Slogging Through

Getting through anxiety one day at a time, one step at a time, putting myself out there. Slogging through. In the news Paris Promised the Olympics Would Be Accessible. The Clock Is Ticking. Article: Paris Promised The Olympics Would Be Accessible The city, which put inclusivity at the center of its bid, has improved access for people with disabilities, but with the opening ceremony about 12 weeks away, obstacles remain. Slogging through Processing what's happening One of the hardest things about Multiple sclerosis is wrapping your head around it. being cool with the things that are happening to you in the processes that you are part of accepting them is very difficult. maybe it doesn't have to be. in Buddhism they say that all life is suffering, but some of it is unnecessary. Maybe it's important to accept myself and what's happening, that it is okay that you are okay it has been okay it is okay and it will continue to be okay. I am thinking about that because I am going to start talk therapy again I'm getting some relief from anxiety. taking it easy Last night I made rice and beans and we had it with eggs and salad Bailey, a female wrestler on smackdown from San Jose CA It rained on free comic book day anxious feelings are difficult to control back pain creating a nerve tingle in my groin and knee difficulty sleeping I play an impartial judge in mayhem special. Jersey girl and max levels I drove to the coffee shop and didn't give up until I got a cappuccino - twice drove to Oakland and pumped my own gas Mayhem Max level picked me up at my house and drove me to kfjc where we broadcast the snap crackle pop special with Jersey Girl. shout outs to max level Jersey Girl circumference, Robert Emmett and the sandman everybody played a role radio helped anxiety - in the moment New Therapist New talk therapist began. we spoke about the bad anxiety i was feeling, the anxious thoughts and the need to tell the doctor that the medication was not relieving me. my therapist has worked with disabled people before, and some of them could not communicate, so they had a hard time advocating for themselves. insomnia. anxiety. panic when I liey down. the numbness inside my head becomes my focus, and I obsess over it. eventually I calm myself enough to lie down, then the cycle begins anew I drove my family to a baby shower in Dublin for one of my wife's coworkers Selfie 00:00:00 - intro 00:00:47 - paris promised the Olympics would be accessible 00:03:59 - slogging through anxiety 00:07:41 - it is ok, it has been ok, it will be ok 00:09:06 - relief 00:09:54 - cracking crabs at market hall 00:12:53 - wrapping your head around MS 00:14:12 - new talk therapist 00:15:24 - back down the track 00:15:48 - boys time 00:16:13 - cooking to find noormalcy 00:17:06 - Bayley, wrestler from san jose 00:17:48 - rainy free comic book day 00:18:08 - anxiety thoughts 00:19:42 - snap crackle pop kfjc mmayhem special 00:20:49 - getting around on my own 00:21:48 - taking the kids to school 00:22:58 - shout outs 00:23:28 - broadcasting in the moment 00:24:21 - advocating at the doctor\'s office 00:25:20 - changes in sensation 00:26:11 - baby shower 00:27:55 - cirque du soleil 00:29:28 - outro

Episode Transcript

(00:00):
- Check.
Yeah, it's good to be here.What's the matter with me?
What is the matter with me podcast,
what is the matter with me?
Podcast. My name is John.

(00:21):
I'm 45 years old.
I'm husband, father,small, business owner,
radio dj, podcaster,
and I have multiple sclerosis.
So I made this podcast toshare what I'm going through.
Thank you for tuning intothe, what's the matter

(00:44):
with the podcast?
Paris promised the
Olympics would be accessible.
I saw that in the New YorkTimes, been to Paris a few times,
not with my wheelchair.
It's like partially accessible there,

(01:07):
so things would really have to change.
Restaurants are not really accessible.
Mostly Paris Promise.
The Olympics would beaccessible. The clock is ticking.
The city put inclusivityat the center of its bid.

