April 9, 2024 • 47 mins
This is an encore episode while I focus on my teaching.
This week's guest is Nate Methot
May is National ALS Awareness Month (Amyotrophic Lateral Sclerosis or Lou Gehrig's Disease) so we're ahead of the calendar, but I couldn't wait to drop this episode any longer. You see, Nate is now in his second decade of dealing with this debilitating disease and his message is too important to hold.
As you'll hear in this episode, we read parts of his book, A Life Derailed: My Journey with ALS (Link), Nate's speech has been affected -- something he unnecessarily apologizes for -- but we wanted him to read certain passages so you know it comes from his heart.
I want you, the listener, to get the full scope of Nate's travel from bouncing quarters before his diagnosis (Video -- Nate's in there!) to Nate getting out of bed as the disease progressed (Video).
Even as he has been weakened by ALS, Nate has become stronger. Few of us have the strength to share so much with others. It's a human condition that we so often overlook.
I was honored to be a part of this recording.
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 for this road trip is Nate Meffat.
Nate is the author of A Life Derailed, My Journey with ALS.
Now, if you've probably heard of Lou Gehrig's disease, that is the disease we're talking
about, it's amiotrophic lateral sclerosis.
It's a nervous system disease that weakens muscles and impacts physical function.
So I'd like to say welcome and how you doing, Nate?
(01:21):
I'm doing a little stuff.
And folks, Nate and I were discussing things and he's up for doing some of the reading
so you know it coming from his heart.
His book is written from his heart, but he's going to read the preface and also the closing
and I'll read other pieces that we've pulled out in order to fit them into the show just
to give you a good idea about what the book is about.
(01:43):
So when Nate, when you're ready, go ahead and read the preface for us.
Will you please?
Okay.
And then we thought I'd write a book.
I never imagined that story from my life would be interesting when meaningful enough when
you went to read.
So that's changed over the years.
(02:04):
On no one or no one in any sense of the word.
Enough time has passed since my second life started.
I've had the opportunity to reflect.
I've had more than enough time.
It's been 10 years since I went through mourning at the hospital.
(02:30):
Everything else with the Amy O'Trophie, well versus August 2011, a month after my 27th
birthday.
It feels like more than a lifetime ago.
It may seem like everything changed in the one day, but that isn't the truth.
(02:55):
I've been navigating the not so steady stream of changes.
Well long before they had any label.
From my first Franklin to my daughter's visit, to Daniel, my first wheelchair, and everything
yet to come.
(03:17):
My story is about change and what they are.
I'm repeatedly broken in the pages of this book.
I gradually become very physical in the Amy in the words for me to fight a new person.
Like our winter and the adult, we fully around had all my struggles bring mental maturity.
(03:46):
It may seem like a sensitive subject by joining with the OS.
A few tears were weft in the process of running.
I've been so linked and gradually well known by this life, I often find myself emotionally.
(04:09):
There's no interview on you for this book.
In the after an input I received from the stories, purchased myth, less limited to correcting
a few factual details.
The way others may have seen things is hardly the point whether or not it's entirely accurate.
(04:35):
It's just my reality.
Okay folks, just so you are aware and most people know blue gerry's disease and ALS is
how it affects muscles.
Well, it's affecting Nate in his reading ability or how his function is well.
Go ahead buddy.
There's some important things for my speech that I really must thank him.
(05:01):
You don't need to apologize for it.
I mean, that's the heck with anybody that might have a problem.
So we're going to skip up to another point and I'll do some reading for a while.
Rob and I sat in the same classroom at college, graduating in the same year with the same
major.
The party during senior week, carpool to work, spent days golfing and skiing and nights drinking.
(05:26):
He'd moved with friends to what had been a seasonal rental, half ski shell, half rustic
lodge on the mountain road in Stowe.
One Saturday afternoon in the winter of 2010-11, which Rob and his roommates had spent skiing
while I was on my ass at six Patrick, I drove up to their place.
(05:47):
We were drinking beers the moment I walked through the door, preparing for the night
at the bars.
There was a little like a frat house and I had to join in playing quarters.
And by the way, folks found a video of Nate and his friends playing suit quarters.
So that's going to be on the Life's a Road Trip website.
So then I'll get back into it.
So they're playing quarters at the kitchen table.
(06:09):
It was immediately obvious that I couldn't keep up.
I'd lost my dexterity and feeling in my fingers.
I didn't consider telling anyone what I say.
I didn't have an explanation.
I had trouble picking a flat quarter up off the table and struggled to move it into my
palm.
I looked at my friends in their effortless movements.
I couldn't understand how they did it.
(06:30):
I felt like I had a new set of hands.
I couldn't control them like I used to.
Quarters is a game of speed and much of skill.
Every additional second between shots is more time for the opponents to catch you.
Yeah, this is going to be fun when that video just had me roll with on the floor.
Nate, it wasn't just a problem of ineptitude and subsequent embarrassment.
(06:53):
I had to drink more.
I kept losing and was constantly trying to finish a beer, making things worse.
I shouldn't shouldn't have gotten up from the table, walked away from the problem.
That wasn't me, not the person I knew.
I knew we'd head out to the bar and I couldn't handle it.
I couldn't drink like I used to.
A few beers in my balancing coordination were shit.
(07:15):
I couldn't binge drinking at PBR, which is absolutely ribbon, and try to fit in.
I'd surely embarrass myself.
Suddenly, playing quarters or cards or in a major way, like falling down the stairs,
there was no problem in drinking like that, but what could I tell them?
I wanted the curl up in a ball in the corner and escape.
(07:36):
I didn't know what to do, so I tried to find a way out.
I snuck away down the stairs and saw the coat-covered couch.
Maybe I'd just pass out here and they'd leave me behind.
Maybe I could just leave, get in my car and drive home.
It certainly wasn't the first time I'd had a bad idea.
They call it Irish goodbye.
I've done it before, too drunk an unable or unwilling to tell anyone I had to surrender,
(08:01):
but never by car and never before the night had even started.
Running in the relative calm in the dark room, away from the drunken noise upstairs,
I made my move.
A few feet from the escape, I desperately needed.
I grabbed my coat, put on my boots, and snuck out the door.
I got in my car and turned the key.
I was drunk.
I knew that, but I had to get out of there.
(08:24):
That was more important.
The driveway was wide near the top, but narrow toward the road.
There was a snow-filled ditch running alongside the street, a culvert under the driveway.
I'm in the dark, but absolutely clear-headed.
I didn't want to back out into the mountain road with its 50-mile-per-hour speed limit
and risk a high-speed collision.
Thinking I'd turn the car around, oh, Nate, trying to navigate a packed driveway, I backed
(08:50):
my Subaru toward the ditch.
Before I knew what was happening, the rear wheels lost traction.
I couldn't pull forward.
Oh, shit.
With the rear wheels still spinning, I pulled the emergency brake as hard as I could, hoping
the loss of 140 pounds from the front seat wouldn't cause the car to lurch backward.
I swung the door open and stepped out.
(09:11):
There it was.
Front wheels still firmly planted in the pavement.
Rears somewhere back there suspended above the snow.
Typical of my inebriated state, the severity of the problem didn't really register.
Damn, hope it stays.
Forced to abandon my escape, I re-entered the house with the tail of the running car.
I was getting something out of the car and it must have popped into neutral, I told everyone.
(09:35):
A lapse poured out.
My drunken buffoonery was exhaustively ridiculed, but I think they believed me.
What were you trying to do by telling them what you told them and thinking that you'd
be, why did you feel like you were getting away with something?
This must have been one of the early times before you were diagnosed, right, Nate?
(09:58):
I was, for sure.
That's the winter before us, I guess.
It's quite a viable thing.
I had to escape by telling them.
I couldn't tell them.
I didn't know what to tell them.
(10:19):
I wasn't even considering telling them anything.
And that was no other explanation than what they were doing if you can't tell someone
what to tell them.
That there's a problem.
You have to avoid this situation.
I was in that situation.
(10:40):
So that's what I got really needed to escape.
Family, and I tried to think of all.
Well, we're going to jump to the foregone conclusion, and this is where it really is becoming an
issue more of the escaping part.
