August 6, 2025 • 38 mins
In Part 2 of Invisible Battles: Chronic Illness and the Will to Live Fully, host Karen Jayne Marchione returns by heartfelt demand to continue the conversation on strength, perseverance, and the unseen struggles so many silently endure.
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Speaker 1 (00:45):
Hi, I'm Karen MARCIONI your host for the Hope Show,
which is inspired by my book Hope How other people
endure about everyday people overcoming life's challenges. Welcome today to
my co host Marlany Cruz. Hi, everybody, I'm so glad
(01:05):
that you're here. Thanks, welcome much, thank you. So this
week we are continuing the conversation of living fully with
an invisible illness. In the book How to Be Sick,
which is this one here by Tony Bernard. She offers
a compassionate, practical, and deeply personal guide for navigating life
(01:29):
with chronic illness. She draws on her Buddhist philosophy to
foster to foster emotional healing and inner peace. She was
diagnosed with a debilitating illness that left her mostly housebound.
Bernard transformed her suffering into an opportunity to cultivate, to
(01:51):
cultivate wisdom, mindfulness, and self compassion. She relays how she
put this book together and with great difficulty. She wrote
it lying in bed with the laptop on her stomach,
notes strewn around on her blanket, and her printer within
(02:14):
arms reach. Some days she would get so involved in
a particular chapter that she would work too long, and
then she paid the price. She wouldn't be able to
work for you know, maybe a week or depending, maybe
even a few weeks.
Speaker 2 (02:29):
Wow.
Speaker 1 (02:32):
So her inspiration came from a person that she only
knew for a short time. So Tony was at a
meditation retreat and each person had to do a work meditation,
meaning that they had to that they were responsible for
performing a task each day to help the retreat one smoothly.
(02:53):
So she shared this job with a woman named mary Anne,
who was about the same age as Tony, but she
did look a little frail, yet they shared the work equally.
She had a kind face and a gentle smile. On
the seventh day of the retreat, another woman accompanied Marianne.
(03:17):
The new woman followed Tony outside. As they began to
walk towards the teacher's dining room, the woman asked if
she knew Tony, if she knew Marianne very well, and
the woman shook her head no, and or Tony shook
her head no, and the woman proceeded to tell her
that she was very sick and she only has a
(03:38):
couple weeks to live. So, to Tony's distress, breaking her silence,
she asked one of the teachers if she knew about Marianne,
and the teacher said that on the information sheet that
they fill out to go to a retreat, under the
question that says, is there anything you want you're teach
(04:00):
to know about you, Marianne wrote that she only had
two weeks to live. Wow, but it won't affect her practice.
I'm thinking, how brave and it wouldn't affect her practice. Unbelievable.
Speaker 3 (04:19):
And just the fact that she wrote that, right, she
wanted it to be known, which means that she wants
people to understand these are these may be the last
interactions that I have with you, right, So it's another
way of saying, let's make this cow right have a
(04:39):
short amount of time, right, right.
Speaker 1 (04:41):
And that she wanted to spend her last few days
at this special meditation retreat. So the next day her
spot was empty, and in memory of Marianne, Tony vows
to do her best not to let her illness affect
(05:05):
her practice and to let her practice continue to teach
her how to be sick and enable her to help
others who are chronically ill and those that care for them.
I just thought, Wow, so magnanimous.
Speaker 3 (05:24):
Yeah, very impactful, and so she only had Therefore one day.
Speaker 2 (05:29):
The next day she wasn't there anymore.
Speaker 1 (05:32):
She might it wasn't clear, So it might have been
a few days before this person was with her and
then and then she found out more information. It might
have been like a week. Perhaps it doesn't. It doesn't
really say how long it was.
Speaker 3 (05:51):
That puts things into perspective. Especially she's not feeling well herself,
and now she's hearing this right right, It's like it
must have been like a big shock, like, wow, this
could be me right right.
Speaker 1 (06:04):
Possibly, I don't know if this was a retreat before
she got sick or after. Yeah, As Tony with an
Eye was about to begin her twentieth year as a
law professor, she and her husband, Tony with a hy
(06:24):
decided to celebrate and treat themselves to a special vacation.
I just wanted to say that to clarify, but most
of the time I'm talking about the author, Tony with
an Eye, right, But she mentioned it in the book,
so I thought I would mention it to everyone. So
Tony and Tony they decided to treat themselves to a
(06:45):
special vacation, and it was going to be a trip
to Paris, and it was a big deal for them.
She was looking forward to the three weeks that they
were going to immerse themselves in the city of Lights,
and it was it was really special because this is
not something that they often did. Their original flight was delayed,
(07:07):
and because they acted quickly, the agent was able to
find two other flights for them to begin this special vacation.
Once off the ground, they praised themselves. Ah pride, caution, caution,
the Buddha would have said. Several doctors told them that
(07:30):
the odds are high that she picked up the virus
from one of those flights. How sad. Yeah, So they
wandered around the first day waiting for the sunset to
adjust to the new time zone. She didn't feel very
well the next day, but she attributed it to jetlag,
(07:52):
and she continued to feel awful, but initially refused to
believe it was anything but jetlag. Soon she developed flu
like symptoms and couldn't get out of bed. Knowing they
had two weeks left, she felt it was no big deal.
Yet the days left dwindled and dwindled. She finally went
(08:15):
to a doctor who told her it was the flu,
and she was given antibiotics. The day before they left,
she was beginning and fly home. She was beginning to
feel fine and she felt she was on the road
to recovery. A week after returning home, she had a relapse.
(08:38):
It was early June and law school started at the
end of August, so she mentioned her concerns to the dean,
but was confident that she would be fine by then.
In mid July, feeling stronger, she made plans to attend
a ten day meditation retreat about two hours from her home.
(08:58):
So she went on another retreat, and during that time
it was when her Parisian flew turned from acute to chronic.
She started to document how she was feeling each day.
It wasn't meant to be a diary, but she was
just so curious at that she felt she had to
(09:21):
keep track of how she was feeling each day. Monday,
she woke up feeling sick. That night she felt like
she was in a stupor, and Tuesday definitely sick. She
didn't go back to work at the end of August
in two thousand and one. That fall, her life was
(09:42):
spent in bed or at doctor's offices.
