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.
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Episode Transcript
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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. 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
(03:04):
the great universities and it 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
(03:26):
my eyes that I didn't need. So that was just
a huge part of that cycle 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,
(03:48):
and I ended up being a rare case that I
passed all the tests that all the end body tests.
But I did have an immediate positive response to the
medication that has been classically given to INJU patients, and
that was my diagnosis.
Speaker 1 (04:09):
Felicie, could you tell us what your MG journey has
looked like?
Speaker 3 (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 found out 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
(04:57):
when 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 3 (05:21):
It was a black doctor that listened to me and
read the test for my stenia. 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 so much less. So, yes, I do feel
there was a bias.
Speaker 1 (05:53):
Woll Sean. You also mentioned kind of you started treatment
before you actually had been formally died. So what was
it like when you went through those first round of
treatments and then ultimately received your diagnosis.
Speaker 2 (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,
in my life that I couldn't physically do what I
wanted to do, and that was terrifying. I felt helpless
(06:27):
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 feel
(06:49):
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 3 (07:25):
It and out of the hospital several times a year.
I would that's a whole Then my whole sister was
set down that ended up in 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 abound the hour to my energy, my threath
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 Seldry. I had several times
(08:12):
I was say able to court or clean not probably
I'm said the hand was strict. However, I'm a fun person.
Speaker 1 (08:24):
Mentally, 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 2 (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 that'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. It's helped me realize that 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.
(09:17):
So I have to be able to have the discipline
and the communication with my team that I got to go.
It happened to me yesterday I was 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, So I went home.
(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 2 (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. 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
(12:53):
MG community. The Maasthenia 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 3 (13:53):
I focus more on my health. I drift a lot
of water. I hit massa, I just ever two reefs.
I get accupulture, I take Jady Walks. I meditate every morning.
I joggle. I have more for gratitude, for the simple
(14:14):
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 for our tears.
(14:36):
M z ef fects all that, and I'm thankful then
I'm here alive. I been 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, wipe me. And this was at
(15:02):
the hand of my career. After that, I travel more
and dry nature more. I'm some small things like brotherflies
and hand the pillows him more aware and in the
now not worth about the future so much because offenser
(15:26):
isn't promised.
Speaker 1 (15:28):
That's right, 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 3 (15:38):
I'd become more compassionate, and it takes a lot to
work with me. I'm putting people through programs him change
their mindset because mindset, oftentimes it is the block to
the money, not having the right mindset, and oftentimes some
(16:00):
people about may have health sounds that pred them from
confuting 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 3 (16:38):
For example, sucss is captivaga oftentized f the amount of
zeros behind the number and how chrisy you are able
to ruptain the amount rits are defined this siss. But
there are a different type of its is these spiritual
(17:02):
hich is or what matters the most. Something should happen
overnight and all of that's taken away. However, a person
has a deep seen it's a spiritual awarnness. No martdo
what happens in life. They're already successful in their mind.
(17:26):
There's not one day that hurs. Why that I look
hit myself as a failure. I look hit myself as
you dayd I wrap up as a success because of
one I won't hope this morning. Number two. If I'm
(17:46):
ain't gonna tall he one person out of my day,
I've take my heart every job. That's all I've asked
to do. A pass of the thought process is les
assume that all this for me, but for those around me.
A lot of people that hit me a zero die
(18:09):
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 2 (18:24):
Success to a chef or a restaurant tour is oftentimes
associated with awards and write ups and popularity and packed
dining rooms. And that's how I saw things because that's
how I was wired and trained. And after my life
being changed dramatically through being diagnosed with MG and I
(18:48):
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, and his main premises was success and
(19:11):
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 me is a lasting contribution to my craft.
(19:32):
And for the longest time, I would think that would
be something to do with the 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 call your circle of competence, and it's realizing
(19:54):
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.
So it's been a great reminder for me to.
Speaker 1 (20:15):
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 to person
living with MG, so it's important for our listeners to
(20:38):
consult with a physician for recommendations about diet and lifestyle changes.
But I'm curious to know how you've both modified your
diets post diagnosis and how important diet has been in
your healing on your MG journey.
Speaker 3 (20:52):
Right now, it's like this expearivation roads I find that
something this reason my system. For example, that may eat
something and immediately my throat closes. I say, for all
(21:13):
of it, I know that's not for me, I'm from
a vestarian and now for more protein through its dairy.
So far, that's what I have had. More health conscious,
I prepare myself to one of those cons that's the
(21:38):
wrong They are able to put premium man. I have
to have the premium food.
Speaker 1 (21:45):
None of that low grade stuff. For you have, Sean,
how about your approach to personal nutrition recipes and even
menu building at your restaurants is the result of your
MG experience.
Speaker 2 (21:58):
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 with you, Well, we.