(11:02):
And you're not wanting to face others.
The foregone conclusion.
I spent a lot of my time being lonely in my life altogether, but certainly since my symptoms
began, when I started to notice changes, I didn't know what happened.
I was afraid to share it with anyone.
I was afraid someone would find out.
And finally, I received my diagnosis.
My instinct was to protect myself further.
(11:24):
I wanted to crawl inside myself, engage my armor, and keep everyone out.
I never wanted to tell anyone, in part because I couldn't accept it myself, but also because
I was embarrassed.
I'm still somehow embarrassed.
I was always afraid of my faults, afraid that the world would see faults in me, whether
they actually existed or not.
(11:45):
And this new fault arrived, I became all the more guarded.
I pushed them away.
I was spent my life protecting myself.
I was always the little kid, and I was always picked on and outright bullied by my older
friends in the neighborhood and assholes in middle school bus.
I learned to stand up for myself, fight and make jokes.
(12:08):
I forged my identity.
Nothing bothered me.
I was strong, tough.
But I also think it made me close off and unable to display that dreaded, but all too
important quality vulnerability.
I don't know why anyone is surprised that men grow up unable to show emotion or ask
(12:30):
questions, but rather feign confidence all the time.
That's what we were taught.
That's what men are, or so we were told.
So that probably was, I would think that 99.999% of males are taught in a certain way to be
tough and not face our problems.
And here you are sharing that with us.
(12:51):
And I think you make an awesome point in your writing, Nate.
Was it this sort of thing or was it when you finally got to the point when you were writing
when you could look back and see the stupidity of maleness?
Where do you think you picked that up?
When do you think that that triggered your trip?
No, until I was writing it, or me.
I mean, silly, after my diagnosis, I mean, I've learned that one more well recently.
(13:18):
And many other people have to, I might not miss me on, but I didn't know there was an
other way, really.
And I think I said I grew up around the big group of guys in the Seminole, Suburban
Emory.
And male, what kind of culture?
(13:41):
Very poor, well, and very sport.
Having this love sports, jokes, is being a tough guy.
That's what it was.
That's what I became.
I mean, really, I didn't see the narrative, like I didn't see the narrative for all of
(14:06):
us.
I saw it.
And I was really impressed for the million, not only being afraid anymore, but why shouldn't
you be afraid of filming now?
I mean, I was learning, being that man's man.
(14:27):
You're really...
You have to be able to talk.
I mean, yeah, you're really afraid of so many things.
You're so boring, then.
Well, I don't think, why should I have that fear?
So I don't have that anymore.
I don't really care.
I mean, the only one was I would never have written a book.
(14:51):
I could never have written that book.
I saw a man that I used to be.
Yeah, once you sit down and start writing, right, you're sharing so many things with other people
you don't even know.
So I guess that would be probably the point where you grasp that thought and that idea.
Okay, well, speaking of grasping a thought, we're going to talk about human golf and grasping
a golf club.
(15:13):
So Nate writes, on a drizzly March day in the 40s, as in the temperature, long before
CCV, which is the country club of Vermont, or any other respectable golf course open
for the season, four of us played nine holes at Lang Farm in Essex.
It didn't go so well for me.
I was miserably cold.
I couldn't grip my clubs.
I'd never before paid any attention to my grip strength.
(15:37):
Gripping a baseball bat, tennis racket, or golf club isn't something to focus on.
It's muscle memory.
And afterthought, but the fundamental task was almost too much.
With every swing, it felt like the club would fly for my hands.
Failing that first step took away any chance of success at all of the other things that
make up hitting a golf ball.
(15:58):
I tried to blame the weather, but none of my friends seemed to have the same trouble.
A few weeks later, Rob and I went to the driving range, and I found though my grip felt better
in the warmer weather, that wasn't it.
I was used to shaking the rust off each spring, but this was much more than that.
I couldn't say that it felt like I'd never had swung golf club before, but that wasn't
(16:23):
it.
It felt worse.
It felt like I was a different person.
Just going to stop on it there.
So we're up to a few instances now, Nate, where you were noticing things, probably was
starting to tumble in on you, because it's evident in your writing about things and not
wanting to share folks.
And to go along with you pulling away, well, I'll read a little bit more and you folks can
(16:50):
pick up on how much Nate does pull away.
We're going to read a little bit on, I grew up in the backyard.
I grew up in the backyard on the sidewalks, streets, and driveways, and then the half
dozen parcels of woods that made up the neighborhood.
My brother and I and the handful of kids close by grew up with each other's supervision,
mostly outside.
(17:11):
We rode bikes and built tree forts.
Three that I think I can think of.
We played basketball in the driveway and roller hockey in the street.
We spent winters walking with sleds to hills in the woods, known only to kids.
We made up and adapted games from poor golf to tree ball to zero to.
What was what's zero to Nate?
(17:33):
That's a game you guys came up with.
It's a wiffle ball based, it was a baseball or a wiffle ball based game.
It was basically just a game we made up for when we didn't have enough people to play
it for a game.
The reason it's going to go there too is that the count is always zero to.
(17:54):
You always have no rules on two strikes.
So one strike means zero on the slow-yow.
And then you go on in that same chapter and talk about going out for run.
And you were noticing that you just weren't the same.
So you thought, okay, let's get into biking.
(18:15):
And you use a line in there about how you felt like you're a 90-year-old man, I'll get
groceries or something, and just going slow.
So here again is an example of ALS creeping in on your life.
So perfecting seclusion.
Now we're getting down to some nitty gritty about you, Nate.
A lot of people never go a single day without talking to another person.
(18:40):
I've gone many days on many occasions.
And you write, in October of 2011, I moved from a small room in my four-bedroom frat
house on the 55-mile-per-hour highway to Stowe Mountain Resort to a bedroom apartment
with a garage on Main Street in Waterbury Village.
The first recipient of an ALS diagnosis, the fresh recipient of an ALS diagnosis, here we
(19:05):
go, turning the corner.
Now you know.
Unable to summon much focus for anything, I made a heartfelt effort at finding a roommate.
I asked two people, rationalize I could afford the rent on my own and resign myself to living
alone.
I saw myself walking in the restaurants, bars, post office, drug, and grocery stores in the
(19:26):
village.
It had been years since I lived in a walkable town.
I missed it.
I didn't immediately get the internet hooked up, for whatever reason, overwhelming depression.
My laptop picked up a unprotected signal that, as long as I kept it in one of the few spots,
worked okay most of the time.
It was a one-bar signal that was constantly disconnecting, attempting to and then, yes,
(19:50):
reconnecting.
At night, I drank beers and listed the baseball playoffs and the old Bose Wave radio I inherited
from Dave's, the division playoffs, the Yankees Tigers, championship series, Rangers Tigers,
and the World Series, Rangers Cardinals.
Sometimes I'd sit in the dark.
I didn't really care about the outcome.
Maybe I relished the peaceful nothingness at sitting alone in the dark.
(20:13):
Maybe I wanted to prove myself that I was strong.
I could handle whatever emotion or self-made depravity I might face.
I'd been trying to prove it in my entire life and in most vulnerable state.
And consciously, my ammo didn't change.
I didn't need anything or anyone.
27 years old, newly diagnosed with a terminal disease.
(20:35):
I sat in my apartment alone.
I didn't think this is the time to do something.
I didn't think anything at all.
I was tired and broke and hiding.
That is all I had in me to do.
Sometimes, while I'm reading this, and I've read the book a couple of times, the emotion
starts piling up on my shoulders, but we're going to keep doing this, buddy.
(20:58):
Okay.
There's another hard part.
This stuff in the closet.
At the top of the stairs was a closet.
I filled it with memories of the day.
I filled it with memories of the day.
I moved in hiking boots and running shoes, basketball and tennis racket, roller blades,
baseball glove, hockey stick, skates, pads, helmet, skis, poles and boots, golf clubs
(21:21):
and frisbees, backpacks and duffel bags, all piled in a dark corner just outside the door.
I bought the baseball glove in high school.
I'd hardly used it since college.
I played catch by the dorms and long-tossed with it in the park.
It followed me to every apartment.
