August 2, 2023 • 27 mins
Managing life with a rare disease like myasthenia gravis, or MG, can challenge the way you see yourself. Being mindful of emotional wellness can be as important as adapting to physical changes. Today’s guest, Eri, had to re-envision himself when his MG diagnosis challenged the role he played as a provider for his family and pillar in the community. Before the onset of his symptoms, he had never considered what challenges he would face in maintaining such a demanding life. By making lifestyle changes and cultivating a support system that strengthened his emotional well-being, Eri learned to prioritize his health alongside his responsibilities.
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Hello everyone, and welcome back to Untold Stories Life with
Mayasthenia Gravis, a podcast from iHeartRadio in partnership with our
gen X. I'm your host, Martine Hackett. I'm an Associate
professor and Director of Public Health Programs at Hofstra University,
and as a researcher, professor, and public health expert, I've
spent my career studying the complex realities of healthcare disparities
(00:25):
and the diverse barriers people face. In this podcast, I'm
speaking with real people living with mayasthenia Gravis, commonly known
as MG. Every person with MG has a unique story
to tell. By uncovering real life with MG, we will
expand the conversation around this condition and its disproportionate effect
on underserved communities. In each episode, we'll explore how each
(00:49):
MG journey is unique and powerful in its own way.
We'll also share tips on self advocacy and discuss the
role community and caregivers play in the lives of people
living with MG. We've talked a lot about navigating the
physical obstacles of life with MG, but there's also an
emotional and spiritual element to living with this rare condition.
(01:09):
While many of our guests have spoken about the various
ways they have learned to keep their spirits up. Today,
we'll be diving deeper into being mindful of emotional wellness
and mental health with an MG diagnosis, its physically debilitating
effect on the body can also set off a string
of emotional triggers, like concerns over maintaining a lifestyle and mobility,
(01:30):
and even how MG might affect one's capacity to work
and provide for a family. Emotional wellness becomes a key
aspect in maintaining a healthy outlook on life with MG,
and there is perhaps no one better to shepherd us
through that conversation than today's guest. Aeri is a father
of six, a successful entrepreneur, and a pillar of his community.
(01:50):
A hard working railroad inspector hailing from Chicago Airry, faced
many debilitating symptoms that challenged his work and active lifestyle.
He joins me to discuss how his MG diagnosis challenged
his role as a husband, father, and provider. Helping others
understand his condition and finding confidence while working through his
diagnosis were both major components of protecting his emotional wellness
(02:15):
while leaning into his spirituality and finding ways to reframe
his thinking. Airy has been dedicated to having a positive
outlook on his life with MG and sharing that positivity.
So hi, ariy, let's get started. What did your life
look like before you learned of may asthenia gravis.
Speaker 2 (02:37):
Before I knew, my activities consisted of jogging, running, biking, swimming, basketball, work,
and party. And one day, once I found out it
limited has stopped pretty much everything until I was able
to adjust.
Speaker 1 (02:59):
Were the symptoms like for you before your MG diagnosis.
Speaker 2 (03:04):
The first time I suspected something was when I was
playing basketball and I.
Speaker 3 (03:10):
Just kept falling. I'm like, well, what's wrong?
Speaker 2 (03:12):
I thought everything was normal, but my left side was
weaker than my right side. My arms, my legs, my
eyes started drooping on the left. So I did not
know that that was a symptoms of the disease my
esthenia gravis.
Speaker 1 (03:31):
And so obviously, when you started to feel some of
these symptoms, you maybe probably considered going to a doctor.
But we know that there's a history of men, particularly
men of color, avoiding doctors. So did you have that
trepidation before going to visit.
Speaker 2 (03:47):
It was more so I was forced to go to
the doctor because I went so long without a diagnosis.
I was limping on one side, and I couldn't speak,
I couldn't swallow food, and the most I could eat
was like maybe some oatmeal or banana because my throat
was shutting down too. So I was still going to
(04:09):
work at the time, and I have a real demanding job.
I'm an inspector and a car freight repair person at
a major railroad, and I was in charge of people too.
So at a certain point, my job told me that
they had to pull me out of service because I
couldn't hardly walk and talk. And when I went to
the doctor before that, they told me they couldn't find
(04:33):
out anything wrong with me. They had me and a
doctor for like three days. They took every test imaginable.
I went through cats, skins, spinal taps, all different type
of procedures, all different type of testing. They took my
blood and urine samples. They kept coming back to me
and sound perfectly healthy. So at a certain point I said, well,
(04:54):
if I'm okay, it's no purpose of me being here
if you can't find anything. After I was out of
service for about a week, I got a call from
a neurogis and he said he got an idea of
what's going on.
Speaker 3 (05:07):
Come and see him.
Speaker 2 (05:09):
And he talked to me and explained that a certain
test came back and he knows what the issue is.
It took so many different types of doctors. Everybody kept
trying to figure it out. And one guy say, hey,
I know what's wrong. And he broke it down to me.
(05:29):
He said, yeah, you do have an allomal disease and
it's called MG. And I said, is it a cure?
He said no, but we can treat it. So I
was kind of double hearted because I didn't know how
to respond to the treatment, and plus it was no cure,
(05:51):
so I was like, Okay, how do I respond to this?
Speaker 3 (05:54):
So in that timeframe, I.
Speaker 2 (05:57):
Had to have a deep acceptance, a deep realization that
my life was going to change.
Speaker 1 (06:06):
And so then you finally got that diagnosis, and what
were the responses from the people in your life as
you began to share that diagnosis.
Speaker 3 (06:16):
It was very twofold.
Speaker 2 (06:18):
It was more so I didn't want anybody to know
what's going on with me medically, but I had to
let them know what was going on with me because
of first, work, family, recreation, all those things stopped. So
the people in my life was asking me questions, what's
wrong with you? Did you have a stroke? Was you
(06:39):
got high blood pressure?
