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Collective Grief, Collective Hope | The Eye Believe Podcast · The Eye Believe Podcast

• 0:03
  hey everybody
• 0:03
  welcome back to the Eye Believe Podcast
• 0:05
  today I am joined with my fellow patient
• 0:07
  Carol McColl and
• 0:08
  she is someone that we've had on the
• 0:10
  Eye On Mental Health series multiple times
• 0:13
  and we're having her on as a guest today again
• 0:15
  just because we are gonna talk about collective grief
• 0:18
  and collective hope
• 0:19
  and the ways that we've seen this show up
• 0:21
  in the ocular melanoma community
• 0:23
  we've like
• 0:23
  connected on social media
• 0:24
  and just through you know
• 0:26
  the last I don't know
• 0:26
  six months or so there's just been a kind of
• 0:28
  a lot of different things happening
• 0:30
  and I always appreciate Carol's insights
• 0:32
  and the things that she shares on my personal posts
• 0:34
  and the things that I see her commenting
• 0:36
  toward other patients
• 0:37
  Carol like
• 0:38
  let's just dive right into this
• 0:39
  what does collective grief mean to you
• 0:42
  and how have you
• 0:42
  I've seen that show up in the ocular melanoma community
• 0:46
  and I know that we mentioned like
• 0:47
  we want to cover grief and hope
• 0:49
  kind of in the same space
• 0:51
  well I will say personally
• 0:53
  in my own life
• 0:53
  I have had a pile of grief in my adult life
• 0:57
  but I've also found a wellspring of hope
• 0:59
  and much of that is tied to the community
• 1:02
  that's been around me
• 1:03
  at the time that I've gone through those seasons
• 1:06
  but true confession these terms
• 1:08
  collective grief and collective hope
• 1:10
  I did Google them so I was getting it right
• 1:13
  and so I will just share what I found to be the quote
• 1:17
  unquote definition of collective grief
• 1:19
  it is anytime a group or community
• 1:21
  experiences an extreme change
• 1:23
  or loss a shared loss
• 1:25
  shared grief shared emotions
• 1:27
  and we experience this many ways in our culture
• 1:30
  we see this you know
• 1:32
  we saw it on a national level with 9/11
• 1:34
  you know it didn't matter what party you belong to
• 1:37
  everybody was grieving that event
• 1:40
  and we see it with school shootings
• 1:41
  we saw it this summer with the flooding in Texas
• 1:44
  I'm a Texan it was huge here
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  sometimes it's the loss of a beloved family member
• 1:49
  on the OM pages we also experience collective grief
• 1:53
  we experience it when someone is newly diagnosed
• 1:55
  we always hear oh
• 1:56
  I'm so sorry you have reason to be here
• 1:59
  we experience it when we find out someone has Mets
• 2:02
  we all just grown inside
• 2:04
  we experience when a trial stops working
• 2:06
  and someone has to switch
• 2:07
  or maybe there's nothing left
• 2:08
  or there's disease progression
• 2:11
  we definitely experience it when someone dies
• 2:13
  I remember when Clay died a few years ago
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  and we all just like you know
• 2:17
  and we we feel that deeply
• 2:20
  because we all know and share the same fears
• 2:24
  and anxieties and concerns
• 2:25
  and we feel a loss for each Omie that goes through that
• 2:29
  whether we know them personally or not
• 2:31
  there is a true sense of loss for community
• 2:33
  and there's also awareness that could be me
• 2:37
  and that hits hard and so
• 2:39
  we move towards each other in collective grief
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  to offer comfort and encouragement and support
• 2:46
  so that's the collective grief side
• 2:48
  shall I go on with collective hope
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  absolutely I absolutely love what you said
• 2:51
  so thank you
• 2:53
  okay so with collective hope
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  which I also googled there's three components
• 2:57
  which I will also read to you actually
• 3:00
  collective hope is the shared belief
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  within a group that a better future is possible
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  that's what we all want that's what we all hope for
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  we are innately wired for survival right
• 3:10
  and so we cheer each other on
• 3:12
  with every successful scan
• 3:13
  with every good trial result for any one of us
• 3:16
  the second component
• 3:18
  is that the group has the power to achieve it
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  through cooperation and solidarity
• 3:23
  now we see this in non profits
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  like A Cure In Sight and their catchphrase
• 3:27
  Eye Believe in a cure
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  we see them going to DC to educate people about
• 3:32
  on Rare Disease Day and to um
• 3:36
  you know raise awareness with representatives
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  we see this with A Cure In Sight
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  funding research and supporting patients
• 3:42
  the third component is it goes beyond collective hope
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  goes beyond individual optimism
• 3:49
  by focusing on a common vision
• 3:51
  and the collective will to navigate challenges
• 3:54
  and work towards shared goals
• 3:56
  I just love that
• 3:57
  and we see that fostered by non profits
• 4:00
  we see for instance
• 4:01
  with Eye On Grace one of their bylines is fueling hope
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  right
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  we see it with A Cure In Sight
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  when they are doing fundraisers
• 4:10
  like the 5 KS or golf tournaments for OM and
• 4:13
  and this patient symposium
• 4:15
  which is huge in fueling hope
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  so there's this collective vision
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  and collective will in the ocular melanoma community
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  and we think of our you know
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  I did this initially thinking of us as patients
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  but we have to remember all the doctors and researchers
• 4:30
  they share that with us
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  and they are at the front lines fighting for that
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  and so we get to cheer them on also
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  and be grateful for them
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  as a community we get
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  we experience collective hope
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  when there are these new advances
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  or new things approved by the FDA
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  new trials new treatments
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  new approaches
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  and it truly is a one for all and all for one mentality
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  there are some people who participate in trials
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  knowing that even if the trial doesn't work for them
• 4:59
  their participation can benefit others down the road
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  or they get on board with different studies'cause they
• 5:04
  it's not just about me or about you
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  it's about the whole community
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  this is what it means to be a community