It seemed like a lifetime ago that over a friend's offer to steal it after his shift.
I knew that I'd use it forever.
(21:44):
I thought that forever would be longer.
When I paused there, we're going to leave a spot in case somebody wants to do it.
I'm going to drop an ad here.
The gift of time.
A strange thought came over me when I contemplated life without work.
I've been given the gift of time.
As delusional as I knew it was to think that being diagnosed with a permanent illness
(22:08):
wasn't any sense a gift, the thought still remained.
Never in my adult life had I had this kind of free time.
I couldn't help but dream about what I'd like to do with it.
Every dream I imagined fell flat in the face of reality.
I'd walked to the window, completely deflated, looked out and wondered, what can I do with
(22:31):
my days?
People would tell me to live life to the fullest.
I wanted to laugh in their faces.
I could have done almost anything just a few years ago, but can I live life to the fullest?
I can't seem to do anything the way that I want to.
This is after the diagnosis, you starting to pull away.
And you're going up again, Nate.
(22:54):
I quit my job.
I didn't know what to do with myself.
There's a sentence towards the end of that chapter and it says, line was far easier than
the alternative.
So here you are again.
Way easier.
Of course it was.
Were you trying to hold, were you trying to make it easier for other people or for yourself?
(23:15):
I don't think I've seen it for other people.
It's easier for yourself to not, I mean if you tell anyone, you'll have to go through
it yourself in real way.
I think it was more overwhelming to me to tell everyone.
(23:37):
And that's actually faced in reality.
You're in two full-man bad news.
You see their reaction and you stay out of serious sleeping.
That makes you realize, you might be more than you wanted to.
(24:00):
That pretend it was.
So to me, it's easier to not tell everyone.
And I didn't tell some people, but not more than you know, a handful, maybe ten.
But yeah, that's where it was at.
(24:22):
Well things did change because I'm reading in another chapter.
On February 7, 2013, I posted the following.
Dear Facebook, I have some news I need to tell you.
In August of 2011, I was diagnosed with ALS.
That's Lou Gehrig's disease.
I should have told you all, all long ago.
And I should have told you face to face.
(24:43):
I apologize for the inability to do so.
I just couldn't handle the overwhelming dread of telling you and the look in your eyes when
you found out.
I still can't handle that look in your eye.
If I've ignored you, don't call you back or haven't kept in touch.
I'm sorry.
I just didn't recognize myself.
And it's been very difficult to accept that I'm not who I used to be.
(25:06):
I guess maybe I thought if you didn't know, then maybe it wouldn't be real for you in
the same way it is for me.
I just don't know what else to say except that I'm doing fine.
And I appreciate those of you who have supported me.
So then you're right.
A lot of people came out of the woodwork and sent me all varieties of messages, most of
them simple and supportive.
(25:28):
Some didn't.
People I wanted to hear from.
A very little change in their life.
There wasn't as long as long line of old friends knocking at my door.
While I was always appreciated every bit of a support, a few stood out in the brain searching
for negativity.
Allow me to briefly indulge in the George Carlin style of labeling absurdity.
And here's something that just boggles my mind.
(25:53):
So you're right.
One Facebook friend, some I hadn't talked to since high school, and I'm not sure I
talked to in high school, sent me a doozy I'll never forget.
She told me that this was God's plan, that I had been chosen because of my strength.
Side stepping the simple minded blanket euphemism of God has a plan.
(26:14):
God struck me was the utter illogical insanity that was intended to make me feel better.
And I suppose to feeling pride and being a martyr, martyrs die.
I'd like to live.
I got the frustration with you reading that.
Was there.
(26:35):
I live through it.
Yeah, I suppose.
Now, while now we're going to get into a little bit of something else.
And I'm skipping you meet someone.
I believe that that's what this is.
Yeah, it is.
(26:57):
She invited me to join her for a show at higher ground the next week.
This is girl you've met.
Her friends boyfriend played keyboards in a band.
He made plans to meet in nearby J.C.
Park beforehand.
She'd bring a pizza.
I stopped on the way and bought a bottle of wine at a gas station.
I forgot to bring corkscrew and glasses.
Accompanied by an unopened bottle of wine, we ate a few slices of pizza at a picnic table
(27:21):
by the parking lot.
We'd walked to the mobile station on the corner in search of a corkscrew.
They didn't have one.
We crossed the street to Gracie's and I spent $1.09 on a two piece red plastic device, the
device we needed.
The only a few hundred yards, it felt like an adventure to my legs.
I had to maintain a steady gate at Kim's side, the person that you met.
(27:42):
I kept those thoughts to myself.
In the cool air of an April evening in the park where I played Little League Baseball,
we drank from the bottle in the oncoming darkness.
Kim wasn't the least bit phased by any of it.
We could have bought paper cups, but she didn't care and I didn't care.
We drank from the bottle.
The wine had run out.
We got into the car, into my car and drove around the corner to the show.
(28:05):
As we stood in line at the ticket window, I struggled to get my wallet from my back pocket
with my freezing cold, useless hands.
I almost gave up and asked Kim to reach in the back pocket in my tight fitting pants.
That I even considered asking shows how much I let my guard down.
That's true.
I really liked reading that because yeah, something changed when you wrote that Facebook post.
(28:28):
It was really cool.
I was more comfortable with her because I felt like I knew her from the past.
I didn't know her from the past, but very normally, well, I felt like I didn't know
her.
I was comfortable with her before, safe and protected.
It's a different feeling than most of them.
(28:55):
I didn't feel like I had much.
I still have.
Clearly.
But all I saw was.
Yeah.
Yeah.
A lot less.
A lot less.
Things really start to change for you here.
We ordered maker's market side bar, wine from a bottle, straight whiskey.
I love this girl.
With a drink in my hand and a heavy buzz, time disappeared to the crowd and the music.
(29:19):
When it was time for another, I could hardly say no.
So what if I drove into in from Waterbury on the walk through the lobby after the show?
We decided I couldn't drive home.
Came inviting me to stay that night at her place and she'll burn and got on the phone
to a cab.
We stood out in front of the building as the post show crowd slowly dispersed.
(29:40):
A green cab Prius picked this up in the circle.
I tripped on the curb.
Oh, Nate.
And stumbled to my way to the car.
Yep.
I'm a little drunk.
She walked me to the living room couch and told me again, but she still felt she need
a reason that I was just not moved that she had just moved.
Her bed was tiny and I had to sleep on the couch.
(30:03):
Well, you also found out that there was what two ducks in a cat.
So it was a hairy couch.
I'm sure.
I guess anyone who would have had vacations in the situation, but I really didn't.
I was happy enough.
She invited me back.
The couch was already more than enough.
As I sat on the couch, she leaned in.
Yeah, she leaned in to arrange me a blanket.
(30:25):
We somehow fell into a kiss.
She wished me good night, excused herself and a room.
And I lay back with a smile.
There you go, man.
That to me as a reader of this book, that was a pivot point for you.
Were you still pushing this way or not believing that it was possible?
I mean, when I had four into it, I waited and then we have expectations for her.
(30:55):
When you got to choose one whole friend and wish me enough and I don't know.
I didn't have a lot of expectations.
There was more leisure for me to not be as fearful.
Well, one of the things Nate for me as the reader and I read the sentence, I felt confident,
(31:17):
even prideful, happy to be out with my girlfriend.
That tells me.
Yeah, I was very excited about that.
I felt whole, I mean, first one, and a lot of times I felt safe and whole.
And they'll tell me happy and contented.
(31:40):
Yeah, of course, that's, but a new relationship will be there for you.
Later on, you guys stayed together and you wrote that Kim accompanied Mom and I to one
of my all day ALS clinic clinics later that summer.
So obviously she you let someone in finally.
(32:02):
Yeah, for sure.
And I'll say, and you guys even moved in together.
And but there's something I want to bring up to you, buddy.
You wrote here's about your flat with Kim.
I was a two bedroom flat with the living room in the center, a galley kitchen and a washing
dryer in the lime green bathroom.
Yee, you guys didn't want to change that color.
(32:26):
You kept the lime green bathroom.
I mean, you're so wonderful.
I don't care.