Speaker 3 (09:46):
Wow, what a turnaround and a change of her environment
and her lifestyle, so drastically right, yes, and without knowing
what's really going on. So at this point I'm guessing
that she didn't know the specific condition.
Speaker 1 (10:01):
That she had yet, right, did she? No?
Speaker 2 (10:04):
No, she has no clue.
Speaker 1 (10:05):
No, she doesn't know what's wrong.
Speaker 3 (10:07):
So at this point she could be thinking, this could
be a flu that's lasting longer than usual.
Speaker 1 (10:15):
Correct, Right, So she does start to go to different doctors.
She entered a phase of illness that she needed to
rule out every cause that could show possibly show up
in blood tests, cat scans, MRIs, or any other procedure.
So that fall she saw three infectious disease doctors, two
(10:41):
e NT specialists, a rheumatologist, an endocrinologist, a gastro entrologist,
a neurologist, a cardiologist, and two acupuncturists.
Speaker 2 (10:54):
Uh psychologists. By any chance after that, I would have needed.
Speaker 1 (10:58):
One, I know, oh my lot, a lot, and all
running their own battery of tests, and all of which
indicated nothing was wrong. But seeing all those doctors, I
mean that also takes a lot of time, absolutely, and
then the tests take all that time and they couldn't
(11:20):
find anything. So she dragged herself to law school twice
a week to teach the classes in the spring of
two thousand and two.
Speaker 3 (11:29):
Wow.
Speaker 1 (11:31):
Looking back, she realizes that that was a mistake to
continue working while she was sick, even though she didn't
know what it was it was, It most likely worsened
her condition. Yet there's the financial need to keep working.
And secondly, there's the utter disbelief that this is happening
(11:53):
to you. It's so hard to truly recognize your chronically
ill and accept that the illness is going to require
you to change your plans for life in ways you
never imagined.
Speaker 3 (12:10):
Yeah, and it has to be devastating to not know
what's going on.
Speaker 2 (12:16):
Once you know, once you.
Speaker 3 (12:18):
Have the ability to exactly pinpoint what it is, then
you can move forward to living with it and doing
what you need to do to be able to continue healthy.
But just the fact that she went to doctor, a doctor,
a doctor, another doctor and they didn't find anything that
has to be extremely draining.
Speaker 1 (12:38):
Oh, it's got to be really disappointing and frustrating. Yes, right,
all those adjectives. It's just so. Since getting sick in Paris,
she did have some diagnoses. She had a laundry list
of diagnoses, there were eight diseases and condition. I could
(13:01):
list them, but there were eight diseases that no one
really wants to have. So as a Buddhist, Tony discusses
the four noble truths. The first noble truth is Buddha
describing experiences we all have in our lifetimes in birth, aging, illness, death, sorrow, pain, grief,
(13:29):
and not getting what we want. We really all experience
those things, and for Tony this helps her gracefully accept
being chronically ill. The second noble truth is want, don't
want mind, and Buddha refers to this as the unquenchable thirst,
(13:53):
meaning we're unable to accept that our lives will be
a mixture of joys and sorrow rose, pleasantness and unpleasantness,
success and disappointments. And it's true we all do have
both of those things.
Speaker 2 (14:12):
Yeah.
Speaker 1 (14:13):
The third noble truth is the end of dacca, which
is enlightenment, and we can reach the end of suffering,
which is what that means in the mind, even when
the body is suffering.
Speaker 2 (14:30):
Ooh, that is deep.
Speaker 3 (14:32):
Yes, that is deep, because that means that means several things.
It sounds simple, but it means several things. It means
that you have to learn how to live with pain
correct right, yes, and make it enjoyable, make the journey
enjoyable enough that the pain doesn't overtake right right. And
(14:54):
that takes courage, that takes discipline, that takes resiliency. That
I mean, so many factors that come into play, right.
Speaker 1 (15:03):
And one of the things I don't say, but it's
not giving up, it's giving in. It's kind of surrendering
to the pain. Is what she talks about in the book. Also,
there's so much more in this book. My mind was
swirling as I was reading the book, and I try
(15:25):
to create enough to make people either want to read
the book or understand just enough enough enough. The fourth
Noble Truth Buddhist sets out a lesson plan to accomplish
the Eightfold Path. And I'll just highlight what that means.
(15:47):
Wise understanding, which refers to seeing the truth of the
human condition, so we know what to expect in life.
Wise in tension, which manifests as kindness, compassion, empathetic joy
(16:08):
and calm, abiding wise speech wise, action wise mindfulness keeping
ourselves in the present moment. And wise effort effort that
helps alleviate suffering in ourselves and others. In the chapter
(16:31):
finding Joy in the life you can no longer lead
For Tony, the sweetest list is what is translated to
sublime states. There are four sublime states.
Speaker 2 (16:48):
So interesting.
Speaker 1 (16:52):
Yes. The first one is meta, which refers to kindness,
treating ourselves and others with open hearted warmth and friendliness.
Karuna which is compassion, reaching out to help alleviate suffering
in others as well as ourselves. Moudita which is empathetic
(17:19):
joy feeling joy when others are happy, which may be
difficult when you're not feeling well. And I don't know
how to say this last word, but it's up keppa,
I believe, which is equanimity, being at peace no matter
what our circumstances are.
Speaker 2 (17:43):
That that is easier said than done.
Speaker 1 (17:46):
All of it, Yes, yes, it is.
Speaker 2 (17:49):
It takes it takes a lot, It takes a lot.
Speaker 3 (17:52):
And at the end of the day, these are all
things that we want to strive for as a human being,
right right. But they take practice, they take courage, they
take grit. It takes a lot of introspection.
Speaker 1 (18:04):
Absolutely in order for you to live.
Speaker 3 (18:06):
Out your life all the time that way, especially if
you are in pain constantly.
Speaker 1 (18:12):
True, so true, absolutely, so In the traditional metapractice, one
settles on a set of phrases and recites them silently,
over and over. Here are the phrases Tony settled on.
May I be peaceful, May I have ease of well being.
(18:34):
May I reach the end of suffering and be free?
You know, she says, you can pick words that have
meaning to you. And what this reminded me of is
there's a loving kindness meditation that you can look up online,
and that is what I believe this practice is from.
