February 13, 2024 • 56 mins
This is an encore episode while I focus on my teaching.
This week's guest is Deirdre Fagan
#loveforward is both a personal statement for the way Deirdre lives her life and a suggestion to the rest of us to do the same. Simple, isn't it?
Deirdre is the third author to appear on Life's a Road Trip, but she is the first poet as well. Listen to her read Most of the Days of the Week, or read it HERE. Pick up The Grief Eater or grab her husband, Bob's book, After Thunder, a courageous collection of poetry as he succumbed to ALS -- Lou Gehrig's Disease. Since this episode first aired, Deirdre's last book, Phantom Limbs, has been published.
Speaking of Bob's ordeal with ALS, you must purchase Find a Place for Me, Deirdre's raw and very personal account of Bob's dealings through his bout with the illness that he knew would eventually kill him. It is pointed and she doesn't shy away from the truth -- oftentimes with humor. It certainly had me holding my laughter as best I could during one of Deirdre's readings.
For those who are interested in learning more about the man, Lou Gehrig, read the story behind the movie, Pride of the Yankees. You'll have no problem finding it online to watch. You can watch Gehrig's famous farewell speech HERE.
This episode is perhaps a shift in the tone of the Life's a Road Trip podcast. Let's be real. Let's face life with a smile.
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 Deirdre Fagan.
Deirdre is the author of the living now awards winning memoir Find a Place for Me.
In it she shares the story of losing her husband to ALS, also known as Lou Gehrig's disease.
Deirdre is a 2022 Eric Hoffer Award category finalist and next generation indie book award
(01:17):
finalist for a collection of short stories known as the Grief Eater.
Poetry Chat book have love and a reference book titled Critical Companion to Robert Frost.
Her creative and academic work is available both in online and print literary journals,
magazines and anthologies.
Her poem Outside In was a finalist for the best of the net 2018.
(01:41):
Stepping up was nominated for a 2021 Pushcart Prize and Best of the Net award and Homesick
was nominated for a 2018 Pushcart Prize.
Deirdre regularly attends and presents a national and regional conferences as well as doing workshops,
presentations, book readings, signings.
Oh yeah, she's also associate professor at Ferris State University.
(02:04):
Hi Deirdre.
Hi Scott, thanks for having me on.
Of course, I first came across you on LinkedIn and then I started doing some research and
really came to be interested in everything that you were presenting and talking very honestly
about what you have dealt with.
But first thing I've got to mention is how's life in the mitten portion of Michigan?
(02:30):
It's currently warmer than it ought to be and earthworms are coming out and robins.
Really?
And so it's a little creepy because you know this could affect cherries this year.
Wow.
And some apples but we are expecting snowstorm in the next few days.
So everyone- I was going to ask you about that.
Yes.
If you were to go straight west cut through to the center of Wisconsin at say, Wisconsin
(02:53):
Dills and hang a right and drive up about an hour you'd be where I am and I was going
to ask you we had a little bit of snow today.
But Wednesday night, are you guys looking at?
We're looking at eight to ten.
Yeah, we're looking at well, I don't know quite that much.
They don't quite know but we're getting something starting Tuesday night I believe.
And then into Wednesday.
And we actually take the Luddington ferry over to Manitowoc.
(03:14):
Okay.
Yeah.
Yeah.
Okay, you've been over.
I have to tell you too that when I saw your last time as Fagan I immediately thought of
Donald Fagan from Steely Dan.
His body.
Then I realized his is F-A-G-E on in your today.
So I would have to say that you know, going back from the top of the show, if we were
on a real road trip I'd probably say, dear dear dear, pop in a Steely Dan CD.
(03:38):
Please.
Hey, just to give the listeners an alert.
This episode is meant to tear the band aid off the emotional side of disability.
There are no holes barred here.
There might be a couple of F-bombs or something.
But we just want to start with the show getting in and wrestling with the issues of the disabled
community.
(03:59):
So, again, no holes barred.
We want to get into having Deirdre read some of her work and have asked her to be here
today and share with us some of her.
Was it a short story?
Yes.
Most of the days of the week, correct?
Was it a short story?
Yes.
(04:20):
It's sort of the length of a flash fiction.
That's a new term these days.
Yeah.
So if you would, please.
Most of the days of the week.
On Monday, you make pancakes, pay the bills, clean the floor, wipe down the counters, and
begin chopping vegetables for soup.
(04:41):
As the knife slices the onion thin, you peel away its outer layer and consider committing
sapuku at noon.
On Tuesday, you start the crock pot, dust the blinds, rake the leaves, strip the beds,
and carry the laundry downstairs.
You put the wash on delicate, cold.
As you turn to go upstairs to the hum of the wash or balancing its own mind, you longingly
(05:02):
consider freshly washed, warmed, and crisp sheets tied gracefully around a rafter and
your neck.
Those beams appear strong.
Wednesday, after tucking the kids into bed and starting the dishwasher, you wash your
face, brush and flush your teeth, and line every pill bottle in the medicine cabinet
up on the bathroom counter before considering what they will find in the morning.
(05:25):
Then you carefully place the bottles back in the cupboard, turn out the lights, and climb
into bed yourself.
After checking the breaths of your children.
Thursday night you have a little bit too much to drink, some wine, several beers, rum, and
a hot cup of tea.
Then you remember something Nietzsche said about thoughts of suicide getting many through
a dark night.
(05:46):
This week you've made it three and a half days, but it isn't the weekend yet.
You aren't sure if Nietzsche's right, but you know you can't drink the antifreeze.
Friday you go out for groceries and consider high speed, a curve, a tree, or maybe that
bridge over there.
But you probably wouldn't even be successful, and then what a mess you'd make.
(06:07):
No one would be there to clean it up.
And the kids, who would make them breakfast?
Saturday you roll over to turn off the alarm, but there isn't one.
A blessing.
Shortly thereafter there are kids on top of you climbing over you, giggling, offering
to get you coffee, begging for eggs and bacon, and so you make your way to the kitchen.
(06:28):
When the grease in the bacon pan begins to sizzle, you don't imagine dousing yourself
in it or starting a grease fire.
Instead, you serve up breakfast and sip your coffee, admiring the life you have created,
the one still in the making.
See, that's the first thing I read about you.
So when I'm digging around for guests and I find someone that I'm interested in, I'll
(06:52):
Google up the person's name and then start digging around.
And that's the first reading that I came across.
And I have to tell you, I just grabbed me to, okay, what's the next thing I could find
on this person and see if there's enough information to really get in and talk about it.
That right there, Deirdre, is something we've got to talk about.
(07:15):
What inspired you?
What do you think led you to writing that?
So that one was actually written within the first few years after losing my husband Bob
to ALS.
And so our kids were nine and four when he died, eight and three when he was diagnosed.
(07:36):
And we lost him within 10 months from diagnosis.
And so I was thrust into the grief without him, as well as a single mom.
And I was the sole breadwinner and I had so much on my plate.
And there were those days that it just seemed impossible to go on.
(08:00):
And what do we focus on to help us keep going?
What is it that we can, I think the quote about Nietzsche always comes back to me.
I love the irony and humor in, thoughts of suicide got many through a dark night.
They make it through the night, but they still think about it.
And I think there's honesty in that.
I think many, many people think I can't go on.
(08:22):
How will I go on?
Right?
There's the Beckett line.
I can't go on.
I'll go on.
And you know, we just hope that we make it through that dark night because nothing, I
think what I've learned more than anything is that everything changes.
Everything is always changing.
(08:43):
And if we could just hang on through the next change, there is hope and possibility in that.
But when we're in our darkest moments, we think we will always be in them.
And you know, we know that happiness and pure joy is fleeting, but we, in dark moments,
we forget that they are possibly fleeting too.
(09:04):
They often are as fleeting.
Because when we're in those dark moments, it's so deep that that's where it is.
But on the flip side, of course, you know, we're in our happy times too.
That seems like there's, you know, no top to it.
And it's just enduring.
So again, that's the first thing I read from you.
And then I went on to find some other things.
(09:25):
And then the next item I found was a series of short stories that you wrote titled The
Grief Eater.
And I'll read one reviewer wrote.
There is so much you admire in these deeply human tales confronting grief, death, loneliness,
and despair.
Each compelling and complex character reveals an unexpected grace, reveals comfort where
(09:47):
one would never expect to find it.
And this gives a reader the courage to face the worst.
Whether you're grieving or celebrating the beauty of this life, these stories will speak
to you.
Again, dear Joy, that's the second thing I read about you and I had to dig into it more.
And right there, I was set out.
I'm going to reach out to this person and see if they come on the show.
(10:08):
But now that we're talking about it, we have communicated a little bit by email.
We've been able to share some stuff, but it's important for us to share a lot of emotional
stuff for the show.
And that's what I'm trying to do with taking lives of road trip in a little bit new direction
on, again, ripping the bandaid off.
Let's talk about what the emotions are.
What was your inspiration for The Grief Eater?
(10:32):
So I think I will begin to answer that question.
I just want to say at the beginning that just like the last poem, the collection as revealed
through that review tends to most often end on a hopeful note.
And so one of the, I think, what has emerged as one of my signature marks is that I go
(10:54):
deep, I rip the bandaid off, I reveal a lot, and I share a lot of emotions, whether it's
fiction or nonfiction.
But I think the signature mark as I frequently return to hope at the end of a poem, at the
end of a story.
And The Grief Eater is, and I think that's how I live.
So it's reflected in my writing.
(11:16):
I've experienced a lot of loss and suffering and challenges.
And what's kept me going is the belief that there's hope and possibility if you can write
out those storms.
But as I mentioned, when I'm in the storms and when I'm in my next storm, I will have
to remind myself of what I'm saying right now.
(11:38):
I've been saying that too.
I happen to be momentarily in the respite.
And so during the respite, I'm sharing what I've learned when I was going through storms.
And I too will be in a storm again.
I feel like this is what life is.
I have a good friend who said to me a few years ago, I said, I'm on a hill, but there'll
(12:03):
be more valleys.
I said, life is hills and valleys.
And she said, yeah, why did we ever think it was anything but?
And I think there's something to that where it's sort of taught in our society that life
should be or is or ought to be all hills.
But that's not a realistic view of what life is.
You live long enough.
There's a lot of valleys.
So in the Grief feeder, the Grief feeder was born.
(12:27):
He asked for my inspiration.
It was actually when I turned to creative writing.
You mentioned in my bio that I wrote a reference book to Robert Frost.
My training and background as an academic is in literary scholarship.
And my dissertation was Frost Dickinson and Hardy.
And I spent the first decade as a professor producing more literary analysis criticism
(12:50):
scholarship.
And then that book actually came out in 2007.
And none of my family members were alive.
My birth family members, both of my parents and both of my brothers.