Speaker 1 (06:40):
What?
Speaker 2 (06:41):
Because most people think because my body shut down on
one side, it was a stroke and it wasn't.
Speaker 3 (06:47):
It was the MG wow.
Speaker 1 (06:49):
And you eventually had to take a leave of absence
from your job.
Speaker 3 (06:52):
Yes, they took me out of service for a month.
Speaker 2 (06:55):
Not because of physical because I was still walking tracks,
but I was limping walking tracks. I didn't want to
lose work, but because I would have to talk to
people and talk on the radio and I couldn't talk
because my speech was so slurred. So that's when they
came in. They said, hey, well we got to pull
you out of service.
Speaker 1 (07:11):
What was that like for you when you were getting diagnosed?
Having to take that leave of absence.
Speaker 2 (07:16):
Getting diagnoses was frustrating. Leave of absence was a lot
of uncertainty with paying bills, the future of me owning,
because like I have a building another house to take
care of. The taxes was due, all the other bills
was due, and I didn't have employment. They gave me
(07:37):
workings comp but that's like sixty percent. So I had
to probably use my credit cards and figure out a
way to survive.
Speaker 3 (07:45):
Until I got better.
Speaker 2 (07:47):
So I'm still recuperating from that, but it's hope because
the better I get, the more brighter my future looks.
Speaker 1 (07:55):
And did you ever feel that your career was going
to come to a close.
Speaker 3 (07:59):
That was not the big issue.
Speaker 2 (08:00):
I mean I thought, well maybe because I got a
lot of responsibility. I take care of buildings, I own property,
I got kids in college, repairs I need to do,
and I couldn't do anything I had tendans to take
care of. You know, all this responsibility a lot of
different type of stresses.
Speaker 3 (08:17):
I was an inspector one time.
Speaker 2 (08:19):
Then I was in a rip trackage where they fixed
well torched and through heavy repairs, and they had other positions,
and I had to figure out what position would be
best for me in my condition. So I had to
make an adjustment on what actual job role I had
and went to a spot that was conducive to me,
(08:43):
that was complimentary to my health. And I found that
spot so I was able to flourish in that. If
you can't just then I would have to find something
else to do for a living. So that is a factor.
Speaker 1 (08:59):
The treatment plan that your doctor's prescribed for you help
you to manage your MG symptoms.
Speaker 2 (09:05):
Once they diagnosed me and I was able to get
the right medication right when I took the medicine the
first time, I felt something open, a passaituay where I
can talk and start swallowing food. My body was real
skinny because I wasn't eating, so my muscles was very
weak and I wasn't moving much. So it took an
(09:28):
adjustment to start back being active. And my family had
to understand that, Okay, hey he's taking medications and side effects.
Speaker 3 (09:37):
He just started eating, he just started walking.
Speaker 2 (09:40):
Tragic trauma of not knowing what your situation is. So
once I had to kind of recalibrate my whole life
to come into an understanding on how to approach it.
Speaker 3 (09:56):
You can't do it this way, no more than you
used to do it. It's not that you.
Speaker 2 (09:59):
Can go hiking, you can't play basketball, you can't bike.
You have to just take it a different approach. You
might not have to do it with such intensity as
you did before. So I still play basketball, I shoot
the ball around. I don't run full courts and stuff
like I used to. I still bike. Actually, I did
(10:21):
the thirty mile bikeathon on Lake Shore Drive a year back.
I didn't do heavy weightlifting since twenty sixteen. Like a
couple of weeks ago, I went in the gym and
put some barbells up and it was successful. My body.
I felt the pain of not doing that. I used
to do one hundred and fifty to two hundred pounds
(10:42):
on the bench and easy.
Speaker 3 (10:44):
I got to go on my own pace. So I've
learned to adapt to.
Speaker 2 (10:49):
Not being able to do things the way everybody else
does it. And I work a high demanded job, so
I have to pace myself. And when I first got back,
I couldn't lift up the eighty pound part like I
used to, so I had to learn another way to
get it up and prepare the training. So it was
(11:09):
a big adjustment in the way of thinking, the way
of interacting, the way of execution of movement.
Speaker 1 (11:17):
And you mentioned your children and their initial sort of reaction.
How did you explain the condition to your family, especially
your children.
Speaker 2 (11:27):
When I got back from the doctor, I told them
that I have an autoimmune disease. They don't know how
people get it, but it comes up, and I let
them know that the things that I used to do,
I'm not gonna be able to do the same. But
I'm gonna continue to do what I can do to
provide and take care of everybody, but it's definitely gonna
(11:48):
be less than what I used to do.
Speaker 1 (11:55):
We'll be back with more Untold stories Life with Mayosthenia
Gravis after a quick break as a global immunology company
committed to improving the lives of people living with severe
autoimmune diseases, our Genics is dedicated to partnering with advocacy organizations,
(12:15):
including the Mayasthenia Gravis Association in support of the MG community.
The Mayasthenia Gravis Association is dedicated to supporting patients, families, friends,
and communities impacted by MG throughout Kansas, Missouri, and Northwest Arkansas. Together,
they strive to build a supportive community for those affected
(12:36):
by MG by increasing public awareness, providing educational opportunities, and
fostering meaningful connections with one another. Their goal is to
ensure that MG patients are always supported. For more information
about the MGA, visit www dot MGAKC dot org and
(12:58):
now back to Untold Stories Life with My Aesthenia Gravis
With your family, they must have also had to adjust
to their new roles as part of your MG journey.
What surprised you or impressed you most about how they've
(13:18):
responded to your condition alone.
Speaker 2 (13:21):
In years they kind of supported me in reference to
just food. Go make food for me sometimes, And it
used to be I'll never ask for anything, So when
I was in that state, they would bring me food
and help me up the stairs, or if I failed,
come and help me up. It was times I was
at places downtown I fell and couldn't get up for
(13:44):
like an hour or thirty minutes on the ground and
I'd be somewhere by myself and I have to learn
how to get up. So even at work when I
had MG, when I failed, it was hard getting up.