(01:30):
There's improved access forpeople with disabilities,
but with the openingceremony about 12 weeks away,
obstacles remain.
So now it's like 11 weeks away.
French regulations require 4%

(01:51):
of hotel rooms to be accessible,
but the total number
of such rooms in Paris is unknown.
The law is not enough.We really need to change.
Mentalities says Pascal Reeb,

(02:11):
the law is not enough.
We really need to change mentalities. Ms.
Reeb said, Ms.
Reeb said for example, Cavs have refuse
to pick her up.
She said telling her
that her wheelchair woulddirty the vehicle's interior.

(02:35):
Last year an Uber driverwas accused, accused
of attacking a blind manfor getting into his car
with a guide dog
by Ann Marie Williams.
May 6th, 2024.
Paris promised the Olympicswould be accessible.

(02:58):
The clock is ticking.
During a trip to Parislast November, Samantha,
Frankie just couldn't seem to find a taxi
that would accommodateher motorized wheelchair.
Every time I logged on
and just kept saying,unavailable, unavailable,

(03:19):
unavailable, Ms.
Rekey said, recounting her struggle
to book an accessiblecab using the G seven
taxi app.
Eating out was also a problem for Ms.
Rekey, a 38-year-old British actress
and disability campaignerwho has a genetic condition,

(03:44):
commonly known as brittle bones, too few
restaurants had set free access.
The Olympics is 11 weeks away.
I've been having a prettyhard time with that anxiety.

(04:04):
I've been just like slogging through it.
You know, they changed mymedication, I met with my doctor,
they changed it again,
and I'm kind of getting through it.
The good things arehappening, it's not all bad.
And I slept last nightand the night before,

(04:28):
although I woke up early on both days.
I woke up earlier yesterday.I slept pretty good today.
I got like seven hours. SoI think that's pretty good.
But two nights ago I gotlike three hours of sleep.
I couldn't fall asleep,I couldn't calm down.

(04:50):
I think the RF rhizotomy made me numb
in a way that's like, it's inside my mouth
and in my sinus and in my face
and it kind of freaks me out.
And so that was definitely playing a part
of the anxiety.

(05:12):
'cause I'm like gettingused to new sensation,
uh, changes in the sensation of my face,
which has happened to me four times now.
And I think I'm probably the most numb
I've ever been.

(05:33):
So it's, you know, when Ieat I get stuff on my face
and it's hard, but mywife laughs at me, so,
and I can laugh at metoo, so it works out.
But having the anxiety, I lay down.
Um, my throat was getting really dry

(05:54):
because my atoms, applealso has some changes
in sensitivity.
So it's just kinda like I can sit there
and freak out about it.
And I was, a couple nights ago I did that
and I couldn't get to beduntil four or something.

(06:14):
But then I started thinkingabout all life is suffering
and some of that suffering is necessary
and then some of it is unnecessary.
And so I started kind of asking myself,
is this really necessary?

(06:34):
Is this what's necessary?
And that, that got me to aplace where I could breathe.
I could just think in out, youknow, like as I'm breathing
I could breathe in, breatheout, in, out, in, out.
So that calmed me down.

(06:56):
And I got like threehours of sleep that day.
It was a bummer a couple days ago,
but I'm getting through it.
It's like a slog.
Some nights I've woken up repeatedly
like five or six times.
So I've been like struggling,struggling through.

(07:20):
But last night I did pretty well.
I think I slept until aboutfour, woke up and peed
and then I was able to sleep until six 30
or something when started showering
and that kind of stuffstarted going on to wake up.

(07:41):
I've been being botheredby the bird, the birds.
The birds had been waking me up the cat,
the little kittenrunning around on the bed
bothering me.
So anxiety, it's been anxiety.
Like sometimes fixating on physical

(08:04):
changes in sensation in my face
sometimes just other stuff like
anything is I startedlabeling my thoughts.
That is something we talked about with my,
my last therapist.
And just to nonjudgmentally,

(08:28):
label your thoughts
and be like, so I startedbeing like, okay, this is,
you know, when I started thinking about
some old time memory of some other place
or some gone or whatever
and I'm like, this is justgonna lead to anxiety.

(08:48):
These are anxious thoughts.
And so I started labeling them.
I started going anxiousthoughts, you know.
And so I would, when I wouldlabel it, then I would go back
to my in out breath routine.
That worked prettywell. It got me through.

