Latest / The Eye Believe Podcast / My 15 Years | Episode 8: Grief, Survivor’s Guilt & Finding Joy Again

Transcript

My 15 Years | Episode 8: Grief, Survivor’s Guilt & Finding Joy Again · The Eye Believe Podcast

• 0:05
  hey everyone
• 0:05
  welcome back to Melody's 15 years
• 0:08
  we are on episode 8 and we are talking about grief
• 0:11
  so this might be a little bit of a heavy episode
• 0:13
  we're gonna talk about the losses that people don't see
• 0:16
  which is the loss of certainty
• 0:18
  can be relationships identity
• 0:20
  a life that you thought you'd have
• 0:23
  a lot of parts of this one
• 0:25
  and some survivors guilt so melody
• 0:28
  this is a very heavy topic
• 0:29
  where would you like to start on this one
• 0:32
  um
• 0:33
  loss of yourself probably is the first one
• 0:37
  because everything spirals from there
• 0:39
  I feel I feel that when you have a major
• 0:44
  major event in your life no matter what that event is
• 0:47
  it it changes you
• 0:50
  but you don't realize how it changes you and
• 0:55
  as you are starting to live this changed life
• 0:58
  you can't help but look back and be um
• 1:02
  this is who I used to be I'm not that person anymore
• 1:05
  you know I used to be
• 1:06
  whatever that is I used to be very strong
• 1:08
  very assertive very confident
• 1:11
  um very competent
• 1:14
  and now I am not those things um
• 1:18
  because now I am
• 1:21
  I uh
• 1:22
  maybe I don't feel whole as I used to be
• 1:25
  I I
• 1:26
  the a ocular melanoma diagnosis changed me
• 1:30
  and kind of pushed my life out of
• 1:33
  center of where I thought I was going
• 1:36
  so the person who I thought I was
• 1:39
  was not that person any longer
• 1:41
  I had to learn who I was now
• 1:45
  and and everybody's different with this
• 1:47
  but for me it was when I got the diagnosis
• 1:51
  and I realized this is my eye
• 1:53
  and this is my sight and then um
• 1:58
  it's amazing how insecure you feel
• 2:01
  when you lose one of your senses
• 2:02
  whether it's hearing vision
• 2:05
  whatever when you lose a sense that you
• 2:08
  that you relied on your whole life
• 2:10
  it it's difficult
• 2:11
  and it and some people can handle it better than others
• 2:14
  I did not handle it well
• 2:16
  and I know I did not handle it well
• 2:19
  because I asked for help and I did not get help
• 2:21
  and then I would get resentful
• 2:23
  when people didn't understand why I needed help
• 2:26
  because I looked good I looked normal
• 2:28
  I well
• 2:29
  you just had your eye done
• 2:30
  you know but somebody on the outside
• 2:33
  looking in doesn't see how you see
• 2:35
  and they don't they don't understand the uncertainties
• 2:38
  walking into a room or driving a car
• 2:42
  these are all things that enter into it
• 2:44
  and it changes who you are
• 2:47
  and so then you you grieve the person you used to be
• 2:50
  because I used to not be this person
• 2:53
  how did I get here how did I get so insecure
• 2:56
  how did I get so cautious
• 2:58
  not that I'm super cautious now
• 2:59
  but I'm a lot more cautious than I was
• 3:01
  um
• 3:03
  how did how did this
• 3:04
  how did I get here but this is who I am now
• 3:07
  because of what I've gone through and I have to learn
• 3:13
  this is just where I am now and
• 3:15
  and I had to stop looking back at this idea
• 3:18
  of the person I thought I was gonna be
• 3:21
  that makes sense
• 3:22
  that's a lot to grapple with and tell everyone
• 3:27
  if they don't know what do you see
• 3:31
  um I have um
• 3:35
  showing my age Twilight Zone static
• 3:38
  in a great big gray ball over most of my vision
• 3:42
  with a sliver of of
• 3:44
  of vision very distorted
• 3:46
  blurry vision not enough that it's really usable
• 3:50
  um sometimes something will flash by really fast
• 3:53
  and I'll see it and it'll startle me
• 3:55
  but mostly
• 3:56
  I just have this ball in my central vision that just
• 4:00
  statics all the time some days
• 4:03
  some days it statics worse than others
• 4:05
  some days it's calm
• 4:06
  but the days when it's really bugging me
• 4:08
  it's just that static is really active
• 4:11
  and it's just the my eye
• 4:15
  you know my brain's trying to look out of that eye
• 4:19
  my brain never went to the right to my right eye
• 4:22
  it keeps forcing to the left eye
• 4:25
  when I close my eyes I look out of my left eye
• 4:29
  um like
• 4:29
  you know when you're trying to imagine something
• 4:31
  it's all left side so when my eye is
• 4:35
  is very active it messes up what my right eye sees
• 4:39
  because my brain wants to look and see
• 4:41
  what's going on over here
• 4:42
  with all this staticky stuff
• 4:45
  and then my brain fills in what it thinks I should see
