August 16, 2023 • 30 mins
While myasthenia gravis, or MG, can make navigating everyday tasks more difficult, it does not have to stop people living with MG from pursuing rich personal and professional lives. In this episode, Felicia and Sean talk about how they both remained driven as leaders in their industries while managing the debilitating condition. Often challenged by her MG symptoms, including vocal fatigue, Felicia learned how to find her voice and use it in new and powerful ways. She was able to build her consulting firm specifically helping entrepreneurs with disabilities start and grow their own businesses. Sean was an award-winning chef when his MG symptoms challenged his highly demanding lifestyle. Being forced to take time off showed him the value of taking breaks and ultimately, Sean learned new ways to be successful and mindful across all aspects of his life. They both share how they gained important lessons and powerful perspectives while learning to live with their MG.
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. The symptoms of MG can add various
challenges to daily function, like changes to speech and mobility.
In fact, one of the symptoms of MG is a
(01:10):
vocal fatigue. As we've seen Across the many conversations in
this season, people living with MG often understand pivots are
necessary to be able to adapt to the changes in
their personal lives and their professional goals. This is why
today I'm lucky enough to be joined by two successful entrepreneurs,
Felicia and Sean, whose lives were both changed by their
(01:31):
MG diagnosis in their own unique ways. Though their MG
journeys contained many nuanced challenges, they were both driven and
determined to make sure MG did not stop them from
pursuing their life goals. Felicia was diagnosed with Mayasthenia Gravis
almost ten years ago, facing continual hurdles to gain access
to proper care, Felicia was able to draw from her
(01:54):
experiences with MG to create her successful consulting firm, helping
other people with disability learned to build their own successful businesses.
Also joining us as Sean, a James Beard Award winning
chef and restauranteur known for his Southern cooking across many
restaurants in the Nashville area. In twenty fourteen, Sean was
diagnosed with MG. The diagnosis forced him to prioritize his health,
(02:17):
but through it all, he did not give up his career. Instead,
he reimagined what the restaurant environment could look like for
himself and his team and ultimately found balance in the
kitchen and beyond. Shan and Felicia, thank you so much
for joining us today. Can you give us the sense
(02:40):
of what your MG journey has looked like?
Speaker 2 (02:43):
Well, mine started as double vision.
Speaker 3 (02:46):
I had had food poisoning, so I thought it was
part of it, but that would only come in the
mornings and then resolve itself throughout the day. That then
my eyelids started trooping. You know, it's such a confusing diagnosis.
I went to one of the great universities and it
(03:08):
probably took I would say at least a year and
a half two years to get diagnosed. And in the
meantime I was treated for all kinds of things, resulting
in them operating on my eyes and my eye lids
thinking it was something else. So I ended up having
five or six surgeries in my eyes that I didn't need.
So that was just a huge part of that cycle
(03:32):
of just not being diagnosed properly because it's such a
difficult thing to diagnose. And finally all the neurologists got
together and they were just like, this is so mysterious,
let's test it for my esthenia. I had never heard
that word in my life, and I ended up being
a rare case that I passed all the tests that
(03:54):
all the end body tests. But I did have an
immediate positive response to the medication that has been classically
given to MJU patients, and that was my diagnosis.
Speaker 1 (04:09):
Felicie, could you tell us what your MG journey has
looked like?
Speaker 4 (04:13):
Okay, it was around twenty twelve. I went to someone's
house about thirty minutes lender my right I lid was drooping.
That was during the Sunday night. I woke up thinking
about I lid would be okay, but it wasn't. I
went to the er and the doctors had no idea
(04:35):
what was wrong. And it took about two years and
I did research and chould chout about energy and I
went to the ear one night after half him UH crisis,
and I asked them to test me, and that's when
(04:57):
my tenths came back.
Speaker 1 (05:00):
Posity, when you ask them to test you, that's how
you actually got your final diagnosis. Well, yes, definitely a
lot of similarities in terms of how you both have
gotten to where you are now, Felicia, did you feel that,
as a black woman that you experienced biases within the
healthcare system as you pursued this diagnosis of your treatment
for your condition.
Speaker 4 (05:21):
It was a black doctor that listened to me and
read the test for my stena. I've noticed differences were
not drawings forums and looked at comments on how the
doctors tested. That's said a white woman. They railed out
(05:46):
the tests prove so much read less. So yes, I
do feel there was a bias.
Speaker 1 (05:53):
Well, Sean, you also mentioned kind of you started treatment
before you actually had been formally dit So what was
it like when you went through those first round of
treatments and then ultimately received your diagnosis.
Speaker 3 (06:06):
Well, I'm a professional chef and my days are usually
about ten to twelve hours, and ten of those hours
you're standing. And it was the first time in my
career or my life that I couldn't physically do what
I wanted to do, and that was terrifying. I felt
(06:26):
helpless for the first time, and it was pretty scary.
So when I started the treatment, I remember the first
day I felt normal. I was just so thankful to
feel normal again, and luckily, for the most part, I
can experience that on a day to day basis. If
I don't take care of myself properly, I can definitely
(06:48):
feel like I call it an episode or a crisis
kind of coming on. And so for me, that's the
biggest thing is really the self discipline of biting my
tongue and saying I probably shouldn't work today.