I would have to crawl by something and pull up
and get me and then walk slow. So it's really
a process.
Speaker 1 (14:04):
There was obviously that time when it probably felt pretty
dark in terms of you know, just not knowing and
all these things happening. And I'm sure you also had
to ask for help from people that you might not
have done before.
Speaker 2 (14:17):
Yeah, And you know, the funny thing about it is
you ask for help. But also when you're the strongest
guy and everybody see you as the strongest guy, and
then now they see you as a weak, pathetic little being,
like you're nothing. That was traumatic for all the people
around me because they saw me so strong all these
years and now I can't even stand up or talk
(14:40):
or eat.
Speaker 3 (14:42):
So on one hand, you had the people that really genuinely.
Speaker 2 (14:46):
Want to help, but then on another hand, you have
people that laugh.
Speaker 3 (14:50):
When people see a weak person.
Speaker 2 (14:52):
Sometimes they want to bully a weak person because they
figure you can't help yourself, you can't do anything. I
can push you over it and you can just fu I'm
not saying all people like that, but in some cases,
some people can feel Okay, now we can take advantage
of the guy.
Speaker 1 (15:07):
Wow. And so it sounds like you had to redefine
what strength meant.
Speaker 3 (15:12):
Yeah. Yeah.
Speaker 2 (15:13):
One time I had an insurance guy to come out
because I had stuff going on at the time.
Speaker 3 (15:17):
I had to get a roof.
Speaker 2 (15:18):
Fixed, and he couldn't even understand one word I'm saying.
Speaker 3 (15:21):
He just blew me.
Speaker 2 (15:22):
Off and denied they claim and everything, but he didn't
understand my situation. So I was like, Okay, So now
when I do things, I have to do it in
a different way. I have to find a way to
communicate without talking. A lot before I can talk a length,
I can go along, I can debate, I can talk paragraphs.
(15:43):
But after MG, within five or ten minutes, I'm slurring
and they can't understand me. So instead of me going
to talk for an hour or thirty minutes, I'll just
say the quickest possible way to resolve a matter in
two or three minutes.
Speaker 3 (15:59):
So that was the adjustment.
Speaker 2 (16:01):
And when I was a driver with the Riot Share
sometimes my speech got slurred.
Speaker 3 (16:07):
I had to be.
Speaker 2 (16:08):
Quiet a lot and just say hello, how you doing,
have a great day, and don't talk too much, and
turn some nice music up. It's just little stuff like that.
Before MG, I could argue a whole day with somebody.
We can debate like we ain't caught. But now that
I got MG, it's like, okay.
Speaker 3 (16:25):
Is this worth the debate?
Speaker 1 (16:27):
Wow?
Speaker 3 (16:28):
Is this worth the argument? You do what you need
to do. I do what I need to do. When
we move on, you have to be able to adapt
to what's in front of you.
Speaker 1 (16:40):
It sounds like also too, just obviously when you deal
with a debilitating illness, it helps to have a strong
sense of community. And you mentioned that your landlord, you're
a rail yard worker, and you're an active member of
your community. How is your role in the community changed
as you've learned to manage your MG.
Speaker 2 (16:58):
Before I used to do a block parties and helped
out with the kids and volunteered different places, and that
slowed down a lot.
Speaker 3 (17:08):
These are the things that come with MG.
Speaker 2 (17:10):
You have to slow everything down or just find another
way to approach it. But that effects you mentally in
reference to your mindset. You have to take care of
yourself and you have to make sure that you're okay
to do whatever it is that you set out to do.
Like my daughter, she's going to Cornell and Atic, New York,
(17:31):
so I had MG. Well, I was driving my daughter
to college, so that was ten hour drive. I had
to adapt, you know. I took her came back on
my own ten hours, but I would have to stop
and rest up for maybe after every two or three hours,
take an hour break.
Speaker 3 (17:50):
Before It's just a straight drive for me, no problem.
Speaker 1 (17:54):
And so it sounds like not only did you have
to make those adjustments, but other people had to learn
how to adjust to you as well. Did you find
yourself having to connect with people who also had personal
experiences with MG, finding a community sort of outside of
the community that you already had.
Speaker 2 (18:10):
I think once I took in my medicine and I
was having issues in my own house about mood swings,
and I had two options. They called it a white
knuckle effect, which is do it on your own, rough
it out, be tough, or I can go and seek
a community help group, a pair support or a group
(18:34):
that has what I have and get help and see
what everybody else was going through. So I didn't choose
the white knuckle effect because that wasn't helping just me
on my own. So I went to a group for
MG and that really helped me that I wasn't the
only one that had this unknown disease, but it was
(18:54):
other people, older, younger, different nationalities. It wasn't just me
m And then at that point I understood there's something
to really put an effort out to meet others with
those conditions so you can kind of help each other.
And that's why I'm here today is to actually give
(19:14):
a little info to help people, if maybe a little
encouragement that it will be okay, that you will get
through and you will adjust and you will adapt in time.
Speaker 1 (19:25):
Speaking of adjustments, what gives you fulfillment in your life? Now,
do you have any new hobbies or interests.
Speaker 2 (19:32):
I was doing a lot of activities like going to
the museums, going to the zoo conservatory, different places, Like
I was doing that every day Even before MG. I
was always traveling different places. And I really study a
lot of archaeology and stuff like that. I love learning,
(19:52):
So that's something that when I go to a museum,
I like to sit there and read the whole paragraph
instead of just one line.
Speaker 1 (20:00):
You're that guy standing in front of the sign.
Speaker 3 (20:02):
Yeah, take pictures either our institute.
Speaker 2 (20:05):
I love the Picassos and the boskyacht they got there.