I lost by the time I was 36.
And my father and my remaining brother died two weeks apart in 2006.
(13:14):
So I actually rushed to the publisher to please put a little note.
All they could do at that point was put it on the copyright page mentioning my family
members.
So when I was holding it in my hands, nobody was there to see it.
And I felt very lonely because I had no, my siblings had not married or had children.
(13:35):
My parents were gone.
I had never had grandparents on one side.
And on the other side, they were gone and I hadn't been close to them to begin with.
I was really kind of lone.
And I felt isolated as a griever.
There were no resources for the position I found myself in.
You often hear adult children say, I'm orphaned, you know, even when they lose their parents
(13:58):
and they are themselves 65 or something like that.
So I had that feeling of I have no parents, but I also had, I have no siblings.
I have none of these people to share my memories or to be there for my children.
And so I started to turn towards creative writing to express the emotions that I was
(14:19):
feeling.
And at that time I expressed them through fiction.
And so the grief here is an assembly of characters who are all coping with different types of
grief, different losses.
And in different ways, most of them what your average person might consider peculiar, usually
in socially unacceptable ways.
(14:40):
So they act in, I think, what are very honest and true emotional ways, but not socially
acceptable ways.
And so they go, we follow them on these various journeys.
For example, I have a man who grieving his wife just starts dialing random numbers,
(15:02):
seeing if he can make a connection with someone.
That's interesting.
I have another character who starts attending funerals of people she does not know, because
she's seeking a community of grievers, but she doesn't really know why.
We start to realize that's what she's doing, that she feels isolated and she wants to be
around other people who are grieving, but she doesn't know.
(15:25):
We don't know as we enter the story as readers, but you start to see this.
So that was, my impetus was to express some of my own grief through creative writing.
I was going to say, it sounds like I wonder how much of this was truly therapeutic and
just allowed you on what was maybe inside of you morphing into something and that's how
(15:50):
it came out.
Yeah, I always wonder how much writing is or is not, because you still have to come
back to the emotions you're feeling, but I do think it helped me to express them for
sure.
It helped me to express these emotions.
And I went to a lot of self-help books looking for insight, something that would help me.
And I found none that really spoke to where I was.
(16:14):
It was either giving me information I already knew because I'd already lost a parent and
brother and other people before I lost my father and brother, or it just wasn't speaking
to me.
So I found myself going to poems I'd read earlier, stories I'd read earlier.
And I think a lot of people go to creative writing as well as nonfiction self-help to
(16:38):
feel a kind of kinship.
So I love conversations like this when we're doing the shows, it makes my mind drift off
of my notes.
Most of the days of the week, that was written before Find a Place for Me, correct?
Yes.
The Grief Eater was written before Find a Place for Me, correct?
(17:01):
Before most of the days of the week and Find a Place for Me.
Yes.
Yeah, the Grief Eater, while it came out in 2020 as a collection, many of the stories
were born in the late 2000s and early 2000s.
And that was also when it was segwaying into poetry.
And I wrote more poetry after I lost Bob in 2012.
(17:23):
And I didn't start to find a place for me until 2018 seriously.
I had written some bits before, but seriously in 2018.
It's curious to me that it seemed that there were steps involved in the evolution of you
giving to the point of writing Find a Place for Me because I have a feeling that's where
(17:47):
you really, again, ripped the band-aid.
Hey, folks, this is probably a place where people are listening this in the evening
or what the heck, even if it's midday.
Maybe we should, dear, what do you have in there?
Is that water?
I was thinking about grabbing a glass of wine because I think it were to that point where
I think we could just really get off on tangents and really discuss some of this stuff.
(18:08):
I think it's really good because I'm learning something about you and maybe about your psyche
and how humans work and how this stuff really, it was stepping stones, it seems to me, leading
up to you writing Find a Place for Me.
And there is something you're working on now.
We'll get to that later.
But that's what I wanted to just seems like everything is fitting in the place where you
(18:31):
and how you're writing is evolving or how it's maybe not evolving is the right term,
but how it's stretching your boundaries even further.
I think that's very insightful.
I mean, I started out, you know, I wasn't trained as a creative writer.
I was trained as a literary scholar.
Of course, I read like crazy.
But I started out in fiction more than poetry and fiction is a safe place, right?
(18:57):
I mean, people.
Yeah, yeah.
And you can make them do anything.
So I could just do crazy things.
You know, I'm often in situations where you think right now, wouldn't it be great if I
did X, but I won't do X because it's totally unacceptable, right?
But I could just do crazy stuff.
Well, and then when I segued into poetry, poetry for me is a combination of fiction
(19:19):
and nonfiction.
It always starts with some emotion or a scene that is true, but I get to manipulate it in
fictional ways because it's poetry.
So I would say you get more of the personal from me, more of my nonfiction self in my
poetry.
I respect that.
But when I tell people, please don't read this as, you know, autobiography or memoir
(19:44):
because because I manipulate it.
So sometimes it's really not me by the end of the poem.
It doesn't mean that it doesn't start with something authentic.
And then obviously moving into memoir as a whole, you know, you're saying this is true.
This is how I recall it.
And so absolutely I had to get comfortable with that.
And I was also going through, you know, I went through those losses of my family members
(20:07):
five years after I lost my father and brother, Bob was diagnosed.
So I was, you know, when I was calling my friends to first tell them about the diagnosis, they
were saying of all the people and all the world that this could happen to.
I cannot believe it's happening to you.
You've been through enough.
Oh, because you've been through enough.
(20:29):
Okay.
Because I'd been through enough.
They said, look, you've already lost your whole family.
You're going to lose your husband now too.
I mean, people were and I said, yeah, I don't want this to happen to anybody or anybody's
husband.
But why is it happening to mine?
I mean, I paid my dues in the last department for, you know, early 40s.
I've done it.
I don't need more right now.
(20:51):
But it really, you know, it was happening to Bob.
It was happening to both of us.
And I obviously couldn't write much at all while he was ill.
I did start to find a place for me, just a little bit of the prologue that I hope to
share during the show while he was alive.
But I really couldn't write while I was taking care of him or in the early, like the first
(21:15):
year or so after I lost him.
I just, I can't write when I'm in the thick of it.
You know, I started the stories a couple of years after my family died.
I need to be at a place where I can reflect.
That's a distance.
Okay.
All right.
Let's start going in that direction.
But first, I want us to take about a three second pause here because there might be a
(21:36):
place for someone to drop an ad.
So we're going to do that right now.
Okay.
All right.
Now let's get into your latest work that's out there.
Find a place for me.
Just to mention the people, all of this stuff is going to be linked up.
Go on the Life's of Road Trip website and there are going to be links to a lot of different
things.
(21:57):
You know, Deirdre is going to be getting into her book, but she's talking about Luke Eric's
disease and that might bring some of the people of my age.
I'm going to actually put a link on there for if I can find part of the Yankees with
Gary Cooper, the story about Luke Eric and I know I can find and I'll put on their Gary's
(22:20):
farewell speech that is all linked to this because it started the disease.
You know, the in the median, we all came to know it as Luke Eric's disease from Luke Eric.
So people can learn about that.
Deirdre, I'm going to just hand it off to you and you roll with what we've talked about
on again, folks, no holds part.
(22:41):
This show was going to start going in a direction where people can be, damn it, let's just talk
and not be afraid to say things and share things.
So Deirdre, it's all yours, kid.
Okay.
So I'm going to read the prologue.
And as I mentioned, this is the only portion of the book that I would say was really written
(23:05):
while Bob was right next to me.
He was actually inspired to write a book of poetry after he was diagnosed and he self-published
it before he died.
And so he spent his last month's focused on writing, writing letters for the kids and
notes and writing his book of poetry.
So let me interrupt you for a second here.
(23:26):
That's published.
Yeah, it's published on, you can find it on Amazon.
Once you get me the link and then I'll put it on, I mean, this is going to be included
in the show.
I don't care.
We're just talking here, folks.
It's for all the listeners.
But between the two of us, let's get it to me.
And then when I post, it'll be on the Life's Rocha website for your stuff.
(23:47):
So anyway, find a place for me.
So the prologue is titled Six Months Into the Diagnosis.
If you think you aren't going to be smoking when I die, Bob's words trailed off.
I immediately thought smoking as in being reduced to a pile of ash.
A pile of cremated remains he would be and I most certainly would be smoking, both literally
(24:12):
and figuratively as I burned down.
I was already burning down like a lit cigarette.
When he did die, I knew I would be sending up smoke signals, hoping someone would see
them and somehow rescue me.
I didn't know how I could ever survive this, this thing that was happening to us, happening
to Bob.
Six months into Bob's diagnosis, I broke down and bought a pack of American spirit cigarettes.
(24:36):
At least they're not filled with all those additives.
I convinced myself.
They can't be that bad, right?
Two weeks into smoking cigarettes only at night after the kids had gone to bed.
One of my many crises made me say aloud to myself, I deserve a fucking cigarette when
I want one and start smoking in front of the kids.
I was still only smoking three to four a day, but sometime mid-afternoon I'd walk out onto
(24:57):
our queen and porch in the sweltering summer heat, usually with an iced coffee also in
hand and light one up.
The first time my son Liam saw me, he just stared at me.
Age nine, he was more enthralled than disgusted.
I looked at him and said, what?
He just stared blankly at me, shrugged his shoulders and said, I've just never seen you
smoke a cigarette before.
(25:19):
My daughter Maeve aged four on the other hand before long announced while climbing onto
my lap sweaty from the mid-western heat.
When I grow up, I'm going to smoke cigarettes too.
I told her I didn't want her to because they are icky.
After a few more days of watching me with curiosity Maeve announced, I don't like when
you go out on the porch to smoke, which ignited in me the deep guilt I felt for indulging
(25:42):
in the practice in the first place.
So the following Thursday, I vowed to my daughter and one of my healthiest friends, Kate, that
I would quit the habit only weeks after I'd begun it.
But it was now a Tuesday night late in the summer and I was standing staring at Bob across
the living room in the left chair that had now become his primary residence and giving
vocal debate to whether I should buy a pack while I was out.
(26:04):
I really want a cigarette, but I probably shouldn't buy any.
I decided I would stop, but I want one.
I really want one.
Bob looked at me as though the answer was obvious, as certain as his diagnosis.
Quickly dismissing my concerns about the kids, about my health, he said, I think when you're
going out to buy your husband diapers, you should also be able to buy yourself some fucking
(26:29):
cigarettes.
I'll tilt on my head to the left and my eyes upward.
After some thought, I shrugged my shoulders with a degree of down and said, you have a
point.
Shortly thereafter, I responded, you were right.
And that was just it about Bob.
He always saw things so clearly, so plainly.
He called it whatever it was at the moment, like it was.
(26:51):
And he was almost always right.