Speaker 1 (07:03):
Both of you were actually navigating this road with their
MG diagnosis while chasing your career goals. Felicia, you were
juggling school, family, motherhood, and work on top of a
rare disease diagnosis, and in the midst of all that,
you made a decision to start your own business. What
were some of the challenges that you kind of encountered
as you were starting.
Speaker 4 (07:25):
It and out of the hospita several times a year.
I would that's a whole. Then my whole sister was
set down that ended up at a zoom. I still
had to work several times that risk for days and
hours at the time and that rise did that be fine?
(07:49):
But then around the hour from my agency my threeth
cralling hours used to be a very active I still am,
and there was savaging mentally, I lost my marriage I
know it was hard about childry. I had several times
(08:12):
I will say able to court or clean not properly.
I'm in the hand the strict However, I'm a fun
person mentally.
Speaker 1 (08:25):
And Sean, you also have had your challenges. How have
you had to overcome some of those hurdles of living
with MG and continuing with your line of work.
Speaker 3 (08:35):
I've been a chef for thirty years and for most
of my career had a reputation for being very, very
very intense and just a very serious perfectionist. And it's
just taught me about really the wonderful things about humility
and being reminded that you are human and we do
(08:56):
have limitations.
Speaker 2 (08:57):
It's helped me realize that.
Speaker 3 (08:59):
Sometimes when I'm having an episode or sometimes just out
of the blue, I'll feel resistance from the action that
I want to take, and that hits me with anxiety immediately.
But then that's my body saying, all right, you're good,
time to go. So I have to be able to
(09:19):
have the discipline and the communication with my team that
I got to go.
Speaker 2 (09:24):
It happened to me yesterday I was.
Speaker 3 (09:25):
Working an event and I cooked one hundred and fifty
burgers in the sun over an open fire, and there
were moments where I couldn't get the burgers off of
the girl fast enough because my muscles weren't responding.
Speaker 2 (09:38):
So I went home.
Speaker 3 (09:41):
The old Sean would have tried to work through that,
and it was interesting timing. I had an opportunity to
build a restaurant from the ground up, and so one
of the rooms that I designed, there's a massage table
and an adult sized bean bag, and a sound says
and for guided meditations, and a whole array of sound
(10:05):
therapy and aroma therapy and different frequency therapies, and it's
a room where anyone on the team can go and
rest their bodies. But also for us, most importantly the
nervous system, and so everything that I'm learning about how
to take better care of myself, I'm able to pass
(10:26):
on to my team of one hundred and fifty people.
But it's been great to see how others can be
inspired to take better care of themselves when they see
me doing it. In a lot of ways, my esthemia
has really recalibrated my life for the better. And it
was something that was an awful thing that happened, but
(10:48):
I choose to see it as a positive thing because
it was the first thing that taught me that life
is not work. And now I have a beautiful family,
a two year old and a four year old, and
I don't I'm not sure that would have ever happened.
Speaker 1 (11:04):
And for many with MG dysphasia or trouble chewing and
swallowing right is a symptom, and as a chef, this
must have been a particularly difficult symptom to deal with.
Have you experienced difficulties with swallowing.
Speaker 3 (11:18):
I do experience difficulties with swallowing occasionally, and just thinking
about not being able to drink water is pretty scary.
It'll just happen to me in the middle of service
when we're cooking for people, and I'll go to try
and drink water and it feels like the biggest air
bubble getting caught and like the water won't go down,
(11:39):
and so I literally have to run and spit it out.
And so those things are very important for a chef.
We are tasting, tasting, tasting, tasting NonStop. So yeah, that's
something that I have to keep a very close eye on.
But here's the thing, you know, I know all these things,
and it's the motivation to take better care myself. So
(12:00):
funny way, I'm actually the healthiest I've ever been. Wow.
Not when I'm in a crisis or an episode, of course,
but just overall. It has caused me to really step
back and realize the importance of I'm responsible for a
lot of people, and I'm responsible for my family, and
(12:20):
if I don't take care of myself, then that's not
going to work.
Speaker 2 (12:23):
Interesting how those things work out like that.
Speaker 1 (12:30):
We'll be back with more untold stories. Life with Myasthenia
Gravis After a quick break as a global imminology company
committed to improving the lives of people suffering from severe
autoimmune diseases, our Genics is dedicated to partnering with advocacy organizations,
including the Mayasthenia Gravis Holistic Society in support of the
(12:54):
MG community. The Miasthenia Gravis Holistic Society or MG Holistic Society,
is on a mission to empower MG patients and their
families to recognize that MG is part of life, but
life is more than MG. With the core philosophy focused
on whole body wellness, the MG Holistic Society focuses on
addressing the physical, emotional, and communication needs and challenges of
(13:17):
people living with MG by combining effective medical management with
complementary approaches emotional self care and healthy lifestyle habits. For
more information about the MG Holistic Society, visit www. MG
Holisticsociety dot org. And now back to untold stories Life
(13:39):
with Mayasthenia Gravis Felicia, I'm curious to know if you
have any forms of self care that having MG sort
of has allowed you to discover for yourself.
Speaker 4 (13:53):
I focus more on my health. I drift a lot
of water, I hit massa, I just ef two reefs.
I get accupulture, I take Jamie Walks. I meditate every morning.
Speaker 2 (14:10):
I jogle.
Speaker 4 (14:11):
I have more gratitude for the simple things of life.