And you went on to write when you're about with Kim that, but it also filled another massive
void in my life.
It's given me a sense.
You're talking about now you're starting to write.
But also give me a massive void in my life.
It's given me a sense of accomplishment.
A wide variety of tasks, large and small, simple and complex provide people with a steady stream
(32:50):
of accomplished feelings as the years have passed more of those tasks have grown out
of my reach.
It may seem unlikely to miss another laundry or the dishes, but I do.
You may dread the next snowstorm and the shoveling it brings.
I miss that feeling when you're done.
So accomplishment that is a male thing.
But I think that that's a good male thing.
(33:11):
It's a human thing.
Good point.
And I really, I really do.
I mean, everyone has to have this purpose.
I mean, like all machine things is a purpose.
And everyone has to feel a purpose.
(33:34):
And that's what, I mean, really that's what, right?
It's not for me.
That's what, things like this have been for me.
And it's for me, for me.
That's restricting when you can accomplish physically.
And it points me out.
And it's me over and trying to find something else.
(33:56):
And I'm so not cool.
I'm so not there entirely.
But it's better than nothing.
And we had that simple little sense of accomplishment for me.
And I was like, I'm the only one doing the distance.
Or whatever it is.
(34:18):
Like, even driving your car is like a certain sense of freedom
and accomplishment of doing something.
And when you're actually doing something,
or the world doing something, it goes away.
And it's very difficult.
I hope people grasp that because so many things that we probably
(34:42):
would miss, not be if we weren't able to do them.
But you and Kim went on a vacation to Puerto Rico.
And it was there you proposed.
So you two were officially an engaged couple.
I don't want to get into some of the other things in the trip
and that's for the people to read on their own.
(35:05):
But then things took a different turn after you guys,
while you guys are moving into your place together.
You wrote two days later, while Tom and Katie carried a couch
through our sliding back door, Kim took me aside.
With my friends thinking we'd snuck away for a kiss,
Kim told me she couldn't marry me.
Or that the wedding was off.
(35:26):
I don't remember the words.
I remember the meaning.
Here again is you went back to that safety trigger,
where you kind of beat yourself up, man.
And you wrote that my waffling, hesitant mind would never have been so set.
And that's coming off and trying to deal with as your means of protection,
(35:47):
self-protection, you pulled back again.
I don't know.
I'm not going to ask you.
I mean, it's worth a link.
I mean, one thing about having a US,
if anyone wants to have you,
it's easy to see that as the only person that would.
(36:08):
So it was easy for me to want you to marry me,
and whatever's worth it, and that I mean,
so I've never thought it would happen.
So when did it happen?
It was, you know, again, it kind of went back to that scene.
(36:31):
It's like, it's quite just her.
It's quite not having you.
If it didn't work with her, it's quite like it was, period.
So, you know, I don't know.
We're going to jump to a piece called Changing With Change.
For years, living alone, I never gave up on anything.
(36:54):
I couldn't. No one was there to help.
There was a determination built in my mind
and knowledge of frustrations would always come,
and I had to get through them.
So here you are rebounding.
It seemed, and maybe you're coming to grips with ALS.
One of the things that I was having problems with
when we were talking about doing the show was I didn't want to read too much.
(37:16):
And I want to leave a lot of it to not just interpretation,
but for information for the listeners if they want to pick up the book.
And of course, the link is going to be to the book is going to be on the Life's A Road Trip website.
Okay, folks.
So we're going to start wrapping up the book part with,
towards the closing.
And I think it's very powerful.
(37:38):
It's called Full Over Grat.
And Nate wants to read it for you.
So go ahead, buddy.
I have a lot of...
A lot of...
They're large and they're small.
They're real and they're imagined.
Represented by questions.
Well answered and unanswerable.
(38:01):
Like Clims and Woods, at best.
They exist in my mind from yesterday and I was having a go without resolution.
One of my questions.
Things I cannot know is whether I were there for a sold-down.
(38:22):
Whether I could have sold-down.
I like to think the things I got as I imagined.
If I wasn't out, this particular card.
I wouldn't have to learn.
So there's no way of knowing.
I never had the chance to grow up.
(38:45):
But I really...
I don't think of myself as an adult.
How could I?
I was just getting started.
A few short years of course.
When I watched my way.
I went back to my wife's four mistakes.
One now had my lens on them.
(39:09):
I can't go back to the person I was.
I can't bring his abilities forward.
If I can combine the two versions of myself.
I think of the fair, in decision, inaction, avoidance.
That's so often done in my life.
(39:32):
I never knew what I wanted.
In school, in career, in my social life.
And surely, most likely, with women.
I went back and see someone really compelled to pursue anything real.
I never tried to answer last most difficult questions.
(39:56):
I never took real time to conserve my path.
I still hadn't ever tried to fight with anyone.
I still had my confidence.
I had all the answers.
No one's forced.
I was a child.
I didn't.
(40:17):
There's some things I came up.
I came up with a dual one.
The things I didn't do.
The chances I didn't take.
The opportunities I missed out on.
Because I was scared.
There were a lot of them.
I lay awake thinking about the girls and they could not have put in my life, but were.
(40:40):
I think in the memories we care assured.
What I need to be lonely, if only I have in my mouth, instead, and thought to be real.
It's more least cliché in this book.
Put myself out there.
Not too much of my life.
(41:04):
Things that happen to me.
I measure how much was my choice.
I want to tell people, anyone who will listen, that you drift through life this way.
Don't take the path.
Just because I lay your feet.
(41:27):
Run away from your fears.
They're scary.
I guess they're significant.
Make choices in your life.
Don't lay life.
It's yours for you.
Talk about the main things.
When someone you trust,
will you feel to communicate your thoughts and feelings?
(41:49):
Don't win.
Your fear of embarrassment.
Make decisions in your life.
With a listen, tell me your friend asked questions.
You'll be better for it.
Talk about your fears when they're family and friends.
Bring the man in the open and see if they're real or imagined.
(42:13):
Spend every day alone and take time to reflect.
Ask yourself.
And what have you?
It's just one and one, and then just don't be invited.
Or able to reinvent myself in the way that I like.
A more than one to learn from my mistakes.
(42:37):
Thanks for doing that.
Because it's coming from your heart.
I'll bet.
But you know what?
We can change things a little bit and have some fun.
It's time for the road trip roundup, man.
I'm going to be asking Nate five questions about his relationship with road trips.
So here we go.
(42:59):
When road tripping, do you tend to do fast food or local diners, Nate?
When you're younger, you don't care when it's going to go to the gas station.
Question number two.
What's your dream car for a road trip?
(43:21):
It could be something your family had or something you'd like to top in with someone else to go on a road trip.
I mean, let's switch it, man.
We can win those.
I can ruin the machine spins.
(43:42):
Careful wins.
Okay, question number three. Now you're old enough. You might actually go one way or another on this.
That's Alaska set or CD that played while you were on a road trip.
I have no idea.
I'm going to see the idea.
Any bands that you can mention?
(44:03):
I mean, one CD I used to listen to was with our truly peppers, blood sugar, it's like magic.
That's from 1991.
Oh, okay.
We've all got our favorites.
All right, straightforward question number four, buddy.
Coke or Pepsi?
No, I really don't think so.
If I had to choose my Coke, but everyone don't think so.
(44:28):
I don't have much sugar.
Yeah, I was wondering about how ALS might be affected by certain things and how much you have to think about it.
I don't know if we have one or not.
All right, last one.
You take this wherever you go, whatever road trip you want to refer to.
But what's your favorite road trip memory?
(44:49):
I'm a good one.
So after college, I am.
This is in 2007.
Two of my friends and I took a silver foster from the mall to California and back in two weeks.
(45:11):
Oh, wow, that's a long way.
Basically, we drove the entire railway stuff from gas.
So don't let the other one stop.
Let's forget.
That's the rule.
You can't stop the use of nothing.
Well, let's meet in gas.
But we went to one of the national parks.
(45:36):
We went to Las Vegas.
I think it was just, it was rough.
And we were 22, 23, 23.
That sounds like nothing could hurt you.
Yeah, that's a lot of laughs.
Well, we're going to wrap it up there.