Speaker 3 (20:09):
I love all of it.
Speaker 1 (20:11):
And maybe that's something that, like you said, you did
before MG, but it sounds like this is something that
you have a and you found passion for now.
Speaker 3 (20:18):
Yeah, it enhanced.
Speaker 2 (20:20):
I think with MG everything enhances your relationships. It gets
deeper because everything slows down, so you have time to
think about how you're going to approach it, how you're
going to deal with it, because you can't do it.
Speaker 3 (20:34):
The same way.
Speaker 2 (20:36):
MG is almost like when maturity hits, you just start
learning to do things different, but it's a different kind
of maturity and mature you on how to survive physically, mentally, spiritually,
all the different type of ways at the same time.
Speaker 1 (20:51):
And so it sounds like that idea of like slowing
down your really active lifestyle that you had before MG
sort of has got you to the point where you
can strick a balance between living a full life and
not overdoing it.
Speaker 2 (21:04):
Yeah, I still want to travel the world. I still
want to go to one hundred and ninety six countries.
I've done twelve so far. These are some of the
goals and visions and dreams that I have. I still
want to do it even with MG. I would love
to go worldwide and volunteer and help people with MG
or other conditions. So that would be the goal after
(21:28):
I retired, to take those trips even with my condition,
but not to push it too hard.
Speaker 1 (21:33):
Mm hmmm, because it sounds like you've had to change
the way that you respond to stressful conditions because of
your MG, And could you talk a little bit about
that how you do that.
Speaker 2 (21:43):
My opening for self development is usually first thing in
the morning, I do meditation. I turn on my inside
timer and I meditate and I kind of look into.
Speaker 3 (21:57):
How my body feels, how my mind I feels.
Speaker 2 (22:01):
I try to quiet my thoughts, but that don't usually work.
I just sit back and observe my thoughts and let
them pass on. So if my body is not feeling
up to something in the morning time, I just know, okay,
I'm not going to work today, I just call off
and or if it's a big trip.
Speaker 3 (22:21):
And I just go, like I meet you all there.
It's a way for me to have a mirror and
see what I'm going through.
Speaker 2 (22:31):
The meditation so kind of give your body room to
have a voice.
Speaker 1 (22:39):
And so it sounds like you've definitely come to this
place of understanding how to again manage your stress and
the emotions of having MG over time. But what advice
would you have for people who are struggling with the
emotional aspect of managing a rare disease.
Speaker 2 (22:59):
I'm not gonna lie and say it was so easy
and be this honest and tell them it's going to
be good right away.
Speaker 3 (23:08):
It's not. It's a long road, bumpy, it's hard. It's
a lot of obstacles.
Speaker 2 (23:15):
It's a lot of mindwork that you have to put
into adjusting and recalibrating your life from doing the things
that you once did and doing the things that you
can do and your body is telling you able to
do now, And you have to definitely observe yourself and
(23:36):
also observe your interactions with people, because sometimes it might
not be you that's triggering distress. It could be your environment.
You can be in a volatile environment that's really not
good for your health. So it's good to say, Okay,
I was okay when I was right here, but when
I go over there, I feel so much storms. So
(24:00):
it would be whove you to just okay, let me
go back over here. Well, my body feels better, my
mind feels better if I go over there.
Speaker 3 (24:08):
I watch it.
Speaker 2 (24:08):
I fight to be better when I don't have to
fight when I'm over here.
Speaker 1 (24:13):
So it sounds like you've had a lot of time
to really kind of process what MG has meant for
your life in terms of changes. Is there something that
you feel that you've gained from the MG experience that
you wouldn't have had without it.
Speaker 2 (24:27):
I think that I gained a whole new way of
looking at life. It comes down to what really matters
in life. Before MG, I didn't think too much about that,
about the bottom line, the baseline in life. I always
thought about just the numbers on top of the line.
Speaker 3 (24:47):
Oh, I want to get the kids through school.
Speaker 2 (24:49):
I want to get this, I want to keep this,
and I want to get more stuff and stuff and stuff.
But it's more about the individual than the stuff.
Speaker 3 (25:00):
You stuff.
Speaker 2 (25:00):
You're trying to get obtained. You're going all this to
get it, But what is it all about? And with
mg Okay, I came to a close encounter with deuff.
So when I'm sitting there, okay, if something happened to me,
what I'm gonna say, what I'm gonna regret that I
didn't do. These are the things that I want to
focus on, things that really matter. And if I could
(25:24):
just help my family and love them and pass that on.
I might not pass a lot of money on, but
I could pass those values of love and respect, honor,
things that really stay with kids.
Speaker 3 (25:40):
If I can rest knowing I did.
Speaker 2 (25:41):
That, that's enough for me and did the best that
I could to be a better person every day.
Speaker 1 (25:48):
Wonderful. Thank you so much Aerie for your time today
and your real inspiration. I mean to even know that
you've gotten to this point after all that you've been through.
I just want to let you know that it's very
inspiring to me and I appreciate this lesson.
Speaker 2 (26:02):
I appreciate you. And it's just an ongoing journey. It's
never over with as long as we get up. It's
a when and whin when if he hit the ground,
it's a way and win because being above ground is
the most important thing. And you got broth. You can
see beautiful sun come up, you can see flowers, trees,
nice artwork, you can see. You can not take it
(26:22):
for grint and live in the moment with that.
Speaker 1 (26:26):
Thank you so much. Thank you so much to Aery
for graciously sharing his story being a provider and stabilizing
force for so many in his community. It was so
beautiful to hear that he was able to find vulnerability
in his MG journey and ultimately make space for other
(26:46):
people to understand what you're going through too. Don't forget
to join us every other week to hear more powerful
stories of life with MG. Untold Stories was produced by
iHeartRadio in partnership with Argenics and Closer Look and hosted
by me Martine Hackett. Our executive producer is Mali Sosha,
(27:06):
our EP of post production is Matt Stillo, and our
producer is Sierra Kaiser. This episode was edited by Sierra
Spreen and written and produced by Tyree Rush.