(18:54):
But saying these things over, it's the act of listening
and contemplating the meaning of these phrases. As you repeat
them over time, it softens and sues the body, mind,
and heart.
Speaker 2 (19:12):
It's a beautiful prayer. Yes.
Speaker 1 (19:14):
Yeah. Tony was ashamed of being sick and blamed herself
for everything her mind could come up with. And she
noted that Jack Cornfield likes to say the mind has
no shame. You know, most of us have been conditioned
from childhood to be our own worst critic, unfortunately, and
(19:36):
taming that inner critic is truly an act of self compassion.
Speaker 3 (19:42):
And there's plenty of people out there they're going to
do that for you.
Speaker 2 (19:46):
Free of charge.
Speaker 1 (19:49):
Yes again, unfortunately.
Speaker 2 (19:50):
Plenty of people. So be kind to yourself.
Speaker 1 (19:53):
Absolutely, and so she says, try not treating that voice
as an authentic fi feature of yourself. Give that critic
a name like here comes ms nag again. You know,
I thought, Oh, how good? How great would that be? Oh?
We have to get her to leave. If you can
(20:16):
talk to yourself harshly in self judgmental ways, there's no
reason why you can't talk to yourself in soothing, gentle,
self compassionate ways instead. So let's try thinking positive. Yeah, absolutely,
(20:36):
I like that. Tony admits living well with chronic illness
is a work in progress. There are difficult days when
she cries out, I don't care. I don't I don't care.
I don't care if stress makes my symptoms worse. I
can't stand this oppressive illness one more day. But Buddhist
(21:00):
teachings and practices are waiting wings to see to see
you through. In the last chapter, she lists some of
the practices to help with specific challenges. Here are a few.
She suggested, take solace in the fact you are not alone,
(21:24):
Breathe in suffering of those who share the symptoms. Breathe
out whatever kindness, compassion, and peace. You have to give
remember to repeat those metaphrases, those kindness phrases, and letting
go even just a little. And she closes by saying,
(21:51):
in sickness or in health, Tony's heartfelt wish is that
you be peaceful, have ease of well being, and reach
the end of suffering and be free.
Speaker 2 (22:04):
Wow. Wow.
Speaker 3 (22:07):
So she basically freed herself through through understand first of all,
understanding what she was going through, what she really had,
and then surrendering, like you said, surrendering to the fact
that she has to learn how to live with this,
but coping with it in a way that is, you know,
(22:27):
forgiving right, correct self, loving right, right right.
Speaker 1 (22:32):
And she relied. She is a Buddhist, and so she
relied on the Buddhist practices and the teachings. I am
not a Buddhist, but I found that some of these
may be helpful to people out there. Whatever works I
(22:53):
think is good, and perhaps having a spiritual connection, whatever
that may be, can be helpful as people are going
through these invisible conditions. Absolutely, there's another book that I
read is by Elana Jacqueline. For most of her life
(23:15):
she dealt with doubtful teachers, co workers, family, and doctors
who challenged the idea that her condition was severe enough
to inhibit parts of her daily life. In her book,
Surviving and Thriving with an Invisible with Invisible Chronic Illness,
(23:38):
she explains that she has two invisible diseases, primary immune
deficiency disease and dysoutomia. I'm sorry, I'm not saying that right.
And these diseases make her a prime target for suspicion
(24:00):
that she looks fine on the outside. So do we
have a chat.
Speaker 2 (24:04):
Yeah, we have a comment.
Speaker 3 (24:07):
And it says this all sounds sweet and fluffy, but
when you cannot get away from pain, you don't want
to hear sweet and fluffy. You want something that will
numb the pain. Kindness does not numb the pain. That's
not numb the physical pain, just right.
Speaker 1 (24:27):
So that's you know, it's it's so true.
Speaker 2 (24:31):
It is very true. It is very true.
Speaker 3 (24:33):
But you know, the one thing that we have to
kind of remember is that, yes, that's very true, Numbness
does not, you know, it just doesn't numb the pain.
Kindness however, it suites it, It helps it, It gets
you in a different frame of mind. It allows you
to understand this too shall pass. I'm gonna be kind
(24:55):
to myself. I'm going to understand that this is a
phase that I'm going going through, right, And if it's
a chronic condition that I have to live with, I'd
rather live with that condition with a frame of mind
that's going to help me move forward, versus a frame
of mind that's going to keep me in agony. Right,
(25:17):
because there's one thing of having physical pain, but there's
also mental and emotional pain.
Speaker 1 (25:22):
Absolutely right. I have to say that continuing reading this,
it says, thank God for the morphine, and praise him
as you relax. God anointed people to become doctors. He
anointed people to create pain medication. He gives us wisdom
and common sense. He does not want us to suffer needlessly.
(25:46):
My husband is a doctor who was diagnosed with Parkinson's
disease at the age of forty six. He was in
denial for two years. He is now seventy two, and
he lives in pain every day and refuses to take narcotics.
He will do things to make himself comfortable. He continued
(26:08):
to work until last year. He had a small practice.
He wouldn't hurt anyone and his patients loved him. I
think what is important is to do what you can
to make yourself comfortable. I don't know how he does it.
I know my son and I care for him the
(26:30):
best we can, and he just keeps going and he
doesn't complain. He does try to watch comic movies, something
to make him laugh, to take his mind off himself.
I think being able to go to work helped him
(26:50):
take his mind off himself. Now that he's retired, we're
trying to find something for him to do to replace them. Yeah,
and it's hard, and it's hard.
Speaker 3 (27:03):
Yeah, yeah, it definitely is. We don't want to sound
like you know, it's it's easy. That's why I said earlier.
It's easier said than done, right. Right, However, when you
get into the practice of being able to see the
certain situation that you're going through, whatever that may be,
in a way that helps you move forward, that's going
(27:23):
to help you, that's going to you know, minimize that
that emotional stress that you may go through. Right, And
having a support system is so important as well, right right,
your husband he has a support system, you know, in
the family, so that's very important.
Speaker 1 (27:40):
Absolutely.
Speaker 2 (27:42):
Thank you for the comment.
Speaker 1 (27:44):
By the way, yes, thank you very.
Speaker 2 (27:45):
Much, thank you.