You and I stay on for a little while, but I'm just going to close with Challenge Lacks everybody.
(45:59):
And thanks for listening to Life's A Road Trip.
Thanks for listening.
Check out previous episodes with new ones dropping each Tuesday.
If you don't see a synopsis of this show where you're listening, visit our website at life's erodetrip.podbean.com.
(46:20):
For more information on this week's guest, this is your host Scott Martin.
Reminding you that Life's A Road Trip.
(46:53):
Thanks for watching.
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 for this road trip is Nate Meffat.
Nate is the author of A Life Derailed, My Journey with ALS.
Now, if you've probably heard of Lou Gehrig's disease, that is the disease we're talking
about, it's amiotrophic lateral sclerosis.
It's a nervous system disease that weakens muscles and impacts physical function.
So I'd like to say welcome and how you doing, Nate?
(01:21):
I'm doing a little stuff.
And folks, Nate and I were discussing things and he's up for doing some of the reading
so you know it coming from his heart.
His book is written from his heart, but he's going to read the preface and also the closing
and I'll read other pieces that we've pulled out in order to fit them into the show just
to give you a good idea about what the book is about.
(01:43):
So when Nate, when you're ready, go ahead and read the preface for us.
Will you please?
Okay.
And then we thought I'd write a book.
I never imagined that story from my life would be interesting when meaningful enough when
you went to read.
So that's changed over the years.
(02:04):
On no one or no one in any sense of the word.
Enough time has passed since my second life started.
I've had the opportunity to reflect.
I've had more than enough time.
It's been 10 years since I went through mourning at the hospital.
(02:30):
Everything else with the Amy O'Trophie, well versus August 2011, a month after my 27th
birthday.
It feels like more than a lifetime ago.
It may seem like everything changed in the one day, but that isn't the truth.
(02:55):
I've been navigating the not so steady stream of changes.
Well long before they had any label.
From my first Franklin to my daughter's visit, to Daniel, my first wheelchair, and everything
yet to come.
(03:17):
My story is about change and what they are.
I'm repeatedly broken in the pages of this book.
I gradually become very physical in the Amy in the words for me to fight a new person.
Like our winter and the adult, we fully around had all my struggles bring mental maturity.
(03:46):
It may seem like a sensitive subject by joining with the OS.
A few tears were weft in the process of running.
I've been so linked and gradually well known by this life, I often find myself emotionally.
(04:09):
There's no interview on you for this book.
In the after an input I received from the stories, purchased myth, less limited to correcting
a few factual details.
The way others may have seen things is hardly the point whether or not it's entirely accurate.
(04:35):
It's just my reality.
Okay folks, just so you are aware and most people know blue gerry's disease and ALS is
how it affects muscles.
Well, it's affecting Nate in his reading ability or how his function is well.
Go ahead buddy.
There's some important things for my speech that I really must thank him.
(05:01):
You don't need to apologize for it.
I mean, that's the heck with anybody that might have a problem.
So we're going to skip up to another point and I'll do some reading for a while.
Rob and I sat in the same classroom at college, graduating in the same year with the same
major.
The party during senior week, carpool to work, spent days golfing and skiing and nights drinking.
(05:26):
He'd moved with friends to what had been a seasonal rental, half ski shell, half rustic
lodge on the mountain road in Stowe.
One Saturday afternoon in the winter of 2010-11, which Rob and his roommates had spent skiing
while I was on my ass at six Patrick, I drove up to their place.
(05:47):
We were drinking beers the moment I walked through the door, preparing for the night
at the bars.
There was a little like a frat house and I had to join in playing quarters.
And by the way, folks found a video of Nate and his friends playing suit quarters.
So that's going to be on the Life's a Road Trip website.
So then I'll get back into it.
So they're playing quarters at the kitchen table.
(06:09):
It was immediately obvious that I couldn't keep up.
I'd lost my dexterity and feeling in my fingers.
I didn't consider telling anyone what I say.
I didn't have an explanation.
I had trouble picking a flat quarter up off the table and struggled to move it into my
palm.
I looked at my friends in their effortless movements.
I couldn't understand how they did it.
(06:30):
I felt like I had a new set of hands.
I couldn't control them like I used to.
Quarters is a game of speed and much of skill.
Every additional second between shots is more time for the opponents to catch you.
Yeah, this is going to be fun when that video just had me roll with on the floor.
Nate, it wasn't just a problem of ineptitude and subsequent embarrassment.
(06:53):
I had to drink more.
I kept losing and was constantly trying to finish a beer, making things worse.
I shouldn't shouldn't have gotten up from the table, walked away from the problem.
That wasn't me, not the person I knew.
I knew we'd head out to the bar and I couldn't handle it.
I couldn't drink like I used to.
A few beers in my balancing coordination were shit.
(07:15):
I couldn't binge drinking at PBR, which is absolutely ribbon, and try to fit in.
I'd surely embarrass myself.
Suddenly, playing quarters or cards or in a major way, like falling down the stairs,
there was no problem in drinking like that, but what could I tell them?
I wanted the curl up in a ball in the corner and escape.
(07:36):
I didn't know what to do, so I tried to find a way out.
I snuck away down the stairs and saw the coat-covered couch.
Maybe I'd just pass out here and they'd leave me behind.
Maybe I could just leave, get in my car and drive home.
It certainly wasn't the first time I'd had a bad idea.
They call it Irish goodbye.
I've done it before, too drunk an unable or unwilling to tell anyone I had to surrender,
(08:01):
but never by car and never before the night had even started.
Running in the relative calm in the dark room, away from the drunken noise upstairs,
I made my move.
A few feet from the escape, I desperately needed.
I grabbed my coat, put on my boots, and snuck out the door.
I got in my car and turned the key.
I was drunk.
I knew that, but I had to get out of there.
(08:24):
That was more important.
The driveway was wide near the top, but narrow toward the road.
There was a snow-filled ditch running alongside the street, a culvert under the driveway.
I'm in the dark, but absolutely clear-headed.
I didn't want to back out into the mountain road with its 50-mile-per-hour speed limit
and risk a high-speed collision.
Thinking I'd turn the car around, oh, Nate, trying to navigate a packed driveway, I backed
(08:50):
my Subaru toward the ditch.
Before I knew what was happening, the rear wheels lost traction.
I couldn't pull forward.
Oh, shit.
With the rear wheels still spinning, I pulled the emergency brake as hard as I could, hoping
the loss of 140 pounds from the front seat wouldn't cause the car to lurch backward.
I swung the door open and stepped out.
(09:11):
There it was.
Front wheels still firmly planted in the pavement.
Rears somewhere back there suspended above the snow.
Typical of my inebriated state, the severity of the problem didn't really register.
Damn, hope it stays.
Forced to abandon my escape, I re-entered the house with the tail of the running car.
I was getting something out of the car and it must have popped into neutral, I told everyone.
(09:35):
A lapse poured out.
My drunken buffoonery was exhaustively ridiculed, but I think they believed me.
What were you trying to do by telling them what you told them and thinking that you'd
be, why did you feel like you were getting away with something?
This must have been one of the early times before you were diagnosed, right, Nate?
(09:58):
I was, for sure.
That's the winter before us, I guess.
It's quite a viable thing.
I had to escape by telling them.
I couldn't tell them.
I didn't know what to tell them.
(10:19):
I wasn't even considering telling them anything.
And that was no other explanation than what they were doing if you can't tell someone
what to tell them.
That there's a problem.
You have to avoid this situation.
I was in that situation.
(10:40):
So that's what I got really needed to escape.
Family, and I tried to think of all.
Well, we're going to jump to the foregone conclusion, and this is where it really is becoming an
issue more of the escaping part.
(11:02):
And you're not wanting to face others.
The foregone conclusion.
I spent a lot of my time being lonely in my life altogether, but certainly since my symptoms
began, when I started to notice changes, I didn't know what happened.
I was afraid to share it with anyone.
I was afraid someone would find out.
And finally, I received my diagnosis.
My instinct was to protect myself further.
(11:24):
I wanted to crawl inside myself, engage my armor, and keep everyone out.