Hello everyone, and welcome back to Untold Stories Life with
Mayasthenia Gravis, a podcast from iHeartRadio in partnership with our
gen X. I'm your host, Martine Hackett. I'm an Associate
professor and Director of Public Health Programs at Hofstra University,
and as a researcher, professor, and public health expert, I've
spent my career studying the complex realities of healthcare disparities
(00:25):
and the diverse barriers people face. In this podcast, I'm
speaking with real people living with mayasthenia Gravis, commonly known
as MG. Every person with MG has a unique story
to tell. By uncovering real life with MG, we will
expand the conversation around this condition and its disproportionate effect
on underserved communities. In each episode, we'll explore how each
(00:49):
MG journey is unique and powerful in its own way.
We'll also share tips on self advocacy and discuss the
role community and caregivers play in the lives of people
living with MG. We've talked a lot about navigating the
physical obstacles of life with MG, but there's also an
emotional and spiritual element to living with this rare condition.
(01:09):
While many of our guests have spoken about the various
ways they have learned to keep their spirits up. Today,
we'll be diving deeper into being mindful of emotional wellness
and mental health with an MG diagnosis, its physically debilitating
effect on the body can also set off a string
of emotional triggers, like concerns over maintaining a lifestyle and mobility,
(01:30):
and even how MG might affect one's capacity to work
and provide for a family. Emotional wellness becomes a key
aspect in maintaining a healthy outlook on life with MG,
and there is perhaps no one better to shepherd us
through that conversation than today's guest. Aeri is a father
of six, a successful entrepreneur, and a pillar of his community.
(01:50):
A hard working railroad inspector hailing from Chicago Airry, faced
many debilitating symptoms that challenged his work and active lifestyle.
He joins me to discuss how his MG diagnosis challenged
his role as a husband, father, and provider. Helping others
understand his condition and finding confidence while working through his
diagnosis were both major components of protecting his emotional wellness
(02:15):
while leaning into his spirituality and finding ways to reframe
his thinking. Airy has been dedicated to having a positive
outlook on his life with MG and sharing that positivity.
So hi, ariy, let's get started. What did your life
look like before you learned of may asthenia gravis.
Speaker 2 (02:37):
Before I knew, my activities consisted of jogging, running, biking, swimming, basketball, work,
and party. And one day, once I found out it
limited has stopped pretty much everything until I was able
to adjust.
Speaker 1 (02:59):
Were the symptoms like for you before your MG diagnosis.
Speaker 2 (03:04):
The first time I suspected something was when I was
playing basketball and I.
Speaker 3 (03:10):
Just kept falling. I'm like, well, what's wrong?
Speaker 2 (03:12):
I thought everything was normal, but my left side was
weaker than my right side. My arms, my legs, my
eyes started drooping on the left. So I did not
know that that was a symptoms of the disease my
esthenia gravis.
Speaker 1 (03:31):
And so obviously, when you started to feel some of
these symptoms, you maybe probably considered going to a doctor.
But we know that there's a history of men, particularly
men of color, avoiding doctors. So did you have that
trepidation before going to visit.
Speaker 2 (03:47):
It was more so I was forced to go to
the doctor because I went so long without a diagnosis.
I was limping on one side, and I couldn't speak,
I couldn't swallow food, and the most I could eat
was like maybe some oatmeal or banana because my throat
was shutting down too. So I was still going to
(04:09):
work at the time, and I have a real demanding job.
I'm an inspector and a car freight repair person at
a major railroad, and I was in charge of people too.
So at a certain point, my job told me that
they had to pull me out of service because I
couldn't hardly walk and talk. And when I went to
the doctor before that, they told me they couldn't find
(04:33):
out anything wrong with me. They had me and a
doctor for like three days. They took every test imaginable.
I went through cats, skins, spinal taps, all different type
of procedures, all different type of testing. They took my
blood and urine samples. They kept coming back to me
and sound perfectly healthy. So at a certain point I said, well,
(04:54):
if I'm okay, it's no purpose of me being here
if you can't find anything. After I was out of
service for about a week, I got a call from
a neurogis and he said he got an idea of
what's going on.
Speaker 3 (05:07):
Come and see him.
Speaker 2 (05:09):
And he talked to me and explained that a certain
test came back and he knows what the issue is.
It took so many different types of doctors. Everybody kept
trying to figure it out. And one guy say, hey,
I know what's wrong. And he broke it down to me.
(05:29):
He said, yeah, you do have an allomal disease and
it's called MG. And I said, is it a cure?
He said no, but we can treat it. So I
was kind of double hearted because I didn't know how
to respond to the treatment, and plus it was no cure,
(05:51):
so I was like, Okay, how do I respond to this?
Speaker 3 (05:54):
So in that timeframe, I.
Speaker 2 (05:57):
Had to have a deep acceptance, a deep realization that
my life was going to change.
Speaker 1 (06:06):
And so then you finally got that diagnosis, and what
were the responses from the people in your life as
you began to share that diagnosis.
Speaker 3 (06:16):
It was very twofold.
Speaker 2 (06:18):
It was more so I didn't want anybody to know
what's going on with me medically, but I had to
let them know what was going on with me because
of first, work, family, recreation, all those things stopped. So
the people in my life was asking me questions, what's
wrong with you? Did you have a stroke? Was you
(06:39):
got high blood pressure?
Speaker 1 (06:40):
What?
Speaker 2 (06:41):
Because most people think because my body shut down on
one side, it was a stroke and it wasn't.
Speaker 3 (06:47):
It was the MG wow.
Speaker 1 (06:49):
And you eventually had to take a leave of absence
from your job.
Speaker 3 (06:52):
Yes, they took me out of service for a month.