Bob was sitting right next to me when I first began to write this memoir and that recliner
lived chair he'd been bound to for months with the power chair lent by the Muscular
Dystrophy Association.
He'd become so dependent upon a few feet from his raised legs.
It was August 5, 2012, five days before our 11th wedding anniversary and just over seven
(27:12):
months since he had been diagnosed with amiotrophic lateral sclerosis.
Moke signals, they signal danger, they request the presence of others, they seek the help
of others, they signal life, they signal danger, they signal life.
In my life, smoking cigarettes had nearly always signaled danger or been the result of
(27:36):
it.
You were able to blend humor in there, which I appreciate.
And I respect the help out of and also humanity, just clean humanity.
So I thank you for that.
(27:57):
No, we humor was a huge part of how we always cope with everything, but even more so when
Bob was sick.
He was doing that because I remember shit when I would fake stuff, I was in the hospital
for five months, four months after I woke up on the coma.
(28:18):
I know I faked, oh God, it's not just when I was in the hospital.
I faked shit all the time because maybe it's because we're a male.
I wonder.
You're supposed to be strong, bullshit.
I think for him, it was more just he saw life as absurd and in this moment it seemed
even more absurd.
(28:39):
And at some point, what else can you do?
I mean, you could cry or you can laugh.
I mean, there isn't a whole lot of, you know, I mean, you've got to find somebody to cope.
So for us, it was coping, but it was also genuinely funny sometimes.
I mean, he uttered some really funny lines when he was, you know, and he would get me
and I would get him and we would just laugh until we cry.
(29:01):
You're making me chuckle.
This is great.
It was a huge relief.
In fact, after he was sick and we started doing this, he said on an email to all of our
friends and his family and said, this is how we're going to play this.
And so when you come in our house, you're going to hear us joke about things that maybe
you're not ready for us to joke about, but get on board or don't come over yet.
(29:25):
Okay, there you go.
There you go.
Oh, okay.
He sound like he was a cool guy.
It was a cool guy.
Okay, back to you.
Okay, so I'm going to read another section.
This is maybe not even a fifth into the book.
(29:50):
So it's still really early in our experience with the diagnosis.
And I'm sharing it because I feel like it's really about making that decision of letting
people in or not letting them in into what you're going through in your life.
And that could be something as tragic as what we were going through or just your daily experiences
(30:16):
and struggles.
I've developed new philosophies about that.
And maybe writing a memoir has helped.
You have to lay a bear.
Okay, so when Bob was a freshman in college, there was a time when he felt suicidal.
He'd always loved physics and recalled writing his bike to the town library to check out books
on physics when in junior high and high school.
(30:38):
So he naturally thought that was what he wanted to study.
He headed off to Rochester Technical Institute as an 18 year old and soon found himself
miserable, surrounded by people unlike him, drinking a lot of booze and working out instead
of attending class.
He even skipped a finalist to go work out.
A story he later he mercilessly told many times to his own students as a tale of what not
to do.
(30:59):
Bob was failing school and life had no meaning for him.
But then he took a philosophy class and suddenly discovered there were others like him worried
about the same things and were interested in talking about all the things he felt were
important.
He called his father and told him he was going to change his major and get a PhD.
He'd never known anyone with a PhD and he really didn't have any idea what it meant.
But he'd asked his philosophy professor how one makes a living in philosophy and he was
(31:22):
told he should get a PhD.
So that was what he did.
He made that decision at 18 and everything else followed.
In many ways Bob's decisions about his ALS diagnosis followed the same course.
Bob said I'm a philosopher.
I came to terms with my own death in my 20s.
As though that explained everything about the decisions he would make about his illness.
And in a way it did.
(31:43):
Bob knew he was going to die and since he'd come to terms with his own death in his 20s
he was not afraid of death.
And he was not going to extend his life and end up like those with late stage ALS who
made scene on YouTube.
He was going to play his hand the way he had played all of his hands.
The cards were dealt and it was time to start playing.
My way had always been a bit more meandering.
My heart often leading me in directions that my mind knew it shouldn't go.
(32:06):
And my educational pursuit consisted of a zigzag of heart, mind, heart, mind.
Bob and I however were committed to doing this thing, his death, together.
I would zigzag more than Bob and I would be bringing up the rear bit but I wasn't going
to stop playing.
I too would play the cards I was dealt and I had designated Bob the dealer.
After Bob and I had told our inner circle the news it was time to begin telling everyone
(32:30):
else.
Some might decide they want to keep something as intimate as a terminal diagnosis a secret.
But secrets are rarely good.
We tend to keep secret what we want to hide and if we want to hide something it tends
not to be good.
And in my experience the hiding only makes it worse.
We keep secrets out of fear, fear of judgment, fear of criticism, but succumbing to such
(32:51):
fears rather than facing them also rarely does us any good.
We sometimes keep secrets when we are afraid the telling will somehow jinx us, like when
we are pregnant and we aren't sure the baby is going to make it so we wait until the second
trimester to be sure.
The thing about this kind of secret though is that we often end up bringing more harm
to ourselves.
By not being open we offer ourselves no empathy.
(33:12):
The thing about shielding ourselves from the pain of sharing that we have had a miscarriage
for example by not sharing the news of a pregnancy until after we are sure is that if we do
have a miscarriage no one will have been on the journey of glee and destroyed hopes that
we ourselves will have experienced.
If a person never knew we were pregnant how could that same person warn of us the child
(33:33):
we lost?
It is only by letting people into our hopes that we can let them into our grief.
It is only by letting them into our sorrow that they will feel sorrowful too.
I'm a very private person and so is Bob even more so than I.
But I knew that without telling we would live in total darkness with few pinholes of light.
As someone who had to work hard to build support groups I learned that it is the only by letting
(33:56):
people in that we can gain support.
Bob and I wanted to go it alone.
I knew that not everything we would need to do could be done alone and that the only
way anyone would care to help is if they had an idea of how they could help.
I also knew that I would need emotional support someone to talk to someone to listen to me.
Bob knew this before I did.
(34:17):
Bob told me early on you will need someone to talk to about me.
You won't always be able to talk to me about me.
How did he know this?
I didn't yet.
I went for a while.
Bob and I told each other everything.
The idea that I'd be talking to someone else about him rather than to Bob himself pained
me and made me realize the slow separation we were facing.
(34:40):
Our opinion was that once you started talking to someone else about your spouse rather than
two of your spouse you were usually headed to trouble.
Headed for trouble.
Excuse me.
The thing you were talking about it was probably a paragraph on fear.
It really hit home with me.
(35:02):
I'm coming up on 65 and I finally got a glimpse of what the hell life is supposed to be all
the lies that we were told when we were growing up about this and that and Audie Murphy movies
and all that stuff.
He hid it.
I think he sounds like he came to grips with something.
I don't know where that comes from.
(35:24):
We don't know.
You experience it being his partner too.
Yeah.
Bob was a very unusual person.
I wanted to write the book just to share him with the world because he was gone too early
and he had a lot more teaching to do to his students and a lot more to share.
(35:48):
What always struck me about him was he really was pretty consistent.
If he thought something he followed the course and I just don't think that's a typical person.
I think most people can think something and feel something completely different.
He always seemed to have his emotions aligned with his mind.
I really thought his profession as a philosopher was kind of through and through.
(36:10):
It really guided.
A person has been coming through my mind as I'm learning more, putting things together
about Bob and trying to put a face on him and stuff.
I don't know how that sounds but John Lennon.
He had an understanding.
(36:31):
He didn't bullshit.
He was the way it is folks.
I am the way I am.
You guys should all get on board with you.
You are too.
That sounds like Bob to me.
It's funny.
You know, we're on this road trip and the Beatles.
The Beatles were played over and over when he was sick.
That's what Bob won and listened to.
He listened to the Beatles so much.
(36:52):
I play music when I'm sub-soup teaching and the kids just love it.
One kid asked me, hey, could you throw on some Beatles that hang on?
I got something for you.
I want a serious XM.
They are right now they are playing a limited edition Beatles station.
They were playing some Lennon and the guys individually and stuff.
(37:15):
The kids nowadays, they get it.
They want to go back to a simpler time.
Let's not get off on time.
We'll talk about music later.
You had one more thing you wanted to share with us.
We were talking about which one of them was going to be in.
Go ahead.
Do something a little different.
I thought we should end with some humor because, you know, as like I said, I like to end with
hope.
(37:36):
Actually, the book ends with hope in many ways that we have to say goodbye to Bob just as
I did.
The reader goes on that journey with us.
This is one of those respites in the book.
But in life, it was just one of our really funny moments while he was sick.
The chapter is titled, Juicing.
(37:57):
This sounds like it's going to be a good one.
Time crept forward as we absorbed the devastating news.
And before we knew it, it was mid January and school was back in session for me, Bob
and Liam, who was in third grade.
We decided to keep Maeve home because Bob wanted to soak up as much time with her as
possible.
We had to go forward.
(38:19):
We needed to get busy living.
Bob and I had classes to teach and kids to raise and we needed to get Bob's health on
track with good food because his body was attacking itself.
ALS attacks motor neurons in the brain and spinal cord, eventually impacting all voluntary
muscle movement.
Voluntary muscles are ones we control, muscles we use to do things like lifting our arms
or legs, speaking or breathing.
(38:41):
Because we can't control our ones like our hearts, we can't hold our heart beats the
way we can hold our breath.
We had a membership to a big box bulk food place.
Bob's folks had given it to us when Liam was born so we could get cheaper formula and diapers.
When I got home from work one day that month, there were huge quantities of vegetables all
over our kitchen table.
Bob was juicing.
(39:03):
His dad had gifted us a Breville juicer because our friends had told us juicing was the quickest
way to get good nutrients into Bob's body.
The juicer was wearing like crazy and Bob was standing there in a pair of cargos, a tank
top and a flannel shirt.
His usual attire.
Hey, what's going on?
I said.
I'm juicing, he said, ecstatically.
(39:24):
I can see that, I said, surveying the mess in the kitchen.
Giant bag of sweet potatoes, carrots, celery, kale, spinach, peppers.
There were so many ingredients and pealings and bags everywhere.
There's a video I want you to watch.
I left it on the computer in the office, Bob said, shouting over the juicer without skipping
a beat.
Okay, go watch it.
(39:45):
Okay, I laughed because he looked a bit nuts as he kept feeding the machine its vegetables.
I'll be right back.
Great.
He was so enthusiastic that he was almost maniacal.
I watched the video and it explained what he was doing.
Bob had found a woman on YouTube who said she had reversed multiple sclerosis with her
diet.
He was going to try to reverse the son of a bitch disease with food.
(40:09):
I walked back into the kitchen where Bob had a giant pitcher full of juice.
It was at least a gallons worth.
The kitchen reeked.