People don't realize there was a muscle for everything. There
was a muscle for our eyes tony left and right.
There was a muscle for our smiles and our fowls.
There was a muscle fry tears, m zaf fects all that,
(14:39):
and I'm thankful then I'm here alive. I mean on
life support twice. The first time I turned into a baby,
I had to have people turn my head, run me over,
on my back, and my side white me. And this
(15:01):
was at the height of my career. After that, I
travel more, I enjoy nature more. I'm small things like
brotherflies and hand the pillows him more aware and in
the now, not worth about the future so much because
(15:25):
offender is a promise that's right.
Speaker 1 (15:29):
And it also seems like the work that you're doing
is also taking care of people. How has living with
MG shaped the perspective of impactful work that you do.
Speaker 4 (15:38):
I'd become more compassionate, and it takes a lot to
work with me. I'm putting people through programs see him
change their mindset because mindset, oftentimes it is the block
to the money, not having the right mindset, and oftentimes
(16:00):
some people abouts may have health soundedges that pred them
from completing something and the sudden amount of time. I
have more compassion because the right eye that's vivid, beautiful.
Speaker 1 (16:17):
And you are both business owners, and so it seems
to me that based on all that you've been through
so far in your journey, that success probably means something
a little bit different for you now. How is your
version of success changed as a result of your energy journey, Felicia,
How do you balance that energy with helping your clients
with the energy that you need to care for yourself.
Speaker 4 (16:38):
For example, sucss is capti vega oftentizes fa the amount
of zeros behind the number and how chrisy you are
able to obtain the amount rises are defined this siss,
But there are a different type of its. Is the
(17:01):
spiritual riches or what matters the most? Something should happen
overnight and all of that's taken away. However, a person
has a deep sis or spiritual awarnness, no matter what
happens in life, they're already successful in their mind. There's
(17:27):
not one day that hurs. Why that I look hit
myself as a failure. I look hit myself as you
dayd I wake up as a success because of one
I won't hot this morning. Number two, if I ain't
gonna tell one person out of my day, I'll take
(17:51):
my heart every job. That's all I've asked to do.
A pass of the thought process is yes, assume that
all this for me, but for those around me, A
lot of people loot, hit me a zero die do
that's this beautiful?
Speaker 1 (18:13):
So the success is in how you inspire other people
by doing what you do and doing it so well. Sean,
how have you been able to redefine success since your diagnosis.
Speaker 3 (18:24):
Success to a chef or a restaurant tour is oftentimes
associated with awards and write ups and popularity impacked dining rooms.
And that's how I saw things, because that's how I
was wired and trained. And after my life being changed
(18:45):
dramatically through being diagnosed with MG and I started to
slow down and realize the importance of health and happiness,
I started to really think about success in a different way.
And there's this psychoanalysis named Alfred Adler that I discovered.
He did a lot of work with Young and Freud,
(19:06):
and his main premises was success and or the meaning
of life is as simple as contributing each day to
something that you love or are connected to, or want
to be connected to, or a part of, or want
to be a part of. And I've been thinking about
that a lot ever since. And I think success for
(19:27):
me is a lasting contribution to my craft. And for
the longest time, I would think that would be something
to do with a plate of food. But now it's
really a mindset of how can I help the generation
that's coming up understand that success is about what I
(19:50):
call your circle of competence, And it's realizing how far
you can push yourself without jeopardizing your happiness and health,
because it does feel good to win, and it does
feel good to achieve, it does feel good to discover,
and those are things that are just wonderful to experience,
but they can be consuming if you let them.
Speaker 2 (20:12):
So it's been a great reminder for.
Speaker 1 (20:14):
Me to be able to redefine it in a way
that is healthy but also that acknowledges those wins. Yeah,
food is such an important part of finding it connection
between people, and both of you actually take a really
thoughtful approach to food in your MG journey. Now. I
do want to acknowledge that dietary needs vary from person
(20:34):
to person living with MG, so it's important for our
listeners to consult with a physician for recommendations about diet
and lifestyle changes. But I'm curious to know how you've
both modified your diet post diagnosis and how important diet
has been in your healing on your MG journey.
Speaker 4 (20:52):
Right now, it's like having expearbas roads. If find that something,
listen reason my system. For example, that may eat something
and immediately my throat closes throther it. I know that's
(21:14):
not for me. I'm from a vestarian and now I
for more protein through its SA dairy. So far, that's
what I've had. More health conscious, I prepare myself to
(21:35):
one of those cons that's the wrong They are able
to put premium man. I have to have the premium.
Speaker 1 (21:43):
Food, none of that low grade stuff. For you, Sean,
how about your approach to personal nutrition recipes and even
menu building at your restaurants is the result of your
MG experience.
Speaker 3 (21:59):
Well, luckily, my whole life has centered around clean food,
starting my grandmother's farm and growing up there and eating
straight from the garden, which then inspired me to cook.
But I went to the restaurant industry at a very
young age as a teenager and have been working in
restaurants purposely that focus on organic and natural and best
(22:21):
practices in agriculture. So luckily I didn't have to change
too much there, but I knew I did have to
dig a little bit deeper. And so what ended up
really helping me was taking a food sensitivity test. I
found out some things I didn't want to find out,
like I can't eat lime of beans and shrimp as
a Southerner. That's not very exciting. But I now have
(22:45):
a list that I carry around with me of foods
that I shouldn't eat, and now I know that, And
I wouldn't have known that if I hadn't had that
need to look a little bit deeper into what was
going into my body.