Speaker 2 (23:18):
Have a new family. We're 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 looking forward to getting
(23:38):
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, no matter how
(24:03):
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 our wife is
(24:25):
my biggest supporter, of course, and luckily I don't have
to worry about that because she fully understands. 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.
(24:49):
She's the person that reminds me to check in with myself.
And so it's a learning curve 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. I have.
Speaker 3 (25:09):
I've found closer to my children. They have had to
resist I Drew less around the house now, since I'm
that person that will stay up till three four the morning,
creanding my house and I can't through that now. My
(25:32):
immediate family, I've made sure they're aware of my jugy.
I pound this a juggy. One side expressed my feelings
towards it. They were more compassionate. It's hard sometimes to
(25:55):
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 love their minim my crole.
(26:23):
It's th real around for them. It's lowest fossil beautiful.
Speaker 1 (26:28):
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 3 (26:45):
Felicia repaytient for the dactors, tell them what roots for you.
So if a new passion, they don't love you like
you love yourself, and you're all of the roads as
a team to find the proper treatment. I know there's
(27:06):
a band a day as a hit.
Speaker 1 (27:08):
Now go be for me, but for everyone, wonderful, beautiful advice.
Thank you so much, Sean. What would you say be
your advice for those who are going through MG?
Speaker 2 (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
unknown thing, but it has the ability to open a
(28:07):
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.
Speaker 3 (28:23):
You're incredibly inspiring right well so that you visit your restaurant.
Speaker 2 (28:29):
Yeah, come let me feed you.
Speaker 1 (28:31):
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 journeys or have people in their lives that they're supporting.
And it seems like what you both have been going
(28:52):
through really is such an inspiration for realizing what can
be done and how MG does not have to se
so thank you so much.
Speaker 3 (29:02):
This is so wilful.
Speaker 1 (29:08):
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 Shawn and Felicia, leading inspiring lives and businesses.
It's helpful to remember that every MG story is unique
and can contain even more challenges than may appear on
(29:30):
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 first season of Untold Stories Life with Mayasthenia Gravis.
(29:50):
I want to thank everyone who's been listening and helping
build a stronger MG community alongside me until next Time.
Untold Stories was produced by iHeartRadio in partnership with Argenics
and Closer Look, and hosted by Me Martin Hackett. Our
executive producer is Mali Sosha, our EP of Post Production
(30:11):
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. 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. 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
(03:04):
the great universities and it 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
(03:26):
my eyes that I didn't need. So that was just
a huge part of that cycle 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,
(03:48):
and I ended up being a rare case that I
passed all the tests that all the end body tests.
But I did have an immediate positive response to the
medication that has been classically given to INJU patients, and
that was my diagnosis.
Speaker 1 (04:09):
Felicie, could you tell us what your MG journey has
looked like?
Speaker 3 (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 found out 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
(04:57):
when 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 3 (05:21):
It was a black doctor that listened to me and
read the test for my stenia. 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 so much less. So, yes, I do feel
there was a bias.
Speaker 1 (05:53):
Woll Sean. You also mentioned kind of you started treatment
before you actually had been formally died. So what was
it like when you went through those first round of
treatments and then ultimately received your diagnosis.
Speaker 2 (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,
in my life that I couldn't physically do what I
wanted to do, and that was terrifying. I felt helpless
(06:27):
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 feel
(06:49):
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 3 (07:25):
It and out of the hospital several times a year.
I would that's a whole Then my whole sister was
set down that ended up in 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 abound the hour to my energy, my threath
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 Seldry. I had several times
(08:12):
I was say able to court or clean not probably
I'm said the hand was strict. However, I'm a fun person.
Speaker 1 (08:24):
Mentally, 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 2 (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 that'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. It's helped me realize that 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.
(09:17):
So I have to be able to have the discipline
and the communication with my team that I got to go.
It happened to me yesterday I was 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, So I went home.
(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 2 (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. 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
(12:53):
MG community. The Maasthenia 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 3 (13:53):
I focus more on my health. I drift a lot
of water. I hit massa, I just ever two reefs.
I get accupulture, I take Jady Walks. I meditate every morning.
I joggle. I have more for gratitude, for the simple
(14:14):
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 for our tears.
(14:36):
M z ef fects all that, and I'm thankful then
I'm here alive. I been 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, wipe me. And this was at
(15:02):
the hand of my career. After that, I travel more
and dry nature more. I'm some small things like brotherflies
and hand the pillows him more aware and in the
now not worth about the future so much because offenser
(15:26):
isn't promised.