Did you juice the onions?
Yep.
Seriously, you juice the onions?
Hell yeah.
Oh, no Bob.
That's gross.
(40:30):
You eat onions.
You eat them raw.
You can cook them.
You don't juice onions.
That's going to be disgusting.
It's going to take over everything else.
Oh shit, it is.
He said dumbfounded.
Bob could boil pasta and heat stuff.
He made mean scrambled eggs because he had the patience to cook them on low.
(40:52):
But Bob was no cook.
I once had to mash the potatoes and those fresh, delicious babies were mashed so well
that by the time I realized how long he'd been mashing, they had turned into those
boxed made from potato flakes mashed potatoes dished out in school cafeterias.
You've got to be kidding me.
Let me smell it.
The container was a hulk green and the smell of onions was overpowering.
(41:14):
Yuck.
I can't believe you're going to drink that.
Bob smelled it.
Oh shit.
These spaced out moments were the Bob moments that were unforgettable and delightful.
Did you watch the video?
He asked.
Yes, I get it.
It's pretty amazing.
It's worth trying.
Let's do this thing.
Well, I'm not going to waste it.
(41:36):
I guess I've got to drink it.
Here goes Bob plugged his nose and began downing the entire jug, taking breaks to shake his
head and wins.
He managed to drink that entire fucking onion thing.
He was going to slow this ALS fucker as he often referred to it down.
Damn it.
We were going to fight this damn disease.
(41:57):
It was so gross and he drank it.
It was like a gun.
I hope the microphone wasn't, I had to turn my head away so I could check off the side
folks.
Oh my God.
It's a problem.
It's me.
And the whole kitchen's.
Oh, you know, you're writing, I was in your kitchen with you.
(42:24):
Oh my God.
He was wise and clueless at the same time.
That's when made it.
I think that you got to sell that on a t-shirt.
He was wise and clueless at the same time.
I'm going to tell that one to sue.
Maybe she'll start to say that I am wise and clueless at the same time.
(42:47):
Okay.
All right.
Okay.
Thank you for the chunk.
Thank you for the chunk.
I'm glad I decided to say, hey, go do something for a good different.
That's good.
So there's something, you know, when I was researching you, I was like, yeah, yeah, again,
(43:08):
I'm going to pull from here, pull from there and find all these little bits of information
and try to get into who the heck you are and stuff.
I signed up for your newsletter and in there, you stated something you posted recently on
Twitter and I'll read it.
When we are hurting, we close off in an attempt to protect ourselves from further hurt.
But closing off also cuts off possibilities for happiness and contentment.
(43:32):
The way forward is to open to new people and experience it and you left it with a hashtag
of love forward.
Yeah, that was, thank you.
I think that-
Well, I love you from my slogan.
Love forward.
That's a long slogan, but oh, love forward.
I like that.
I've never seen that.
(43:53):
So you better go out and get that baby trademark to know.
I wonder if people understand it without the context, but to me, what it means is you have
to put love into the world in order to receive it back, right?
And if we close up and we don't put any out, people don't see us as receptive to it either.
(44:18):
So when we're really closed, we become unapproachable.
So is that?
That's profound.
But is that part of growing up?
Yeah, I mean, we're getting profound.
But yeah, that's where I was headed with that.
Was the idea that loving forward means if you open yourself up to all kinds of new experiences
(44:39):
with people, there's possibility, right?
And there's hope.
If you close, if you close when you're hurting, which we do, it's a natural response.
But if we stay there, then we can't come out of it.
There's nothing on the other side of that.
(45:00):
Maybe that's a benefit.
It was a benefit of going through being disabled in some degrees or, well, not just being disabled,
I guess, about life.
If we're open to it, but maybe shit has to happen enough to us to a point where we just
say, yeah, okay, shit's going to happen.
(45:21):
And I think you've boiled something down.
Like shit happens.
You've boiled some things about life down into combining love forward with the hashtag.
That's really good.
I think something back to the beginning of the show, it's true that when we're younger,
we just don't know.
We don't know that there's going to be these hills and valleys.
(45:43):
So we go through them.
But I think what, at this point in my life, what helps me get to the other side of any
experience is knowing that I can, right, that it's happened before.
So even when it seems impossible, it has seemed impossible before.
So in a way, there's a takeaway from going through the, you know, it seems impossible.
(46:06):
We do learn some things, however, that impossible on the other side, it's still possible.
You know, like if you can just open yourself up mentally or physically or emotionally in
whatever way, right to, and to me, that's love, you know, it's the love that you put
out.
It's love to greet somebody in the hallway with a smile.
(46:28):
I mean, it is.
And isn't it fun?
I only want to stay here for a second because I do this as a substitute teacher.
I'm walking down the hallway and I see someone with a head down.
I was like, come on in.
And morning, it just, it's so odd that it stands out in a good way that people need to hear
(46:49):
some stuff.
Absolutely.
And you've lost that even more, haven't we?
Man, I'll worry.
That's another show we're going to, let's not go in there.
Oh my.
Hey, I want to go.
Before we start talking about stuff nowadays, all that takes a minute.
You're working on your first full-length poetry collection called Phantom Limbs.
(47:11):
And it's going to be available for pre-sell.
I read next summer as in this or next.
Yeah, next summer.
So I'm actually, I'm finalizing it.
And it's due to the publisher in just a few weeks actually.
And then I'm getting it ready for print and then it'll be up for pre-sales.
(47:32):
It's supposed to launch in September or October and it'll have a final date once they have
the manuscript and get it in the timeline.
So, you know.
Very cool.
Okay.
I want to do something fun that I've, every show I've been doing something at the end
of the shows, but I added a little something, a little toy I have now, what we're going
to do it now.
(47:55):
So, people are going to get annoyed.
I don't care.
That's on means it's time to shift gears with the road trip roundup.
These are going to be five questions I'm going to be throwing at Dirdra about her road trip
and experiences.
Okay.
So, question number one.
When road tripping, do you tend to do fast food or local diners?
(48:18):
I would pick local diners if I could.
I like going to the local places in general.
I've got to tell you about half of the people I've been interviewing so far do that and
Sue and I have talked about this with my wife about what we're going to be doing wrong.
I say, we got to start doing that.
I'm picking this up from people and learning.
There you go.
(48:39):
Because you don't know.
I mean, you could find some really good stuff, right?
Yeah.
Well, absolutely.
And Yelp is helpful.
Yelp will help scare you in a good direction.
You just taught me something professor.
Now hopefully I have what I was taking notes today when I was in your class.
He was in Yelp.
I like that.
All right.
What's a dream car for a road trip?
(49:01):
Could be something you grew up with, you know, sitting in the back seat on or something
you have now or something you would just like to have for a road trip.
Green car for a road trip.
I'm so torn.
It depends on his on the road trip.
On the one hand, you want a big vehicle so you could possibly sleep in it.
And I'm older, so I'd rather sleep in it.
(49:24):
It's been a tent.
But you know, like a Subaru or a minivan or something like that.
On the other hand, be really fun to go in a convertible.
I once went in a Jeep with top off and we would just throw on the bikini top like this
in the 90s when it was raining.
And that was super fun.
But I don't know now.
(49:45):
I might.
It was hard to sleep in a Jeep, but.
Yeah.
It depends again who you're with and where you going.
But the road trip is question number three.
I really love this question.
Last cassette or CD that played while you're on a road trip.
I missed the first part.
You cut out on the last last cassette or CD that played while you're on a road trip.
(50:12):
Oh, wow.
I would say I was probably blasting clean because I usually am.
Oh, queen person.
Yeah.
Very good.
Okay.
You got to have good speakers for me because their sound is so clean.
You've got to be able to experience that way.
(50:33):
Number four, straight up.
Cocoa Pepsi.
What are the other products?
Not just here's a Coke or you could be Mountain Dew or Nehigh or whatever they produce.
It's so funny.
I think it depends on what you're eating.
Oh, I've never heard this part before.
(50:54):
Yeah.
You got a point.
All right.
So you're slightly different.
So maybe you want your Coke with your fast food more.
Okay.
Well, well, maybe you want your Pepsi with.
Oh, you're talking about just the difference between Coke and Pepsi or Coke.
Folks, she's ripping on the Coke product.
(51:15):
So at McDonald's, you would get a Coke, but if you're going to go to Mappa restaurant
in whatever city you might then therefore Pepsi please.
I feel like Coke cuts salt more.
Does that make sense?
Like I feel like Pepsi feels a little more syrupy or something.
(51:36):
And so I feel like if you're eating something really salty, Coke is where it's at.
And maybe the food's a little more, I don't know, saucy, subtle, I don't know, Pepsi.
Have you tried Coke Zero yet?
Not a long time.
I think I tried it when I first came out.
No, Coke Zero.
I'm in Europe, but in October they didn't have Diet Coke because I said Diet Coke Zero.
(51:59):
Okay.
I came home.
I went to the store and I was Coke Zero.
I dumped the silver can that I Coke.
I mean, it tastes like Coke.
You bring up an interesting point.
Okay.
Number four, you go wherever you want to on this.
Favorite road trip memory.
Oh.
So I went cross country by myself at 23.
(52:27):
And you know, this was 1993.
And so there were no cell phones.
She's over 50 folks.
Yeah.
I was 23 years old and I, it was 93 and my mother had died three months before.
And I now lived in New York.
I returned to New York, my place and my birth.
And she had lived in Arizona.
(52:49):
I had spent my summer with her when she was dying.
And I'd gone back to New York and I decided I was going to go cross country as like an
independent woman in the world without a mom.
So that was it.
I think that, yeah, but that carries me back to what we were talking about earlier with
how I view your writings evolved.
(53:13):
That seemed to be maybe the early phase of you becoming you because that was ballsy.
That was bold.
And you were probably cranking queen.
I was cranking and I was, I was singing out loud a lot.
And I know it was just, I was smoking at the time.
So this was one of my smoking periods of life.
(53:35):
Oh my God, I'm sick.
And so I, I told myself no more than one cigarette an hour, but I was alone, you know.
So like when the hour clicked, it's like, okay, get 10 minutes.
It was 10 minutes.
It was 12 hours today.
So I'm like, I've got 10 minutes of entertainment here.
But yeah, it's memorable being alone in that car and just, I just felt really, you know,
(54:02):
I'm here and I'm going to survive somehow.
And this is part of like proving to myself that I'm going to.
You've done that a lot, I think.
I think so.
And you've taken yourself up on it and you haven't been afraid to do it.
That's where I think it's different people do different things in that you're not afraid
to do it.
I think I've been afraid, but I've also known the well, another one of my lines is the only
(54:27):
way out is through, which I guess is another loving forward kind of.
I like that.
Yeah.
But the only way out is through.
And so I would, I don't want to do it.
I don't want to do it.