Speaker 1 (22:58):
We know that MG can also interfere with handling day
to day tasks, but we'd also I think one of
the things we don't often consider is its effect on
our personal relationships. I mean, you both sort of alluded
to this. How have you had to adjust your personal
relationships as you found yourself dealing with your symptoms of MG, Sean,
we could start.
Speaker 3 (23:16):
With you, Well, we have a new family, were new
parents and having a four year old boy and a
two year old girl. It's funny. I always say, I
work five days and then take two days off and
my last day off. By the end of the night,
I'm looking at my wife and saying, I'm kind of
(23:38):
looking forward to getting back to work and getting some rest.
It's so funny how that works. But for us, our
biggest challenges are when I have to lie in bed
all day because I'm in so much pain and my
muscles aren't working. She has to take care of the
kids by herself and there's guilt that along with that,
(24:01):
no matter how hard I try to talk myself through
that and process through that. I don't know if it's
just a biological thing or what, but the feeling of
not being able to take care of your kids is
also a very terrifying one that comes along with shame
and guilt for a few quick seconds. And I've got
to really remind myself that that's not the case. And
(24:24):
our wife is my biggest supporter, of course, and luckily
I don't have to.
Speaker 2 (24:29):
Worry about that because she fully understands.
Speaker 3 (24:31):
And again it makes her like Felicia was saying, so
thankful for the normal days and the regular days where
I'm not stuck in the bed and pain, and she
is there constantly checking in whether I'm in a crisis
episode or not. She's the person that reminds me to
check in with myself. And so it's a learning curve
(24:55):
without a doubt, and we just take it one day
at a time.
Speaker 1 (25:01):
How about you, Felicia, have you had to adjust your
personal relationships as you deal with your MG symptoms.
Speaker 4 (25:08):
I have. I've found closer to my children. They have
had to resist. I dorew less around the house now
since I'm that person that will stay up till three
four in the morning trending my house and I can't
(25:29):
through that now my immediate family, I've made sure they're
aware of my jugy. I pround this a juggy one
side expressed my feelings towards it. They were more compassionate.
(25:53):
It's hard sometimes to resist and it's depressing at times.
And all in all, I have two wonderful childry, our
fright son in law, three beautiful red sildry and they
(26:17):
love their minim my Crol. It's be around for them.
It's love this fossil.
Speaker 1 (26:28):
Beautiful And through both of your unique stories, it seems
that finding resilience has helped you achieve success despite the
challenges that you've been through. So as we wrap this up,
what would you say to others with MG who are
facing their own unique challenges.
Speaker 4 (26:45):
Felicia repaytient for the dactors, tell them what roots for you.
So if a new fadship they don't love you, to
love yourself and you're all of the road says as
a team to find the proper treatment. I know there's
(27:06):
a banda days a hit that go be for me,
but for.
Speaker 1 (27:10):
Everyone wonderful, beautiful advice. Thank you so much, Sean. What
would you say be your advice for those who are
going through MG?
Speaker 3 (27:19):
The largest impact for me is being around people like
Felicia and other people who have the right attitude towards
this and that is the importance of community. And for
the longest time, up until a few years ago, there
wasn't really a place for people with MG to gather
(27:42):
and share and collect information and learn and teach. But
now there is, thankfully, and it's podcasts like this and
just opportunities like this that help give us the confidence
and courage to say, yes, this is a scary, somewhat
(28:02):
unknown thing, but it has the ability to open a
lot of other doors. And those doors are best enjoyed
opened with an amazing community full of people who are
going through the same thing. And there's amazing strength in that.
I've witnessed it firsthand. I'm so thankful to connected with
Felicia today. You were incredibly inspiring.
Speaker 4 (28:26):
Likewise, so that needs a visit your restaurant.
Speaker 2 (28:29):
Yeah, come let me feed you.
Speaker 4 (28:31):
What's the name of Audrey?
Speaker 2 (28:33):
That was my grandmother's name, au d r e y.
Speaker 4 (28:39):
Okay, Well, I'm in Nashville to pay your all a visit.
Speaker 2 (28:43):
Please come and see me.
Speaker 1 (28:44):
Thank you so much Sean and Felicia for sharing your
journeys and your true inspiration in how you're getting through this.
And I really appreciate their audience that's listening to recognizing
that these are people who are also going through their
MG journey or have people in their lives that they're supporting.
And it seems like what you both have been going
(29:06):
through really is such an inspiration for realizing what can
be done and how MG does not have to stop you.
So thank you so much.
Speaker 4 (29:16):
It is so wwerful.
Speaker 1 (29:21):
Thank you so much Sean and Felicia for joining me
today gaining the vast perspectives of life with Mayasthenia Gravis.
I've been grateful to those gracious enough to share their
stories like Seawan and Felicia leading inspiring lives and businesses.