Speaker 1 (27:47):
I just because this book does give a lot of
suggestions as this woman is going through her diseases. She
had infections that lasted months, digestive issues, migraines, neuropith neuropathic pain, tachycardia,
chronic fatigue, and hypersomnia, to name a few over her roadblocks.
Speaker 2 (28:12):
She had this all at the same time.
Speaker 1 (28:15):
I don't know, it just said these are symptoms that
she had. It may have been a couple at a
time or one at a time. She remembered sitting through
a business meeting with stomach cramped so bad that she
soaked the back of her shirt with sweat. She had
already excused herself to go to the bathroom three times,
and her clients were getting frustrated. Can you imagine how
(28:39):
she felt? You know, it just I'm sure she wanted
to work, but it was, you know, a difficult It
was very difficult. It was hard for it was hard
for people in her life to grasp her struggles. So
she started a blog www. Let's Get Better dot com
(29:00):
and this was to help people in her life get
the full story. How sad that she had to do
this for her family to understand how she felt. Yet
she was disappointed her family was really not interested. However,
to her surprise, as she began posting, people began to
(29:21):
read them. She got outpouring from unexpected support from friends, neighbors,
old teachers, and strangers. She received emails from readers going
through the same issues. Perhaps that can help the person
that's online that left a chat, you know, sharing stories
(29:45):
of suffering, personal growth and the pain of relapse can help.
In fact, writing my book helped me with some of
the tragedies that I've been through in my life. This Jacqueline.
Miss Jacquelin wrote her book in the hope that it
(30:05):
will encourage you to look back on your worst moments
with humor and look forward to your next relapse with strength.
And she asks, are you ready to get on with
your life? The best person to fight for your life
is you you?
Speaker 2 (30:25):
Yeah.
Speaker 1 (30:26):
Chronic illness is something you can't beat or fight. You
have to outsmart it. In chapter one, it's about accepting
your life with chronic illness. And it's a first hard
step and Miss Jacqueline says it took her nineteen years.
Remember it's chronic, and it comes and it goes. So
(30:48):
maybe there will be good days mixed in. Yeah, they're
not so good days, which.
Speaker 2 (30:53):
Is good because it gives a balance.
Speaker 3 (30:55):
Right. If it was just consistent extreme pain, that would
be very difficult. But the on and off and on
and off when you have this condition, the on when
you're off of it, it gives you some time to breathe, Okay,
let me prepare for the next one, let me brace myself, right.
And I think it's also important, like you were mentioning,
(31:18):
writing the book helped you, right. For Victor, it was
his job that kind of helped him keep you keep going.
Everybody has a different way of soothing that pain, right,
So people have to find their.
Speaker 1 (31:31):
Way right and pain management can help a lot of people.
There are pain management doctors and that can probably help
a lot of people. So Elana Jacqueline began working for
Global Genes ge Enius and International Rare and Genetic Disease nonprofit.
(31:52):
This brought her closer to the heart of what rare
disease patients have to endure before they get answers and
very and there were many common themes. Friends and family
thought the disease wasn't real and the hospital visits were unnecessary.
Doctors regularly fobbed off concerns and requests for more tests
(32:14):
and medications. They're yearning, They're real yearning for community support
and communication on and offline, and patients wanted to connect
with other people who had gone through their similar journey.
So chronic illness is everywhere, and the first thing to
remember is you were not alone again. Self compassion rising
(32:41):
above those self defeating thoughts. You know when we when
you start to have that negative thought, try to reason
with yourself and focus on positive, positive thinking and remember
you who you really are. Stand up for yourself, know
your limits, know what that change is inevitable, and know
(33:06):
that life goes on and again You're never alone. One
thing that helped the author was to tell her story again,
telling your story in the In chapter four, she talks
about making new friendships and salvaging old ones. Check in,
(33:26):
speak up, make plans, make new friends with your current contacts,
be kind, reach out, get contact information of someone new,
don't fear spontaneity, and you can meet people online, at work,
at school. She does discuss dating and relationships and what
(33:51):
partner was right for you, which I didn't. I'm not
going to go into details, but.
Speaker 3 (33:59):
The bat has to be even more difficult when you're
dealing with the chronic condition pain to be able to
go into the dating pool.
Speaker 1 (34:10):
Wow, right, I mean briefly, she says, honesty, contribution, a
chance to react, and it's not a competition. A partner
may have a bad day too, right, we have to
give him a break.
Speaker 2 (34:25):
Right. We have a beautiful comment there.
Speaker 1 (34:28):
Joyce Meyer says, turn your mess into a message. Very
good love that. Wow, thank you so much, thank you. Yes.
Creating a support system is important through therapy, professional and
academic support, community support, nonprofits, spiritual support, and the author
(34:51):
gives examples of jobs you can do online. Many of
these require certain education, but marketing, promotional advertising, creative writing, editing, graphics,
appointment setting, virtual assistant are some of the things that
can be done. And her four basic rules for dealing
(35:13):
with disease is nobody knows, nobody needs to know your
business unless you tell them, and you don't have the luxury,
so deal with it, meaning that there's no slacking off
at a job or you and you have to work hard,
do something you're good at and that you like, and
(35:35):
accommodate yourself. Ask for things that make your life easier,
and plan for the worst case scenario. In Miss Jacqueline's
last chapter, Thriving in Chronic Illness, her subheadings include, live
in the moment, focus on your quality of life, not
your diagnosis. Advocate for yourself, stay one step ahead, don't
(36:02):
forget to plan for your happiness, continue to learn and
practice coping mechanisms, accept your disease, and become your most
empowered self. In closing, she says, I'm not saying you're
a superhero or anything, but like you're a superhero.
Speaker 2 (36:28):
I love it.
Speaker 1 (36:28):
Yeah, And I you know, I always say my husband
is the strongest person I know. And you know, he's
five foot six and like one hundred and thirty pounds,
but he has strength of you know, beyond.
Speaker 2 (36:44):
Yeah.
Speaker 1 (36:46):
Thank you for joining us today on the Hope Show.