I'll kick in ice cream and then I do it.
Yeah.
You got to be able to reflect about yourself.
And I think that tells you a lot about yourself.
Hey, we're going to wrap it up.
(54:49):
And I want us to stay on, but I'm going to click it off in a second for the listeners,
but you and I stay on.
Okay.
So I'll just say right now challenge relax everybody and keep listening.
And thank you very much.
Thanks for listening.
Check out previous episodes with new ones dropping each Tuesday.
(55:11):
If you don't see a synopsis of this show where you're listening, visit our website
at lifesarodetrip.podbean.com for more information on this week's guest.
This is your host Scott Martin reminding you that lifesarode trip.
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 Deirdre Fagan.
Deirdre is the author of the living now awards winning memoir Find a Place for Me.
In it she shares the story of losing her husband to ALS, also known as Lou Gehrig's disease.
Deirdre is a 2022 Eric Hoffer Award category finalist and next generation indie book award
(01:17):
finalist for a collection of short stories known as the Grief Eater.
Poetry Chat book have love and a reference book titled Critical Companion to Robert Frost.
Her creative and academic work is available both in online and print literary journals,
magazines and anthologies.
Her poem Outside In was a finalist for the best of the net 2018.
(01:41):
Stepping up was nominated for a 2021 Pushcart Prize and Best of the Net award and Homesick
was nominated for a 2018 Pushcart Prize.
Deirdre regularly attends and presents a national and regional conferences as well as doing workshops,
presentations, book readings, signings.
Oh yeah, she's also associate professor at Ferris State University.
(02:04):
Hi Deirdre.
Hi Scott, thanks for having me on.
Of course, I first came across you on LinkedIn and then I started doing some research and
really came to be interested in everything that you were presenting and talking very honestly
about what you have dealt with.
But first thing I've got to mention is how's life in the mitten portion of Michigan?
(02:30):
It's currently warmer than it ought to be and earthworms are coming out and robins.
Really?
And so it's a little creepy because you know this could affect cherries this year.
Wow.
And some apples but we are expecting snowstorm in the next few days.
So everyone- I was going to ask you about that.
Yes.
If you were to go straight west cut through to the center of Wisconsin at say, Wisconsin
(02:53):
Dills and hang a right and drive up about an hour you'd be where I am and I was going
to ask you we had a little bit of snow today.
But Wednesday night, are you guys looking at?
We're looking at eight to ten.
Yeah, we're looking at well, I don't know quite that much.
They don't quite know but we're getting something starting Tuesday night I believe.
And then into Wednesday.
And we actually take the Luddington ferry over to Manitowoc.
(03:14):
Okay.
Yeah.
Yeah.
Okay, you've been over.
I have to tell you too that when I saw your last time as Fagan I immediately thought of
Donald Fagan from Steely Dan.
His body.
Then I realized his is F-A-G-E on in your today.
So I would have to say that you know, going back from the top of the show, if we were
on a real road trip I'd probably say, dear dear dear, pop in a Steely Dan CD.
(03:38):
Please.
Hey, just to give the listeners an alert.
This episode is meant to tear the band aid off the emotional side of disability.
There are no holes barred here.
There might be a couple of F-bombs or something.
But we just want to start with the show getting in and wrestling with the issues of the disabled
community.
(03:59):
So, again, no holes barred.
We want to get into having Deirdre read some of her work and have asked her to be here
today and share with us some of her.
Was it a short story?
Yes.
Most of the days of the week, correct?
Was it a short story?
Yes.
(04:20):
It's sort of the length of a flash fiction.
That's a new term these days.
Yeah.
So if you would, please.
Most of the days of the week.
On Monday, you make pancakes, pay the bills, clean the floor, wipe down the counters, and
begin chopping vegetables for soup.
(04:41):
As the knife slices the onion thin, you peel away its outer layer and consider committing
sapuku at noon.
On Tuesday, you start the crock pot, dust the blinds, rake the leaves, strip the beds,
and carry the laundry downstairs.
You put the wash on delicate, cold.
As you turn to go upstairs to the hum of the wash or balancing its own mind, you longingly
(05:02):
consider freshly washed, warmed, and crisp sheets tied gracefully around a rafter and
your neck.
Those beams appear strong.
Wednesday, after tucking the kids into bed and starting the dishwasher, you wash your
face, brush and flush your teeth, and line every pill bottle in the medicine cabinet
up on the bathroom counter before considering what they will find in the morning.
(05:25):
Then you carefully place the bottles back in the cupboard, turn out the lights, and climb
into bed yourself.
After checking the breaths of your children.
Thursday night you have a little bit too much to drink, some wine, several beers, rum, and
a hot cup of tea.
Then you remember something Nietzsche said about thoughts of suicide getting many through
a dark night.
(05:46):
This week you've made it three and a half days, but it isn't the weekend yet.
You aren't sure if Nietzsche's right, but you know you can't drink the antifreeze.
Friday you go out for groceries and consider high speed, a curve, a tree, or maybe that
bridge over there.
But you probably wouldn't even be successful, and then what a mess you'd make.
(06:07):
No one would be there to clean it up.
And the kids, who would make them breakfast?
Saturday you roll over to turn off the alarm, but there isn't one.
A blessing.
Shortly thereafter there are kids on top of you climbing over you, giggling, offering
to get you coffee, begging for eggs and bacon, and so you make your way to the kitchen.
(06:28):
When the grease in the bacon pan begins to sizzle, you don't imagine dousing yourself
in it or starting a grease fire.
Instead, you serve up breakfast and sip your coffee, admiring the life you have created,
the one still in the making.
See, that's the first thing I read about you.
So when I'm digging around for guests and I find someone that I'm interested in, I'll
(06:52):
Google up the person's name and then start digging around.
And that's the first reading that I came across.
And I have to tell you, I just grabbed me to, okay, what's the next thing I could find
on this person and see if there's enough information to really get in and talk about it.
That right there, Deirdre, is something we've got to talk about.
(07:15):
What inspired you?
What do you think led you to writing that?
So that one was actually written within the first few years after losing my husband Bob
to ALS.
And so our kids were nine and four when he died, eight and three when he was diagnosed.
(07:36):
And we lost him within 10 months from diagnosis.
And so I was thrust into the grief without him, as well as a single mom.
And I was the sole breadwinner and I had so much on my plate.
And there were those days that it just seemed impossible to go on.
(08:00):
And what do we focus on to help us keep going?
What is it that we can, I think the quote about Nietzsche always comes back to me.
I love the irony and humor in, thoughts of suicide got many through a dark night.
They make it through the night, but they still think about it.
And I think there's honesty in that.
I think many, many people think I can't go on.
(08:22):
How will I go on?
Right?
There's the Beckett line.
I can't go on.
I'll go on.
And you know, we just hope that we make it through that dark night because nothing, I
think what I've learned more than anything is that everything changes.
Everything is always changing.
(08:43):
And if we could just hang on through the next change, there is hope and possibility in that.
But when we're in our darkest moments, we think we will always be in them.
And you know, we know that happiness and pure joy is fleeting, but we, in dark moments,
we forget that they are possibly fleeting too.
(09:04):
They often are as fleeting.
Because when we're in those dark moments, it's so deep that that's where it is.
But on the flip side, of course, you know, we're in our happy times too.
That seems like there's, you know, no top to it.
And it's just enduring.
So again, that's the first thing I read from you.
And then I went on to find some other things.
(09:25):
And then the next item I found was a series of short stories that you wrote titled The
Grief Eater.
And I'll read one reviewer wrote.
There is so much you admire in these deeply human tales confronting grief, death, loneliness,
and despair.
Each compelling and complex character reveals an unexpected grace, reveals comfort where
(09:47):
one would never expect to find it.
And this gives a reader the courage to face the worst.
Whether you're grieving or celebrating the beauty of this life, these stories will speak
to you.
Again, dear Joy, that's the second thing I read about you and I had to dig into it more.
And right there, I was set out.
I'm going to reach out to this person and see if they come on the show.
(10:08):
But now that we're talking about it, we have communicated a little bit by email.
We've been able to share some stuff, but it's important for us to share a lot of emotional
stuff for the show.
And that's what I'm trying to do with taking lives of road trip in a little bit new direction
on, again, ripping the bandaid off.
Let's talk about what the emotions are.
What was your inspiration for The Grief Eater?
(10:32):
So I think I will begin to answer that question.
I just want to say at the beginning that just like the last poem, the collection as revealed
through that review tends to most often end on a hopeful note.
And so one of the, I think, what has emerged as one of my signature marks is that I go
(10:54):
deep, I rip the bandaid off, I reveal a lot, and I share a lot of emotions, whether it's
fiction or nonfiction.
But I think the signature mark as I frequently return to hope at the end of a poem, at the
end of a story.
And The Grief Eater is, and I think that's how I live.
So it's reflected in my writing.
(11:16):
I've experienced a lot of loss and suffering and challenges.
And what's kept me going is the belief that there's hope and possibility if you can write
out those storms.
But as I mentioned, when I'm in the storms and when I'm in my next storm, I will have
to remind myself of what I'm saying right now.
(11:38):
I've been saying that too.
I happen to be momentarily in the respite.
And so during the respite, I'm sharing what I've learned when I was going through storms.
And I too will be in a storm again.
I feel like this is what life is.
I have a good friend who said to me a few years ago, I said, I'm on a hill, but there'll
(12:03):
be more valleys.
I said, life is hills and valleys.
And she said, yeah, why did we ever think it was anything but?
And I think there's something to that where it's sort of taught in our society that life
should be or is or ought to be all hills.
But that's not a realistic view of what life is.
You live long enough.
There's a lot of valleys.
So in the Grief feeder, the Grief feeder was born.
(12:27):
He asked for my inspiration.
It was actually when I turned to creative writing.
You mentioned in my bio that I wrote a reference book to Robert Frost.
My training and background as an academic is in literary scholarship.
And my dissertation was Frost Dickinson and Hardy.
And I spent the first decade as a professor producing more literary analysis criticism
(12:50):
scholarship.
And then that book actually came out in 2007.
And none of my family members were alive.
My birth family members, both of my parents and both of my brothers.
I lost by the time I was 36.
And my father and my remaining brother died two weeks apart in 2006.
(13:14):
So I actually rushed to the publisher to please put a little note.
All they could do at that point was put it on the copyright page mentioning my family
members.
So when I was holding it in my hands, nobody was there to see it.
And I felt very lonely because I had no, my siblings had not married or had children.
(13:35):
My parents were gone.
I had never had grandparents on one side.
And on the other side, they were gone and I hadn't been close to them to begin with.
I was really kind of lone.
And I felt isolated as a griever.
There were no resources for the position I found myself in.
You often hear adult children say, I'm orphaned, you know, even when they lose their parents
(13:58):
and they are themselves 65 or something like that.