It's helpful to remember that every MG story is unique
and can contain even more challenges then may appear on
(29:43):
the surface, and whether it's learning how to manage your
workload or reevaluating your abilities altogether, each MG journey is
about learning how to best navigate your personal journey with
that I'm sad to say goodbye for now as we
close out this this first season of Untold Stories Life
with may Asthenia Gravis. I want to thank everyone who's
(30:05):
been listening and helping build a stronger MG community alongside
me until next time. Untold Stories was produced by iHeartRadio
in partnership with Argenix and Closer Look, and hosted by
me Martine Hackett. Our executive producer is Mali Sosha, our
EP of Post Production is Matt Stillo, and our producer
(30:27):
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. The symptoms of MG can add various
challenges to daily function, like changes to speech and mobility.
In fact, one of the symptoms of MG is a
(01:10):
vocal fatigue. As we've seen Across the many conversations in
this season, people living with MG often understand pivots are
necessary to be able to adapt to the changes in
their personal lives and their professional goals. This is why
today I'm lucky enough to be joined by two successful entrepreneurs,
Felicia and Sean, whose lives were both changed by their
(01:31):
MG diagnosis in their own unique ways. Though their MG
journeys contained many nuanced challenges, they were both driven and
determined to make sure MG did not stop them from
pursuing their life goals. Felicia was diagnosed with Mayasthenia Gravis
almost ten years ago, facing continual hurdles to gain access
to proper care, Felicia was able to draw from her
(01:54):
experiences with MG to create her successful consulting firm, helping
other people with disability learned to build their own successful businesses.
Also joining us as Sean, a James Beard Award winning
chef and restauranteur known for his Southern cooking across many
restaurants in the Nashville area. In twenty fourteen, Sean was
diagnosed with MG. The diagnosis forced him to prioritize his health,
(02:17):
but through it all, he did not give up his career. Instead,
he reimagined what the restaurant environment could look like for
himself and his team and ultimately found balance in the
kitchen and beyond. Shan and Felicia, thank you so much
for joining us today. Can you give us the sense
(02:40):
of what your MG journey has looked like?
Speaker 2 (02:43):
Well, mine started as double vision.
Speaker 3 (02:46):
I had had food poisoning, so I thought it was
part of it, but that would only come in the
mornings and then resolve itself throughout the day. That then
my eyelids started trooping. You know, it's such a confusing diagnosis.
I went to one of the great universities and it
(03:08):
probably took I would say at least a year and
a half two years to get diagnosed. And in the
meantime I was treated for all kinds of things, resulting
in them operating on my eyes and my eye lids
thinking it was something else. So I ended up having
five or six surgeries in my eyes that I didn't need.
So that was just a huge part of that cycle
(03:32):
of just not being diagnosed properly because it's such a
difficult thing to diagnose. And finally all the neurologists got
together and they were just like, this is so mysterious,
let's test it for my esthenia. I had never heard
that word in my life, and I ended up being
a rare case that I passed all the tests that
(03:54):
all the end body tests. But I did have an
immediate positive response to the medication that has been classically
given to MJU patients, and that was my diagnosis.
Speaker 1 (04:09):
Felicie, could you tell us what your MG journey has
looked like?
Speaker 4 (04:13):
Okay, it was around twenty twelve. I went to someone's
house about thirty minutes lender my right I lid was drooping.
That was during the Sunday night. I woke up thinking
about I lid would be okay, but it wasn't. I
went to the er and the doctors had no idea
(04:35):
what was wrong. And it took about two years and
I did research and chould chout about energy and I
went to the ear one night after half him UH crisis,
and I asked them to test me, and that's when
(04:57):
my tenths came back.
Speaker 1 (05:00):
Posity, when you ask them to test you, that's how
you actually got your final diagnosis. Well, yes, definitely a
lot of similarities in terms of how you both have
gotten to where you are now, Felicia, did you feel that,
as a black woman that you experienced biases within the
healthcare system as you pursued this diagnosis of your treatment
for your condition.
Speaker 4 (05:21):
It was a black doctor that listened to me and
read the test for my stena. I've noticed differences were
not drawings forums and looked at comments on how the
doctors tested. That's said a white woman. They railed out
(05:46):
the tests prove so much read less. So yes, I
do feel there was a bias.
Speaker 1 (05:53):
Well, Sean, you also mentioned kind of you started treatment
before you actually had been formally dit So what was
it like when you went through those first round of
treatments and then ultimately received your diagnosis.
Speaker 3 (06:06):
Well, I'm a professional chef and my days are usually
about ten to twelve hours, and ten of those hours
you're standing. And it was the first time in my
career or my life that I couldn't physically do what
I wanted to do, and that was terrifying. I felt
(06:26):
helpless for the first time, and it was pretty scary.
So when I started the treatment, I remember the first
day I felt normal. I was just so thankful to
feel normal again, and luckily, for the most part, I
can experience that on a day to day basis. If
I don't take care of myself properly, I can definitely
(06:48):
feel like I call it an episode or a crisis
kind of coming on. And so for me, that's the
biggest thing is really the self discipline of biting my
tongue and saying I probably shouldn't work today.
Speaker 1 (07:03):
Both of you were actually navigating this road with their
MG diagnosis while chasing your career goals. Felicia, you were
juggling school, family, motherhood, and work on top of a
rare disease diagnosis, and in the midst of all that,
you made a decision to start your own business. What
were some of the challenges that you kind of encountered
as you were starting.
Speaker 4 (07:25):
It and out of the hospita several times a year.