And remember every story yours included has the power to heal, inspire,
and bring light into the world. In this story of
perseverance and resilience has touched your heart, please consider making
a donation by clicking on my website. Together we can
(37:11):
share these personal messages of hope and healing. For a
copy of my book, you can go onto my website
at www dot Karenmarcioni dot com. I'm Karenmarcioni. Be well,
stay hopeful, and until next week at three o'clock on
Sosradio dot Live
Hi, I'm Karen MARCIONI your host for the Hope Show,
which is inspired by my book Hope How other people
endure about everyday people overcoming life's challenges. Welcome today to
my co host Marlany Cruz. Hi, everybody, I'm so glad
(01:05):
that you're here. Thanks, welcome much, thank you. So this
week we are continuing the conversation of living fully with
an invisible illness. In the book How to Be Sick,
which is this one here by Tony Bernard. She offers
a compassionate, practical, and deeply personal guide for navigating life
(01:29):
with chronic illness. She draws on her Buddhist philosophy to
foster to foster emotional healing and inner peace. She was
diagnosed with a debilitating illness that left her mostly housebound.
Bernard transformed her suffering into an opportunity to cultivate, to
(01:51):
cultivate wisdom, mindfulness, and self compassion. She relays how she
put this book together and with great difficulty. She wrote
it lying in bed with the laptop on her stomach,
notes strewn around on her blanket, and her printer within
(02:14):
arms reach. Some days she would get so involved in
a particular chapter that she would work too long, and
then she paid the price. She wouldn't be able to
work for you know, maybe a week or depending, maybe
even a few weeks.
Speaker 2 (02:29):
Wow.
Speaker 1 (02:32):
So her inspiration came from a person that she only
knew for a short time. So Tony was at a
meditation retreat and each person had to do a work meditation,
meaning that they had to that they were responsible for
performing a task each day to help the retreat one smoothly.
(02:53):
So she shared this job with a woman named mary Anne,
who was about the same age as Tony, but she
did look a little frail, yet they shared the work equally.
She had a kind face and a gentle smile. On
the seventh day of the retreat, another woman accompanied Marianne.
(03:17):
The new woman followed Tony outside. As they began to
walk towards the teacher's dining room, the woman asked if
she knew Tony, if she knew Marianne very well, and
the woman shook her head no, and or Tony shook
her head no, and the woman proceeded to tell her
that she was very sick and she only has a
(03:38):
couple weeks to live. So, to Tony's distress, breaking her silence,
she asked one of the teachers if she knew about Marianne,
and the teacher said that on the information sheet that
they fill out to go to a retreat, under the
question that says, is there anything you want you're teach
(04:00):
to know about you, Marianne wrote that she only had
two weeks to live. Wow, but it won't affect her practice.
I'm thinking, how brave and it wouldn't affect her practice. Unbelievable.
Speaker 3 (04:19):
And just the fact that she wrote that, right, she
wanted it to be known, which means that she wants
people to understand these are these may be the last
interactions that I have with you, right, So it's another
way of saying, let's make this cow right have a
(04:39):
short amount of time, right, right.
Speaker 1 (04:41):
And that she wanted to spend her last few days
at this special meditation retreat. So the next day her
spot was empty, and in memory of Marianne, Tony vows
to do her best not to let her illness affect
(05:05):
her practice and to let her practice continue to teach
her how to be sick and enable her to help
others who are chronically ill and those that care for them.
I just thought, Wow, so magnanimous.
Speaker 3 (05:24):
Yeah, very impactful, and so she only had Therefore one day.
Speaker 2 (05:29):
The next day she wasn't there anymore.
Speaker 1 (05:32):
She might it wasn't clear, So it might have been
a few days before this person was with her and
then and then she found out more information. It might
have been like a week. Perhaps it doesn't. It doesn't
really say how long it was.
Speaker 3 (05:51):
That puts things into perspective. Especially she's not feeling well herself,
and now she's hearing this right right, It's like it
must have been like a big shock, like, wow, this
could be me right right.
Speaker 1 (06:04):
Possibly, I don't know if this was a retreat before
she got sick or after. Yeah, As Tony with an
Eye was about to begin her twentieth year as a
law professor, she and her husband, Tony with a hy
(06:24):
decided to celebrate and treat themselves to a special vacation.
I just wanted to say that to clarify, but most
of the time I'm talking about the author, Tony with
an Eye, right, But she mentioned it in the book,
so I thought I would mention it to everyone. So
Tony and Tony they decided to treat themselves to a
(06:45):
special vacation, and it was going to be a trip
to Paris, and it was a big deal for them.
She was looking forward to the three weeks that they
were going to immerse themselves in the city of Lights,
and it was it was really special because this is
not something that they often did. Their original flight was delayed,
(07:07):
and because they acted quickly, the agent was able to
find two other flights for them to begin this special vacation.
Once off the ground, they praised themselves. Ah pride, caution, caution,
the Buddha would have said. Several doctors told them that
(07:30):
the odds are high that she picked up the virus
from one of those flights. How sad. Yeah, So they
wandered around the first day waiting for the sunset to
adjust to the new time zone. She didn't feel very
well the next day, but she attributed it to jetlag,
(07:52):
and she continued to feel awful, but initially refused to
believe it was anything but jetlag. Soon she developed flu
like symptoms and couldn't get out of bed. Knowing they
had two weeks left, she felt it was no big deal.
Yet the days left dwindled and dwindled. She finally went
(08:15):
to a doctor who told her it was the flu,
and she was given antibiotics. The day before they left,
she was beginning and fly home. She was beginning to
feel fine and she felt she was on the road
to recovery. A week after returning home, she had a relapse.
(08:38):
It was early June and law school started at the
end of August, so she mentioned her concerns to the dean,
but was confident that she would be fine by then.
In mid July, feeling stronger, she made plans to attend
a ten day meditation retreat about two hours from her home.
(08:58):
So she went on another retreat, and during that time
it was when her Parisian flew turned from acute to chronic.
She started to document how she was feeling each day.
It wasn't meant to be a diary, but she was
just so curious at that she felt she had to
(09:21):
keep track of how she was feeling each day. Monday,
she woke up feeling sick. That night she felt like
she was in a stupor, and Tuesday definitely sick. She
didn't go back to work at the end of August
in two thousand and one. That fall, her life was
(09:42):
spent in bed or at doctor's offices.
Speaker 3 (09:46):
Wow, what a turnaround and a change of her environment
and her lifestyle, so drastically right, yes, and without knowing
what's really going on. So at this point I'm guessing
that she didn't know the specific condition.