So I had that feeling of I have no parents, but I also had, I have no siblings.
I have none of these people to share my memories or to be there for my children.
And so I started to turn towards creative writing to express the emotions that I was
(14:19):
feeling.
And at that time I expressed them through fiction.
And so the grief here is an assembly of characters who are all coping with different types of
grief, different losses.
And in different ways, most of them what your average person might consider peculiar, usually
in socially unacceptable ways.
(14:40):
So they act in, I think, what are very honest and true emotional ways, but not socially
acceptable ways.
And so they go, we follow them on these various journeys.
For example, I have a man who grieving his wife just starts dialing random numbers,
(15:02):
seeing if he can make a connection with someone.
That's interesting.
I have another character who starts attending funerals of people she does not know, because
she's seeking a community of grievers, but she doesn't really know why.
We start to realize that's what she's doing, that she feels isolated and she wants to be
around other people who are grieving, but she doesn't know.
(15:25):
We don't know as we enter the story as readers, but you start to see this.
So that was, my impetus was to express some of my own grief through creative writing.
I was going to say, it sounds like I wonder how much of this was truly therapeutic and
just allowed you on what was maybe inside of you morphing into something and that's how
(15:50):
it came out.
Yeah, I always wonder how much writing is or is not, because you still have to come
back to the emotions you're feeling, but I do think it helped me to express them for
sure.
It helped me to express these emotions.
And I went to a lot of self-help books looking for insight, something that would help me.
And I found none that really spoke to where I was.
(16:14):
It was either giving me information I already knew because I'd already lost a parent and
brother and other people before I lost my father and brother, or it just wasn't speaking
to me.
So I found myself going to poems I'd read earlier, stories I'd read earlier.
And I think a lot of people go to creative writing as well as nonfiction self-help to
(16:38):
feel a kind of kinship.
So I love conversations like this when we're doing the shows, it makes my mind drift off
of my notes.
Most of the days of the week, that was written before Find a Place for Me, correct?
Yes.
The Grief Eater was written before Find a Place for Me, correct?
(17:01):
Before most of the days of the week and Find a Place for Me.
Yes.
Yeah, the Grief Eater, while it came out in 2020 as a collection, many of the stories
were born in the late 2000s and early 2000s.
And that was also when it was segwaying into poetry.
And I wrote more poetry after I lost Bob in 2012.
(17:23):
And I didn't start to find a place for me until 2018 seriously.
I had written some bits before, but seriously in 2018.
It's curious to me that it seemed that there were steps involved in the evolution of you
giving to the point of writing Find a Place for Me because I have a feeling that's where
(17:47):
you really, again, ripped the band-aid.
Hey, folks, this is probably a place where people are listening this in the evening
or what the heck, even if it's midday.
Maybe we should, dear, what do you have in there?
Is that water?
I was thinking about grabbing a glass of wine because I think it were to that point where
I think we could just really get off on tangents and really discuss some of this stuff.
(18:08):
I think it's really good because I'm learning something about you and maybe about your psyche
and how humans work and how this stuff really, it was stepping stones, it seems to me, leading
up to you writing Find a Place for Me.
And there is something you're working on now.
We'll get to that later.
But that's what I wanted to just seems like everything is fitting in the place where you
(18:31):
and how you're writing is evolving or how it's maybe not evolving is the right term,
but how it's stretching your boundaries even further.
I think that's very insightful.
I mean, I started out, you know, I wasn't trained as a creative writer.
I was trained as a literary scholar.
Of course, I read like crazy.
But I started out in fiction more than poetry and fiction is a safe place, right?
(18:57):
I mean, people.
Yeah, yeah.
And you can make them do anything.
So I could just do crazy things.
You know, I'm often in situations where you think right now, wouldn't it be great if I
did X, but I won't do X because it's totally unacceptable, right?
But I could just do crazy stuff.
Well, and then when I segued into poetry, poetry for me is a combination of fiction
(19:19):
and nonfiction.
It always starts with some emotion or a scene that is true, but I get to manipulate it in
fictional ways because it's poetry.
So I would say you get more of the personal from me, more of my nonfiction self in my
poetry.
I respect that.
But when I tell people, please don't read this as, you know, autobiography or memoir
(19:44):
because because I manipulate it.
So sometimes it's really not me by the end of the poem.
It doesn't mean that it doesn't start with something authentic.
And then obviously moving into memoir as a whole, you know, you're saying this is true.
This is how I recall it.
And so absolutely I had to get comfortable with that.
And I was also going through, you know, I went through those losses of my family members
(20:07):
five years after I lost my father and brother, Bob was diagnosed.
So I was, you know, when I was calling my friends to first tell them about the diagnosis, they
were saying of all the people and all the world that this could happen to.
I cannot believe it's happening to you.
You've been through enough.
Oh, because you've been through enough.
(20:29):
Okay.
Because I'd been through enough.
They said, look, you've already lost your whole family.
You're going to lose your husband now too.
I mean, people were and I said, yeah, I don't want this to happen to anybody or anybody's
husband.
But why is it happening to mine?
I mean, I paid my dues in the last department for, you know, early 40s.
I've done it.
I don't need more right now.
(20:51):
But it really, you know, it was happening to Bob.
It was happening to both of us.
And I obviously couldn't write much at all while he was ill.
I did start to find a place for me, just a little bit of the prologue that I hope to
share during the show while he was alive.
But I really couldn't write while I was taking care of him or in the early, like the first
(21:15):
year or so after I lost him.
I just, I can't write when I'm in the thick of it.
You know, I started the stories a couple of years after my family died.
I need to be at a place where I can reflect.
That's a distance.
Okay.
All right.
Let's start going in that direction.
But first, I want us to take about a three second pause here because there might be a
(21:36):
place for someone to drop an ad.
So we're going to do that right now.
Okay.
All right.
Now let's get into your latest work that's out there.
Find a place for me.
Just to mention the people, all of this stuff is going to be linked up.
Go on the Life's of Road Trip website and there are going to be links to a lot of different
things.
(21:57):
You know, Deirdre is going to be getting into her book, but she's talking about Luke Eric's
disease and that might bring some of the people of my age.
I'm going to actually put a link on there for if I can find part of the Yankees with
Gary Cooper, the story about Luke Eric and I know I can find and I'll put on their Gary's
(22:20):
farewell speech that is all linked to this because it started the disease.
You know, the in the median, we all came to know it as Luke Eric's disease from Luke Eric.
So people can learn about that.
Deirdre, I'm going to just hand it off to you and you roll with what we've talked about
on again, folks, no holds part.
(22:41):
This show was going to start going in a direction where people can be, damn it, let's just talk
and not be afraid to say things and share things.
So Deirdre, it's all yours, kid.
Okay.
So I'm going to read the prologue.
And as I mentioned, this is the only portion of the book that I would say was really written
(23:05):
while Bob was right next to me.
He was actually inspired to write a book of poetry after he was diagnosed and he self-published
it before he died.
And so he spent his last month's focused on writing, writing letters for the kids and
notes and writing his book of poetry.
So let me interrupt you for a second here.
(23:26):
That's published.
Yeah, it's published on, you can find it on Amazon.
Once you get me the link and then I'll put it on, I mean, this is going to be included
in the show.
I don't care.
We're just talking here, folks.
It's for all the listeners.
But between the two of us, let's get it to me.
And then when I post, it'll be on the Life's Rocha website for your stuff.
(23:47):
So anyway, find a place for me.
So the prologue is titled Six Months Into the Diagnosis.
If you think you aren't going to be smoking when I die, Bob's words trailed off.
I immediately thought smoking as in being reduced to a pile of ash.
A pile of cremated remains he would be and I most certainly would be smoking, both literally
(24:12):
and figuratively as I burned down.
I was already burning down like a lit cigarette.
When he did die, I knew I would be sending up smoke signals, hoping someone would see
them and somehow rescue me.
I didn't know how I could ever survive this, this thing that was happening to us, happening
to Bob.
Six months into Bob's diagnosis, I broke down and bought a pack of American spirit cigarettes.
(24:36):
At least they're not filled with all those additives.
I convinced myself.
They can't be that bad, right?
Two weeks into smoking cigarettes only at night after the kids had gone to bed.
One of my many crises made me say aloud to myself, I deserve a fucking cigarette when
I want one and start smoking in front of the kids.
I was still only smoking three to four a day, but sometime mid-afternoon I'd walk out onto
(24:57):
our queen and porch in the sweltering summer heat, usually with an iced coffee also in
hand and light one up.
The first time my son Liam saw me, he just stared at me.
Age nine, he was more enthralled than disgusted.
I looked at him and said, what?
He just stared blankly at me, shrugged his shoulders and said, I've just never seen you
smoke a cigarette before.
(25:19):
My daughter Maeve aged four on the other hand before long announced while climbing onto
my lap sweaty from the mid-western heat.
When I grow up, I'm going to smoke cigarettes too.
I told her I didn't want her to because they are icky.
After a few more days of watching me with curiosity Maeve announced, I don't like when
you go out on the porch to smoke, which ignited in me the deep guilt I felt for indulging
(25:42):
in the practice in the first place.
So the following Thursday, I vowed to my daughter and one of my healthiest friends, Kate, that
I would quit the habit only weeks after I'd begun it.
But it was now a Tuesday night late in the summer and I was standing staring at Bob across
the living room in the left chair that had now become his primary residence and giving
vocal debate to whether I should buy a pack while I was out.
(26:04):
I really want a cigarette, but I probably shouldn't buy any.
I decided I would stop, but I want one.
I really want one.
Bob looked at me as though the answer was obvious, as certain as his diagnosis.
Quickly dismissing my concerns about the kids, about my health, he said, I think when you're
going out to buy your husband diapers, you should also be able to buy yourself some fucking
(26:29):
cigarettes.
I'll tilt on my head to the left and my eyes upward.
After some thought, I shrugged my shoulders with a degree of down and said, you have a
point.
Shortly thereafter, I responded, you were right.
And that was just it about Bob.
He always saw things so clearly, so plainly.
He called it whatever it was at the moment, like it was.
(26:51):
And he was almost always right.
Bob was sitting right next to me when I first began to write this memoir and that recliner
lived chair he'd been bound to for months with the power chair lent by the Muscular
Dystrophy Association.
He'd become so dependent upon a few feet from his raised legs.
It was August 5, 2012, five days before our 11th wedding anniversary and just over seven
(27:12):
months since he had been diagnosed with amiotrophic lateral sclerosis.
Moke signals, they signal danger, they request the presence of others, they seek the help
of others, they signal life, they signal danger, they signal life.
In my life, smoking cigarettes had nearly always signaled danger or been the result of
(27:36):
it.
You were able to blend humor in there, which I appreciate.