I would that's a whole. Then my whole sister was
set down that ended up at a zoom. I still
had to work several times that risk for days and
hours at the time and that rise did that be fine?
(07:49):
But then around the hour from my agency my threeth
cralling hours used to be a very active I still am,
and there was savaging mentally, I lost my marriage I
know it was hard about childry. I had several times
(08:12):
I will say able to court or clean not properly.
I'm in the hand the strict However, I'm a fun
person mentally.
Speaker 1 (08:25):
And Sean, you also have had your challenges. How have
you had to overcome some of those hurdles of living
with MG and continuing with your line of work.
Speaker 3 (08:35):
I've been a chef for thirty years and for most
of my career had a reputation for being very, very
very intense and just a very serious perfectionist. And it's
just taught me about really the wonderful things about humility
and being reminded that you are human and we do
(08:56):
have limitations.
Speaker 2 (08:57):
It's helped me realize that.
Speaker 3 (08:59):
Sometimes when I'm having an episode or sometimes just out
of the blue, I'll feel resistance from the action that
I want to take, and that hits me with anxiety immediately.
But then that's my body saying, all right, you're good,
time to go. So I have to be able to
(09:19):
have the discipline and the communication with my team that
I got to go.
Speaker 2 (09:24):
It happened to me yesterday I was.
Speaker 3 (09:25):
Working an event and I cooked one hundred and fifty
burgers in the sun over an open fire, and there
were moments where I couldn't get the burgers off of
the girl fast enough because my muscles weren't responding.
Speaker 2 (09:38):
So I went home.
Speaker 3 (09:41):
The old Sean would have tried to work through that,
and it was interesting timing. I had an opportunity to
build a restaurant from the ground up, and so one
of the rooms that I designed, there's a massage table
and an adult sized bean bag, and a sound says
and for guided meditations, and a whole array of sound
(10:05):
therapy and aroma therapy and different frequency therapies, and it's
a room where anyone on the team can go and
rest their bodies. But also for us, most importantly the
nervous system, and so everything that I'm learning about how
to take better care of myself, I'm able to pass
(10:26):
on to my team of one hundred and fifty people.
But it's been great to see how others can be
inspired to take better care of themselves when they see
me doing it. In a lot of ways, my esthemia
has really recalibrated my life for the better. And it
was something that was an awful thing that happened, but
(10:48):
I choose to see it as a positive thing because
it was the first thing that taught me that life
is not work. And now I have a beautiful family,
a two year old and a four year old, and
I don't I'm not sure that would have ever happened.
Speaker 1 (11:04):
And for many with MG dysphasia or trouble chewing and
swallowing right is a symptom, and as a chef, this
must have been a particularly difficult symptom to deal with.
Have you experienced difficulties with swallowing.
Speaker 3 (11:18):
I do experience difficulties with swallowing occasionally, and just thinking
about not being able to drink water is pretty scary.
It'll just happen to me in the middle of service
when we're cooking for people, and I'll go to try
and drink water and it feels like the biggest air
bubble getting caught and like the water won't go down,
(11:39):
and so I literally have to run and spit it out.
And so those things are very important for a chef.
We are tasting, tasting, tasting, tasting NonStop. So yeah, that's
something that I have to keep a very close eye on.
But here's the thing, you know, I know all these things,
and it's the motivation to take better care myself. So
(12:00):
funny way, I'm actually the healthiest I've ever been. Wow.
Not when I'm in a crisis or an episode, of course,
but just overall. It has caused me to really step
back and realize the importance of I'm responsible for a
lot of people, and I'm responsible for my family, and
(12:20):
if I don't take care of myself, then that's not
going to work.
Speaker 2 (12:23):
Interesting how those things work out like that.
Speaker 1 (12:30):
We'll be back with more untold stories. Life with Myasthenia
Gravis After a quick break as a global imminology company
committed to improving the lives of people suffering from severe
autoimmune diseases, our Genics is dedicated to partnering with advocacy organizations,
including the Mayasthenia Gravis Holistic Society in support of the
(12:54):
MG community. The Miasthenia Gravis Holistic Society or MG Holistic Society,
is on a mission to empower MG patients and their
families to recognize that MG is part of life, but
life is more than MG. With the core philosophy focused
on whole body wellness, the MG Holistic Society focuses on
addressing the physical, emotional, and communication needs and challenges of
(13:17):
people living with MG by combining effective medical management with
complementary approaches emotional self care and healthy lifestyle habits. For
more information about the MG Holistic Society, visit www. MG
Holisticsociety dot org. And now back to untold stories Life
(13:39):
with Mayasthenia Gravis Felicia, I'm curious to know if you
have any forms of self care that having MG sort
of has allowed you to discover for yourself.
Speaker 4 (13:53):
I focus more on my health. I drift a lot
of water, I hit massa, I just ef two reefs.
I get accupulture, I take Jamie Walks. I meditate every morning.
Speaker 2 (14:10):
I jogle.
Speaker 4 (14:11):
I have more gratitude for the simple things of life.
People don't realize there was a muscle for everything. There
was a muscle for our eyes tony left and right.
There was a muscle for our smiles and our fowls.
There was a muscle fry tears, m zaf fects all that,
(14:39):
and I'm thankful then I'm here alive. I mean on
life support twice. The first time I turned into a baby,
I had to have people turn my head, run me over,
on my back, and my side white me. And this
(15:01):
was at the height of my career. After that, I
travel more, I enjoy nature more. I'm small things like
brotherflies and hand the pillows him more aware and in
the now, not worth about the future so much because
(15:25):
offender is a promise that's right.