I never wanted to tell anyone, in part because I couldn't accept it myself, but also because
I was embarrassed.
I'm still somehow embarrassed.
I was always afraid of my faults, afraid that the world would see faults in me, whether
they actually existed or not.
(11:45):
And this new fault arrived, I became all the more guarded.
I pushed them away.
I was spent my life protecting myself.
I was always the little kid, and I was always picked on and outright bullied by my older
friends in the neighborhood and assholes in middle school bus.
I learned to stand up for myself, fight and make jokes.
(12:08):
I forged my identity.
Nothing bothered me.
I was strong, tough.
But I also think it made me close off and unable to display that dreaded, but all too
important quality vulnerability.
I don't know why anyone is surprised that men grow up unable to show emotion or ask
(12:30):
questions, but rather feign confidence all the time.
That's what we were taught.
That's what men are, or so we were told.
So that probably was, I would think that 99.999% of males are taught in a certain way to be
tough and not face our problems.
And here you are sharing that with us.
(12:51):
And I think you make an awesome point in your writing, Nate.
Was it this sort of thing or was it when you finally got to the point when you were writing
when you could look back and see the stupidity of maleness?
Where do you think you picked that up?
When do you think that that triggered your trip?
No, until I was writing it, or me.
I mean, silly, after my diagnosis, I mean, I've learned that one more well recently.
(13:18):
And many other people have to, I might not miss me on, but I didn't know there was an
other way, really.
And I think I said I grew up around the big group of guys in the Seminole, Suburban
Emory.
And male, what kind of culture?
(13:41):
Very poor, well, and very sport.
Having this love sports, jokes, is being a tough guy.
That's what it was.
That's what I became.
I mean, really, I didn't see the narrative, like I didn't see the narrative for all of
(14:06):
us.
I saw it.
And I was really impressed for the million, not only being afraid anymore, but why shouldn't
you be afraid of filming now?
I mean, I was learning, being that man's man.
(14:27):
You're really...
You have to be able to talk.
I mean, yeah, you're really afraid of so many things.
You're so boring, then.
Well, I don't think, why should I have that fear?
So I don't have that anymore.
I don't really care.
I mean, the only one was I would never have written a book.
(14:51):
I could never have written that book.
I saw a man that I used to be.
Yeah, once you sit down and start writing, right, you're sharing so many things with other people
you don't even know.
So I guess that would be probably the point where you grasp that thought and that idea.
Okay, well, speaking of grasping a thought, we're going to talk about human golf and grasping
a golf club.
(15:13):
So Nate writes, on a drizzly March day in the 40s, as in the temperature, long before
CCV, which is the country club of Vermont, or any other respectable golf course open
for the season, four of us played nine holes at Lang Farm in Essex.
It didn't go so well for me.
I was miserably cold.
I couldn't grip my clubs.
I'd never before paid any attention to my grip strength.
(15:37):
Gripping a baseball bat, tennis racket, or golf club isn't something to focus on.
It's muscle memory.
And afterthought, but the fundamental task was almost too much.
With every swing, it felt like the club would fly for my hands.
Failing that first step took away any chance of success at all of the other things that
make up hitting a golf ball.
(15:58):
I tried to blame the weather, but none of my friends seemed to have the same trouble.
A few weeks later, Rob and I went to the driving range, and I found though my grip felt better
in the warmer weather, that wasn't it.
I was used to shaking the rust off each spring, but this was much more than that.
I couldn't say that it felt like I'd never had swung golf club before, but that wasn't
(16:23):
it.
It felt worse.
It felt like I was a different person.
Just going to stop on it there.
So we're up to a few instances now, Nate, where you were noticing things, probably was
starting to tumble in on you, because it's evident in your writing about things and not
wanting to share folks.
And to go along with you pulling away, well, I'll read a little bit more and you folks can
(16:50):
pick up on how much Nate does pull away.
We're going to read a little bit on, I grew up in the backyard.
I grew up in the backyard on the sidewalks, streets, and driveways, and then the half
dozen parcels of woods that made up the neighborhood.
My brother and I and the handful of kids close by grew up with each other's supervision,
mostly outside.
(17:11):
We rode bikes and built tree forts.
Three that I think I can think of.
We played basketball in the driveway and roller hockey in the street.
We spent winters walking with sleds to hills in the woods, known only to kids.
We made up and adapted games from poor golf to tree ball to zero to.
What was what's zero to Nate?
(17:33):
That's a game you guys came up with.
It's a wiffle ball based, it was a baseball or a wiffle ball based game.
It was basically just a game we made up for when we didn't have enough people to play
it for a game.
The reason it's going to go there too is that the count is always zero to.
(17:54):
You always have no rules on two strikes.
So one strike means zero on the slow-yow.
And then you go on in that same chapter and talk about going out for run.
And you were noticing that you just weren't the same.
So you thought, okay, let's get into biking.
(18:15):
And you use a line in there about how you felt like you're a 90-year-old man, I'll get
groceries or something, and just going slow.
So here again is an example of ALS creeping in on your life.
So perfecting seclusion.
Now we're getting down to some nitty gritty about you, Nate.
A lot of people never go a single day without talking to another person.
(18:40):
I've gone many days on many occasions.
And you write, in October of 2011, I moved from a small room in my four-bedroom frat
house on the 55-mile-per-hour highway to Stowe Mountain Resort to a bedroom apartment
with a garage on Main Street in Waterbury Village.
The first recipient of an ALS diagnosis, the fresh recipient of an ALS diagnosis, here we
(19:05):
go, turning the corner.
Now you know.
Unable to summon much focus for anything, I made a heartfelt effort at finding a roommate.
I asked two people, rationalize I could afford the rent on my own and resign myself to living
alone.
I saw myself walking in the restaurants, bars, post office, drug, and grocery stores in the
(19:26):
village.
It had been years since I lived in a walkable town.
I missed it.
I didn't immediately get the internet hooked up, for whatever reason, overwhelming depression.
My laptop picked up a unprotected signal that, as long as I kept it in one of the few spots,
worked okay most of the time.
It was a one-bar signal that was constantly disconnecting, attempting to and then, yes,
(19:50):
reconnecting.
At night, I drank beers and listed the baseball playoffs and the old Bose Wave radio I inherited
from Dave's, the division playoffs, the Yankees Tigers, championship series, Rangers Tigers,
and the World Series, Rangers Cardinals.
Sometimes I'd sit in the dark.
I didn't really care about the outcome.
Maybe I relished the peaceful nothingness at sitting alone in the dark.
(20:13):
Maybe I wanted to prove myself that I was strong.
I could handle whatever emotion or self-made depravity I might face.
I'd been trying to prove it in my entire life and in most vulnerable state.
And consciously, my ammo didn't change.
I didn't need anything or anyone.
27 years old, newly diagnosed with a terminal disease.
(20:35):
I sat in my apartment alone.
I didn't think this is the time to do something.
I didn't think anything at all.
I was tired and broke and hiding.
That is all I had in me to do.
Sometimes, while I'm reading this, and I've read the book a couple of times, the emotion
starts piling up on my shoulders, but we're going to keep doing this, buddy.
(20:58):
Okay.
There's another hard part.
This stuff in the closet.
At the top of the stairs was a closet.
I filled it with memories of the day.
I filled it with memories of the day.
I moved in hiking boots and running shoes, basketball and tennis racket, roller blades,
baseball glove, hockey stick, skates, pads, helmet, skis, poles and boots, golf clubs
(21:21):
and frisbees, backpacks and duffel bags, all piled in a dark corner just outside the door.
I bought the baseball glove in high school.
I'd hardly used it since college.
I played catch by the dorms and long-tossed with it in the park.
It followed me to every apartment.
It seemed like a lifetime ago that over a friend's offer to steal it after his shift.
I knew that I'd use it forever.
(21:44):
I thought that forever would be longer.
When I paused there, we're going to leave a spot in case somebody wants to do it.
I'm going to drop an ad here.
The gift of time.
A strange thought came over me when I contemplated life without work.
I've been given the gift of time.
As delusional as I knew it was to think that being diagnosed with a permanent illness
(22:08):
wasn't any sense a gift, the thought still remained.