(09:10):
Some of it was more of a slog.
Other times I slept
and then other times I was not feeling
so much anxiety.
Today I'm not doing too bad.
I did something, you know,I've been trying to do things.

(09:31):
Um, I've been walking, youknow, on Mother's Day I drove
with my son to a market
and got some chocolate
and some flowers for my wife
and that involved and some cookies too.
So there you go. Um, I wentto a market where I was like,

(09:55):
they're gonna have it all.
Market hall. I used to workthere, it's in Oakland.
And I used to crack crabs at market hall
and it was a really smelly job with just
cracking crabs all day.
You would get these kindawounds on your palms from

(10:20):
crushing the crabs over and over.
We call them stigmata.
Um, I would take my clothes off
outside my house
and leave them on theporch, on the back porch.
And I would go in directly to take a bath.
'cause I had all crab guts all over me.

(10:42):
And I smelled like fish. I'm sensitive.
So I would take a bath. Iwould, I had a pair of shoes.
I think they're called earth shoes.
I think I had some earth shoes
or maybe they were airwalks, I don't even know.
But whatever they were,

(11:03):
they would get crab guts all over 'em.
And I only wore them to work.
I would leave them in the backyard,
I would get into my clothes
and they'd be cold frombeing in the backyard.
So being suffering buttrying to do things.

(11:24):
So I went to the market
and I parked in the,the disabled spot there.
Walked about a block to the flower stand.
They were totally sold out.
They were like, did youorder ahead? I was like, oh.
And then I went into the shop,there was some chocolates

(11:47):
and some almond ready almond cookies.
So I was like, gotta get those.
Got, we bought those and we went outside
and I was like, wellwe gotta get something.
Went over there and rightthen they were restocking.
I asked the lady, Hey,which one is the best?

(12:09):
And she, she sold me one.
And then I took it to my wife.
It was all nice and,
and I walked back to the car
and my son carried the flowers,
chocolates and cookies.
That's why I brought him.I said, will you help me?

(12:30):
I just need you to carry this,carry this stuff to the car.
And it wasn't heavy or, or big
or any, I mean the flowerswere the biggest thing.
They went over well. Theywere kind of like purpley.
Beautiful. Will the
Olympics be accessible?

(12:55):
One of the hardest things about multiple
sclerosis is wrapping your head around it
and being cool with the things
that are happening to you.
The processes that you'repart of. Accepting them.
Accepting them is very difficult.

(13:19):
Maybe it doesn't have tobe in Buddhism, they say
that all life is suffering,
but some of it is unnecessary.
There's a bunch of other noble truths.
But I'm just sticking with that.
All life is suffering, not all necessary.
I made this note to myself

(13:42):
when I was in the midst of anxiety
and it's kind of an anxiety affirmation.
Maybe it's important to accept yourself
and what's happening to you.
That it's okay that you are okay.
It has been okay, it is okay

(14:03):
and it will continue to be okay.
And then , I'm thinking about that
because I'm gonna starttalk therapy again.
I started talk therapy. I do it over Zoom.
I had my intake last week
and then we'll meet thisweek and we'll get into it.

(14:26):
The lady is, has worked in the past with
disabled people, but she worked
managing medications for people.
I'm not sure exclusively,
but at least part of whatshe did was she would manage

(14:48):
medications and the doctors for people
who were disabled andcouldn't communicate.
So she, her thing, she waslike, you can't communicate
and you should tell your doctor
that you're having this anxiety.
And so the next day I did call my doctor

(15:11):
and we had a, a video meeting over Zoom.
We changed around mymedication a a little bit
and that's put me on the path.
I think I'm starting to do better.
I'm not all better. I'm juststarting to get back on track

(15:33):
where I'm sleeping.
And like I said, I went andgot stuff for Mother's Day
and I did a lot of walkingand I did it all myself.
And I did driving
and I went to market hall
and I got flowers, chocolate and cookies.

(15:55):
And with my son, he had a funtime just with me and him.
We work together. We call it boys time.
We're like, it's boys time.
And so we had fun talking in the car
and drive to Oakland andthen he was so helpful.
- Hopping hot sauce.It's the best hot sauce.