Speaker 1 (15:29):
And it also seems like the work that you're doing
is also taking care of people. How has living with
MG shaped the perspective of impactful work that you do.
Speaker 4 (15:38):
I'd become more compassionate, and it takes a lot to
work with me. I'm putting people through programs see him
change their mindset because mindset, oftentimes it is the block
to the money, not having the right mindset, and oftentimes
(16:00):
some people abouts may have health soundedges that pred them
from completing something and the sudden amount of time. I
have more compassion because the right eye that's vivid, beautiful.
Speaker 1 (16:17):
And you are both business owners, and so it seems
to me that based on all that you've been through
so far in your journey, that success probably means something
a little bit different for you now. How is your
version of success changed as a result of your energy journey, Felicia,
How do you balance that energy with helping your clients
with the energy that you need to care for yourself.
Speaker 4 (16:38):
For example, sucss is capti vega oftentizes fa the amount
of zeros behind the number and how chrisy you are
able to obtain the amount rises are defined this siss,
But there are a different type of its. Is the
(17:01):
spiritual riches or what matters the most? Something should happen
overnight and all of that's taken away. However, a person
has a deep sis or spiritual awarnness, no matter what
happens in life, they're already successful in their mind. There's
(17:27):
not one day that hurs. Why that I look hit
myself as a failure. I look hit myself as you
dayd I wake up as a success because of one
I won't hot this morning. Number two, if I ain't
gonna tell one person out of my day, I'll take
(17:51):
my heart every job. That's all I've asked to do.
A pass of the thought process is yes, assume that
all this for me, but for those around me, A
lot of people loot, hit me a zero die do
that's this beautiful?
Speaker 1 (18:13):
So the success is in how you inspire other people
by doing what you do and doing it so well. Sean,
how have you been able to redefine success since your diagnosis.
Speaker 3 (18:24):
Success to a chef or a restaurant tour is oftentimes
associated with awards and write ups and popularity impacked dining rooms.
And that's how I saw things, because that's how I
was wired and trained. And after my life being changed
(18:45):
dramatically through being diagnosed with MG and I started to
slow down and realize the importance of health and happiness,
I started to really think about success in a different way.
And there's this psychoanalysis named Alfred Adler that I discovered.
He did a lot of work with Young and Freud,
(19:06):
and his main premises was success and or the meaning
of life is as simple as contributing each day to
something that you love or are connected to, or want
to be connected to, or a part of, or want
to be a part of. And I've been thinking about
that a lot ever since. And I think success for
(19:27):
me is a lasting contribution to my craft. And for
the longest time, I would think that would be something
to do with a plate of food. But now it's
really a mindset of how can I help the generation
that's coming up understand that success is about what I
(19:50):
call your circle of competence, And it's realizing how far
you can push yourself without jeopardizing your happiness and health,
because it does feel good to win, and it does
feel good to achieve, it does feel good to discover,
and those are things that are just wonderful to experience,
but they can be consuming if you let them.
Speaker 2 (20:12):
So it's been a great reminder for.
Speaker 1 (20:14):
Me to be able to redefine it in a way
that is healthy but also that acknowledges those wins. Yeah,
food is such an important part of finding it connection
between people, and both of you actually take a really
thoughtful approach to food in your MG journey. Now. I
do want to acknowledge that dietary needs vary from person
(20:34):
to person living with MG, so it's important for our
listeners to consult with a physician for recommendations about diet
and lifestyle changes. But I'm curious to know how you've
both modified your diet post diagnosis and how important diet
has been in your healing on your MG journey.
Speaker 4 (20:52):
Right now, it's like having expearbas roads. If find that something,
listen reason my system. For example, that may eat something
and immediately my throat closes throther it. I know that's
(21:14):
not for me. I'm from a vestarian and now I
for more protein through its SA dairy. So far, that's
what I've had. More health conscious, I prepare myself to
(21:35):
one of those cons that's the wrong They are able
to put premium man. I have to have the premium.
Speaker 1 (21:43):
Food, none of that low grade stuff. For you, Sean,
how about your approach to personal nutrition recipes and even
menu building at your restaurants is the result of your
MG experience.
Speaker 3 (21:59):
Well, luckily, my whole life has centered around clean food,
starting my grandmother's farm and growing up there and eating
straight from the garden, which then inspired me to cook.
But I went to the restaurant industry at a very
young age as a teenager and have been working in
restaurants purposely that focus on organic and natural and best
(22:21):
practices in agriculture. So luckily I didn't have to change
too much there, but I knew I did have to
dig a little bit deeper. And so what ended up
really helping me was taking a food sensitivity test. I
found out some things I didn't want to find out,
like I can't eat lime of beans and shrimp as
a Southerner. That's not very exciting. But I now have
(22:45):
a list that I carry around with me of foods
that I shouldn't eat, and now I know that, And
I wouldn't have known that if I hadn't had that
need to look a little bit deeper into what was
going into my body.
Speaker 1 (22:58):
We know that MG can also interfere with handling day
to day tasks, but we'd also I think one of
the things we don't often consider is its effect on
our personal relationships. I mean, you both sort of alluded
to this. How have you had to adjust your personal
relationships as you found yourself dealing with your symptoms of MG, Sean,
we could start.
