
degrees and collections of a grandson's art, the first decades of Saturday night kenastic
club, the honeymoon in Bora Bora.
And we neglect to tack on the weights that make us whole, for fear that someone is reading
their morning paper will feel unkindly about the person that we grieve.
(27:47):
This document is not that.
It is issued by the commemorative Institute of Martyrs and Heroes, cousin Arthur, who
signs and dates his testimony in August of 1985, reports that his brother was born in
Poland in 1940, the first born of Lyba and Simon.
Other documents give birth to the boy in 1942, yet others 1944.
(28:13):
I prefer Arthur's as it grants his brother more time.
The paper wants to know the circumstances of the death.
It's a curious phrase, no.
It has no gender, no care, no caution.
And it is here that I am most frustrated, because there is little I can make out.
There's a word that looks like despair, and there's a word that means children.
(28:36):
It's a long sentence with many missteps.
Arthur writes an apology in this box that I think says I was born in Palestine.
What is most striking to me is the third box from the top, where the form asks for the
little boy's first name, and Arthur has left me with a question mark.
He did not know his murdered brother's name, but he was thoughtful enough not to leave
(28:58):
it blank.
The question was not forgotten, it is just unanswered.
Did he ever hear the name in passing, or were his parents unable to speak it?
Did he grow up alongside a ghost, or did he later come across a photograph of a son that
wasn't him?
It occurs to me that my cousin may have shared a face with this boy, and very little else.
(29:20):
They were before and after.
I ask too many questions, and I ache for the things he could not begin to know.
How deep do we harbor inlets and darting shadows, that the abhorrence of taunting pain means
we cannot complete our testimonies as they are meant to be preserved?
Simon and Lava are listed as survivors in Krakow in 1945, but they've never lived there
(29:44):
again.
Arthur has three sons.
He names them, Jonathan Nathaniel Stefan.
Wow.
I got to slip in and then you fill us in on the other stuff.
I used to teach social studies in history, and I substitute a lot now, and sometimes
(30:07):
it's in those classes.
Is it okay if I use this in if I happen to get into a class that's doing World War II?
Because when I was teaching, I always had this statement, my mission is not to teach
you, but to put you in a position to learn.
I think that sort of thing will impact kids so they learn, not just information in and
(30:29):
information out.
They learn what it's like that these were real people.
Right, absolutely.
I really thank you for that.
So listen to what you found since you had this printed.
Since I had that published, I have actually found his father's Holocaust testimony, and
(30:50):
he recorded in 1947, and I had to have it translated because I don't speak Polish.
To only to find out that the child who I have written about was a little girl.
So I spend this whole essay talking about the son and this child's brother and this little
girl, this was actually a little girl.
(31:15):
And so the implications for that are so interesting because she would not have looked anything
like her brother necessarily.
But to me, it changes the trajectory of my understanding of my family a little bit.
Fascinating.
When we come across that stuff, I've remembered doing ancestry.com and finding relatives from
(31:36):
Ireland that were farmers and moved over here in 1760 just before the revolution and went
all the way back in the 1400s.
So when you do things like that and that's becoming more popular, it's amazing what you
can stumble onto.
Yeah.
Got your family, but it also makes you feel more because we're modern day and we're not
(31:57):
in those situations.
My God.
What did these people go through?
I had also heard from my parents, oh, don't ask great grandma Pauline about the Holocaust
because she had lost her whole family.
And my mother had said, well, she had maybe a dozen siblings who died and this one who
(32:21):
had survived.
And it is very hard if you had family in the Holocaust to get those records.
But ancestry doesn't know what to make of them.
These websites just don't know what to make of them because people moved, right?
They changed their names.
It's very, very hard because you have these holes in your story that are not as easy to
(32:43):
fill in as some other people.
Yeah.
Got to do that.
I'll go back to another one of my experiences right after we took off our masks, you know,
when COVID was done in the schools and I was subbing and I would talk to kids about
when I wouldn't mention the Trump years, but we live through the Trump years and January
(33:06):
six and COVID, all of this stuff, their kids, if it's not in a textbook in a semester course,
it's going to be a good portion of future American history.
And looking back and I tell the kids, you know, none of my parents wanted to talk about
World War II and my brother didn't want to talk about Vietnam.
(33:29):
He was over there.
I told the kids that don't not talk about COVID and these times.
Yeah.
You have to be able to talk about it.
It's just my two cents to pass on to these kids that were only going to see me for that
day.
Well, I see them other times, but you know, in the same way that, you know, I feel strongly
about, you know, my nieces and nephews, most of them were not alive on 9 11, right?
(33:54):
And I explained to them like what that was like, you know, and it's different now, right?
Because you can see the live footage on YouTube, right?
You can see like the challenge or explosion even see that on YouTube.
But to try and explain to people what it was like then to get on the subway after 9 11,
(34:16):
how quiet it is.
And so a lot of what I do when I write is I try to like fill in those invisible details
that it's, you know, it's firsthand secondhand testimony in a way that YouTube is not going
to ever tell you about.
You know, that is your responsibility.
(34:38):
And that's great that you're, you do it.
I'm coming up on 65 and I have no problem talking to kids honestly about life and stuff.
And especially they know my story with everything.
But yeah, that is our responsibility.
And it used to be that it was the responsibility and people would listen to their elders and
things because, well, okay, you're not that old lady.
(35:01):
But I understand that responsibility, but you went through that stuff.
You have to.
But you have a means for doing you have a great means for doing it, by the way, love
the way you write.
Thank you.
All right.
We're going to shift gears and we're going to wrap up show with what I like to call the
road trip roundup.