Speaker 2 (06:55):
Not because of physical because I was still walking tracks,
but I was limping walking tracks. I didn't want to
lose work, but because I would have to talk to
people and talk on the radio and I couldn't talk
because my speech was so slurred. So that's when they
came in. They said, hey, well we got to pull
you out of service.
Speaker 1 (07:11):
What was that like for you when you were getting diagnosed?
Having to take that leave of absence.
Speaker 2 (07:16):
Getting diagnoses was frustrating. Leave of absence was a lot
of uncertainty with paying bills, the future of me owning,
because like I have a building another house to take
care of. The taxes was due, all the other bills
was due, and I didn't have employment. They gave me
(07:37):
workings comp but that's like sixty percent. So I had
to probably use my credit cards and figure out a
way to survive.
Speaker 3 (07:45):
Until I got better.
Speaker 2 (07:47):
So I'm still recuperating from that, but it's hope because
the better I get, the more brighter my future looks.
Speaker 1 (07:55):
And did you ever feel that your career was going
to come to a close.
Speaker 3 (07:59):
That was not the big issue.
Speaker 2 (08:00):
I mean I thought, well maybe because I got a
lot of responsibility. I take care of buildings, I own property,
I got kids in college, repairs I need to do,
and I couldn't do anything I had tendans to take
care of. You know, all this responsibility a lot of
different type of stresses.
Speaker 3 (08:17):
I was an inspector one time.
Speaker 2 (08:19):
Then I was in a rip trackage where they fixed
well torched and through heavy repairs, and they had other positions,
and I had to figure out what position would be
best for me in my condition. So I had to
make an adjustment on what actual job role I had
and went to a spot that was conducive to me,
(08:43):
that was complimentary to my health. And I found that
spot so I was able to flourish in that. If
you can't just then I would have to find something
else to do for a living. So that is a factor.
Speaker 1 (08:59):
The treatment plan that your doctor's prescribed for you help
you to manage your MG symptoms.
Speaker 2 (09:05):
Once they diagnosed me and I was able to get
the right medication right when I took the medicine the
first time, I felt something open, a passaituay where I
can talk and start swallowing food. My body was real
skinny because I wasn't eating, so my muscles was very
weak and I wasn't moving much. So it took an
(09:28):
adjustment to start back being active. And my family had
to understand that, Okay, hey he's taking medications and side effects.
Speaker 3 (09:37):
He just started eating, he just started walking.
Speaker 2 (09:40):
Tragic trauma of not knowing what your situation is. So
once I had to kind of recalibrate my whole life
to come into an understanding on how to approach it.
Speaker 3 (09:56):
You can't do it this way, no more than you
used to do it. It's not that you.
Speaker 2 (09:59):
Can go hiking, you can't play basketball, you can't bike.
You have to just take it a different approach. You
might not have to do it with such intensity as
you did before. So I still play basketball, I shoot
the ball around. I don't run full courts and stuff
like I used to. I still bike. Actually, I did
(10:21):
the thirty mile bikeathon on Lake Shore Drive a year back.
I didn't do heavy weightlifting since twenty sixteen. Like a
couple of weeks ago, I went in the gym and
put some barbells up and it was successful. My body.
I felt the pain of not doing that. I used
to do one hundred and fifty to two hundred pounds
(10:42):
on the bench and easy.
Speaker 3 (10:44):
I got to go on my own pace. So I've
learned to adapt to.
Speaker 2 (10:49):
Not being able to do things the way everybody else
does it. And I work a high demanded job, so
I have to pace myself. And when I first got back,
I couldn't lift up the eighty pound part like I
used to, so I had to learn another way to
get it up and prepare the training. So it was
(11:09):
a big adjustment in the way of thinking, the way
of interacting, the way of execution of movement.
Speaker 1 (11:17):
And you mentioned your children and their initial sort of reaction.
How did you explain the condition to your family, especially
your children.
Speaker 2 (11:27):
When I got back from the doctor, I told them
that I have an autoimmune disease. They don't know how
people get it, but it comes up, and I let
them know that the things that I used to do,
I'm not gonna be able to do the same. But
I'm gonna continue to do what I can do to
provide and take care of everybody, but it's definitely gonna
(11:48):
be less than what I used to do.
Speaker 1 (11:55):
We'll be back with more Untold stories Life with Mayosthenia
Gravis after a quick break as a global immunology company
committed to improving the lives of people living with severe
autoimmune diseases, our Genics is dedicated to partnering with advocacy organizations,
(12:15):
including the Mayasthenia Gravis Association in support of the MG community.
The Mayasthenia Gravis Association is dedicated to supporting patients, families, friends,
and communities impacted by MG throughout Kansas, Missouri, and Northwest Arkansas. Together,
they strive to build a supportive community for those affected
(12:36):
by MG by increasing public awareness, providing educational opportunities, and
fostering meaningful connections with one another. Their goal is to
ensure that MG patients are always supported. For more information
about the MGA, visit www dot MGAKC dot org and
(12:58):
now back to Untold Stories Life with My Aesthenia Gravis
With your family, they must have also had to adjust
to their new roles as part of your MG journey.
What surprised you or impressed you most about how they've
(13:18):
responded to your condition alone.
Speaker 2 (13:21):
In years they kind of supported me in reference to
just food. Go make food for me sometimes, And it
used to be I'll never ask for anything, So when
I was in that state, they would bring me food
and help me up the stairs, or if I failed,
come and help me up. It was times I was
at places downtown I fell and couldn't get up for
(13:44):
like an hour or thirty minutes on the ground and
I'd be somewhere by myself and I have to learn
how to get up. So even at work when I
had MG, when I failed, it was hard getting up.
I would have to crawl by something and pull up
and get me and then walk slow. So it's really
a process.