Never in my adult life had I had this kind of free time.
I couldn't help but dream about what I'd like to do with it.
Every dream I imagined fell flat in the face of reality.
I'd walked to the window, completely deflated, looked out and wondered, what can I do with
(22:31):
my days?
People would tell me to live life to the fullest.
I wanted to laugh in their faces.
I could have done almost anything just a few years ago, but can I live life to the fullest?
I can't seem to do anything the way that I want to.
This is after the diagnosis, you starting to pull away.
And you're going up again, Nate.
(22:54):
I quit my job.
I didn't know what to do with myself.
There's a sentence towards the end of that chapter and it says, line was far easier than
the alternative.
So here you are again.
Way easier.
Of course it was.
Were you trying to hold, were you trying to make it easier for other people or for yourself?
(23:15):
I don't think I've seen it for other people.
It's easier for yourself to not, I mean if you tell anyone, you'll have to go through
it yourself in real way.
I think it was more overwhelming to me to tell everyone.
(23:37):
And that's actually faced in reality.
You're in two full-man bad news.
You see their reaction and you stay out of serious sleeping.
That makes you realize, you might be more than you wanted to.
(24:00):
That pretend it was.
So to me, it's easier to not tell everyone.
And I didn't tell some people, but not more than you know, a handful, maybe ten.
But yeah, that's where it was at.
(24:22):
Well things did change because I'm reading in another chapter.
On February 7, 2013, I posted the following.
Dear Facebook, I have some news I need to tell you.
In August of 2011, I was diagnosed with ALS.
That's Lou Gehrig's disease.
I should have told you all, all long ago.
And I should have told you face to face.
(24:43):
I apologize for the inability to do so.
I just couldn't handle the overwhelming dread of telling you and the look in your eyes when
you found out.
I still can't handle that look in your eye.
If I've ignored you, don't call you back or haven't kept in touch.
I'm sorry.
I just didn't recognize myself.
And it's been very difficult to accept that I'm not who I used to be.
(25:06):
I guess maybe I thought if you didn't know, then maybe it wouldn't be real for you in
the same way it is for me.
I just don't know what else to say except that I'm doing fine.
And I appreciate those of you who have supported me.
So then you're right.
A lot of people came out of the woodwork and sent me all varieties of messages, most of
them simple and supportive.
(25:28):
Some didn't.
People I wanted to hear from.
A very little change in their life.
There wasn't as long as long line of old friends knocking at my door.
While I was always appreciated every bit of a support, a few stood out in the brain searching
for negativity.
Allow me to briefly indulge in the George Carlin style of labeling absurdity.
And here's something that just boggles my mind.
(25:53):
So you're right.
One Facebook friend, some I hadn't talked to since high school, and I'm not sure I
talked to in high school, sent me a doozy I'll never forget.
She told me that this was God's plan, that I had been chosen because of my strength.
Side stepping the simple minded blanket euphemism of God has a plan.
(26:14):
God struck me was the utter illogical insanity that was intended to make me feel better.
And I suppose to feeling pride and being a martyr, martyrs die.
I'd like to live.
I got the frustration with you reading that.
Was there.
(26:35):
I live through it.
Yeah, I suppose.
Now, while now we're going to get into a little bit of something else.
And I'm skipping you meet someone.
I believe that that's what this is.
Yeah, it is.
(26:57):
She invited me to join her for a show at higher ground the next week.
This is girl you've met.
Her friends boyfriend played keyboards in a band.
He made plans to meet in nearby J.C.
Park beforehand.
She'd bring a pizza.
I stopped on the way and bought a bottle of wine at a gas station.
I forgot to bring corkscrew and glasses.
Accompanied by an unopened bottle of wine, we ate a few slices of pizza at a picnic table
(27:21):
by the parking lot.
We'd walked to the mobile station on the corner in search of a corkscrew.
They didn't have one.
We crossed the street to Gracie's and I spent $1.09 on a two piece red plastic device, the
device we needed.
The only a few hundred yards, it felt like an adventure to my legs.
I had to maintain a steady gate at Kim's side, the person that you met.
(27:42):
I kept those thoughts to myself.
In the cool air of an April evening in the park where I played Little League Baseball,
we drank from the bottle in the oncoming darkness.
Kim wasn't the least bit phased by any of it.
We could have bought paper cups, but she didn't care and I didn't care.
We drank from the bottle.
The wine had run out.
We got into the car, into my car and drove around the corner to the show.
(28:05):
As we stood in line at the ticket window, I struggled to get my wallet from my back pocket
with my freezing cold, useless hands.
I almost gave up and asked Kim to reach in the back pocket in my tight fitting pants.
That I even considered asking shows how much I let my guard down.
That's true.
I really liked reading that because yeah, something changed when you wrote that Facebook post.
(28:28):
It was really cool.
I was more comfortable with her because I felt like I knew her from the past.
I didn't know her from the past, but very normally, well, I felt like I didn't know
her.
I was comfortable with her before, safe and protected.
It's a different feeling than most of them.
(28:55):
I didn't feel like I had much.
I still have.
Clearly.
But all I saw was.
Yeah.
Yeah.
A lot less.
A lot less.
Things really start to change for you here.
We ordered maker's market side bar, wine from a bottle, straight whiskey.
I love this girl.
With a drink in my hand and a heavy buzz, time disappeared to the crowd and the music.
(29:19):
When it was time for another, I could hardly say no.
So what if I drove into in from Waterbury on the walk through the lobby after the show?
We decided I couldn't drive home.
Came inviting me to stay that night at her place and she'll burn and got on the phone
to a cab.
We stood out in front of the building as the post show crowd slowly dispersed.
(29:40):
A green cab Prius picked this up in the circle.
I tripped on the curb.
Oh, Nate.
And stumbled to my way to the car.
Yep.
I'm a little drunk.
She walked me to the living room couch and told me again, but she still felt she need
a reason that I was just not moved that she had just moved.
Her bed was tiny and I had to sleep on the couch.
(30:03):
Well, you also found out that there was what two ducks in a cat.
So it was a hairy couch.
I'm sure.
I guess anyone who would have had vacations in the situation, but I really didn't.
I was happy enough.
She invited me back.
The couch was already more than enough.
As I sat on the couch, she leaned in.
Yeah, she leaned in to arrange me a blanket.
(30:25):
We somehow fell into a kiss.
She wished me good night, excused herself and a room.
And I lay back with a smile.
There you go, man.
That to me as a reader of this book, that was a pivot point for you.
Were you still pushing this way or not believing that it was possible?
I mean, when I had four into it, I waited and then we have expectations for her.
(30:55):
When you got to choose one whole friend and wish me enough and I don't know.
I didn't have a lot of expectations.
There was more leisure for me to not be as fearful.
Well, one of the things Nate for me as the reader and I read the sentence, I felt confident,
(31:17):
even prideful, happy to be out with my girlfriend.
That tells me.
Yeah, I was very excited about that.
I felt whole, I mean, first one, and a lot of times I felt safe and whole.
And they'll tell me happy and contented.
(31:40):
Yeah, of course, that's, but a new relationship will be there for you.
Later on, you guys stayed together and you wrote that Kim accompanied Mom and I to one
of my all day ALS clinic clinics later that summer.
So obviously she you let someone in finally.
(32:02):
Yeah, for sure.
And I'll say, and you guys even moved in together.
And but there's something I want to bring up to you, buddy.
You wrote here's about your flat with Kim.
I was a two bedroom flat with the living room in the center, a galley kitchen and a washing
dryer in the lime green bathroom.
Yee, you guys didn't want to change that color.
(32:26):
You kept the lime green bathroom.
I mean, you're so wonderful.
I don't care.
And you went on to write when you're about with Kim that, but it also filled another massive
void in my life.
It's given me a sense.
You're talking about now you're starting to write.
But also give me a massive void in my life.
It's given me a sense of accomplishment.
A wide variety of tasks, large and small, simple and complex provide people with a steady stream
(32:50):
of accomplished feelings as the years have passed more of those tasks have grown out
of my reach.
It may seem unlikely to miss another laundry or the dishes, but I do.
You may dread the next snowstorm and the shoveling it brings.