Speaker 1 (10:01):
That she had yet, right, did she? No?
Speaker 2 (10:04):
No, she has no clue.
Speaker 1 (10:05):
No, she doesn't know what's wrong.
Speaker 3 (10:07):
So at this point she could be thinking, this could
be a flu that's lasting longer than usual.
Speaker 1 (10:15):
Correct, Right, So she does start to go to different doctors.
She entered a phase of illness that she needed to
rule out every cause that could show possibly show up
in blood tests, cat scans, MRIs, or any other procedure.
So that fall she saw three infectious disease doctors, two
(10:41):
e NT specialists, a rheumatologist, an endocrinologist, a gastro entrologist,
a neurologist, a cardiologist, and two acupuncturists.
Speaker 2 (10:54):
Uh psychologists. By any chance after that, I would have needed.
Speaker 1 (10:58):
One, I know, oh my lot, a lot, and all
running their own battery of tests, and all of which
indicated nothing was wrong. But seeing all those doctors, I
mean that also takes a lot of time, absolutely, and
then the tests take all that time and they couldn't
(11:20):
find anything. So she dragged herself to law school twice
a week to teach the classes in the spring of
two thousand and two.
Speaker 3 (11:29):
Wow.
Speaker 1 (11:31):
Looking back, she realizes that that was a mistake to
continue working while she was sick, even though she didn't
know what it was it was, It most likely worsened
her condition. Yet there's the financial need to keep working.
And secondly, there's the utter disbelief that this is happening
(11:53):
to you. It's so hard to truly recognize your chronically
ill and accept that the illness is going to require
you to change your plans for life in ways you
never imagined.
Speaker 3 (12:10):
Yeah, and it has to be devastating to not know
what's going on.
Speaker 2 (12:16):
Once you know, once you.
Speaker 3 (12:18):
Have the ability to exactly pinpoint what it is, then
you can move forward to living with it and doing
what you need to do to be able to continue healthy.
But just the fact that she went to doctor, a doctor,
a doctor, another doctor and they didn't find anything that
has to be extremely draining.
Speaker 1 (12:38):
Oh, it's got to be really disappointing and frustrating. Yes, right,
all those adjectives. It's just so. Since getting sick in Paris,
she did have some diagnoses. She had a laundry list
of diagnoses, there were eight diseases and condition. I could
(13:01):
list them, but there were eight diseases that no one
really wants to have. So as a Buddhist, Tony discusses
the four noble truths. The first noble truth is Buddha
describing experiences we all have in our lifetimes in birth, aging, illness, death, sorrow, pain, grief,
(13:29):
and not getting what we want. We really all experience
those things, and for Tony this helps her gracefully accept
being chronically ill. The second noble truth is want, don't
want mind, and Buddha refers to this as the unquenchable thirst,
(13:53):
meaning we're unable to accept that our lives will be
a mixture of joys and sorrow rose, pleasantness and unpleasantness,
success and disappointments. And it's true we all do have
both of those things.
Speaker 2 (14:12):
Yeah.
Speaker 1 (14:13):
The third noble truth is the end of dacca, which
is enlightenment, and we can reach the end of suffering,
which is what that means in the mind, even when
the body is suffering.
Speaker 2 (14:30):
Ooh, that is deep.
Speaker 3 (14:32):
Yes, that is deep, because that means that means several things.
It sounds simple, but it means several things. It means
that you have to learn how to live with pain
correct right, yes, and make it enjoyable, make the journey
enjoyable enough that the pain doesn't overtake right right. And
(14:54):
that takes courage, that takes discipline, that takes resiliency. That
I mean, so many factors that come into play, right.
Speaker 1 (15:03):
And one of the things I don't say, but it's
not giving up, it's giving in. It's kind of surrendering
to the pain. Is what she talks about in the book. Also,
there's so much more in this book. My mind was
swirling as I was reading the book, and I try
(15:25):
to create enough to make people either want to read
the book or understand just enough enough enough. The fourth
Noble Truth Buddhist sets out a lesson plan to accomplish
the Eightfold Path. And I'll just highlight what that means.
(15:47):
Wise understanding, which refers to seeing the truth of the
human condition, so we know what to expect in life.
Wise in tension, which manifests as kindness, compassion, empathetic joy
(16:08):
and calm, abiding wise speech wise, action wise mindfulness keeping
ourselves in the present moment. And wise effort effort that
helps alleviate suffering in ourselves and others. In the chapter
(16:31):
finding Joy in the life you can no longer lead
For Tony, the sweetest list is what is translated to
sublime states. There are four sublime states.
Speaker 2 (16:48):
So interesting.
Speaker 1 (16:52):
Yes. The first one is meta, which refers to kindness,
treating ourselves and others with open hearted warmth and friendliness.
Karuna which is compassion, reaching out to help alleviate suffering
in others as well as ourselves. Moudita which is empathetic
(17:19):
joy feeling joy when others are happy, which may be
difficult when you're not feeling well. And I don't know
how to say this last word, but it's up keppa,
I believe, which is equanimity, being at peace no matter
what our circumstances are.
Speaker 2 (17:43):
That that is easier said than done.
Speaker 1 (17:46):
All of it, Yes, yes, it is.
Speaker 2 (17:49):
It takes it takes a lot, It takes a lot.
Speaker 3 (17:52):
And at the end of the day, these are all
things that we want to strive for as a human being,
right right. But they take practice, they take courage, they
take grit. It takes a lot of introspection.
Speaker 1 (18:04):
Absolutely in order for you to live.
Speaker 3 (18:06):
Out your life all the time that way, especially if
you are in pain constantly.
Speaker 1 (18:12):
True, so true, absolutely, so In the traditional metapractice, one
settles on a set of phrases and recites them silently,
over and over. Here are the phrases Tony settled on.
May I be peaceful, May I have ease of well being.
(18:34):
May I reach the end of suffering and be free?
You know, she says, you can pick words that have
meaning to you. And what this reminded me of is
there's a loving kindness meditation that you can look up online,
and that is what I believe this practice is from.
(18:54):
But saying these things over, it's the act of listening
and contemplating the meaning of these phrases. As you repeat
them over time, it softens and sues the body, mind,
and heart.