Speaker 3 (23:16):
With you, Well, we have a new family, were new
parents and having a four year old boy and a
two year old girl. It's funny. I always say, I
work five days and then take two days off and
my last day off. By the end of the night,
I'm looking at my wife and saying, I'm kind of
(23:38):
looking forward to getting back to work and getting some rest.
It's so funny how that works. But for us, our
biggest challenges are when I have to lie in bed
all day because I'm in so much pain and my
muscles aren't working. She has to take care of the
kids by herself and there's guilt that along with that,
(24:01):
no matter how hard I try to talk myself through
that and process through that. I don't know if it's
just a biological thing or what, but the feeling of
not being able to take care of your kids is
also a very terrifying one that comes along with shame
and guilt for a few quick seconds. And I've got
to really remind myself that that's not the case. And
(24:24):
our wife is my biggest supporter, of course, and luckily
I don't have to.
Speaker 2 (24:29):
Worry about that because she fully understands.
Speaker 3 (24:31):
And again it makes her like Felicia was saying, so
thankful for the normal days and the regular days where
I'm not stuck in the bed and pain, and she
is there constantly checking in whether I'm in a crisis
episode or not. She's the person that reminds me to
check in with myself. And so it's a learning curve
(24:55):
without a doubt, and we just take it one day
at a time.
Speaker 1 (25:01):
How about you, Felicia, have you had to adjust your
personal relationships as you deal with your MG symptoms.
Speaker 4 (25:08):
I have. I've found closer to my children. They have
had to resist. I dorew less around the house now
since I'm that person that will stay up till three
four in the morning trending my house and I can't
(25:29):
through that now my immediate family, I've made sure they're
aware of my jugy. I pround this a juggy one
side expressed my feelings towards it. They were more compassionate.
(25:53):
It's hard sometimes to resist and it's depressing at times.
And all in all, I have two wonderful childry, our
fright son in law, three beautiful red sildry and they
(26:17):
love their minim my Crol. It's be around for them.
It's love this fossil.
Speaker 1 (26:28):
Beautiful And through both of your unique stories, it seems
that finding resilience has helped you achieve success despite the
challenges that you've been through. So as we wrap this up,
what would you say to others with MG who are
facing their own unique challenges.
Speaker 4 (26:45):
Felicia repaytient for the dactors, tell them what roots for you.
So if a new fadship they don't love you, to
love yourself and you're all of the road says as
a team to find the proper treatment. I know there's
(27:06):
a banda days a hit that go be for me,
but for.
Speaker 1 (27:10):
Everyone wonderful, beautiful advice. Thank you so much, Sean. What
would you say be your advice for those who are
going through MG?
Speaker 3 (27:19):
The largest impact for me is being around people like
Felicia and other people who have the right attitude towards
this and that is the importance of community. And for
the longest time, up until a few years ago, there
wasn't really a place for people with MG to gather
(27:42):
and share and collect information and learn and teach. But
now there is, thankfully, and it's podcasts like this and
just opportunities like this that help give us the confidence
and courage to say, yes, this is a scary, somewhat
(28:02):
unknown thing, but it has the ability to open a
lot of other doors. And those doors are best enjoyed
opened with an amazing community full of people who are
going through the same thing. And there's amazing strength in that.
I've witnessed it firsthand. I'm so thankful to connected with
Felicia today. You were incredibly inspiring.
Speaker 4 (28:26):
Likewise, so that needs a visit your restaurant.
Speaker 2 (28:29):
Yeah, come let me feed you.
Speaker 4 (28:31):
What's the name of Audrey?
Speaker 2 (28:33):
That was my grandmother's name, au d r e y.
Speaker 4 (28:39):
Okay, Well, I'm in Nashville to pay your all a visit.
Speaker 2 (28:43):
Please come and see me.
Speaker 1 (28:44):
Thank you so much Sean and Felicia for sharing your
journeys and your true inspiration in how you're getting through this.
And I really appreciate their audience that's listening to recognizing
that these are people who are also going through their
MG journey or have people in their lives that they're supporting.
And it seems like what you both have been going
(29:06):
through really is such an inspiration for realizing what can
be done and how MG does not have to stop you.
So thank you so much.
Speaker 4 (29:16):
It is so wwerful.
Speaker 1 (29:21):
Thank you so much Sean and Felicia for joining me
today gaining the vast perspectives of life with Mayasthenia Gravis.
I've been grateful to those gracious enough to share their
stories like Seawan and Felicia leading inspiring lives and businesses.
It's helpful to remember that every MG story is unique
and can contain even more challenges then may appear on
(29:43):
the surface, and whether it's learning how to manage your
workload or reevaluating your abilities altogether, each MG journey is
about learning how to best navigate your personal journey with
that I'm sad to say goodbye for now as we
close out this this first season of Untold Stories Life
with may Asthenia Gravis. I want to thank everyone who's
(30:05):
been listening and helping build a stronger MG community alongside
me until next time. Untold Stories was produced by iHeartRadio
in partnership with Argenix and Closer Look, and hosted by
me Martine Hackett. Our executive producer is Mali Sosha, our
EP of Post Production is Matt Stillo, and our producer
(30:27):
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.