(16:18):
Hopping hot sauce. It's thebest sauce in the world.
The world, I'm telling you.
- Still kind of falling apart Last week.
I'm still cooking though somehowI'm always trying to find
some normalcy.
I guess that it's probablygood for me to cook.

(16:42):
I made rice and beans
and we had a, we scrambled eggs
and salad and it was good.
It was like kind of a nothing meal.
And there was something nice about that.
It was just pinto beans
and white rice, scrambled eggs

(17:05):
and a salad with like red, romaine,
crispy shallots.
Just 'cause we have crispyshallots on the table
because I put 'em on almost anything.
My son was watching SmackDown, he loves
to watch wrestling.
I'm like, whatever, I'll watch it, um,

(17:28):
for a couple minutes andwe'll, we'll talk about it.
But we, we were watching it
and we saw Bailey, a female
wrestler on SmackDown Bailey,
a female wrestler fromSan Jose, California.

(17:49):
I was like, what San Jose in the building?
Bailey SmackDown.
I was like, I knew there wasa reason to watch SmackDown.
It rained last week onfree comic book day.
We, so we went to freecomic book day kinda late.
And there wasn't a lotof free comic books left.

(18:12):
They've been freed out.
Comic book people will go out in the rain
for a free comic book.
So this episode, there'sa lot of notes here
that our thoughts really just kind
of jotted down during anxiety.

(18:34):
Like, I got this here.
Anxious feelings are difficult to control.
Yeah, I was having like controllable
streams of thought, youknow, that were not helpful.
They were barely coherentand just beating myself up.

(18:57):
And I remember my wife was reminding me,
and it's true, my, my therapist,
my last therapist hadbrought me to this idea that
when things are bad, they seem worse.
Because if a bad thing happens

(19:21):
and it's already bad, the whole mood
and things are bad, thensomething bad happens.
It's worsened by however bad the mood is.
So difficult, streams of thought,
difficult to control.
I was having a lot of back pain

(19:43):
and I was having like anerve tingle in my groin
and in my knee.
It was itching.
I was having all thatdifficulty sleeping last week,
last Monday I was on KFJC, um,
max level came and picked meup and we drove over to KFJC

(20:06):
and they have a mayhem special max level
and Jersey girl called Snap, crackle Pop,
where they, I get a bunchof thrift store records
and they don't reallyknow even what they are
and they just kind of put'em on and talk about 'em.

(20:28):
And then I was, my part was,I was the impartial judge,
like in whose line, is it any way
how they get points atthe end of every round?
That was my thing. I would give points.
I think it ended up being like 9,015

(20:52):
to 9,007.
But I, I forget it wasclose. It was just made up.
Someone's gotta win.
So last week I was drivingto the coffee shop,
I couldn't find a parkingspot, went around the block
and I parked on the streetin front of the shop,

(21:15):
went in there, had a cappuccino and left.
The first time I got abouthalfway through my cappuccino
and I started havinganxiety and freaking out.
So I just downed it and left.
But the second time Iwas there, I was able
to like chill out and eat
or drink my cino.

(21:37):
So doing stuff, trying to combat feelings
of anxiety by completing going places
and doing things.
It's kind of like comingoff of all this medication
and then being, starting
to be more active all the time.

(21:59):
Like this morning Itook the kids to school,
I drove them to school
and I haven't done thatin months by myself.
It was awesome. And mywife was like, it was cool,
I could go into work
and I was just like, itwas really cool for me

(22:21):
to be like, let me take the kids to school
and set the day up right?
I drove to Oakland for thefirst time, uh, you know,
quite a while and pumped my own gas.
I've been doing that
and it was kind of likeeverything I'm doing, I'm kind

(22:43):
of learning how to do it again
because it's been like ayear since I did anything
because I was on so much pillsand I was such a fall risk.
I couldn't like, accomplishanything. I couldn't drive.
I, I was not, so I'm tryingto come back from that.