Speaker 2 (19:12):
It's a beautiful prayer. Yes.
Speaker 1 (19:14):
Yeah. Tony was ashamed of being sick and blamed herself
for everything her mind could come up with. And she
noted that Jack Cornfield likes to say the mind has
no shame. You know, most of us have been conditioned
from childhood to be our own worst critic, unfortunately, and
(19:36):
taming that inner critic is truly an act of self compassion.
Speaker 3 (19:42):
And there's plenty of people out there they're going to
do that for you.
Speaker 2 (19:46):
Free of charge.
Speaker 1 (19:49):
Yes again, unfortunately.
Speaker 2 (19:50):
Plenty of people. So be kind to yourself.
Speaker 1 (19:53):
Absolutely, and so she says, try not treating that voice
as an authentic fi feature of yourself. Give that critic
a name like here comes ms nag again. You know,
I thought, Oh, how good? How great would that be? Oh?
We have to get her to leave. If you can
(20:16):
talk to yourself harshly in self judgmental ways, there's no
reason why you can't talk to yourself in soothing, gentle,
self compassionate ways instead. So let's try thinking positive. Yeah, absolutely,
(20:36):
I like that. Tony admits living well with chronic illness
is a work in progress. There are difficult days when
she cries out, I don't care. I don't I don't care.
I don't care if stress makes my symptoms worse. I
can't stand this oppressive illness one more day. But Buddhist
(21:00):
teachings and practices are waiting wings to see to see
you through. In the last chapter, she lists some of
the practices to help with specific challenges. Here are a few.
She suggested, take solace in the fact you are not alone,
(21:24):
Breathe in suffering of those who share the symptoms. Breathe
out whatever kindness, compassion, and peace. You have to give
remember to repeat those metaphrases, those kindness phrases, and letting
go even just a little. And she closes by saying,
(21:51):
in sickness or in health, Tony's heartfelt wish is that
you be peaceful, have ease of well being, and reach
the end of suffering and be free.
Speaker 2 (22:04):
Wow. Wow.
Speaker 3 (22:07):
So she basically freed herself through through understand first of all,
understanding what she was going through, what she really had,
and then surrendering, like you said, surrendering to the fact
that she has to learn how to live with this,
but coping with it in a way that is, you know,
(22:27):
forgiving right, correct self, loving right, right right.
Speaker 1 (22:32):
And she relied. She is a Buddhist, and so she
relied on the Buddhist practices and the teachings. I am
not a Buddhist, but I found that some of these
may be helpful to people out there. Whatever works I
(22:53):
think is good, and perhaps having a spiritual connection, whatever
that may be, can be helpful as people are going
through these invisible conditions. Absolutely, there's another book that I
read is by Elana Jacqueline. For most of her life
(23:15):
she dealt with doubtful teachers, co workers, family, and doctors
who challenged the idea that her condition was severe enough
to inhibit parts of her daily life. In her book,
Surviving and Thriving with an Invisible with Invisible Chronic Illness,
(23:38):
she explains that she has two invisible diseases, primary immune
deficiency disease and dysoutomia. I'm sorry, I'm not saying that right.
And these diseases make her a prime target for suspicion
(24:00):
that she looks fine on the outside. So do we
have a chat.
Speaker 2 (24:04):
Yeah, we have a comment.
Speaker 3 (24:07):
And it says this all sounds sweet and fluffy, but
when you cannot get away from pain, you don't want
to hear sweet and fluffy. You want something that will
numb the pain. Kindness does not numb the pain. That's
not numb the physical pain, just right.
Speaker 1 (24:27):
So that's you know, it's it's so true.
Speaker 2 (24:31):
It is very true. It is very true.
Speaker 3 (24:33):
But you know, the one thing that we have to
kind of remember is that, yes, that's very true, Numbness
does not, you know, it just doesn't numb the pain.
Kindness however, it suites it, It helps it, It gets
you in a different frame of mind. It allows you
to understand this too shall pass. I'm gonna be kind
(24:55):
to myself. I'm going to understand that this is a
phase that I'm going going through, right, And if it's
a chronic condition that I have to live with, I'd
rather live with that condition with a frame of mind
that's going to help me move forward, versus a frame
of mind that's going to keep me in agony. Right,
(25:17):
because there's one thing of having physical pain, but there's
also mental and emotional pain.
Speaker 1 (25:22):
Absolutely right. I have to say that continuing reading this,
it says, thank God for the morphine, and praise him
as you relax. God anointed people to become doctors. He
anointed people to create pain medication. He gives us wisdom
and common sense. He does not want us to suffer needlessly.
(25:46):
My husband is a doctor who was diagnosed with Parkinson's
disease at the age of forty six. He was in
denial for two years. He is now seventy two, and
he lives in pain every day and refuses to take narcotics.
He will do things to make himself comfortable. He continued
(26:08):
to work until last year. He had a small practice.
He wouldn't hurt anyone and his patients loved him. I
think what is important is to do what you can
to make yourself comfortable. I don't know how he does it.
I know my son and I care for him the
(26:30):
best we can, and he just keeps going and he
doesn't complain. He does try to watch comic movies, something
to make him laugh, to take his mind off himself.
I think being able to go to work helped him
(26:50):
take his mind off himself. Now that he's retired, we're
trying to find something for him to do to replace them. Yeah,
and it's hard, and it's hard.
Speaker 3 (27:03):
Yeah, yeah, it definitely is. We don't want to sound
like you know, it's it's easy. That's why I said earlier.
It's easier said than done, right. Right, However, when you
get into the practice of being able to see the
certain situation that you're going through, whatever that may be,
in a way that helps you move forward, that's going
(27:23):
to help you, that's going to you know, minimize that
that emotional stress that you may go through. Right, And
having a support system is so important as well, right right,
your husband he has a support system, you know, in
the family, so that's very important.
Speaker 1 (27:40):
Absolutely.
Speaker 2 (27:42):
Thank you for the comment.
Speaker 1 (27:44):
By the way, yes, thank you very.
Speaker 2 (27:45):
Much, thank you.
Speaker 1 (27:47):
I just because this book does give a lot of
suggestions as this woman is going through her diseases. She
had infections that lasted months, digestive issues, migraines, neuropith neuropathic pain, tachycardia,
chronic fatigue, and hypersomnia, to name a few over her roadblocks.