I miss that feeling when you're done.
So accomplishment that is a male thing.
But I think that that's a good male thing.
(33:11):
It's a human thing.
Good point.
And I really, I really do.
I mean, everyone has to have this purpose.
I mean, like all machine things is a purpose.
And everyone has to feel a purpose.
(33:34):
And that's what, I mean, really that's what, right?
It's not for me.
That's what, things like this have been for me.
And it's for me, for me.
That's restricting when you can accomplish physically.
And it points me out.
And it's me over and trying to find something else.
(33:56):
And I'm so not cool.
I'm so not there entirely.
But it's better than nothing.
And we had that simple little sense of accomplishment for me.
And I was like, I'm the only one doing the distance.
Or whatever it is.
(34:18):
Like, even driving your car is like a certain sense of freedom
and accomplishment of doing something.
And when you're actually doing something,
or the world doing something, it goes away.
And it's very difficult.
I hope people grasp that because so many things that we probably
(34:42):
would miss, not be if we weren't able to do them.
But you and Kim went on a vacation to Puerto Rico.
And it was there you proposed.
So you two were officially an engaged couple.
I don't want to get into some of the other things in the trip
and that's for the people to read on their own.
(35:05):
But then things took a different turn after you guys,
while you guys are moving into your place together.
You wrote two days later, while Tom and Katie carried a couch
through our sliding back door, Kim took me aside.
With my friends thinking we'd snuck away for a kiss,
Kim told me she couldn't marry me.
Or that the wedding was off.
(35:26):
I don't remember the words.
I remember the meaning.
Here again is you went back to that safety trigger,
where you kind of beat yourself up, man.
And you wrote that my waffling, hesitant mind would never have been so set.
And that's coming off and trying to deal with as your means of protection,
(35:47):
self-protection, you pulled back again.
I don't know.
I'm not going to ask you.
I mean, it's worth a link.
I mean, one thing about having a US,
if anyone wants to have you,
it's easy to see that as the only person that would.
(36:08):
So it was easy for me to want you to marry me,
and whatever's worth it, and that I mean,
so I've never thought it would happen.
So when did it happen?
It was, you know, again, it kind of went back to that scene.
(36:31):
It's like, it's quite just her.
It's quite not having you.
If it didn't work with her, it's quite like it was, period.
So, you know, I don't know.
We're going to jump to a piece called Changing With Change.
For years, living alone, I never gave up on anything.
(36:54):
I couldn't. No one was there to help.
There was a determination built in my mind
and knowledge of frustrations would always come,
and I had to get through them.
So here you are rebounding.
It seemed, and maybe you're coming to grips with ALS.
One of the things that I was having problems with
when we were talking about doing the show was I didn't want to read too much.
(37:16):
And I want to leave a lot of it to not just interpretation,
but for information for the listeners if they want to pick up the book.
And of course, the link is going to be to the book is going to be on the Life's A Road Trip website.
Okay, folks.
So we're going to start wrapping up the book part with,
towards the closing.
And I think it's very powerful.
(37:38):
It's called Full Over Grat.
And Nate wants to read it for you.
So go ahead, buddy.
I have a lot of...
A lot of...
They're large and they're small.
They're real and they're imagined.
Represented by questions.
Well answered and unanswerable.
(38:01):
Like Clims and Woods, at best.
They exist in my mind from yesterday and I was having a go without resolution.
One of my questions.
Things I cannot know is whether I were there for a sold-down.
(38:22):
Whether I could have sold-down.
I like to think the things I got as I imagined.
If I wasn't out, this particular card.
I wouldn't have to learn.
So there's no way of knowing.
I never had the chance to grow up.
(38:45):
But I really...
I don't think of myself as an adult.
How could I?
I was just getting started.
A few short years of course.
When I watched my way.
I went back to my wife's four mistakes.
One now had my lens on them.
(39:09):
I can't go back to the person I was.
I can't bring his abilities forward.
If I can combine the two versions of myself.
I think of the fair, in decision, inaction, avoidance.
That's so often done in my life.
(39:32):
I never knew what I wanted.
In school, in career, in my social life.
And surely, most likely, with women.
I went back and see someone really compelled to pursue anything real.
I never tried to answer last most difficult questions.
(39:56):
I never took real time to conserve my path.
I still hadn't ever tried to fight with anyone.
I still had my confidence.
I had all the answers.
No one's forced.
I was a child.
I didn't.
(40:17):
There's some things I came up.
I came up with a dual one.
The things I didn't do.
The chances I didn't take.
The opportunities I missed out on.
Because I was scared.
There were a lot of them.
I lay awake thinking about the girls and they could not have put in my life, but were.
(40:40):
I think in the memories we care assured.
What I need to be lonely, if only I have in my mouth, instead, and thought to be real.
It's more least cliché in this book.
Put myself out there.
Not too much of my life.
(41:04):
Things that happen to me.
I measure how much was my choice.
I want to tell people, anyone who will listen, that you drift through life this way.
Don't take the path.
Just because I lay your feet.
(41:27):
Run away from your fears.
They're scary.
I guess they're significant.
Make choices in your life.
Don't lay life.
It's yours for you.
Talk about the main things.
When someone you trust,
will you feel to communicate your thoughts and feelings?
(41:49):
Don't win.
Your fear of embarrassment.
Make decisions in your life.
With a listen, tell me your friend asked questions.
You'll be better for it.
Talk about your fears when they're family and friends.
Bring the man in the open and see if they're real or imagined.
(42:13):
Spend every day alone and take time to reflect.
Ask yourself.
And what have you?
It's just one and one, and then just don't be invited.
Or able to reinvent myself in the way that I like.
A more than one to learn from my mistakes.
(42:37):
Thanks for doing that.
Because it's coming from your heart.
I'll bet.
But you know what?
We can change things a little bit and have some fun.
It's time for the road trip roundup, man.
I'm going to be asking Nate five questions about his relationship with road trips.
So here we go.
(42:59):
When road tripping, do you tend to do fast food or local diners, Nate?
When you're younger, you don't care when it's going to go to the gas station.
Question number two.
What's your dream car for a road trip?
(43:21):
It could be something your family had or something you'd like to top in with someone else to go on a road trip.
I mean, let's switch it, man.
We can win those.
I can ruin the machine spins.
(43:42):
Careful wins.
Okay, question number three. Now you're old enough. You might actually go one way or another on this.
That's Alaska set or CD that played while you were on a road trip.
I have no idea.
I'm going to see the idea.
Any bands that you can mention?
(44:03):
I mean, one CD I used to listen to was with our truly peppers, blood sugar, it's like magic.
That's from 1991.
Oh, okay.
We've all got our favorites.
All right, straightforward question number four, buddy.
Coke or Pepsi?
No, I really don't think so.
If I had to choose my Coke, but everyone don't think so.
(44:28):
I don't have much sugar.
Yeah, I was wondering about how ALS might be affected by certain things and how much you have to think about it.
I don't know if we have one or not.
All right, last one.
You take this wherever you go, whatever road trip you want to refer to.
But what's your favorite road trip memory?
(44:49):
I'm a good one.
So after college, I am.
This is in 2007.
Two of my friends and I took a silver foster from the mall to California and back in two weeks.
(45:11):
Oh, wow, that's a long way.
Basically, we drove the entire railway stuff from gas.
So don't let the other one stop.
Let's forget.
That's the rule.
You can't stop the use of nothing.
Well, let's meet in gas.
But we went to one of the national parks.
(45:36):
We went to Las Vegas.
I think it was just, it was rough.
And we were 22, 23, 23.
That sounds like nothing could hurt you.
Yeah, that's a lot of laughs.
Well, we're going to wrap it up there.
You and I stay on for a little while, but I'm just going to close with Challenge Lacks everybody.
(45:59):
And thanks for listening to Life's A Road Trip.
Thanks for listening.
Check out previous episodes with new ones dropping each Tuesday.
If you don't see a synopsis of this show where you're listening, visit our website at life's erodetrip.podbean.com.
(46:20):
For more information on this week's guest, this is your host Scott Martin.
Reminding you that Life's A Road Trip.
(46:53):
Thanks for watching.
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