Speaker 1 (15:28):
That's right, 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 3 (15:38):
I'd become more compassionate, and it takes a lot to
work with me. I'm putting people through programs him change
their mindset because mindset, oftentimes it is the block to
the money, not having the right mindset, and oftentimes some
(16:00):
people about may have health sounds that pred them from
confuting 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 3 (16:38):
For example, sucss is captivaga oftentized f the amount of
zeros behind the number and how chrisy you are able
to ruptain the amount rits are defined this siss. But
there are a different type of its is these spiritual
(17:02):
hich is or what matters the most. Something should happen
overnight and all of that's taken away. However, a person
has a deep seen it's a spiritual awarnness. No martdo
what happens in life. They're already successful in their mind.
(17:26):
There's not one day that hurs. Why that I look
hit myself as a failure. I look hit myself as
you dayd I wrap up as a success because of
one I won't hope this morning. Number two. If I'm
(17:46):
ain't gonna tall he one person out of my day,
I've take my heart every job. That's all I've asked
to do. A pass of the thought process is les
assume that all this for me, but for those around me.
A lot of people that hit me a zero die
(18:09):
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 2 (18:24):
Success to a chef or a restaurant tour is oftentimes
associated with awards and write ups and popularity and packed
dining rooms. And that's how I saw things because that's
how I was wired and trained. And after my life
being changed dramatically through being diagnosed with MG and I
(18:48):
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, and his main premises was success and
(19:11):
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 me is a lasting contribution to my craft.
(19:32):
And for the longest time, I would think that would
be something to do with the 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 call your circle of competence, and it's realizing
(19:54):
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.
So it's been a great reminder for me to.
Speaker 1 (20:15):
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 to person
living with MG, so it's important for our listeners to
(20:38):
consult with a physician for recommendations about diet and lifestyle changes.
But I'm curious to know how you've both modified your
diets post diagnosis and how important diet has been in
your healing on your MG journey.
Speaker 3 (20:52):
Right now, it's like this expearivation roads I find that
something this reason my system. For example, that may eat
something and immediately my throat closes. I say, for all
(21:13):
of it, I know that's not for me, I'm from
a vestarian and now for more protein through its dairy.
So far, that's what I have had. More health conscious,
I prepare myself to one of those cons that's the
(21:38):
wrong They are able to put premium man. I have
to have the premium food.
Speaker 1 (21:45):
None of that low grade stuff. For you have, Sean,
how about your approach to personal nutrition recipes and even
menu building at your restaurants is the result of your
MG experience.
Speaker 2 (21:58):
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 with you, Well, we.
Speaker 2 (23:18):
Have a new family. We're 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 looking forward to getting
(23:38):
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, no matter how
(24:03):
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 our wife is
(24:25):
my biggest supporter, of course, and luckily I don't have
to worry about that because she fully understands. 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.
(24:49):
She's the person that reminds me to check in with myself.
And so it's a learning curve 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. I have.
Speaker 3 (25:09):
I've found closer to my children. They have had to
resist I Drew less around the house now, since I'm
that person that will stay up till three four the morning,
creanding my house and I can't through that now. My
(25:32):
immediate family, I've made sure they're aware of my jugy.
I pound this a juggy. One side expressed my feelings
towards it. They were more compassionate. It's hard sometimes to
(25:55):
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 love their minim my crole.
(26:23):
It's th real around for them. It's lowest fossil beautiful.
Speaker 1 (26:28):
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 3 (26:45):
Felicia repaytient for the dactors, tell them what roots for you.
So if a new passion, they don't love you like
you love yourself, and you're all of the roads as
a team to find the proper treatment. I know there's
(27:06):
a band a day as a hit.
Speaker 1 (27:08):
Now go be for me, but for everyone, wonderful, beautiful advice.
Thank you so much, Sean. What would you say be
your advice for those who are going through MG?
Speaker 2 (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
unknown thing, but it has the ability to open a
(28:07):
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.
Speaker 3 (28:23):
You're incredibly inspiring right well so that you visit your restaurant.
Speaker 2 (28:29):
Yeah, come let me feed you.
Speaker 1 (28:31):
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 journeys or have people in their lives that they're supporting.
And it seems like what you both have been going
(28:52):
through really is such an inspiration for realizing what can
be done and how MG does not have to se
so thank you so much.
Speaker 3 (29:02):
This is so wilful.
Speaker 1 (29:08):
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 Shawn and Felicia, leading inspiring lives and businesses.
It's helpful to remember that every MG story is unique
and can contain even more challenges than may appear on
(29:30):
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 first season of Untold Stories Life with Mayasthenia Gravis.
(29:50):
I want to thank everyone who's been listening and helping
build a stronger MG community alongside me until next Time.
Untold Stories was produced by iHeartRadio in partnership with Argenics
and Closer Look, and hosted by Me Martin Hackett. Our
executive producer is Mali Sosha, our EP of Post Production
(30:11):
is Matt Stillo, and our producer is Sierra Kaiser. This
episode was edited by Sierra Spreen and written and produced
by Tyree Rush
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