Speaker 1 (14:04):
There was obviously that time when it probably felt pretty
dark in terms of you know, just not knowing and
all these things happening. And I'm sure you also had
to ask for help from people that you might not
have done before.
Speaker 2 (14:17):
Yeah, And you know, the funny thing about it is
you ask for help. But also when you're the strongest
guy and everybody see you as the strongest guy, and
then now they see you as a weak, pathetic little being,
like you're nothing. That was traumatic for all the people
around me because they saw me so strong all these
years and now I can't even stand up or talk
(14:40):
or eat.
Speaker 3 (14:42):
So on one hand, you had the people that really genuinely.
Speaker 2 (14:46):
Want to help, but then on another hand, you have
people that laugh.
Speaker 3 (14:50):
When people see a weak person.
Speaker 2 (14:52):
Sometimes they want to bully a weak person because they
figure you can't help yourself, you can't do anything. I
can push you over it and you can just fu I'm
not saying all people like that, but in some cases,
some people can feel Okay, now we can take advantage
of the guy.
Speaker 1 (15:07):
Wow. And so it sounds like you had to redefine
what strength meant.
Speaker 3 (15:12):
Yeah. Yeah.
Speaker 2 (15:13):
One time I had an insurance guy to come out
because I had stuff going on at the time.
Speaker 3 (15:17):
I had to get a roof.
Speaker 2 (15:18):
Fixed, and he couldn't even understand one word I'm saying.
Speaker 3 (15:21):
He just blew me.
Speaker 2 (15:22):
Off and denied they claim and everything, but he didn't
understand my situation. So I was like, Okay, So now
when I do things, I have to do it in
a different way. I have to find a way to
communicate without talking. A lot before I can talk a length,
I can go along, I can debate, I can talk paragraphs.
(15:43):
But after MG, within five or ten minutes, I'm slurring
and they can't understand me. So instead of me going
to talk for an hour or thirty minutes, I'll just
say the quickest possible way to resolve a matter in
two or three minutes.
Speaker 3 (15:59):
So that was the adjustment.
Speaker 2 (16:01):
And when I was a driver with the Riot Share
sometimes my speech got slurred.
Speaker 3 (16:07):
I had to be.
Speaker 2 (16:08):
Quiet a lot and just say hello, how you doing,
have a great day, and don't talk too much, and
turn some nice music up. It's just little stuff like that.
Before MG, I could argue a whole day with somebody.
We can debate like we ain't caught. But now that
I got MG, it's like, okay.
Speaker 3 (16:25):
Is this worth the debate?
Speaker 1 (16:27):
Wow?
Speaker 3 (16:28):
Is this worth the argument? You do what you need
to do. I do what I need to do. When
we move on, you have to be able to adapt
to what's in front of you.
Speaker 1 (16:40):
It sounds like also too, just obviously when you deal
with a debilitating illness, it helps to have a strong
sense of community. And you mentioned that your landlord, you're
a rail yard worker, and you're an active member of
your community. How is your role in the community changed
as you've learned to manage your MG.
Speaker 2 (16:58):
Before I used to do a block parties and helped
out with the kids and volunteered different places, and that
slowed down a lot.
Speaker 3 (17:08):
These are the things that come with MG.
Speaker 2 (17:10):
You have to slow everything down or just find another
way to approach it. But that effects you mentally in
reference to your mindset. You have to take care of
yourself and you have to make sure that you're okay
to do whatever it is that you set out to do.
Like my daughter, she's going to Cornell and Atic, New York,
(17:31):
so I had MG. Well, I was driving my daughter
to college, so that was ten hour drive. I had
to adapt, you know. I took her came back on
my own ten hours, but I would have to stop
and rest up for maybe after every two or three hours,
take an hour break.
Speaker 3 (17:50):
Before It's just a straight drive for me, no problem.
Speaker 1 (17:54):
And so it sounds like not only did you have
to make those adjustments, but other people had to learn
how to adjust to you as well. Did you find
yourself having to connect with people who also had personal
experiences with MG, finding a community sort of outside of
the community that you already had.
Speaker 2 (18:10):
I think once I took in my medicine and I
was having issues in my own house about mood swings,
and I had two options. They called it a white
knuckle effect, which is do it on your own, rough
it out, be tough, or I can go and seek
a community help group, a pair support or a group
(18:34):
that has what I have and get help and see
what everybody else was going through. So I didn't choose
the white knuckle effect because that wasn't helping just me
on my own. So I went to a group for
MG and that really helped me that I wasn't the
only one that had this unknown disease, but it was
(18:54):
other people, older, younger, different nationalities. It wasn't just me
m And then at that point I understood there's something
to really put an effort out to meet others with
those conditions so you can kind of help each other.
And that's why I'm here today is to actually give
(19:14):
a little info to help people, if maybe a little
encouragement that it will be okay, that you will get
through and you will adjust and you will adapt in time.
Speaker 1 (19:25):
Speaking of adjustments, what gives you fulfillment in your life? Now,
do you have any new hobbies or interests.
Speaker 2 (19:32):
I was doing a lot of activities like going to
the museums, going to the zoo conservatory, different places, Like
I was doing that every day Even before MG. I
was always traveling different places. And I really study a
lot of archaeology and stuff like that. I love learning,
(19:52):
So that's something that when I go to a museum,
I like to sit there and read the whole paragraph
instead of just one line.
Speaker 1 (20:00):
You're that guy standing in front of the sign.
Speaker 3 (20:02):
Yeah, take pictures either our institute.
Speaker 2 (20:05):
I love the Picassos and the boskyacht they got there.
Speaker 3 (20:09):
I love all of it.
Speaker 1 (20:11):
And maybe that's something that, like you said, you did
before MG, but it sounds like this is something that
you have a and you found passion for now.
Speaker 3 (20:18):
Yeah, it enhanced.
Speaker 2 (20:20):
I think with MG everything enhances your relationships. It gets
deeper because everything slows down, so you have time to
think about how you're going to approach it, how you're
going to deal with it, because you can't do it.