Speaker 2 (28:12):
She had this all at the same time.
Speaker 1 (28:15):
I don't know, it just said these are symptoms that
she had. It may have been a couple at a
time or one at a time. She remembered sitting through
a business meeting with stomach cramped so bad that she
soaked the back of her shirt with sweat. She had
already excused herself to go to the bathroom three times,
and her clients were getting frustrated. Can you imagine how
(28:39):
she felt? You know, it just I'm sure she wanted
to work, but it was, you know, a difficult It
was very difficult. It was hard for it was hard
for people in her life to grasp her struggles. So
she started a blog www. Let's Get Better dot com
(29:00):
and this was to help people in her life get
the full story. How sad that she had to do
this for her family to understand how she felt. Yet
she was disappointed her family was really not interested. However,
to her surprise, as she began posting, people began to
(29:21):
read them. She got outpouring from unexpected support from friends, neighbors,
old teachers, and strangers. She received emails from readers going
through the same issues. Perhaps that can help the person
that's online that left a chat, you know, sharing stories
(29:45):
of suffering, personal growth and the pain of relapse can help.
In fact, writing my book helped me with some of
the tragedies that I've been through in my life. This Jacqueline.
Miss Jacquelin wrote her book in the hope that it
(30:05):
will encourage you to look back on your worst moments
with humor and look forward to your next relapse with strength.
And she asks, are you ready to get on with
your life? The best person to fight for your life
is you you?
Speaker 2 (30:25):
Yeah.
Speaker 1 (30:26):
Chronic illness is something you can't beat or fight. You
have to outsmart it. In chapter one, it's about accepting
your life with chronic illness. And it's a first hard
step and Miss Jacqueline says it took her nineteen years.
Remember it's chronic, and it comes and it goes. So
(30:48):
maybe there will be good days mixed in. Yeah, they're
not so good days, which.
Speaker 2 (30:53):
Is good because it gives a balance.
Speaker 3 (30:55):
Right. If it was just consistent extreme pain, that would
be very difficult. But the on and off and on
and off when you have this condition, the on when
you're off of it, it gives you some time to breathe, Okay,
let me prepare for the next one, let me brace myself, right.
And I think it's also important, like you were mentioning,
(31:18):
writing the book helped you, right. For Victor, it was
his job that kind of helped him keep you keep going.
Everybody has a different way of soothing that pain, right,
So people have to find their.
Speaker 1 (31:31):
Way right and pain management can help a lot of people.
There are pain management doctors and that can probably help
a lot of people. So Elana Jacqueline began working for
Global Genes ge Enius and International Rare and Genetic Disease nonprofit.
(31:52):
This brought her closer to the heart of what rare
disease patients have to endure before they get answers and
very and there were many common themes. Friends and family
thought the disease wasn't real and the hospital visits were unnecessary.
Doctors regularly fobbed off concerns and requests for more tests
(32:14):
and medications. They're yearning, They're real yearning for community support
and communication on and offline, and patients wanted to connect
with other people who had gone through their similar journey.
So chronic illness is everywhere, and the first thing to
remember is you were not alone again. Self compassion rising
(32:41):
above those self defeating thoughts. You know when we when
you start to have that negative thought, try to reason
with yourself and focus on positive, positive thinking and remember
you who you really are. Stand up for yourself, know
your limits, know what that change is inevitable, and know
(33:06):
that life goes on and again You're never alone. One
thing that helped the author was to tell her story again,
telling your story in the In chapter four, she talks
about making new friendships and salvaging old ones. Check in,
(33:26):
speak up, make plans, make new friends with your current contacts,
be kind, reach out, get contact information of someone new,
don't fear spontaneity, and you can meet people online, at work,
at school. She does discuss dating and relationships and what
(33:51):
partner was right for you, which I didn't. I'm not
going to go into details, but.
Speaker 3 (33:59):
The bat has to be even more difficult when you're
dealing with the chronic condition pain to be able to
go into the dating pool.
Speaker 1 (34:10):
Wow, right, I mean briefly, she says, honesty, contribution, a
chance to react, and it's not a competition. A partner
may have a bad day too, right, we have to
give him a break.
Speaker 2 (34:25):
Right. We have a beautiful comment there.
Speaker 1 (34:28):
Joyce Meyer says, turn your mess into a message. Very
good love that. Wow, thank you so much, thank you. Yes.
Creating a support system is important through therapy, professional and
academic support, community support, nonprofits, spiritual support, and the author
(34:51):
gives examples of jobs you can do online. Many of
these require certain education, but marketing, promotional advertising, creative writing, editing, graphics,
appointment setting, virtual assistant are some of the things that
can be done. And her four basic rules for dealing
(35:13):
with disease is nobody knows, nobody needs to know your
business unless you tell them, and you don't have the luxury,
so deal with it, meaning that there's no slacking off
at a job or you and you have to work hard,
do something you're good at and that you like, and
(35:35):
accommodate yourself. Ask for things that make your life easier,
and plan for the worst case scenario. In Miss Jacqueline's
last chapter, Thriving in Chronic Illness, her subheadings include, live
in the moment, focus on your quality of life, not
your diagnosis. Advocate for yourself, stay one step ahead, don't
(36:02):
forget to plan for your happiness, continue to learn and
practice coping mechanisms, accept your disease, and become your most
empowered self. In closing, she says, I'm not saying you're
a superhero or anything, but like you're a superhero.
Speaker 2 (36:28):
I love it.
Speaker 1 (36:28):
Yeah, And I you know, I always say my husband
is the strongest person I know. And you know, he's
five foot six and like one hundred and thirty pounds,
but he has strength of you know, beyond.
Speaker 2 (36:44):
Yeah.
Speaker 1 (36:46):
Thank you for joining us today on the Hope Show.
And remember every story yours included has the power to heal, inspire,
and bring light into the world. In this story of
perseverance and resilience has touched your heart, please consider making
a donation by clicking on my website. Together we can
(37:11):
share these personal messages of hope and healing. For a
copy of my book, you can go onto my website
at www dot Karenmarcioni dot com. I'm Karenmarcioni. Be well,
stay hopeful, and until next week at three o'clock on
Sosradio dot Live
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