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  to be pulling for one another
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  and contributing to that collective hope
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  oh my goodness
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  this is like I mean I
• 5:16
  I think this hits the nail on the head
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  for so many parts of the things that we hear and see in
• 5:22
  especially like
• 5:23
  on social media groups
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  and I know that when we talked before
• 5:25
  that was kind of
• 5:26
  one of the things that we talked a little about is how
• 5:28
  when the collective grief happens
• 5:31
  there's kind of a shift where a lot of patients kind of
• 5:35
  I I
• 5:35
  I don't wanna say like
• 5:37
  fall into well
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  maybe that's a good phrase
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  they kind of fall into fear because of that like
• 5:42
  oh man
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  this is so triggering this could happen to me
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  and I felt that like
• 5:46
  from the moment that I had a friend of mine who was
• 5:48
  you know one of the first people I connected with
• 5:50
  with ocular melanoma
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  her name is Lexi and she unfortunately passed away
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  but when she was diagnosed with metastatic disease
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  in the December of 2021 I was devastated
• 6:01
  I mean I was devastated
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  and it wasn't just devastated for her
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  it was devastated because it was like
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  it was hard to kind of
• 6:09
  wrap my head around the idea that
• 6:12
  that I could still have hope for people like me
• 6:14
  people like her because like
• 6:16
  it's one of those freak things where
• 6:18
  you know
• 6:18
  this was never supposed to happen to somebody like me
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  or somebody like her in the first place
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  statistically
• 6:22
  we shouldn't exist in the ocular melanoma community
• 6:24
  as young people with OM but we do
• 6:27
  and so then when we deal with metastatic disease
• 6:30
  it feels like
• 6:31
  infinitely harder in that
• 6:32
  you know in that realm
• 6:33
  and I think that that's the case really
• 6:35
  for anybody dealing with Mets
• 6:36
  but seeing someone you love
• 6:38
  someone you know
• 6:38
  experience the just the devastation that
• 6:43
  getting a new wave to that diagnosis
• 6:45
  I love what Clay used to say all the time
• 6:47
  he would talk about like
• 6:47
  this diagnosis comes in waves right
• 6:49
  we've we experience things in waves in OM
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  and it you know
• 6:54
  there's there's highs and lows
• 6:55
  for sure
• 6:56
  but I I think that maybe the
• 6:58
  the biggest thing that I pulled out of what you said
• 7:01
  earlier was that we are innately wired for survival
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  and that that is why leaning into that collective
• 7:08
  shared hope is so so helpful
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  um because I think what we notice is
• 7:13
  we notice people experience the grief right
• 7:16
  the the loss of someone like Clay or someone like Lexi
• 7:19
  or someone like my friend Ali
• 7:20
  we see the loss happen and then we pull out right
• 7:23
  we pull away from the community
• 7:25
  because we're triggered and we're devastated
• 7:27
  we're gonna have grief
• 7:28
  because that's gonna happen in a cancer community
• 7:31
  but we also need hope like
• 7:33
  we are wired for survival
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  we're we're wired to hope um
• 7:37
  and to have kind of this faith despite the unknown
• 7:39
  so why is it important to hold space for both
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  and to not just kind of like
• 7:43
  put your head in the sand
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  and completely avoid community all together
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  as opposed to you know
• 7:47
  experiencing the highs and the lows as a
• 7:49
  as a group yeah
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  and let me just tap into something you just said
• 7:53
  I think it there is value at different points
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  sometimes we know that emotionally
• 7:58
  we cannot fear anymore sadness
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  like we've just hit our tipping point
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  and not just absolutely any
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  but maybe other things happening in our lives
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  and we just need to step back
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  and I just want to make sure that people recognize that
• 8:13
  we honor that there's
• 8:14
  there is a space that
• 8:15
  we might need to step back and breathe
• 8:18
  let some of the emotional dust settle
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  before we step back in but stepping back in
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  as you say is
• 8:24
  that is part of also moving towards community
• 8:27
  and embracing hope again and
• 8:29
  and for me like
• 8:30
  one of my purposes on the pages
• 8:32
  is just to encourage people
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  I don't have Mets I hope to god I don't get Mets
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  but I could and but right now
• 8:39
  I'm in a season
• 8:40
  where I can step in and encourage people
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  and so
• 8:42
  just because I'm not going through
• 8:44
  what somebody else is going through
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  it doesn't mean I don't have something to give
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  because everybody needs encouragement
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  the word I once had a friend who told me that
• 8:53
  the word encouragement means
• 8:55
  to fill with courage and courage
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  to fill with courage and we do that in community
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  I love it too
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  so I'll probably end up saying that again
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  during this time but
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  so in the community yes
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  as you say we do experience loss and grief
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  on so many levels even at the time of diagnosis
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  maybe even most traumatically
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  at least for those of us who don't yet have Mets
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  it's most traumatic at the time of diagnosis
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  there is the loss of health
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  there is the loss of the future we envisioned
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  for some it's the physical loss of their eye
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  for many there's the loss of feeling
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  understood
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  even by their family and their closest friends
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  because they don't get what it is to have scanxiety or to
• 9:35
  um deal with that
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  waiting for the other shoe to drop kind of feeling
• 9:39
  some have lost their life partners
• 9:40
  because that life partner
• 9:42
  didn't want to deal with the reality of cancer
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  and so then they are truly walking it alone
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  in a way they never imagined they would have to
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  but for every one of us there is the reality
• 9:52
  of facing our mortality in a new way
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  you know when you're older
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  like me I'm turning 68
• 9:57
  you know you're kind of thinking about that anyway
• 9:59
  but when you're younger in the prime of life
• 10:02
  that's kind of not the forefront of your mind
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  but for all of us no matter what the age is
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  it's facing that mortality
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  and that creates a paradigm shift
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  because we start to look at life
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  through a new and different lens
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  and we see life more clearly than we did before
• 10:19
  and we reprioritize what matters
• 10:22
  there are so many OM patients who have said
• 10:24
  even though I have OM and I can't see out of that eye
• 10:27
  I see life more clearly
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  and I love that kind of juxtaposition there
• 10:31
  in the midst of that grief
• 10:32
  we find we're grabbing onto hope
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  because we talk about living fully now
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  we create memories now with loved ones
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  we tackle that bucket list now
• 10:41
  we want to make each day count
• 10:43
  and we want to live in gratitude
• 10:45
  for the life we do have now
• 10:47
  you've often said the days add up today
• 10:49
  I'm here today and the days add up right
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  and so
• 10:52
  we're essentially creating our desired future now
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  instead of waiting around for someday
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  I think that's very life giving to all of us
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  and we cheer each other on in that
• 11:02
  these are really deliberate
• 11:04
  positive choices they're hope filled choices
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  and those choices create meaning
• 11:10
  at it's a place of great difficulty
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  and here's something that I will probably repeat again
• 11:15
  also but I'm gonna repeat it twice right now
• 11:18
  meaning fuels hope hope fuels strength and courage
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  and that fuels resilience and perseverance
• 11:25
  I know resilience is a big word for you
• 11:27
  but we have to remember this
• 11:28
  meaning fuels hope what are you living for
• 11:31
  what's your purpose hope fuels strength and courage
• 11:35
  and that fuels resilience and perseverance
• 11:38
  and we need all of those things
• 11:40
  and I will say that I mean
• 11:42
  that's something that I just kind of wrote
• 11:44
  but I will say that research supports this
• 11:47
  research says that more hopeful people are healthier
• 11:50
  as well as less anxious and depressed
• 11:53
  moreover instead of being wishful thinking
• 11:55
  hope prepares us to take productive action steps
• 12:00
  and those who are more hopeful
• 12:02
  tend to cope with adversity
• 12:04
  in more resilient and adaptive ways
• 12:06
  so we have to we we
• 12:09
  we inevitably experience the grief
• 12:11
  but we have got to find a way to grab onto that hope
• 12:14
  also and we often say in the OM community
• 12:19
  everything is welcome here
• 12:20
  so
• 12:21
  we empathize and grieve with each other in the losses
• 12:24
  but we also cheer each other on in the successes
• 12:26
  I think of OM as a Marathon
• 12:29
  it's not a sprint it's a Marathon
• 12:31
  we are each running our own race in that Marathon
• 12:34
  and we each have our own
• 12:35
  particular challenges in that race
• 12:38
  but side by side we're running it together
• 12:41
  and so we support each other
• 12:43
  holding on to that hope chasing joy
• 12:45
  and embracing life in new and better ways
• 12:48
  so yeah
• 12:50
  no I think that's beautiful
• 12:51
  and I
• 12:52
  I absolutely love what you said earlier about that
• 12:55
  when we have meaning like the meaning
• 12:57
  it's meaning making that is
• 12:58
  that's one of the most challenging things to do
• 13:00
  I think in a cancer diagnosis
• 13:02
  is making meaning of this
• 13:03
  because I think the
• 13:05
  the immediate answer when you get diagnosed
• 13:07
  wherever you're at in the journey
• 13:09
  is why did this happen right
• 13:11
  you want to look for that kind of meaning
• 13:12
  and sometimes more often than not
• 13:15
  I think with this diagnosis
• 13:16
  there isn't a reason right
• 13:17
  it just happened and it's really
• 13:19
  really crappy that it happened to any of us
• 13:21
  but that meaning that we can make out of this right
• 13:25
  like the idea that
• 13:26
  you know I kind of latched onto that okay
• 13:28
  well you know
• 13:28
  this happened to me I can't change the circumstance
• 13:31
  but maybe what I can share
• 13:33
  you know on social media
• 13:34
  and the way that I can serve the wider OM community
• 13:37
  through podcasting through social media
• 13:38
  through just sharing my personal story
• 13:41
  maybe that can help one other person
• 13:43
  or like I've heard so many people say
• 13:45
  you know I'm posting about my diagnosis
• 13:47
  because I have hope that maybe you're gonna see this
• 13:50
  and it's just gonna in
• 13:51
  you know encourage one person to go to the eye doctor
• 13:53
  and that they're gonna find an ocular melanoma
• 13:56
  way sooner than than they did
• 13:58
  and that they'll be in a better spot because of
• 14:00
  you know earlier detection
• 14:01
  those kinds of things right
• 14:02
  that's meaning making
• 14:03
  it doesn't have to just be accepting your diagnosis
• 14:06
  but I do think that when we make meaning
• 14:08
  or we have purpose and meaning
• 14:10
  not just of our diagnosis
• 14:11
  but in life in general
• 14:12
  then it's so much easier to feel hope
• 14:15
  and to then feel the courage and the strength
• 14:19
  to then be resilient and have perseverance
• 14:21
  in the face of all of the big curve
• 14:23
  balls that come your way with an OM diagnosis
• 14:25
  because it's not just the one diagnosis part
• 14:27
  like there's a lot we have to deal with a lot
• 14:29
  Castle Biosciences is a proud sponsor of this
• 14:32
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• 14:34
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• 14:36
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• 14:38
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• 14:40
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• 14:41
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• 14:44
  to learn more visit Castlebiosciences.com
• 14:48
  it's a challenge yeah
• 14:49
  absolutely a challenge to deal with
• 14:51
  I'll put in a plug here for a book that
• 14:53
  I honestly have not read the whole book
• 14:54
  I read excerpts of it but it
• 14:56
  so many people have read it
• 14:58