Speaker 3 (20:34):
The same way.
Speaker 2 (20:36):
MG is almost like when maturity hits, you just start
learning to do things different, but it's a different kind
of maturity and mature you on how to survive physically, mentally, spiritually,
all the different type of ways at the same time.
Speaker 1 (20:51):
And so it sounds like that idea of like slowing
down your really active lifestyle that you had before MG
sort of has got you to the point where you
can strick a balance between living a full life and
not overdoing it.
Speaker 2 (21:04):
Yeah, I still want to travel the world. I still
want to go to one hundred and ninety six countries.
I've done twelve so far. These are some of the
goals and visions and dreams that I have. I still
want to do it even with MG. I would love
to go worldwide and volunteer and help people with MG
or other conditions. So that would be the goal after
(21:28):
I retired, to take those trips even with my condition,
but not to push it too hard.
Speaker 1 (21:33):
Mm hmmm, because it sounds like you've had to change
the way that you respond to stressful conditions because of
your MG, And could you talk a little bit about
that how you do that.
Speaker 2 (21:43):
My opening for self development is usually first thing in
the morning, I do meditation. I turn on my inside
timer and I meditate and I kind of look into.
Speaker 3 (21:57):
How my body feels, how my mind I feels.
Speaker 2 (22:01):
I try to quiet my thoughts, but that don't usually work.
I just sit back and observe my thoughts and let
them pass on. So if my body is not feeling
up to something in the morning time, I just know, okay,
I'm not going to work today, I just call off
and or if it's a big trip.
Speaker 3 (22:21):
And I just go, like I meet you all there.
It's a way for me to have a mirror and
see what I'm going through.
Speaker 2 (22:31):
The meditation so kind of give your body room to
have a voice.
Speaker 1 (22:39):
And so it sounds like you've definitely come to this
place of understanding how to again manage your stress and
the emotions of having MG over time. But what advice
would you have for people who are struggling with the
emotional aspect of managing a rare disease.
Speaker 2 (22:59):
I'm not gonna lie and say it was so easy
and be this honest and tell them it's going to
be good right away.
Speaker 3 (23:08):
It's not. It's a long road, bumpy, it's hard. It's
a lot of obstacles.
Speaker 2 (23:15):
It's a lot of mindwork that you have to put
into adjusting and recalibrating your life from doing the things
that you once did and doing the things that you
can do and your body is telling you able to
do now, And you have to definitely observe yourself and
(23:36):
also observe your interactions with people, because sometimes it might
not be you that's triggering distress. It could be your environment.
You can be in a volatile environment that's really not
good for your health. So it's good to say, Okay,
I was okay when I was right here, but when
I go over there, I feel so much storms. So
(24:00):
it would be whove you to just okay, let me
go back over here. Well, my body feels better, my
mind feels better if I go over there.
Speaker 3 (24:08):
I watch it.
Speaker 2 (24:08):
I fight to be better when I don't have to
fight when I'm over here.
Speaker 1 (24:13):
So it sounds like you've had a lot of time
to really kind of process what MG has meant for
your life in terms of changes. Is there something that
you feel that you've gained from the MG experience that
you wouldn't have had without it.
Speaker 2 (24:27):
I think that I gained a whole new way of
looking at life. It comes down to what really matters
in life. Before MG, I didn't think too much about that,
about the bottom line, the baseline in life. I always
thought about just the numbers on top of the line.
Speaker 3 (24:47):
Oh, I want to get the kids through school.
Speaker 2 (24:49):
I want to get this, I want to keep this,
and I want to get more stuff and stuff and stuff.
But it's more about the individual than the stuff.
Speaker 3 (25:00):
You stuff.
Speaker 2 (25:00):
You're trying to get obtained. You're going all this to
get it, But what is it all about? And with
mg Okay, I came to a close encounter with deuff.
So when I'm sitting there, okay, if something happened to me,
what I'm gonna say, what I'm gonna regret that I
didn't do. These are the things that I want to
focus on, things that really matter. And if I could
(25:24):
just help my family and love them and pass that on.
I might not pass a lot of money on, but
I could pass those values of love and respect, honor,
things that really stay with kids.
Speaker 3 (25:40):
If I can rest knowing I did.
Speaker 2 (25:41):
That, that's enough for me and did the best that
I could to be a better person every day.
Speaker 1 (25:48):
Wonderful. Thank you so much Aerie for your time today
and your real inspiration. I mean to even know that
you've gotten to this point after all that you've been through.
I just want to let you know that it's very
inspiring to me and I appreciate this lesson.
Speaker 2 (26:02):
I appreciate you. And it's just an ongoing journey. It's
never over with as long as we get up. It's
a when and whin when if he hit the ground,
it's a way and win because being above ground is
the most important thing. And you got broth. You can
see beautiful sun come up, you can see flowers, trees,
nice artwork, you can see. You can not take it
(26:22):
for grint and live in the moment with that.
Speaker 1 (26:26):
Thank you so much. Thank you so much to Aery
for graciously sharing his story being a provider and stabilizing
force for so many in his community. It was so
beautiful to hear that he was able to find vulnerability
in his MG journey and ultimately make space for other
(26:46):
people to understand what you're going through too. Don't forget
to join us every other week to hear more powerful
stories of life with MG. Untold Stories was produced by
iHeartRadio in partnership with Argenics and Closer Look and hosted
by me Martine Hackett. Our executive producer is Mali Sosha,
(27:06):
our EP of post production is Matt Stillo, and our
producer is Sierra Kaiser. This episode was edited by Sierra
Spreen and written and produced by Tyree Rush.
Popular Podcasts
1. Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
2. Start Here
A straightforward look at the day's top news in 20 minutes. Powered by ABC News. Hosted by Brad Mielke.
3. Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations.