[MUSIC]
Okay, so hi everyone and welcome to the TTRF's fifth Dealing with Desmoids
webinar hosted by Ashley Williams. This webinar series aims to bring coping strategies to the
Desmoy tumor patient community. Thank you for joining us this evening. So I'd like to introduce
you all to our presenter who I believe you're probably very familiar with at this point.
Ashley Williams is a licensed clinical social worker and trauma counselor from South Florida.
In 2015, she was diagnosed with a Desmoid tumor in her left leg. And since then, she has become
passionate about helping patients heal from the trauma of their diagnosis and treatment.
Her focus is on those with Desmoid tumors, cancer, chronic illness, and other rare diseases.
Having undergone multiple rounds of treatment herself, Ashley believes in a holistic mind and
body approach to healing. She continues to help individuals from these communities work through
their trauma in her counseling practice. So once again, welcome, Ashley. Thanks so much for joining
us. And before we get started, I just have a few instructions for our attendees this evening.
So we welcome questions in the Q&A. You'll see the Q&A icon at the bottom of your screen.
So if you have a question for Ashley, please feel free to share it there and she will try to get to
it at the end of her presentation. Also you'll see that you can use the chat function. It is open
for the use of the community. So please feel free to post there if you have any comments,
experiences that you wanna share with the community,
feel free to share them there.
That will be unmonitored by us, okay?
So now I will hand things over to Ashley.
- Thank you so much, Lynn.
I'm very excited to be back to talk about a topic
that is extremely important to the Des Moines experience
of making meaning and how do we make meaning
of this thing that we have been through
that many of us have dealt with for years,
that is really, really challenging.
I will apologize in advance
because I am recovering from being sick.
And so if I have a little bit of foggy brain
or I lose my place, just please bear with me.
And my dog who always knows when I'm not feeling well
and will never leave my side is standing right next to me.
So he might make a cameo appearance
in what we're talking about today.
So if you see him, just give Beau a little wave.
But today we're gonna be talking about making meaning,
which is a, it's a really difficult topic.
It is one that sometimes, you know, it sounds nice,
but sometimes it doesn't necessarily feel good,
especially when we have been going through
so many challenges potentially associated
with our diagnosis, especially when I was first diagnosed,
I remember people trying to make meaning
of the experience for me and telling me things like,
well, think of all of the things that you'll learn
or think of all of the people that you'll help.
And especially at the beginning,
hearing some of these comments, they made me cringe.
Like, that's all well and good, that's great,
but I would really rather not have to deal with this diagnosis.
I would really rather not have to go through these challenges.
And so when we talk about making meaning,
we are not negating the fact
that what we're going through is really hard.
We're not approaching this topic
from a toxic positivity standpoint
that is saying you should only be grateful
and you should only be thankful for the experience,
but we are gonna be talking about it from that place
of knowing that we have a challenging diagnosis
and something that potentially causes a lot of struggle.
How can we make meaning of what we've been through
and what we're experiencing?
Let's see.
So Steven Joseph in his book,
he has a book called "What Doesn't Kill Us"
And it's about the concept of post-traumatic growth,
which we've talked about a little bit in previous sessions
on trauma resilience and post-traumatic growth.
When it comes to making meaning of an experience
like being diagnosed with a Desmoid
and all of the treatment that comes along with it,
he says seeking meaning following adversity
might be a universal human characteristic.
We all need to make meaning
of the experience that we've had.
But the meaning a person finds must be unique to that person and his and her situation.
It is up to trauma survivors themselves to move toward new understandings.
After all, it is their experience.
And so today in our topic of making meaning, I'm really going to be presenting you with
what does the research say about where meaning comes from in our lives and what we can do
to find that meaning for ourselves.
But I am not going to be making meaning of this experience for you.
Because even though all of us as Desmoid patients or as caregivers may be experiencing something
similar, the meaning that comes out of it will be different and unique for all of us.
And so this is not an approach of telling you what you should think or what you should
feel or how you should be grateful or anything like that.
rather, what are some practical and maybe some tangible steps that we can take in order to make
sense of what we've been through and in order to guide us into finding meaning in an experience
that let's be honest feels a little meaningless sometimes. Sometimes I've asked myself, what is
the point of this diagnosis? Why do I have to deal with this? Why did my life turn out this way?
And I feel that's something that many of us probably have asked ourselves or have dealt with.
And so we're coming at it from a stance of something that is uniquely yours,
uniquely you, and the unique meaning of your particular diagnosis and journey.
I've shared this before in a previous one of our sessions just talking about what is growth and
and what is growth after experiencing trauma.
And I'd like to revisit this shattered vase theory
because I think it is so pertinent
to what it means to make meaning of our experience.
Now, the shattered vase theory is this.
Say that I have a vase that's sitting on my mantelpiece
or on my table and I am clumsy,
so I knock into that table and the vase tumbles over
and it shatters on the ground.
When that face shatters, we have three different options
really in front of us for how we're going to handle
the trauma that has happened to this face.
The first way that we might handle it is
we realize this base is broken, it is beyond repair,
there is no use for it anymore, there is no purpose,
this is damaged and so I'm gonna get rid of it.
There is no value in it anymore, it's lost its beauty
and so I am going to sweep up the pieces of that base
and I'm going to throw them away.
The second thing that we might do,
especially if the pieces of the vase
maybe are a little bit bigger and it's not as shattered,
we try to pick all of the pieces up
and piece them back together.
And we might use glue or tape or some other method
to try to bring the vase back to its original form
and present it as though it has never been through
something hard.
It's never been through that challenge.
Now, if we do this, we may be able to create a shape that looks similar to how the vase
was before it fell off of the table, but the reality is that vase becomes more fragile
and it becomes more susceptible to damage because the reality is with the trauma that
it experienced, its form is different.
Now, these tend to be the two ways that we approach diagnosis.
I know at least for me and many of the Des Moines clients that I have and that I work
with on a regular basis, the approaches tend to fall along these two lines.
I'll talk about my personal experience first because whenever I was first diagnosed with
the Des Moines, my initial reaction was, "This isn't going to break me.
This isn't going to change me my life can go back to being normal, I'm just going to
go through this treatment and then I'm going to do whatever I can to put the pieces back
together so that my life looks the same as it did before.
Now in my attempt to do that I realized this isn't working because my life is forever changed
by this experience.
And so I cannot go back to who I was before.
And you know what, I'm frustrated by that.
And so what I'm going to do now is I realize these pieces are broken, they're damaged,
and so I'm just going to sweep them up and I'm going to throw them away because what
place do I have anymore as someone whose life looks like they're going to have to be dealing
long term with this diagnosis.
Now the third thing that we could do with this vase is we could look at all of the pieces
that are on the floor and we could realize that those pieces, even though the vase is
broken even though that vase has been through a trauma. Those pieces still have inherent value,
inherent beauty, and worth, and we can pick those pieces up and we can create something new
and something potentially even more beautiful. We might be able to take those pieces and fashion
them into like a mosaic, or my favorite word picture is taking those pieces and fashioning
them into like a disco ball. Something that takes those broken pieces and puts them together and
reflects the beauty that is still inherently a part of those pieces. And so today in a little
bit of what we're talking about, about making meaning of our experience, we're really going to
be looking at how do I find the beauty and the value in the fact that I've been through something
really, really hard that I've been dealt a hand that I didn't ask for. And that is long term,
in many cases, for most of us. And so how can I make meaning out of these pieces that feel broken,
and how can I put them together in a way that reflects and shows their beauty?
So we're going to spend a little bit of time here, because what we learn about making meaning
of our adversity and of our challenges is that there are four pillars, essentially,
of meaning.
There are four different areas that the research shows us brings meaning into our lives.
And so I want to part here and talk about these four things for a good portion of our
time today.
The research tells us that a sense of belonging,
having purpose in our lives,
storytelling, making sense of our experience,
and what they call transcendence,
which is essentially my connection to something
that is bigger than myself.
These are four pillars of making meaning
out of our experiences, out of our lives.
And we have a choice to invest in one or more
these pillars to help bring meaning to what we're specifically talking about today is to
our experience with a Desmoid. Now these can be applied to meaning in life in general,
but for us we're going to be honing in on making meaning of a diagnosis that feels like
there is no meaning to it. The first thing that we learn is belonging. Now belonging is a very
kind of vague word, and it holds a lot of depth to it. And so when we talk about belonging,
I want to make sure that we understand the difference between what it is to belong and
what it is to fit in. Because there are, there's a very big difference between these two concepts.
And I'm always amazed at the fact that I can even walk into a class of kids and I can ask
them the difference between belonging and fitting in.
And it's just like we inherently know the difference
between those things.
But belonging is essentially where can I show up
and be myself?
And fitting in is where do I need to change
in order to be accepted by other people?
We're not talking about fitting in.
So we're not talking about the idea of just passive
acceptance and hoping that other people accept us
for who we are.
With belonging, we're talking about creating
meaningful connections with individuals.
And those connections with some might be deeper
where we can go to individuals and talk about
the things that we're experiencing very vulnerably.
But in regards to making meaning of the things
that we've been through, belonging really talks about
connecting with people in a meaningful way,
even if it is short, infrequent, but pleasant interactions.
Now, the first thing here says reaching out to other people and I feel like this is such
an important thing to mention because belonging sometimes feels like a passive process.
Like I hope that other people accept me and therefore I will belong to something.
But belonging is actually a very active step for us to take.
It's a very active process.
And especially for those of us with a diagnosis, I feel like I have heard this from many Des Moines
patients, it may resonate with you.
But our diagnosis has a tendency to be, and to feel very high maintenance sometimes.
Lots of appointments, lots of treatments, lots of things to consider.
And so especially when I was first diagnosed, I remember thinking like, I don't want to
burden people at all with what I'm going through.
I don't wanna burden people with my experience.
I don't wanna ask for help.
I don't wanna ask for accommodation.
And ultimately by doing that,
I made my experience far more challenging
because I isolated myself
from being able to receive help from others.
And so when we talk about action
in an active process of belonging somewhere,
it is not only about reaching out to other people
in order to give, but it is also about reaching out
to other people in order to receive.
In different times in our life,
we'll call for different things that we might need.
And so many of us might have the tendency
to wanna give, give, give to other people
because we feel like our diagnosis
can be inconvenient sometimes,
but belonging really is about also initiating
reaching out to people for help, reaching out to people to receive from them as well.
Now the next thing says frequent pleasant interactions and I will give an example of
this. I apologize in advance if I cry about this because when I was originally diagnosed, I was 27.
I had no contact with the healthcare system prior to this and immediately found out that
that I had a Desmoid tumor and was sent to chemo,
weekly chemo.
And I remember being terrified and asking questions
like why me and why is this happening to me?
Having to put in time off of work
and feeling like an inconvenience
and feeling like a burden.
And every week before I received my chemo infusion,
I had to go to an office in order to get my blood drawn
to see if I could have chemo that week.
And every single week I had the same nurse,
her name was Esmeralda.
And Esmeralda, her and I probably had
a three minute interaction every single week.
Nothing substantial, just very, very small.
But I will never forget Esmeralda
because of her kindness towards me,
because of her gentleness towards me,
because of her honest concern
about what was going on in my life,
but also because she used to share things with me
about her family and what she was doing during the weekend
and who she was going to see
and what their relationships were like.
And so there was an element of frequent,
pleasant interactions that also showed this third piece
of mutual care, of being able to share vulnerability
with each other, being able to give and both receive.
And even though that first round of chemo,
I would say it was probably the most difficult experience of my life because it was the first
of its kind.
I can look back and I can smile solely because of Esmerelda.
My nurse is the one shining spot that I can look back on that gives me peace, that changed
my experience of something that was really, really hard because I felt like I had something
to look forward to, a meaningful connection with someone, someone that I could interact
with on a regular basis, who understood to a degree of what I was going through and who
cared about what I was going through.
Now this idea of mutual care is really significant, especially for those of us who might be more
of givers than receivers.
And so I don't know if you've ever been in a position where you've had the opportunity
to give back to somebody who you have received from in the past. But the opportunity to give
back to some of my friends and some of my family who really stepped up to help me during the most
difficult times of my life gives me such fulfillment. It gives me such a sense of purpose. It gives me
such a sense of meaning, of being able to reciprocate that generosity, to reciprocate that
care with the people who really showed up for me.
And many of us have stories just like this,
and that the belonging piece and the meaningful connection
piece may be with those deep connections with family members
and friends.
But it may also be with our nurses,
or it may also be with coworkers,
or it may also be with that person
that we see at the coffee shop every single morning
that we have that small interaction with that
help bring meaning and value into our relationships and into our lives.
The second pillar of meaning is finding purpose. Now this is like a really big one and I know
whenever we talk about finding purpose the tendency is for us to think like well my purpose has to be
something very very big like solving world hunger or something like that and that's true. Purpose
can be something that's very big, but it can also be something that is very specific to our sphere
and to our connections. For example, here it says, "Purpose requires stable and far-reaching goals."
Now, goals are really important, but these are not the goals of like, "I want to exercise every day,"
or "I want to eat healthy today," or "I want to get to work on time." These are long-term,
far-reaching goals that organize the decisions that we make, that organize the direction that
we take, that's kind of a forward-pointing arrow that directs our decisions. Now for me, I find
purpose and the second item a contribution to the world through my education. Now being a
a Desmoid patient myself and really dedicating a lot of my career to mental health and what
it is to heal from experiencing trauma. I am very, very grateful for the opportunity
to feel purpose and to bring meaning to my Desmoid experience by being able to share
the things that I've learned and the things that I've experienced about how to heal from
trauma because that's exactly what we've been through.
But I'll say I find equal, if not more meaning,
from interacting on a regular basis with my eight-year-old
niece and being a part of her life
and being a part of her growth and development
and being in those everyday moments with her,
seeing her play soccer, seeing her learn how to rollerblade,
and just finding that purpose and being
someone who is a stable, reliable presence in her life.
I know many, many Desmoid patients who have done this
piece of really trying to find purpose and fulfilling a purpose
in order to give back in some way, not just to the world, but
specifically to the Desmoid community. I know many of you who
have held fundraisers or many of you who have connected via
social media with individuals who are maybe recently diagnosed.
Many people who have opened up platforms and opened themselves
up to answer questions for individuals who are recently
diagnosed. I know many Desmoid patients who have also given
back on a larger sphere. Many of you might know my friend Dana,
who is a Desmoid patient who had a Desmoid in her leg, has a
the dentist point of her leg, who started a nonprofit
organization to help individuals heal from trauma
by hosting trauma informed retreats.
Anything big and small that we can do to bring purpose
and meaning to not only our lives,
but to our experience with our diagnosis,
whether it's desmoid related
or whether it's not desmoid related is significant.
Now, this third piece of knowing yourself
that also feels like a little vague
and a little existential, I know.
But especially with receiving something
like a Desmoid diagnosis,
the reality is our relationship to our body tends to change.
I know that there can be significant feelings
of my body's betrayed me,
or I don't know this body anymore.
I don't know how to work and move this body anymore.
And so knowing ourselves is not even necessarily
just from an intellectual and an emotional side,
but also from a physical side.
The word introception here we've talked about before,
but introception in my opinion
is one of the most significant pieces
of recovering from trauma,
but also one a step in the direction
of making meaning of our experience.
And what introception is,
is essentially becoming attuned to the cues
that our body's giving us.
Those body cues might be something as simple
as knowing when I'm hungry and knowing when I'm thirsty,
but we're really talking about it from a level as well
of what am I feeling?
What am I experiencing emotionally?
Now, when we've been through a trauma,
one of the most difficult things is for us to be able
to identify our emotions.
We've talked about how the nervous system kicks on
and there's that disconnection between our brain
and our body and when that happens,
it facilitates this thing called alexithymia,
which is essentially, I don't know what I'm feeling.
Like you can ask me how I feel about something,
but I could not tell you what emotion
this is that I'm feeling.
And even as a therapist who works on a daily basis
with people and talking about their emotions,
sometimes it's challenging for me
to be able to identify my own emotions
and what I'm feeling,
because I've experienced trauma as well.
One of my biggest encouragements,
I think I've talked about this book before,
but there's a book called "Atlas of the Heart"
by Brene Brown.
It is essentially an encyclopedia of emotions,
but it puts them very simply,
and each emotion probably is described in like a page or two.
And so it's not a huge commitment to be able to read
about the different emotions,
but taking an opportunity to learn
What are the different emotions that are out there?
What might I have been feeling before?
Is this something that I'm feeling now
in trying to learn what our body is telling us
and what we're feeling from an emotional standpoint?
If we know ourselves, if we know what we're feeling,
if we know what we're thinking,
if we know what our body's trying to communicate to us,
that is such a powerful informer
of where we have the ability to find purpose in our lives.
Many of us are gonna find purpose
in very, very different ways.
I've shared some examples.
I didn't ask if I can share this example,
so I'm gonna keep her anonymous.
But I know a girl who has a Desmoid tumor
who shares that one of the most distressing parts
of the experience was losing her hair.
And so losing her hair due to one of the treatments
and has gone to school and has dedicated a lot of her life
to working in a salon because based off of her experience,
she feels such meaning and purpose giving back to people
by making their hair just look beautiful
and making them feel good about themselves.
And so all of our experiences are unique to us,
therefore the purpose that we find
is gonna be unique to us as well.
The third thing I've talked about quite a bit.
And so I'm going to run through these
because I've talked about them and other dealing
with Des Moines sessions.
but storytelling brings so much meaning into our lives.
But today we're gonna look at it from the standpoint,
not necessarily of sharing our story with other people,
but looking at storytelling from the perspective of,
what is the story I tell myself about myself?
Because the reality is a trauma like receiving a diagnosis
changes our life.
It completely upsets our world.
It upsets our view of who we are.
It can upset our view of the world.
It can upset our view of our higher power,
of God, of other people in our lives.
And so by telling stories and really digging into
how have these things affected me and who am I now,
it's a really, really powerful way to make meaning
of the things that we've been through
by making sense of what we've been through.
So many people, myself included,
have asked themselves, why me?
Like, why is this happening to me?
Why did I have to be the one to go through it?
And so storytelling can bring some redemption
to what we've been through.
And it doesn't always necessarily have to
make us feel like we were supposed to go through
what we've been through,
but it can help us find some meaning in it.
Now, when I say the difference between contamination
versus redemption stories,
This is a very, very important piece.
And I'm gonna talk about how we can work through this
in just a little bit, but a contamination story,
when I'm inspecting the stories I tell about myself,
a contamination story is essentially my life was good
and then something bad happened and now my life is bad.
When I was first diagnosed with my Des Moines,
I gotta admit my story was a contamination story
for a very long time.
My life was good, things were going smooth.
I was headed in the direction I wanted to.
I had a great job.
I had a boyfriend.
I had all of these things
that I thought were gonna turn out really, really well for me.
My life was on the track that I wanted.
And then I had this diagnosis and then my life got hard.
And so that one thing,
this diagnosis has contaminated my entire story.
If you're there and you feel that way,
That's a natural part of the process.
It is a part that we really have to work through
and that we have to make sense of
in order to get to a point
where we can tell redemptive stories about our experience.
Now, when we tell redemptive stories about our experience,
it doesn't mean that having a desmoid is worth it.
It doesn't mean that like, I have to say,
I wouldn't trade it, I'm thankful for my desmoid.
I know some people can get there,
but we're trying to bring some meaning to it, you know?
And a redemption story is essentially
the reverse of a contamination story.
I have been through something hard,
but here are the things that have come out of it.
I have been through something hard with a Desmoid.
I have been through treatments that have been hard.
I have been through rejection.
I have been through disappointment.
I have been through hardships.
I have had to figure things out at a young age
that I never thought I would have to worry about.
I have had to grieve things
that I would have never imagined needing to grieve,
but I'm thankful.
And I can say now that I'm thankful
for the experiences that I've been through
because they've made me stronger.
They've provided me opportunities
to be able to give back to individuals
who are going through something similar.
They've provided me an opportunity to relate to people
in a very different way and to feel the depth
of what it is to grieve.
And man, I do some, I wish I could trade that.
I would love to have never experienced the things
that I've experienced, but I am thankful
for the opportunities that it's afforded me
to be able to connect on a deeper level with individuals.
And so our goal when we're talking about storytelling
is how do we go from that contamination story
to that redemption story or in another way,
how do we go from telling our story
as if we're speaking from a wound
versus speaking from a scar?
Now, again, the goal is not to practice toxic positivity
in any way and say that you have to be thankful
and you have to be grateful
for the things that you've been through,
but rather acknowledging that this is a hard journey,
this is a hard road,
but there are good and positive things
that can come out of it.
The literature often refers to this practice as finding a wildflower amidst the thorns.
There's a thorn bush that's hard and challenging and we don't want to deal with it.
What are the wildflowers that are springing up underneath it.
What are the things that we can hold on to and the things that we can be grateful we've experienced as a result of the things that we've been through.
Now these last two things, reading fiction and theater.
This is a recommendation. This is a suggestion for a storytelling sounds really hard. Often, it is really, really powerful to read fiction, or to watch movies or to watch plays, or to watch anything or expose ourselves to anything that allows us to feel emotions that are not
because sometimes our own emotions can be a little too raw and a little too vulnerable for us to go. And so how can I still feel and process some of these emotions, but I'm going to do it through somebody else's story versus through my story.
So that's a great place to start if you feel like it's hard to get from this contamination story to this redemption story.
what books can I read that are inspirational, that tell of hardships that people have been through and
have overcome. It doesn't have to be a story of a medical diagnosis. It can be a story of
someone in the military. It can be a story of someone who started their own business. It can be
the life of Pi. That book is very, very good for helping to stir emotions. But how can we interact
with emotions if ours feel a little too intense. And then the last thing is deliberate rumination
and essentially what this means. I've talked about this before. I am a huge, huge, huge
fan of journaling. And if our minds continue working and our minds continue mulling over our
experiences, how can we be deliberate in actually processing what's coming up for us and again,
making sense of what we've been through? I'm a big fan of something called therapeutic journaling,
which is setting a timer for 15 minutes, four times a week,
and writing stream of consciousness,
writing whatever is coming to my mind
and putting it down on paper,
and being able to get those thoughts
and those ideas out specifically about who am I now
that I've been through this thing?
Who am I now that I've experienced such challenges
and what is some of the good potentially
that has come out of it.
One of the things that I love about storytelling,
I was actually talking to Lynn a little bit about this
right before we jumped on,
but we are the authors of our own story.
And we have probably heard that statement before,
but as authors, we have the ability to edit our stories.
We have the ability to revisit the things
that we've been through
and to add and infuse meaning to those things.
We have the ability to revise how we feel
or how we think about a certain experience.
All of this takes time,
but if we take that ownership of our story,
we can often find that we can be led to a place
of making meaning of the things that we've been through.
And the final pillar of meaning
is what is referred to as transcendence.
And this is essentially just being exposed to something
where you can experience awe.
awe is being exposed to something that is bigger
than ourselves and that is worthy of just like
being on display.
When we think of awe, oftentimes we think of like
being in nature and looking at the stars
or looking at like those massive, massive trees.
For me, I live close to the beach.
And so going to the beach is something that really
inspires those feelings of awe.
And awe really is about, you know,
it's this paradoxical kind of thing
because it's about being exposed to something
that highlights the fact
that there is something out there bigger than me.
And that thing that's out there that's bigger than me
might make me feel small
and it might make me feel insignificant,
but that's where the paradox is, is that by feeling small,
I also feel connected to something
that's much larger than me
and something that has a lot of meaning.
Now, many people can do this by being out in nature.
And I recommend being out in nature as much as possible,
especially if you are, feel you're in a process of healing.
I'm exposing yourself to the things in this world.
Now we might think like, okay, Ashley, that's nice and all,
but I can't book a trip to go see like the Northern Lights
or to go see the Great Barrier Reef
or all of these big things.
And awe doesn't necessarily have to be those big things either.
Being out in nature is great, but we can experience feelings of awe
by coming into contact with art or by writing and telling our story
through our faith, if we have faith in God or faith in a higher power.
I was talking to Lynn before we jumped on just about how good my dog is to me.
I shared this at the beginning too,
of like he just has this sense of knowing
when I'm not feeling well and wanting to be like right
by my side all of the time.
And so sometimes I might even experience all
like looking at his little face and realizing like
this little creature lives with me.
And he knows that I need to be comforted
at certain times whenever I'm not feeling well.
Some of you, if you're parents, you might feel that
whenever you look at your kids
and you look at your kids enjoying themselves
having fun. And so it's not always about grand gestures. In fact, it is not often about the
things that are really grand that bring meaning into our lives. Those things definitely have an
influence and an impact in a place. But often making meaning is about recognizing the small
interactions and the meaning that can be found in those small interactions with individuals,
small interactions with things that are larger than us, making sense of our story, and also
understanding and identifying where do I have purpose, even if it is just in simple acts of
kindness throughout the day. Now some of you may have heard of Victor Frankel. Victor Frankel
wrote a book called Man's Search for Meeting while he was in Auschwitz, and he essentially says that
in order to bring meaning into our lives,
in order to really develop those four pillars
that we just talked about,
what are things that we can do
in order to create that meaning.
And he, through his research and through his experience,
he was also a psychologist.
And so his research informed a lot of his work,
but also his experience living in Auschwitz.
He says these things,
One, by doing a deed or creating a work.
Now these are very tangible things that we can do
to help create meaning of the things that we've been through.
Doing a deed speaks to that belonging,
that connection piece, speaks to that purpose piece, right?
Creating a work might speak to the transcendence piece
of really inspiring awe.
And this can be service oriented,
doing something for somebody else,
or it can be creativity oriented,
maybe doing art, writing, journaling.
The second thing says,
by appreciating the experience of someone or something.
And I love that he uses the word appreciate.
I think all of us have experienced
some degree of toxic positivity,
which is essentially the pressure to be positive all the time
and to kind of ignore the fact
that we've actually been through something challenging.
And so he doesn't say be thankful for people necessarily,
but he says to appreciate the experience
of being with someone or something.
And again, that can speak to that sense of belonging,
that can speak to that sense of transcendence
or even storytelling by connecting with others
through sharing stories.
And finally, by choosing your attitude towards suffering.
This is a big one, and I think it is really inspiring
that we can take ownership of very little,
or we can take control of very little in life.
I would dare to guess that most of us
did not ask for our diagnoses,
did not want them, would rather not have them.
We didn't have a choice in the matter.
But the thing that we can choose is our attitude
towards the suffering that we're going through.
And what might that look like?
and how do we want to approach this journey?
Now, the final thing I'm gonna share today
because we've talked about post-traumatic growth
throughout our time together
and that growth really speaks to these areas of change
that we might see in our life.
As a result of the trauma that we've been through,
as a result of our diagnosis,
we have a very high potential of being able
to pick up the pieces of the vase
and create something really beautiful and really new
out of those inherently worthy and valuable pieces.
And whenever we strive to make meaning
and whenever we take an active stance
towards bringing meaning to our experience,
these are the things waiting for us on the other side.
The ability to relate to others
in deeper and more meaningful ways.
This YOLO, like you only live once type attitude of,
I am open to new possibilities.
I want to experience all that I can
because I've been confronted with the fact
that life is short and life can be hard.
And so I want to enjoy and treasure and hold precious,
all of the things that I can.
The development of personal strength and confidence,
knowing that I have been through hard things
and I can continue to go through hard things
and I can continue to come out on the other side.
in appreciation for life, the relationships that we have,
the experiences that we have,
the things that we get the opportunity to be a part of,
and spiritual development for many of us
who seek to deepen our relationships with God
with a higher power,
or seek spiritual development in some other way.
I'll leave this slide up here,
and I know we ran through a really heavy topic
in a shorter period of time,
but much of what I talked about today
is found in these resources.
And so if this is something that you are struggling with
or that you feel like you'd like to learn more about
or you'd like to really invest in the process
of making meaning of what you have been through,
these are very powerful resources
to be able to help with that.
So Lynn, I'm going to pass it over to you
in case there's any questions.
- Okay, great.
Let's see what we have here.
Okay, so here's a question for you.
This was a lot that you presented, right?
And I guess someone is wondering,
what if it's just too much?
Maybe what if I'm just too tired
to make meaning of all of this?
- Yeah, great question.
And the very first session on dealing with Des Moines,
we've touched on this a little bit.
The fact that, you know what?
That's a very, very valid point.
And especially dependent on where we are in our diagnosis
and where we are in our treatment,
sometimes we are just in survival mode
and it's okay to be in survival mode
and for the goal to be just to get through.
Making meaning of our experience comes after some time.
And so it would be unrealistic
to put the expectation on ourselves
to make meaning of the experience immediately
after we've been confronted
with the reality of our experience.
There's some time that we need to just be in survival mode
to focus on treatment, to focus on healing,
to focus on stabilizing.
Then there's some time that we need to take
to grieve the very real reality
that there's a lot of loss that can come with this experience.
And once we've worked through some of those processes
after some time, then we can really focus on,
okay, how can I make meaning of what I've been through?
I celebrated seven years since my diagnosis
a couple of days ago,
and I would say it was probably year five of my diagnosis
that I started to get to a place of diffusing
from being in survival mode and really grieving
a lot of the things that I've been through before,
I could really start to think like,
what is the meaning of this?
And so it definitely takes some time
and it's okay to give yourself the permission
and the space to be able to take that time
to just deal with getting healthy and stabilizing first
to be able to grieve
and then to be able to focus on these things
whenever you feel ready.
- Yeah, I really hear that.
And I'm making up that a lot of people,
especially when going through this trauma,
there's this expectation of like,
like you were saying,
if you ask me how I feel,
I can't even really tell you, right?
But there's this thing of I have to get out of it.
I have to get out of it.
Like it's fine, it's fine.
Everything's fine.
- Yeah.
For some people, maybe that's kind of what I'm making up,
but I'm hearing what you're saying about really
taking the time, letting yourself kind of be where you are.
Okay, and then I have,
it looks like there's another question that we have here.
And you even talked about this with regard to your own story.
This person says, I can't seem to find redemption
in my story.
How do you do that?
- Yeah, it's a great question and it's a tough process
and it's so individualized for each person.
And I think one of the first steps is knowing
that we can take ownership of our stories
and knowing that we can author our stories
and knowing that we can take responsibility
for our attitude towards suffering.
But then also some of those things that we talked about
of really learning, you know,
understanding that there's a biological thing
that has taken place whenever we've experienced trauma.
Our nervous system is turned on
and there are things that happen
that our body actually is built to do to help protect us.
But in the long term,
if we're dealing with something chronic,
it can actually pose some challenges
because our body thinks that we're in survival mode
all of the time.
And so that inability to know what I'm feeling
is a great place to start.
It seems very, very overwhelming and it can be
because it's confusing, it is overwhelming
when somebody asks me how I'm feeling
and I'm like, I literally have no idea.
I don't even know where to begin to tell you.
And so doing something like learning about
what are the emotions that we experience?
And maybe even getting a book like this
and journaling through each emotion of,
have I experienced this before?
If I have experienced it before, when was it?
And then a question that sounds maybe a little woo woo,
but it's actually one of the most significant questions
you can ask.
If I felt this emotion, where do I feel it in my body?
Where do I carry it?
Do I carry it as tension or pressure in my chest?
Do I carry it as feeling like I have a weight on my shoulders?
Do I carry it like I have a headache?
Our emotions tend to manifest somatically.
And so being able to also understand
where they're held in our body
informs and gives us a lot of information
that we can then use towards knowing who we are,
knowing how we feel about certain things,
and then walking that process
of being able to create and identify
the redemptive parts of our story.
Now, again, I'll reiterate,
it is to find the redemptive pieces of our story
is not to discount the fact that we probably
don't even want this story in the first place.
You know, like it doesn't necessarily mean
that we're trying to make a desmoid tumor worth it,
but we're trying to make it worth something
and it is worth something sometimes, so.
- You're on mute, Lynn.
I hear what you're saying.
And when you mentioned Atlas of the Heart,
like I'm imagining there must be Atlas book clubs,
but wouldn't it be cool if there was,
if you had a book club and you did a different emotion
or feeling every week and you talked about it all week,
and then you book club and then another week of journaling and then a book club.
That would be cool. That would be like a year and a half.
I think there's like 89 emotions in here. So that would be quite the commitment,
but a worthy one. And I think that would actually be really amazing. It's literally one of the things
that I recommend the most, especially at the beginning of recovery from trauma is really trying
to dive into do what are emotions because I'm not feeling them anymore and can I tap into these
emotions especially if I'm learning specifically about what they are and how they affect me.
So it's a very valuable endeavor. I really love that. I really love that.
Okay so it looks like we don't have any more questions so we're going to wrap up a little bit
early. Thank you so much Ashley. I'm sure everyone here can relate to what you've shared and
maybe next time we get together we'll be able to meet Bobo.
I know. He jumped up once or twice but.
Well that was lovely. I feel like we get to know you a little bit better each time.
- Thank you.
- So also thank you to the Desmoid Patient
and Caregiver community for joining us.
We will, as we have in the past,
we will be sharing a recording of the webinar
after it's edited.
Usually it takes about two to three weeks.
And as you know, all dealing with Desmoids content
can be found at dtrf.org/dealingwithdesmoids,
Dealing with Desmoid is all one word.
Please make sure you go to to DTRF.org to subscribe to our mailing list so that you receive notification of the recording when it goes public.
So with regard to dealing with Desmoid, what we're going to do is we're going to take a few months off.
So please make sure you stay tuned to our social media and our newsletters as we plan for our next session probably in like the second quarter or something of 2023.
And again, Ashley, thank you so much for providing such amazing information for us to support the community and their healing.
And we just like to wish everyone a wonderful holiday season.
Okay, take care everyone.
Thank you.
Happy 2023, Ashley, we will definitely be in touch.
And I hope everybody has a great holiday season.
Bye bye.
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