  that tell me how wonderful it was
• 15:00
  and it's called Man's Search For Meaning
• 15:02
  by Viktor Frankl and he's been in a concentration camp
• 15:05
  it was finding meaning even in that circumstance
• 15:08
  that gave him hope
• 15:10
  and gave him that resilience that he needed
• 15:12
  so this is not just fluffy
• 15:14
  talk about something fluffy called hope
• 15:16
  this is real real stuff
• 15:18
  and with loss it can be so hard to find that meaning
• 15:21
  just on a personal level I feel like it's
• 15:23
  it's been a huge privilege
• 15:26
  to be able to witness
• 15:27
  the way that you and your family have grieved
• 15:29
  because I know I know
• 15:30
  that you guys lost your 11 year old granddaughter
• 15:32
  to brain cancer
• 15:33
  so do you want to talk a little about how like
• 15:35
  grief and hope have been able
• 15:36
  to coexist for you guys in that personal circumstance
• 15:39
  sure
• 15:39
  I will say
• 15:40
  you know it was a mix of grief and hope
• 15:43
  for the 19 months after her brain tumor was discovered
• 15:46
  she had a glioblastoma and she was 9
• 15:49
  um and if I tear up
• 15:50
  it's because it's you know
• 15:51
  three and a half years ago
• 15:52
  and it's still fresh
• 15:53
  and it will always be fresh in my heart
• 15:55
  I think but um
• 15:57
  you know we
• 15:58
  we learned to just accept both along the way
• 16:01
  because both both were needed and um
• 16:06
  you know for
• 16:06
  for her family for us
• 16:08
  we had our religious moorings and our Christian faith
• 16:11
  that definitely were anchoring for us
• 16:14
  and yet I also know that you know
• 16:17
  many of us in the family would just cry out to god like
• 16:19
  oh please don't let this happen
• 16:21
  you know you're just like
• 16:23
  dreading that outcome which
• 16:24
  you know glioblastoma has
• 16:27
  does not have a good outcome if there is no cure
• 16:29
  so um
• 16:30
  but I will say that Gwyn her name is Gwyn and um
• 16:35
  she herself was a beautiful example of grief and hope
• 16:39
  she wrote a story
• 16:40
  the summer before she was diagnosed with cancer
• 16:42
  she was 9 and eventually
• 16:46
  as her tumor um
• 16:48
  came back again after a year
• 16:51
  she was diagnosed in November at Thanksgiving
• 16:53
  then the following Thanksgiving
• 16:54
  it came back and she wanted a
• 16:58
  she had a make a wish
• 16:59
  and her make a wish was to become a published author
• 17:02
  and she wanted to publish a story that she had written
• 17:05
  before she was actually diagnosed
• 17:11
  and again this gave her meaning
• 17:13
  um
• 17:13
  her purpose in writing it was she wanted to know people
• 17:16
  to know
• 17:16
  that they can hold grief and joy at the same time
• 17:20
  now this isn't something she came up with on her own
• 17:24
  this is something that had been talked about
• 17:26
  in her family long before her diagnosis
• 17:29
  but these were just basic psychological principles
• 17:32
  that this nine year old had grasped and
• 17:35
  and wanted to share
• 17:36
  it's a children's book and so a lot of people buy it
• 17:39
  for other children with cancer
• 17:41
  but it's also a book you know
• 17:43
  I have clients in my counseling practice
• 17:45
  who have bought it you know
• 17:46
  it's just it's an uplifting book
• 17:48
  and it helps um
• 17:50
  give some perspective
• 17:51
  there's a psychological principle underneath it
• 17:54
  when we repress one emotion
• 17:56
  tamping it down
• 17:58
  we actually tamp down all of our emotions
• 18:00
  we think oh
• 18:00
  I'm just gonna push this down
• 18:03
  oh no
• 18:04
  we push it all down and then we wonder why we're
• 18:07
  you know not feeling so much joy anymore
• 18:09
  and so much happiness or whatever
• 18:12
  so if we try to suppress or avoid fear or loss
• 18:16
  we're also going to feel less peace and less joy
• 18:19
  so we've got to remember that grief
• 18:21
  and hope must coexist um
• 18:23
  there it's been said
• 18:24
  when we stop hoping we begin to die
• 18:27
  and so we need to hope in this life
• 18:30
  and for me in my own belief system
• 18:32
  there's also a hope for the life to come
• 18:34
  so my hope is really
• 18:37
  critically important to my own journey in life
• 18:40
  not just with OM
• 18:41
  but with so many other things that are part of my story
• 18:44
  so
• 18:45
  but I will say hope
• 18:47
  hope is a tricky word it
• 18:49
  it can sound really fluffy
• 18:50
  it can sound like Pollyanna positivity oh
• 18:53
  things will be better tomorrow
• 18:54
  and that's not actually true hope
• 18:56
  that's or like
• 18:56
  just have hope it's gonna be okay
• 18:58
  like yeah
• 18:59
  hold on to hope but it's
• 19:00
  what is that it's one of those words that I think has
• 19:02
  has it has such deep meaning
• 19:05
  but because it's so overused in difficult situations
• 19:09
  it can start to kind of lose its effectiveness
• 19:12
  or you start to to feel the false positivity
• 19:16
  or not the not the false positivity
• 19:18
  the toxic positivity that's what I'm thinking
• 19:20
  I call Pollyanna positivity
• 19:22
  you know oh
• 19:23
  it'll be better tomorrow and
• 19:26
  hope
• 19:26
  is not pretending that things are better than they are
• 19:29
  and it's not ignoring difficulties
• 19:31
  that's magical thinking which is really very unhealthy
• 19:34
  actually but
• 19:35
  I think that hope
• 19:36
  is seeing those difficulties for what they are
• 19:39
  recognizing there's something to be good
• 19:42
  good to be found in the midst of them
• 19:44
  and then choosing to believe
• 19:45
  there is a future to look forward to
• 19:47
  in spite of them that future might just be tomorrow
• 19:50
  and that's okay tomorrow is my future right
• 19:53
  and I've been given today
• 19:54
  and I do hope for tomorrow
• 19:55
  right so um
• 19:57
  sometimes that's all I can do
• 19:59
  like that's
• 19:59
  that's why the mantra like
• 20:00
  I'm here today I'll be here tomorrow
• 20:03
  the tomorrows add up
• 20:04
  that's why I landed on it
• 20:05
  it was because the most I could hope for in that moment
• 20:08
  for how much like
• 20:08
  devastation and grief I was feeling
• 20:10
  was the next day and there's truth in that
• 20:12
  because today is all we have been given
• 20:14
  none of us knows I mean
• 20:16
  I could get taken out by a truck this afternoon
• 20:19
  when I'm doing my errands
• 20:20
  who knows you know
• 20:21
  we have today so we make today count
• 20:24
  we make it matter we do
• 20:25
  we do well we love well
• 20:27
  we give well
• 20:28
  and then tomorrow we wake up and we do the same thing
• 20:31
  um but I will say
• 20:33
  I think of hope like
• 20:34
  individual hope is like holding a candle
• 20:36
  but there are times that that candle is flickering
• 20:40
  you know a bad result to a scan or
• 20:43
  you know just bad news in general
• 20:46
  bad circumstances in life
• 20:47
  and that candle can start flickering
• 20:49
  we certainly went through that with our granddaughter
• 20:51
  um but when there's more candles that enter the room
• 20:56
  we can borrow from their light
• 20:58
  and then
• 20:59
  that light helps us find handles in that dark place
• 21:03
  um and that helps us keep going
• 21:05
  that is the gift and the blessing of collective hope
• 21:09
  I feel like one of the things that we talked about
• 21:11
  is a parallel to the drippy um
• 21:13
  the sad rain cloud book that your
• 21:15
  your granddaughter Gwyn wrote
• 21:17
  which I have by the way
• 21:18
  and I highly recommend it
• 21:19
  I think it's a really good book
• 21:20
  um it's been really great for me to have for my kids
• 21:23
  and just to like
• 21:24
  kind of bring out here and there
• 21:25
  to just remind them that
• 21:27
  the goal is not only to feel good right
• 21:30
  it's not only to feel like oh
• 21:32
  I'm only happy I'm only joyful
• 21:33
  I'm only hopeful
• 21:35
  the goal is to learn how to process the feelings right
• 21:38
  and that all of the feelings have space
• 21:40
  and I actually like
• 21:41
  I think it was
• 21:42
  I don't remember who it was that I heard from
• 21:44
  but I
• 21:44
  I actually started kind of veering away from calling
• 21:47
  you know difficult emotions
• 21:49
  even like
• 21:49
  bad feelings right
• 21:50
  it's not a bad feeling it's a feeling
• 21:52
  there is no good or bad to it
• 21:54
  they can be difficult to feel
• 21:55
  or difficult to experience
• 21:56
  I love the scene from the inside out movie where
• 22:01
  at the very end if you haven't seen it
• 22:02
  if you haven't seen the movie Inside Out
• 22:04
  I'm sorry spoilers
• 22:05
  spoilers for the movie it's such a good movie
• 22:08
  it's got such good um
• 22:10
  meaning for I think
• 22:12
  adults and for kids alike
• 22:13
  but they essentially learn that
• 22:15
  you know they need sadness right
• 22:17
  joy spends this whole time in the whole movie
• 22:19
  trying to get rid of sadness and like
• 22:20
  just telling her like
• 22:21
  no no
• 22:22
  no sadness
• 22:22
  like you're wrecking everything
• 22:23
  you're ruining everything
• 22:24
  and sadness eventually
• 22:26
  is the one that they realize they need sadness
• 22:28
  that joy doesn't actually exist alone
• 22:30
  joy exists in some ways because of sadness
• 22:33
  and it's because of the sadness that is felt
• 22:36
  when you're grieving something right
• 22:38
  in this case it's Riley grieving the loss of a game
• 22:41
  she lost a game she like
• 22:42
  didn't make a good shot or
• 22:43
  you know
• 22:43
  something happened in that game that was different
• 22:45
  you know disappointing
• 22:46
  devastating
• 22:46
  and so there was some level of sadness and grief and
• 22:49
  and upset but her community came around her
• 22:53
  and it was the community coming around her
• 22:56
  that brought the joy back to life
• 22:57
  you said something else about the movie
• 22:59
  about how
• 22:59
  it wasn't just realizing that you needed the joy
• 23:02
  and the sadness it was also that sadness
• 23:04
  what did sadness do sadness led the way home
• 23:06
  joy kept trying oh yeah
• 23:08
  sadness back and it wasn't working
• 23:10
  and she's like no no
• 23:11
  we go this way and
• 23:12
  and sadness is like no
• 23:13
  actually it's this way
• 23:15
  sadness LED the way home and actually
• 23:17
  anger was at first through at the end
• 23:20
  and there's a place for healthy anger
• 23:23
  you know and so we need to
• 23:25
  I remember early in the movie
• 23:26
  joy draws a circle on the floor and says to sadness
• 23:29
  now you stay here don't cross that line
• 23:31
  you're gonna wreck everything
• 23:33
  you know and we do that with ourselves
• 23:35
  we compartmentalize and say oh
• 23:37
  just have to stay positive
• 23:39
  and I
• 23:39
  I'm a big believer that there's value in being positive
• 23:43
  you know we get to choose that
• 23:44
  and that does not mean it's
• 23:47
  it's not that toxic positivity
• 23:49
  it is honest
• 23:50
  we can see our glass is half full or half empty
• 23:53
  and it's actually both isn't it
• 23:55
  really to the point of that movie
• 23:57
  and what Riley experienced
• 23:59
  you know in the
• 24:00
  the moment that she was really sad
• 24:01
  her team rallied around her
• 24:03
  um and so that
• 24:04
  I feel like
• 24:04
  is a beautiful demonstration of this idea of community
• 24:07
  uh so
• 24:08
  what is the role of community
• 24:09
  play in helping people like us
• 24:11
  with an Om diagnosis process grief
• 24:14
  and transform it into connection or meaning
• 24:17
  well as you've already said
• 24:18
  life is full of highs and lows
• 24:20
  and we certainly have the highs and lows
• 24:22
  within this ocular melanoma community
• 24:24
  but we were never meant to carry those things alone
• 24:28
  there's a psychologist his name is Kurt Thompson
• 24:30
  I love his books
• 24:32
  and he says
• 24:32
  we were made for relationship and wired for connection
• 24:36
  our first community is actually in the family system
• 24:40
  and we see this from the time a baby is born
• 24:43
  the importance of bonding and emotional attachment
• 24:45
  and how that leads to emotional health and thriving
• 24:49
  and when a baby doesn't have that
• 24:50
  there's failure to thrive
• 24:52
  and that affects the baby in body
• 24:54
  soul and spirit
• 24:55
  physical health emotional health
• 24:57
  the whole gamut
• 24:58
  but that's not limited to infancy
• 25:00
  that's
• 25:00
  that's just a clue of how we are wired as human beings
• 25:03
  that's how we are created to be
• 25:05
  we thrive in loving
• 25:07
  supportive relationships from the day we are born
• 25:10
  when we isolate
• 25:11
  we tend to have see our emotional health suffer
• 25:14
  some people are more prone to depression
• 25:16
  or hopelessness or even physical sickness
• 25:19
  and we have to remember there's a book also called um
• 25:22
  the Body Keeps the score and it just talks about
• 25:24
  how emotional health impacts physical health
• 25:26
  and we all want to protect our physical health right
• 25:29
  like we're all doing the things we can
• 25:30
  to be as healthy as we can be
• 25:33
  just hoping to that will help our bodies along right
• 25:36
  so um
• 25:37
  Kurt Thompson says that we all need relationships
• 25:40
  where we feel seen soothed
• 25:42
  safe and secure
• 25:44
  I love those four words
• 25:46
  and I love the way he strings them together
• 25:48
  for many people after diagnosis and treatment
• 25:51
  including myself there's a sense of loneliness
• 25:54
  and isolation'cause we're dealing with this
• 25:56
  rare and terrible cancer nobody's heard of
• 25:58
  no one understands it in my own story
• 26:02
  I went through a very rough season
• 26:04
  of grief during the four months after diagnosis
• 26:07
  it was grief and depression
• 26:08
  I was diagnosed in July
• 26:10
  my daughter got married two weeks later
• 26:12
  and then I just got and I got treatment six days later
• 26:15
  and then I just took a nose dive
• 26:16
  and I went to my very first
• 26:19
  A Cure In Sight patient symposium
• 26:22
  that November right after Thanksgiving
• 26:24
  and I was in a really dark place
• 26:27
  a very dark place
• 26:28
  I was new nobody knew me
• 26:30
  I had a lot going on inside me
• 26:32
  that was really the diagnosis
• 26:33
  and to other factors in my life
• 26:35
  but even though I was fairly reserved
• 26:38
  I witnessed the OM community around me
• 26:42
  somewhere in their own dark places
• 26:44
  others were thriving but being among that community
• 26:48
  you know this cause you go there all the time right
• 26:51
  being among that community
• 26:52
  was both comforting and encouraging
• 26:55
  and the community helped me draw me towards hope
• 26:58
  it was like this tectonic shift internally for me
• 27:01
  in the beginning of coming out
• 27:03
  of my post diagnosis depression
• 27:07
  that was there that I also learned about the OM pages
• 27:09
  that I didn't even know exist
• 27:10
  and oh my gosh
• 27:11
  I wish I had not gone through those first four months
• 27:13
  without those pages
• 27:14
  I might not have cratered the way I did
• 27:17
  so for me and so many others in the OM community
• 27:20
  being with our omies
• 27:22
  whether it's on the pages or in person
• 27:24
  becomes a healing space where we feel seen soothed
• 27:28
  safe and secure
• 27:30
  because all the emotions are welcome in our culture
• 27:33
  grief is not always a welcome emotion
• 27:37
  people don't really know what to do with it
• 27:39
  there can be an avoidance
• 27:40
  people avoid nursing homes
• 27:42
  they avoid talking about the loved one that died
• 27:45
  oh don't bring her up
• 27:46
  they'll be sad it's like no
• 27:47
  we want to talk about Gwyn
• 27:49
  putting people on a timeline
• 27:50
  we expect them to move on
• 27:52
  get over it kind of a thing
• 27:53
  it's time to move forward
• 27:56
  and all of that is just because
• 27:58
  we are uncomfortable with grief
• 27:59
  we are uncomfortable with that person's grief
• 28:01
  but here's the thing
• 28:02
  we can push grief away like a petulant child
• 28:05
  but our emotions insist on being heard
• 28:08
  grief will be heard
• 28:10
  sometimes it'll come out in depression
• 28:12
  often it comes out sideways in anger
• 28:14
  we can have a whole mix of ways that it shows up
• 28:17
  but when we welcome all the emotions in ourselves
• 28:21
  and in others we can't really welcome them in others
• 28:23
  if we're not welcoming them in ourselves
• 28:25
  but when we welcome them all
• 28:27
  and let them have an expression
• 28:30
  a healthy expression not a destructive one
• 28:32
  um we become more fully human
• 28:35
  that is part of being fully alive
• 28:37
  a baby coming out of the womb
• 28:39
  doesn't have any checks on their emotions
• 28:42
  they just let you know what they're feeling right
• 28:44
  that baby is fully alive
• 28:46
  and we learn in our culture and in life
• 28:49
  to just like
• 28:49
  tamp it down and you know
• 28:51
  keep a lid on it but part of being fully alive
• 28:55
  is being connected to our emotions
• 28:58
  and they deserve a place at the table
• 29:00
  they deserve to be seen to have a voice
• 29:02
  when you were talking about the movie
• 29:04
  inside out
• 29:05
  I was just visualizing all these emotions
• 29:07
  sitting around a boardroom table
• 29:09
  you know
• 29:10
  and we don't want the emotions driving the train
• 29:12
  we don't want them like
• 29:14
  in charge but we have to listen to what they tell us
• 29:17
  because they're telling us what we need
• 29:19
  if I'm sad I need comfort
• 29:21
  if I'm anxious I need reassurance or peace
• 29:25
  if I'm depressed I need hope
• 29:28
  so if we can't label that thing we're feeling
• 29:30
  then we also don't really know what we need
• 29:33
  and with my clients
• 29:34
  this is the first thing I always ask them
• 29:36
  what are you feeling today
• 29:37
  because that feeling will tell me
• 29:39
  and tell them what they need
• 29:41
  and then we can do the things we need to do
• 29:43
  to get that need met not just passively sitting around
• 29:46
  hoping that need somehow gets understood by somebody
• 29:50
  we can be proactive and get that need met for ourselves
• 29:53
  you're bringing up something that
• 29:54
  I actually talked about with my psychologist recently
• 29:56
  and I was experiencing a lot of anxiety
• 29:59
  and he actually framed anxiety
• 30:01
  in a completely different way
• 30:02
  for me
• 30:02
  he doesn't call anxiety a feeling
• 30:04
  in his mind he looks at anxiety as a response
• 30:07
  that it is a response to unaddressed fear
• 30:11
  or to unaddress anger or you know
• 30:13
  whatever other kind of main underlying emotion is there
• 30:16
  that anxiety that we sometimes feel
• 30:18
  that we you know
• 30:19
  the way we feel those feelings in our body
• 30:21
  that anxiety is a response
• 30:22
  it's a physiological response
• 30:24
  that is gonna happen if I don't address the core
• 30:28
  you know the core emotions
• 30:29
  if I don't give them a seat at the table
• 30:31
  like you were saying
• 30:32
  and so when I choose to
• 30:33
  then learn how to give them the seat at the table
• 30:37
  and to listen and to pay attention
• 30:39
  hold space for those feelings
• 30:40
  and to just not make them wrong for showing up
• 30:42
  because they're gonna show up
• 30:43
  they show up a lot in a cancer diagnosis
• 30:45
  like I don't know about you guys listening
• 30:47
  but I feel like sadness and grief and anger and fear
• 30:51
  like they all show up a lot throughout cancer
• 30:54
  um and I'm five plus years into my diagnosis
• 30:57
  Carol I
• 30:58
  I don't know how many years you're into OM
• 30:59
  but 7 7 yeah
• 31:00
  like it
• 31:01
  it doesn't stop like
• 31:02
  you're gonna keep feeling these feelings in waves
• 31:04
  and in in different things
• 31:05
  so
• 31:06
  better learn now how to allow them to sit at the table
• 31:09
  and learn how to respond to them
• 31:10
  so that you're not just having an automatic reaction
• 31:13
  I think yes
• 31:14
  and as we learn how to respond to them
• 31:16
  it gives us much more capacity for empathy
• 31:20
  for other people going through those
• 31:21
  we don't shut other people down
• 31:23
  we say we get it
• 31:24
  your feelings are welcome
• 31:26
  and so
• 31:26
  going back to collective grief and collective hope
• 31:31
  I've got this little mathematical equation that I like
• 31:34
  that when highs and lows are shared collectively
• 31:37
  grief is divided and hope is multiplied
• 31:40
  and that as I said before
• 31:42
  hope results in resilience
• 31:45
  encouragement filling with courage
• 31:47
  comfort and joy
• 31:48
  I love that mathematical equation
• 31:51
  and I think that it's a really important one
• 31:53
  to grab onto as in the collective community
• 31:56
  this is why we need to be connected to other people
• 32:00
  some people I'm an introvert
• 32:01
  like it's weird that I'm doing this
• 32:03
  but I'm an introvert
• 32:04
  so I don't need lots of people in my life
• 32:07
  I need that handful of close people
• 32:09
  and there's a handful of Omis
• 32:11
  that I've become very close to
• 32:13
  and we have a private thread
• 32:14
  that we are always on with each other
• 32:16
  two of them have met to have lost an eye
• 32:19
  we you know
• 32:19
  we
• 32:20
  but we cheer each other on and we pray for each other
• 32:23
  and we cry with each other and all of the things right
• 32:27
  we need that collective grief and collective hope
• 32:31
  absolutely well
• 32:32
  thank you
• 33:04
  okay so kind of moving forward
• 33:06
  how do like
• 33:07
  cultural differences
• 33:08
  spiritual perspectives and differences
• 33:10
  how can those shape the ways that we can grieve
• 33:13
  in our community in our personal lives
• 33:15
  and also find the meaning that brings hope
• 33:19
  it's a good question
• 33:20
  I think that we have to remember that grief is a
• 33:23
  even when we grieve in community
• 33:25
  it's a very personal journey
• 33:26
  and we're gonna go about it differently
• 33:28
  we need to honor that
• 33:29
  and it's not something we can do for one another
• 33:32
  but I will say collective grief and collective hope
• 33:36
  these are like modern labels for ancient practices
• 33:40
  collective grief particularly in our western culture
• 33:43
  we're very individual to the point of
• 33:46
  kind of an unhealthy independence and isolation
• 33:49
  but other cultures community is central
• 33:52
  and there's a healthy interdependence that's fostered
• 33:56
  we shy away from dependence
• 33:57
  so we lean towards independence
• 33:59
  but there's this sweet spot in the middle
• 34:01
  where there's this interdependence
• 34:03
  I want to clarify grief is an emotion
• 34:06
  mourning is the external expression of grief
• 34:09
  so there's rituals in different cultures
• 34:12
  and faith systems where that is
• 34:15
  the grief is expressed
• 34:16
  you can learn a lot from healthy ways
• 34:20
  that other cultures or faith systems practice this
• 34:24
  but the one that most often stands out to me is
• 34:27
  in Judaism
• 34:28
  they sit Shiva for seven days of mourning
• 34:32
  in the period right after a family member is buried
• 34:36
  and this allows them this
• 34:38
  the whole all the family members are together
• 34:40
  and this allows them to begin the healing process
• 34:43
  together
• 34:43
  they stay home and the community gathers around them
• 34:46
  and does the food and does
• 34:48
  you know all the caring things
• 34:50
  my friend Deb Mcadams who's an Omie
• 34:52
  we were talking about this last week
• 34:54
  she says yeah
• 34:54
  you're kind of stuck with them
• 34:55
  even if you don't want it
• 34:57
  you're stuck with them
• 34:58
  but there's a healthiness in that
• 35:00
  kind of that blanket wrapping around you
• 35:02
  of support
• 35:03
  and then in Judaism even after that seven days
• 35:05
  there's a year of practices
• 35:09
  that are part of their morning
• 35:10
  so it's an unhurried grief
• 35:12
  you know and we need to honor that
• 35:14
  like just because somebody got bad news six months ago
• 35:17
  does not mean they're over it
• 35:19
  they you know
• 35:19
  they are in the thick of it
• 35:21
  and they might be revisiting that bad news every day
• 35:23
  particularly if it's like Mets
• 35:24
  they're just you know
• 35:26
  every day
• 35:26
  they're facing the effects of the trial they're on
• 35:28
  or something like that
• 35:29
  in the Hispanic cultures memorials are built
• 35:32
  in the Indian and Middle Eastern cultures
• 35:35
  we I see this on TV
• 35:37
  they're in these mourning clothes
• 35:38
  and there's wailing in the streets
• 35:40
  this is a mourning practice
• 35:42
  it's not a go hide behind a wall and grieve alone
• 35:46
  it's a very public thing and it's foreign to us
• 35:49
  at least it's foreign to me in my background
• 35:52
  but
• 35:52
  there's a sense that
• 35:53
  the whole community is joined together there
• 35:56
  and our culture we have Celebration of life services
• 35:58
  so when Gwyn died she was buried um
• 36:02
  she died on a Sunday and she was buried two days later
• 36:05
  they live in the country
• 36:06
  and they have a family plot at the back of their farm
• 36:10
  they created Gwyn's garden
• 36:11
  and so she was buried there at the family plot
• 36:14
  and there was just a maybe
• 36:15
  like 50 of us gathered but six weeks later about
• 36:20
  was when um
• 36:21
  they did a Celebration of life service
• 36:23
  and then all the communities came
• 36:25
  the church community and the homeschool community and
• 36:28
  you know people from their work places
• 36:30
  and people they knew through sports
• 36:32
  and all these things the whole community gathered
• 36:35
  and it's a time to memorialize that person
• 36:37
  and to share stories and
• 36:39
  you know just there
• 36:40
  even in the sharing of memories
• 36:42
  there's comfort in the sharing of stories
• 36:45
  there's joy and laughter
• 36:46
  so um
• 36:47
  and then even after that six months later in November
• 36:51
  in the Anglican tradition
• 36:52
  there's what's called All Saints Day
• 36:54
  a lot of liturgical traditions have that
• 36:56
  and they honored Gwyn then
• 37:00
  by inviting her homeschool community come and plant um
• 37:04
  daffodil bulbs all around the
• 37:07
  outside the perimeter of Gwyn's garden
• 37:09
  and those come up every year in the spring
• 37:12
  and it was something tangible for those children to do
• 37:16
  as a community they love
• 37:18
  Gwyn she was an important part of their community
• 37:20
  and it was a way they could do something tangible
• 37:22
  to express their loss
• 37:24
  but all these practices
• 37:27
  regardless of the culture or faith system
• 37:29
  they all reflect this
• 37:30
  a principle in Christian teaching
• 37:32
  which is bear one another's burdens
• 37:33
  in the New Testament
• 37:34
  and the Greek word for burden there
• 37:37
  this talks about a weight that is too heavy
• 37:40
  too extreme to carry alone
• 37:42
  it's not you know
• 37:44
  go make your kids bed for them no
• 37:45
  they can do that that's not a burden
• 37:47
  that's just their job
• 37:48
  but burdens are things that are just too heavy
• 37:51
  to carry alone
• 37:52
  and in all of these practices
• 37:54
  we see that presence is a gift
• 37:56
  the shared emotions help shoulder the pain
• 37:59
  and we infuse one another with support
• 38:01
  and comfort and encouragement
• 38:03
  Carol thank you so much
• 38:04
  this has been absolutely amazing
• 38:06
  to just have this conversation
• 38:07
  and I think to just shed some light on what
• 38:11
  on the one hand can
• 38:12
  can sometimes feel you know
• 38:14
  like that collective grief
• 38:15
  you know the triggers that come up when we see a loss
• 38:17
  in our community
• 38:18
  of somebody who had ocular melanoma and passed away
• 38:21
  when we feel that kind of triggering feeling
• 38:24
  come back up I think it's I
• 38:26
  I hope that this is helpful
• 38:27
  to those of you guys listening and
• 38:29
  and helping you recognize that okay yes
• 38:31
  you know
• 38:32
  we can't avoid feeling that that is gonna come up
• 38:34
  especially you know
• 38:35
  if you're a member of the community
• 38:37
  and you are involved
• 38:38
  in a way that you find that community
• 38:40
  but I hope that
• 38:42
  what we can demonstrate here is that the net positive
• 38:44
  I guess and the net
• 38:46
  help that comes from also having the community
• 38:49
  to carry hope and to create hope is so worth it
• 38:54
  it's so worth
• 38:54
  the vulnerability of connecting with each other
• 38:57
  so what is a message of hope
• 38:58
  or reflection
• 38:59
  that you really hope our listeners would carry forward
• 39:02
  it's not lost on me
• 39:03
  that Grief Awareness Day is in December
• 39:05
  the holidays can be very very hard days
• 39:08
  my highest client load is
• 39:10
  between Thanksgiving and Christmas
• 39:11
  it's
• 39:12
  it's an emotionally laden season for lots of reasons
• 39:16
  and there's that traditional Christmas Carol
• 39:18
  and the chorus is tidings of comfort and joy
• 39:21
  comfort and joy
• 39:22
  those things those two things are psychological needs
• 39:25
  and are also spiritual needs
• 39:27
  it's hard for people to relate to all the holiday cheer
• 39:30
  and the you know
• 39:31
  the ringing bells and all that kind of stuff
• 39:32
  when inside they're just cratering
• 39:34
  and they're aching
• 39:35
  because they've had a difficult year
• 39:38
  or a variety of losses
• 39:39
  and these difficulties create psychological hurdles
• 39:43
  and many wrestle with spiritual
• 39:45
  questions in that season also
• 39:46
  and we have to remember
• 39:47
  the APA honors that we are spiritual beings
• 39:50
  that I was glad that the APA finally acknowledged that
• 39:53
  and we have to honor that piece of ourselves also
• 39:57
  when we can honor and accept one another
• 39:59
  at those points of need
• 40:01
  then we contribute to each other's healing
• 40:03
  as far as a a message of hope or reflection
• 40:07
  I guess I would say two things
• 40:09
  first of all
• 40:10
  grieve well
• 40:11
  give yourself permission to grieve
• 40:13
  it's okay to grieve um
• 40:15
  it doesn't mean you're not thankful for things
• 40:17
  at Thanksgiving and it doesn't mean that you're
• 40:20
  you're not interested in Christmas necessarily
• 40:23
  it just means that
• 40:24
  you're dealing with really hard things
• 40:26
  and honor those feelings and grieve well
• 40:30
  in community at our
• 40:31
  at our church we actually have a service once a year
• 40:34
  so it'll be next weekend
• 40:36
  called comfort and joy and
• 40:38
  it is for people who have gone through
• 40:39
  very difficult years and
• 40:41
  that they want to create a space where that is honored
• 40:44
  and they recognize that all this
• 40:46
  you know
• 40:47
  raw raw about Christmas
• 40:48
  might not be driving all this Christmas Joy
• 40:51
  might not be what somebody's experiencing
• 40:54
  um and so it's a place to honor that and have
• 40:56
  let them people express that
• 40:58
  secondly I have to add
• 41:01
  that hope isn't only as sure as the object of our hope
• 41:04
  if my
• 41:05
  the object of my hope is this brass lamp sitting on my
• 41:07
  desk I am in dire straits
• 41:09
  cause that brass lamp isn't gonna help me at all
• 41:12
  so we need to pay attention to where our hope is
• 41:15
  in the Om community I think most
• 41:18
  if not all of us have a lot of hope in science
• 41:21
  because there are tremendous advances
• 41:24
  being made by researchers
• 41:25
  when I was diagnosed my doctor said
• 41:27
  if you have to have OM this is the best time to have it
• 41:30
  because there's so much happening
• 41:31
  and that was seven years ago
• 41:33
  there is so much that has happened
• 41:34
  in the last seven years and so
• 41:36
  you know that's a great thing and
• 41:38
  and it's okay to hope to hope for those outcomes
• 41:42
  we're cheering those researchers on right
• 41:44
  and we can't be thankful enough
• 41:46
  and honestly practicing gratitude for that
• 41:48
  that is also part of the pathway to
• 41:51
  back to hope and joy
• 41:53
  but I also know that science is limited
• 41:55
  science is not gonna show up and offer me comfort
• 41:57
  or help or strength on my difficult days
• 42:00
  it gives me something in my cognitive brain
• 42:03
  but my emotional brain needs something different
• 42:05
  for me as a Christian my ultimate hope is rooted in my
• 42:10
  the bedrock of my Christian faith
• 42:12
  I don't think it's a surprise anybody
• 42:13
  I'm fairly open about that on the pages
• 42:15
  I don't get super preachy
• 42:17
  but it's it's there
• 42:18
  it's not lost on me
• 42:20
  that Grief Awareness Day is in December
• 42:23
  which is the season of advent
• 42:24
  in the Christian calendar
• 42:25
  and advent celebrates the coming of Christ
• 42:28
  which who was the light of the world
• 42:30
  but Fleming Rutledge who's an author
• 42:32
  she wrote a big fat book on advent
• 42:35
  she says advent begins in the dark
• 42:38
  just let that sink in advent begins in the dark
• 42:41
  when everything seems hopeless
• 42:44
  that's why in the Christian tradition
• 42:46
  we're looking for that light
• 42:47
  because everything seems hopeless apart from it
• 42:50
  you know in my belief system
• 42:52
  in my relationship with god
• 42:54
  he's not left us helpless or hopeless
• 42:56
  he's a rescuing redeeming god
• 42:58
  and he draws near to the broken hearted
• 43:00
  he stoops low to listen to our cries
• 43:02
  he has compassion as a compassion on us
• 43:05
  as a loving father has compassion on his children
• 43:08
  um one of the best known psalms that crosses a lot of
• 43:12
  um belief systems is Psalm 23
• 43:15
  it's read at a lot of memorial services
• 43:17
  but he's a good Shepherd in that psalm
• 43:19
  and he walks with us
• 43:20
  in the valley of the shadow of death
• 43:22
  and I'm telling you when we're diagnosed
• 43:24
  we've just stepped
• 43:25
  into the valley of the shadow of death right
• 43:27
  we might not have met yet
• 43:29
  but we've stepped there and to know that he is a good
• 43:32
  good Shepherd who not just walks there with it
• 43:35
  but he scoops us up and puts us on his shoulders
• 43:37
  and carries us in those really hard places
• 43:39
  that are scary and treacherous and lonely
• 43:42
  um that is good news
• 43:44
  that is really good news so for me
• 43:46
  hope that hope steadies me
• 43:49
  it's it's
• 43:50
  isn't an unreliable outcome related to OM
• 43:53
  it's really in the person of Jesus Christ
• 43:55
  who brings light to my dark places
• 43:58
  it's so anchoring
• 43:59
  to know that god meets us at our point of need
• 44:02
  he strengthens us encourages us
• 44:05
  sometimes it's through another person
• 44:06
  sometimes it's through a community
• 44:08
  sometimes it's through someone we don't even know
• 44:11
  but he he comes to us with this accepting love
• 44:14
  and then we get to share that with one another
• 44:16
  and that goes back to the collective grief
• 44:18
  and the collective hope
• 44:20
  these things are about living in community
• 44:22
  and expressing that kind of loving acceptance
• 44:25
  to one another wherever we're at
• 44:27
  whatever our point of need is
• 44:28
  also
• 44:30
  there's that Christian principle
• 44:31
  I think it says rejoice with those who rejoice
• 44:34
  and weep with those who weep
• 44:36
  that's what collective hope is
• 44:37
  and collective grief is and that compassion and comfort
• 44:42
  that we offer other people
• 44:44
  also strengthens and heals all of us
• 44:47
  it contributes to that courage and resilience
• 44:50
  that we all need so those are my parting thoughts
• 44:53
  oh I love it
• 44:54
  Carol thank you so
• 44:55
  so much for taking the time out of your day
• 44:57
  practicing with clients
• 44:58
  and with the time with your family
• 45:00
  to be vulnerable and honest with
• 45:01
  not only your personal story
• 45:03
  but just with all of these insights that you have
• 45:05
  about this idea of collective hope
• 45:07
  and collective grief
• 45:07
  and how important it is to hold space for both of them
• 45:10
  I truly hope that this episode
• 45:12
  and that the message that Carol had to share with us
• 45:15
  is something that impacts you
• 45:16
  and if it is something that impacts you
• 45:18
  and you're listening today
• 45:18
  please make sure to share this
• 45:20
  I mean I absolutely love and adore that you shared
• 45:23
  the impact that your faith
• 45:24
  like your religious faith and your spirituality
• 45:26
  has on your journey with ocular melanoma
• 45:28
  I think that is a beautiful thing to share
• 45:30
  and if you don't have
• 45:31
  and hold the same beliefs as Carol
• 45:33
  I know like
• 45:33
  I don't but
• 45:34
  I don't find it any less helpful or comforting
• 45:37
  to listen to somebody else
• 45:38
  kind of express the ways that they find meaning
• 45:40
  and make meaning
• 45:41
  but if you're listening
• 45:42
  and you've found some purpose in
• 45:44
  in this and you found some extra layers of meaning
• 45:46
  that have just
• 45:47
  maybe helped you see things in a new way
• 45:48
  or just helped you kind of
• 45:50
  pick yourself up on a dark day
• 45:52
  please share this with somebody else
• 45:53
  tag them in the comments
• 45:54
  I would love if you guys just
• 45:56
  flood the comments with some quotes um
• 45:58
  that give you hope it can be quotes from the scriptures
• 46:01
  it could be quotes from you know
• 46:02
  from authors that you find helpful
• 46:04
  it could be your own made up quote
• 46:05
  I make up my own quotes all the time
• 46:06
  it's great um
• 46:08
  I did say that but you
• 46:10
  but you guys like it is let's
• 46:12
  let's have some space right
• 46:13
  let's hold some space for each other collectively
• 46:15
  and let's just
• 46:16
  light up the comments
• 46:17
  with a little bit of extra hope this season
• 46:19
  I am so grateful you invited me to do this
• 46:21
  I just felt so honored that day you reached out to me
• 46:23
  so thank you for the opportunity
• 46:25
  and if anybody just has anything
• 46:29
  you know
• 46:29
  they want to comment to me directly about something
• 46:31
  they're welcome to reach out to me
• 46:32
  in a private message on Facebook
• 46:34
  so I'd welcome any of it so thank you
• 46:36
  well what we'll do in the description
• 46:38
  as well is we will link um
• 46:39
  as many of the book references as we can come up with
• 46:42
  from some of the books that you mentioned
• 46:43
  and we'll also link
• 46:45
  link to Carol's Facebook page if you want to friend her
• 46:47
  and just send a huge shout out to our sponsors as well
• 46:51
  who make having these kinds of conversations possible
• 46:54
  we have multiple sponsors to support the I believe
• 46:56
  podcast now
• 46:57
  and our YouTube channel
• 46:57
  and so just a huge thanks for Castle Biosciences
• 47:01
  Immunocore Delcath
• 47:02
  and aura for just holding space for us
• 47:04
  as patients to have these conversations
• 47:06
  and to empower each other and educate each other
• 47:09
  not just about medical stuff
• 47:11
  but about kind of
• 47:11
  the emotional journey of navigating ocular melanoma
• 47:14
  so we look forward to seeing you guys next time
• 47:16
  and hope you have a wonderful day thank you
• 17:07
  and she called it drippy
• 17:08
  the story of the sad rain cloud
• 17:10
  and her purpose in writing it