And I respect the help out of and also humanity, just clean humanity.
So I thank you for that.
(27:57):
No, we humor was a huge part of how we always cope with everything, but even more so when
Bob was sick.
He was doing that because I remember shit when I would fake stuff, I was in the hospital
for five months, four months after I woke up on the coma.
(28:18):
I know I faked, oh God, it's not just when I was in the hospital.
I faked shit all the time because maybe it's because we're a male.
I wonder.
You're supposed to be strong, bullshit.
I think for him, it was more just he saw life as absurd and in this moment it seemed
even more absurd.
(28:39):
And at some point, what else can you do?
I mean, you could cry or you can laugh.
I mean, there isn't a whole lot of, you know, I mean, you've got to find somebody to cope.
So for us, it was coping, but it was also genuinely funny sometimes.
I mean, he uttered some really funny lines when he was, you know, and he would get me
and I would get him and we would just laugh until we cry.
(29:01):
You're making me chuckle.
This is great.
It was a huge relief.
In fact, after he was sick and we started doing this, he said on an email to all of our
friends and his family and said, this is how we're going to play this.
And so when you come in our house, you're going to hear us joke about things that maybe
you're not ready for us to joke about, but get on board or don't come over yet.
(29:25):
Okay, there you go.
There you go.
Oh, okay.
He sound like he was a cool guy.
It was a cool guy.
Okay, back to you.
Okay, so I'm going to read another section.
This is maybe not even a fifth into the book.
(29:50):
So it's still really early in our experience with the diagnosis.
And I'm sharing it because I feel like it's really about making that decision of letting
people in or not letting them in into what you're going through in your life.
And that could be something as tragic as what we were going through or just your daily experiences
(30:16):
and struggles.
I've developed new philosophies about that.
And maybe writing a memoir has helped.
You have to lay a bear.
Okay, so when Bob was a freshman in college, there was a time when he felt suicidal.
He'd always loved physics and recalled writing his bike to the town library to check out books
on physics when in junior high and high school.
(30:38):
So he naturally thought that was what he wanted to study.
He headed off to Rochester Technical Institute as an 18 year old and soon found himself
miserable, surrounded by people unlike him, drinking a lot of booze and working out instead
of attending class.
He even skipped a finalist to go work out.
A story he later he mercilessly told many times to his own students as a tale of what not
to do.
(30:59):
Bob was failing school and life had no meaning for him.
But then he took a philosophy class and suddenly discovered there were others like him worried
about the same things and were interested in talking about all the things he felt were
important.
He called his father and told him he was going to change his major and get a PhD.
He'd never known anyone with a PhD and he really didn't have any idea what it meant.
But he'd asked his philosophy professor how one makes a living in philosophy and he was
(31:22):
told he should get a PhD.
So that was what he did.
He made that decision at 18 and everything else followed.
In many ways Bob's decisions about his ALS diagnosis followed the same course.
Bob said I'm a philosopher.
I came to terms with my own death in my 20s.
As though that explained everything about the decisions he would make about his illness.
And in a way it did.
(31:43):
Bob knew he was going to die and since he'd come to terms with his own death in his 20s
he was not afraid of death.
And he was not going to extend his life and end up like those with late stage ALS who
made scene on YouTube.
He was going to play his hand the way he had played all of his hands.
The cards were dealt and it was time to start playing.
My way had always been a bit more meandering.
My heart often leading me in directions that my mind knew it shouldn't go.
(32:06):
And my educational pursuit consisted of a zigzag of heart, mind, heart, mind.
Bob and I however were committed to doing this thing, his death, together.
I would zigzag more than Bob and I would be bringing up the rear bit but I wasn't going
to stop playing.
I too would play the cards I was dealt and I had designated Bob the dealer.
After Bob and I had told our inner circle the news it was time to begin telling everyone
(32:30):
else.
Some might decide they want to keep something as intimate as a terminal diagnosis a secret.
But secrets are rarely good.
We tend to keep secret what we want to hide and if we want to hide something it tends
not to be good.
And in my experience the hiding only makes it worse.
We keep secrets out of fear, fear of judgment, fear of criticism, but succumbing to such
(32:51):
fears rather than facing them also rarely does us any good.
We sometimes keep secrets when we are afraid the telling will somehow jinx us, like when
we are pregnant and we aren't sure the baby is going to make it so we wait until the second
trimester to be sure.
The thing about this kind of secret though is that we often end up bringing more harm
to ourselves.
By not being open we offer ourselves no empathy.
(33:12):
The thing about shielding ourselves from the pain of sharing that we have had a miscarriage
for example by not sharing the news of a pregnancy until after we are sure is that if we do
have a miscarriage no one will have been on the journey of glee and destroyed hopes that
we ourselves will have experienced.
If a person never knew we were pregnant how could that same person warn of us the child
(33:33):
we lost?
It is only by letting people into our hopes that we can let them into our grief.
It is only by letting them into our sorrow that they will feel sorrowful too.
I'm a very private person and so is Bob even more so than I.
But I knew that without telling we would live in total darkness with few pinholes of light.
As someone who had to work hard to build support groups I learned that it is the only by letting
(33:56):
people in that we can gain support.
Bob and I wanted to go it alone.
I knew that not everything we would need to do could be done alone and that the only
way anyone would care to help is if they had an idea of how they could help.
I also knew that I would need emotional support someone to talk to someone to listen to me.
Bob knew this before I did.
(34:17):
Bob told me early on you will need someone to talk to about me.
You won't always be able to talk to me about me.
How did he know this?
I didn't yet.
I went for a while.
Bob and I told each other everything.
The idea that I'd be talking to someone else about him rather than to Bob himself pained
me and made me realize the slow separation we were facing.
(34:40):
Our opinion was that once you started talking to someone else about your spouse rather than
two of your spouse you were usually headed to trouble.
Headed for trouble.
Excuse me.
The thing you were talking about it was probably a paragraph on fear.
It really hit home with me.
(35:02):
I'm coming up on 65 and I finally got a glimpse of what the hell life is supposed to be all
the lies that we were told when we were growing up about this and that and Audie Murphy movies
and all that stuff.
He hid it.
I think he sounds like he came to grips with something.
I don't know where that comes from.
(35:24):
We don't know.
You experience it being his partner too.
Yeah.
Bob was a very unusual person.
I wanted to write the book just to share him with the world because he was gone too early
and he had a lot more teaching to do to his students and a lot more to share.
(35:48):
What always struck me about him was he really was pretty consistent.
If he thought something he followed the course and I just don't think that's a typical person.
I think most people can think something and feel something completely different.
He always seemed to have his emotions aligned with his mind.
I really thought his profession as a philosopher was kind of through and through.
(36:10):
It really guided.
A person has been coming through my mind as I'm learning more, putting things together
about Bob and trying to put a face on him and stuff.
I don't know how that sounds but John Lennon.
He had an understanding.
(36:31):
He didn't bullshit.
He was the way it is folks.
I am the way I am.
You guys should all get on board with you.
You are too.
That sounds like Bob to me.
It's funny.
You know, we're on this road trip and the Beatles.
The Beatles were played over and over when he was sick.
That's what Bob won and listened to.
He listened to the Beatles so much.
(36:52):
I play music when I'm sub-soup teaching and the kids just love it.
One kid asked me, hey, could you throw on some Beatles that hang on?
I got something for you.
I want a serious XM.
They are right now they are playing a limited edition Beatles station.
They were playing some Lennon and the guys individually and stuff.
(37:15):
The kids nowadays, they get it.
They want to go back to a simpler time.
Let's not get off on time.
We'll talk about music later.
You had one more thing you wanted to share with us.
We were talking about which one of them was going to be in.
Go ahead.
Do something a little different.
I thought we should end with some humor because, you know, as like I said, I like to end with
hope.
(37:36):
Actually, the book ends with hope in many ways that we have to say goodbye to Bob just as
I did.
The reader goes on that journey with us.
This is one of those respites in the book.
But in life, it was just one of our really funny moments while he was sick.
The chapter is titled, Juicing.
(37:57):
This sounds like it's going to be a good one.
Time crept forward as we absorbed the devastating news.
And before we knew it, it was mid January and school was back in session for me, Bob
and Liam, who was in third grade.
We decided to keep Maeve home because Bob wanted to soak up as much time with her as
possible.
We had to go forward.
(38:19):
We needed to get busy living.
Bob and I had classes to teach and kids to raise and we needed to get Bob's health on
track with good food because his body was attacking itself.
ALS attacks motor neurons in the brain and spinal cord, eventually impacting all voluntary
muscle movement.
Voluntary muscles are ones we control, muscles we use to do things like lifting our arms
or legs, speaking or breathing.
(38:41):
Because we can't control our ones like our hearts, we can't hold our heart beats the
way we can hold our breath.
We had a membership to a big box bulk food place.
Bob's folks had given it to us when Liam was born so we could get cheaper formula and diapers.
When I got home from work one day that month, there were huge quantities of vegetables all
over our kitchen table.
Bob was juicing.
(39:03):
His dad had gifted us a Breville juicer because our friends had told us juicing was the quickest
way to get good nutrients into Bob's body.
The juicer was wearing like crazy and Bob was standing there in a pair of cargos, a tank
top and a flannel shirt.
His usual attire.
Hey, what's going on?
I said.
I'm juicing, he said, ecstatically.
(39:24):
I can see that, I said, surveying the mess in the kitchen.
Giant bag of sweet potatoes, carrots, celery, kale, spinach, peppers.
There were so many ingredients and pealings and bags everywhere.
There's a video I want you to watch.
I left it on the computer in the office, Bob said, shouting over the juicer without skipping
a beat.
Okay, go watch it.
(39:45):
Okay, I laughed because he looked a bit nuts as he kept feeding the machine its vegetables.
I'll be right back.
Great.
He was so enthusiastic that he was almost maniacal.
I watched the video and it explained what he was doing.
Bob had found a woman on YouTube who said she had reversed multiple sclerosis with her
diet.
He was going to try to reverse the son of a bitch disease with food.
(40:09):
I walked back into the kitchen where Bob had a giant pitcher full of juice.
It was at least a gallons worth.
The kitchen reeked.
Did you juice the onions?
Yep.
Seriously, you juice the onions?
Hell yeah.
Oh, no Bob.
That's gross.
(40:30):
You eat onions.
You eat them raw.
You can cook them.
You don't juice onions.
That's going to be disgusting.
It's going to take over everything else.
Oh shit, it is.
He said dumbfounded.
Bob could boil pasta and heat stuff.
He made mean scrambled eggs because he had the patience to cook them on low.
(40:52):
But Bob was no cook.
I once had to mash the potatoes and those fresh, delicious babies were mashed so well
that by the time I realized how long he'd been mashing, they had turned into those
boxed made from potato flakes mashed potatoes dished out in school cafeterias.