Now I've done, you're the six guests and the other five guests, I would always start off
(35:22):
with what you're going to fast food.
Well, I'm changing that now because three of those people didn't even like to eat fast
food when they're on.
So I'm skipping it.
Here's the new opener.
When road tripping, do you tend to do fast food or local diners?
Because that's what the other people tend to do with the local stuff.
I would say a mix of both.
(35:47):
That's because I'm in New York City.
And so like we get on 95, like a rest stop is the best way to do it.
But like if we're somewhere else, if we're like, you know, driving through, you know,
upstate New York or something, we'll go to a diner.
Cool.
Sue and I need to start doing this because I told her that I need to change that opening
(36:10):
question.
And you know what, Doc, on it, we're on road trip even if we're driving from here to Milwaukee,
which is two and a half hours, we usually stop and grab something just to break up the
trip.
Maybe we should stay a little bit longer and find like stop an Oshkosh and do a local
diner.
So I'm learning from my guests.
Diners are more fun.
Yeah.
Most definitely.
(36:31):
Most of it.
I hear you.
Absolutely.
Question number two, dream car for a road trip could be something you've had or something
you want.
So I don't drive, so I know nothing about cars.
So if you're in a passenger seat, then, okay, what would be a cool one to be hanging out
in?
I mean, my husband, like, talks about like there's like 60s, Cadillac's kind of a boat.
(36:57):
Yes, yes.
You know, hopefully one that's like a poster and has seat belts.
But like any of those like, you know, like late 50s, 60s, classic cars would be great.
See, I'm thinking of a Pimp car though.
It's all pimped out and shade carpet on the inside.
Cattle like that.
No.
Just a big comfy cup car.
(37:20):
I was in an Uber a couple of weeks ago and it was like completely decked out.
Like there were like neon lights everywhere.
It was, it was great.
Like, you know, I don't know.
I like luxury.
So anything that like screams luxury.
Okay.
It's almost like the perception of luxury.
That's what I'm looking for by these questions.
Let's hear what the speaker really feels like.
(37:42):
Okay.
Here.
Now we're going to get a little tighter on this.
Now you are of age.
Last cassette or CD that played while you were on a road trip.
Oh, um, I would say like Nirvana Nevermind probably.
Okay.
Okay.
You know, I was one of those people.
I was in middle school and Nirvana was my jam.
(38:04):
So, okay.
Very good.
Love it.
All right.
Four.
I'm not a bash to ask this question.
I'm not going to change this question because it's so simple.
Cocor Pepsi.
Not all of my guests are that easy.
Oh, lemonade or something.
Cocor Pepsi.
It Coke zero.
Oh, you're another one.
I switched to it.
(38:25):
Sue and I were in Europe during October and they didn't have used to be a Diet Coke or
Coke light as they would like.
And then it was yeah, Coke zero.
I'm hooked on that now.
I just think it tastes better.
Yes.
It does.
It tastes there's a little bit more something to it.
Have you done there?
Cherry Coke zero.
Yes, which is also great.
(38:46):
Oh, yeah.
You don't like that.
I have a sugar headache all afternoon.
Exactly.
Yeah.
I'll catch you some.
All right.
So here we get this.
I love this question.
And the results so far have been fantastic when I asked this.
This is our closing question.
Favorite road trip memory?
Oh, that's a good question.
(39:07):
There we go.
Okay.
This is my husband's going to hate that I say this.
We were driving Thanksgiving weekend.
This was like, I don't even know, 10, 15 years ago.
We had his father's car.
And just like if people kept honking at us and we were like, oh, what is the deal here?
(39:30):
And it was clearly was something wrong with our car.
They're like, your car is leaking.
And we're like, oh, okay.
So we pull over to the side of the road and this is in like New Jersey and between exits
one and two, which is like no man's land basically.
And our, you know, our tailpipe was leaking fluid or something like that.
And we had to call like triple A wouldn't come get us because of the road that we were
(39:54):
on.
And so we had to call for a local help.
And these people show up and take us to like, and it was like 20 degrees outside maybe they
take us to this trailer park basically.
And they were like, it's going to take four or five hours to fix your car.
Just go sit in the trailer.
There's a TV.
(40:15):
I was like, okay.
And so the TV only played infomercials.
So it's sort of a weird road trip story because like it was the opposite.
No, that's the best one.
We were in Tom anywhere for a very long time.
And we just ended up watching infomercials on this television for hours.
(40:37):
And that, you know, finally, like my mom came and got us because we were just like someone
needs to get us out of here immediately.
But we talk about it all the time because it was, it was how often can you see the same
six commercials and not completely.
That's fantastic.
It was, it was absolutely wild and unforgettable.
(41:02):
It's going to take a lot for a guest to beat that one for a humorous story.
I mean, at the time, maybe it wasn't so funny, but you got me with infomercials and the trailer
because I pictured that too.
Okay.
Okay.
Thank you for the chuckle.
All right.
So I'm going to, we're going to wrap up after I hit stop.
I want to hang out with you for a couple of minutes.
(41:24):
Okay, dude.
All right.
Thanks.
So everybody, thank you very much.
Thanks for listening.
Check out previous episodes with new ones dropping each Tuesday.
If you don't see a synopsis of this show where you're listening, visit our website at Life's
A Road Trip dot pod bean dot com for more information on this week's guest.
(41:49):
This is your host Scott Martin reminding you that Life's A Road Trip.
(42:18):
Thank you very much.
All right.
See you next week.
Thank you.
Good night.
Bye.
Bye.
Bye.
Bye.
Thank you.
Bye.
Bye.
Bye bye.
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