(23:05):
Back to the land of the, the living.
I gotta remember to give shout outs
to the KFJC folks.
Max level picked me up in my house
and drove me to KFJCwhere we broadcast snap,
crackle, pop, specialshout out to Jersey girl.

(23:28):
Shout outs to circumference, shout outs
to Robert Emmett
and the Sandman, every,everybody played a role.
Radio helped with anxiety.
I was having a reallyhard time at this time.
But to be there in radio,you're like in the moment

(23:52):
broadcasting, that's all you're doing.
You're just trying to do your best job
and there's no room, there's no room
to think about anything else.
Yeah, on the radio you'rejust broadcasting, talking

(24:12):
to the microphone
and it, it's all aboutbeing right in the moment.
That's what makes the best radio is
being really clued inand direct to the mic.
Not taking your attentionor focus anywhere else.

(24:34):
So the new talk therapist came last,
or I had the meeting last week on Zoom
and I was having bad anxiety.
So we talked about that.
All the anxious thought patterns
and she suggested that Ineed to tell the doctor

(24:55):
that the medication was not relieving me.
I've been having badinsomnia. It's fluctuating.
The last two nights were good.
Night before that, bad, bad,the worst, like three hours
of sleep total in like five or six shifts.

(25:17):
But then the night before that was good.
So I, I've been like going back and forth.
I've got two nights ina row of pretty good.
So that's something I can build on.
Like I said, my throat, mymouth feels weird and numb.
My nostril is numb, my right nose,

(25:41):
so it feels kind of crazy.
I'm still getting used to it.
So I lay down
and as soon as I laydown I start panicking
and all that numbness
and it in my head becomes like my focus.

(26:01):
Obsessive uncontrollablethoughts about it.
But like I said, eventuallyI got the all life is
suffering for hours.
It was like a cyclethat went over and over.
But then I was like, is this necessary?
Is it necessary?
So no, it wasn't Last weekend,

(26:25):
my wife's old coworker was one
of my wife's friends she used to work with
was having a baby showerand my kids went there
and I drove them to it.
It was in Dublin
and I was having anxiety soI really didn't want to go,

(26:47):
but I wanted, I was like,I'd like to drive you there,
then I can drive back,then I can drive to you
and pick you up and drive back.
So that's a lot ofdriving kind of wasteful,
but also occupying me

(27:08):
in a time where I was having trouble
sleeping the night before.
I wasn't quite sleep deprived,
but I wasn't like great, you know?
And so I drove my family.
So I drove my family to a baby shower
to give myself something to do.

(27:30):
It ended up being liketwo hours of driving.
By the end of it I waslike, no more driving.
We'll see how this goes.
Like, you know, I'm achievingstuff you, like I said today
I took the kids to school
and that's like tremendous for me
because I'm like I did, did something

(27:55):
straight off to helpand to get outta my mind
and my thoughts
and really just focus on the kids
who are great energy.
Anyway, we went yesterday we went
to San Jose to go to Cirque de Sole

(28:16):
and that was Wild cdu Soleil is wild
clowns and running away with the circus
and wild, wild stuff.
Contortionists and peoplethat are very limber people
with good balance, youknow, it was all fun.

(28:38):
The kids liked it a lot.
My son got a collapsible top hat.
Uh, I don't know why they're
so selling these, but he got 'em.
He's stoked. It's a top hat that like
you can smash and then it pops back up.
It like collapses and he loves it.

(29:03):
So doing things, watchingthe NBA playoffs,
it's been pretty good.
So things are, it's aslog with the anxiety.
I'm having a haircut on Thursday,
so the selfie is gonnahave the longest hair.
Hold on. Long hair.

(29:27):
I write the selfie. All right.
Can't tell the flares without a selfie.
My kids got souvenirprograms at Cirque de Soleil,
so it's been a long through anxiety.
Thank you for listening.
Just being able to do this to speak,

(29:50):
it's allowing me to process it, you know,
it's just like naming it
and not judge judging it.
It's something to do with that.
This is my effort to name
and not judge what I'vebeen going through.
Thank you for listening.

(30:11):
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