You've got to be kidding me.
Let me smell it.
The container was a hulk green and the smell of onions was overpowering.
(41:14):
Yuck.
I can't believe you're going to drink that.
Bob smelled it.
Oh shit.
These spaced out moments were the Bob moments that were unforgettable and delightful.
Did you watch the video?
He asked.
Yes, I get it.
It's pretty amazing.
It's worth trying.
Let's do this thing.
Well, I'm not going to waste it.
(41:36):
I guess I've got to drink it.
Here goes Bob plugged his nose and began downing the entire jug, taking breaks to shake his
head and wins.
He managed to drink that entire fucking onion thing.
He was going to slow this ALS fucker as he often referred to it down.
Damn it.
We were going to fight this damn disease.
(41:57):
It was so gross and he drank it.
It was like a gun.
I hope the microphone wasn't, I had to turn my head away so I could check off the side
folks.
Oh my God.
It's a problem.
It's me.
And the whole kitchen's.
Oh, you know, you're writing, I was in your kitchen with you.
(42:24):
Oh my God.
He was wise and clueless at the same time.
That's when made it.
I think that you got to sell that on a t-shirt.
He was wise and clueless at the same time.
I'm going to tell that one to sue.
Maybe she'll start to say that I am wise and clueless at the same time.
(42:47):
Okay.
All right.
Okay.
Thank you for the chunk.
Thank you for the chunk.
I'm glad I decided to say, hey, go do something for a good different.
That's good.
So there's something, you know, when I was researching you, I was like, yeah, yeah, again,
(43:08):
I'm going to pull from here, pull from there and find all these little bits of information
and try to get into who the heck you are and stuff.
I signed up for your newsletter and in there, you stated something you posted recently on
Twitter and I'll read it.
When we are hurting, we close off in an attempt to protect ourselves from further hurt.
But closing off also cuts off possibilities for happiness and contentment.
(43:32):
The way forward is to open to new people and experience it and you left it with a hashtag
of love forward.
Yeah, that was, thank you.
I think that-
Well, I love you from my slogan.
Love forward.
That's a long slogan, but oh, love forward.
I like that.
I've never seen that.
(43:53):
So you better go out and get that baby trademark to know.
I wonder if people understand it without the context, but to me, what it means is you have
to put love into the world in order to receive it back, right?
And if we close up and we don't put any out, people don't see us as receptive to it either.
(44:18):
So when we're really closed, we become unapproachable.
So is that?
That's profound.
But is that part of growing up?
Yeah, I mean, we're getting profound.
But yeah, that's where I was headed with that.
Was the idea that loving forward means if you open yourself up to all kinds of new experiences
(44:39):
with people, there's possibility, right?
And there's hope.
If you close, if you close when you're hurting, which we do, it's a natural response.
But if we stay there, then we can't come out of it.
There's nothing on the other side of that.
(45:00):
Maybe that's a benefit.
It was a benefit of going through being disabled in some degrees or, well, not just being disabled,
I guess, about life.
If we're open to it, but maybe shit has to happen enough to us to a point where we just
say, yeah, okay, shit's going to happen.
(45:21):
And I think you've boiled something down.
Like shit happens.
You've boiled some things about life down into combining love forward with the hashtag.
That's really good.
I think something back to the beginning of the show, it's true that when we're younger,
we just don't know.
We don't know that there's going to be these hills and valleys.
(45:43):
So we go through them.
But I think what, at this point in my life, what helps me get to the other side of any
experience is knowing that I can, right, that it's happened before.
So even when it seems impossible, it has seemed impossible before.
So in a way, there's a takeaway from going through the, you know, it seems impossible.
(46:06):
We do learn some things, however, that impossible on the other side, it's still possible.
You know, like if you can just open yourself up mentally or physically or emotionally in
whatever way, right to, and to me, that's love, you know, it's the love that you put
out.
It's love to greet somebody in the hallway with a smile.
(46:28):
I mean, it is.
And isn't it fun?
I only want to stay here for a second because I do this as a substitute teacher.
I'm walking down the hallway and I see someone with a head down.
I was like, come on in.
And morning, it just, it's so odd that it stands out in a good way that people need to hear
(46:49):
some stuff.
Absolutely.
And you've lost that even more, haven't we?
Man, I'll worry.
That's another show we're going to, let's not go in there.
Oh my.
Hey, I want to go.
Before we start talking about stuff nowadays, all that takes a minute.
You're working on your first full-length poetry collection called Phantom Limbs.
(47:11):
And it's going to be available for pre-sell.
I read next summer as in this or next.
Yeah, next summer.
So I'm actually, I'm finalizing it.
And it's due to the publisher in just a few weeks actually.
And then I'm getting it ready for print and then it'll be up for pre-sales.
(47:32):
It's supposed to launch in September or October and it'll have a final date once they have
the manuscript and get it in the timeline.
So, you know.
Very cool.
Okay.
I want to do something fun that I've, every show I've been doing something at the end
of the shows, but I added a little something, a little toy I have now, what we're going
to do it now.
(47:55):
So, people are going to get annoyed.
I don't care.
That's on means it's time to shift gears with the road trip roundup.
These are going to be five questions I'm going to be throwing at Dirdra about her road trip
and experiences.
Okay.
So, question number one.
When road tripping, do you tend to do fast food or local diners?
(48:18):
I would pick local diners if I could.
I like going to the local places in general.
I've got to tell you about half of the people I've been interviewing so far do that and
Sue and I have talked about this with my wife about what we're going to be doing wrong.
I say, we got to start doing that.
I'm picking this up from people and learning.
There you go.
(48:39):
Because you don't know.
I mean, you could find some really good stuff, right?
Yeah.
Well, absolutely.
And Yelp is helpful.
Yelp will help scare you in a good direction.
You just taught me something professor.
Now hopefully I have what I was taking notes today when I was in your class.
He was in Yelp.
I like that.
All right.
What's a dream car for a road trip?
(49:01):
Could be something you grew up with, you know, sitting in the back seat on or something
you have now or something you would just like to have for a road trip.
Green car for a road trip.
I'm so torn.
It depends on his on the road trip.
On the one hand, you want a big vehicle so you could possibly sleep in it.
And I'm older, so I'd rather sleep in it.
(49:24):
It's been a tent.
But you know, like a Subaru or a minivan or something like that.
On the other hand, be really fun to go in a convertible.
I once went in a Jeep with top off and we would just throw on the bikini top like this
in the 90s when it was raining.
And that was super fun.
But I don't know now.
(49:45):
I might.
It was hard to sleep in a Jeep, but.
Yeah.
It depends again who you're with and where you going.
But the road trip is question number three.
I really love this question.
Last cassette or CD that played while you're on a road trip.
I missed the first part.
You cut out on the last last cassette or CD that played while you're on a road trip.
(50:12):
Oh, wow.
I would say I was probably blasting clean because I usually am.
Oh, queen person.
Yeah.
Very good.
Okay.
You got to have good speakers for me because their sound is so clean.
You've got to be able to experience that way.
(50:33):
Number four, straight up.
Cocoa Pepsi.
What are the other products?
Not just here's a Coke or you could be Mountain Dew or Nehigh or whatever they produce.
It's so funny.
I think it depends on what you're eating.
Oh, I've never heard this part before.
(50:54):
Yeah.
You got a point.
All right.
So you're slightly different.
So maybe you want your Coke with your fast food more.
Okay.
Well, well, maybe you want your Pepsi with.
Oh, you're talking about just the difference between Coke and Pepsi or Coke.
Folks, she's ripping on the Coke product.
(51:15):
So at McDonald's, you would get a Coke, but if you're going to go to Mappa restaurant
in whatever city you might then therefore Pepsi please.
I feel like Coke cuts salt more.
Does that make sense?
Like I feel like Pepsi feels a little more syrupy or something.
(51:36):
And so I feel like if you're eating something really salty, Coke is where it's at.
And maybe the food's a little more, I don't know, saucy, subtle, I don't know, Pepsi.
Have you tried Coke Zero yet?
Not a long time.
I think I tried it when I first came out.
No, Coke Zero.
I'm in Europe, but in October they didn't have Diet Coke because I said Diet Coke Zero.
(51:59):
Okay.
I came home.
I went to the store and I was Coke Zero.
I dumped the silver can that I Coke.
I mean, it tastes like Coke.
You bring up an interesting point.
Okay.
Number four, you go wherever you want to on this.
Favorite road trip memory.
Oh.
So I went cross country by myself at 23.
(52:27):
And you know, this was 1993.
And so there were no cell phones.
She's over 50 folks.
Yeah.
I was 23 years old and I, it was 93 and my mother had died three months before.
And I now lived in New York.
I returned to New York, my place and my birth.
And she had lived in Arizona.
(52:49):
I had spent my summer with her when she was dying.
And I'd gone back to New York and I decided I was going to go cross country as like an
independent woman in the world without a mom.
So that was it.
I think that, yeah, but that carries me back to what we were talking about earlier with
how I view your writings evolved.
(53:13):
That seemed to be maybe the early phase of you becoming you because that was ballsy.
That was bold.
And you were probably cranking queen.
I was cranking and I was, I was singing out loud a lot.
And I know it was just, I was smoking at the time.
So this was one of my smoking periods of life.
(53:35):
Oh my God, I'm sick.
And so I, I told myself no more than one cigarette an hour, but I was alone, you know.
So like when the hour clicked, it's like, okay, get 10 minutes.
It was 10 minutes.
It was 12 hours today.
So I'm like, I've got 10 minutes of entertainment here.
But yeah, it's memorable being alone in that car and just, I just felt really, you know,
(54:02):
I'm here and I'm going to survive somehow.
And this is part of like proving to myself that I'm going to.
You've done that a lot, I think.
I think so.
And you've taken yourself up on it and you haven't been afraid to do it.
That's where I think it's different people do different things in that you're not afraid
to do it.
I think I've been afraid, but I've also known the well, another one of my lines is the only
(54:27):
way out is through, which I guess is another loving forward kind of.
I like that.
Yeah.
But the only way out is through.
And so I would, I don't want to do it.
I don't want to do it.
I'll kick in ice cream and then I do it.
Yeah.
You got to be able to reflect about yourself.
And I think that tells you a lot about yourself.
Hey, we're going to wrap it up.
(54:49):
And I want us to stay on, but I'm going to click it off in a second for the listeners,
but you and I stay on.
Okay.
So I'll just say right now challenge relax everybody and keep listening.
And thank you very much.
Thanks for listening.
Check out previous episodes with new ones dropping each Tuesday.
(55:11):
If you don't see a synopsis of this show where you're listening, visit our website
at lifesarodetrip.podbean.com for more information on this week's guest.
This is your host Scott Martin reminding you that lifesarode trip.
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