• 4:49
  that is probably not it's not
• 4:51
  it's usually not right which I
• 4:54
  you know we've talked about it before
• 4:55
  but I do a lot of typos because I don't see them
• 4:59
  it looks normal to me because my brain says up yep
• 5:01
  that's what you typed but that wasn't what I typed
• 5:04
  I I tend to mix up letters and they look
• 5:06
  it looks perfectly fine and people don't understand
• 5:09
  well how come you can't spell well
• 5:13
  I thought I spelled fine but
• 5:15
  you know you
• 5:16
  you just
• 5:18
  it it
• 5:19
  I can't so um
• 5:21
  if you get an email from me that is gibberish
• 5:23
  then please disregard and say um
• 5:25
  send me one back say
• 5:26
  what did you mean hahaha
• 5:29
  and then I'll get it back and be like
• 5:31
  oh my god what did I do
• 5:33
  yeah so it's
• 5:35
  but these are these are the
• 5:37
  this was never me I was never that person
• 5:39
  I was the person that was very much a business person
• 5:41
  and you didn't send anything out until it was perfect
• 5:44
  and all your Is were dotted
• 5:46
  and your Ts were crossed
• 5:47
  and it
• 5:47
  you read it and read it and read it and it was good
• 5:50
  and then you hit send and then you sat there
• 5:52
  and waited for the good reply to come back
• 5:55
  not the reply of did you mean to say that
• 5:59
  but so it kind of shakes your confidence a little bit
• 6:01
  because
• 6:02
  you're just not doing the job that you used to do
• 6:06
  but it's okay you know
• 6:08
  it's okay for I ask people to give me Grace
• 6:12
  yeah and that
• 6:15
  the loss of yourself and your identity
• 6:17
  and seeing yourself in a different light
• 6:20
  that maybe isn't what you wanted to see
• 6:23
  those are all very big things
• 6:26
  mm hmm I used to love to cook
• 6:28
  I don't cook anymore cooking is hard
• 6:30
  it's hard me
• 6:31
  trying to measure trying to pour
• 6:34
  trying to yeah
• 6:36
  well I did it at your house one time
• 6:37
  I was making pecan bars and you're like
• 6:39
  oh my god
• 6:39
  you're overflowing the pan
• 6:41
  I'm like I don't
• 6:41
  I don't see that you know
• 6:43
  and so it's just it's not good
• 6:46
  me cooking I have to cook in very controlled
• 6:49
  very specific things or
• 6:53
  go ahead I
• 6:54
  I have a rule at my house when she comes over
• 6:57
  and what is your rule
• 6:59
  I'm not allowed to touch the knives
• 7:02
  that's the rule she is not allowed to touch the knives
• 7:04
  I will cut it for her why
• 7:06
  because we've we've gone and gotten stitches before
• 7:09
  and we're not doing it again
• 7:12
  yeah because I can't
• 7:14
  depth perception is bad and
• 7:17
  and me and a sharp knife is just not a good thing so
• 7:22
  but
• 7:24
  you know the
• 7:25
  and this is not this is a hard thing for a lot of
• 7:28
  of people is when you've
• 7:31
  been the head of the household for so long
• 7:35
  and you're you're the person
• 7:37
  and you have to step back and say
• 7:39
  I can't do this you need to do that
• 7:41
  you know so at your house
• 7:43
  I don't cook you cook and
• 7:45
  and there's still a part of me that's like
• 7:47
  this isn't how it was supposed to be
• 7:49
  you know everybody was supposed to come to my house
• 7:52
  and I was supposed to host the dinners
• 7:53
  and we I was supposed to cook
• 7:55
  but nobody wants that anymore
• 7:57
  no it's not good
• 7:59
  we just don't want you to cut yourself
• 8:01
  well not only that
• 8:02
  but the but my cooking ability has gone way down
• 8:07
  because I make mistakes I misread I
• 8:10
  I think it's a quarter of a cup
• 8:12
  I just put in a half a cup
• 8:13
  and now my whole recipe is ruined and
• 8:15
  and it's frustrating
• 8:16
  because you wanna do such a good job
• 8:19
  and you wanna be that person you used to be
• 8:21
  and it's like I have made this cake so many times
• 8:24
  I can do it with my eyes closed
• 8:25
  but you every time I do it
• 8:27
  I mess it up because I don't read
• 8:30
  I can't see well enough
• 8:32
  and my brain doesn't register well enough to know
• 8:37
  that's a half a cup not a quarter cup girl
• 8:39
  you know get it together
• 8:40
  and then I get mad at myself
• 8:41
  and then I beat myself up and then I feel
• 8:45
  less than I feel like I'm a failure
• 8:47
  and I go through all of that
• 8:48
  and so the best thing for me to do is just not
• 8:52
  I just don't and
• 8:54
  and it it's not where I thought I would be
• 8:56
  at this point in my life but it is where I'm at
• 8:58
  so you sometimes you just have to accept it and think
• 9:01
  okay this is
• 9:02
  there's a reason why I'm here
• 9:04
  this is why I'm here and that's okay
• 9:08
  yeah
• 9:09
  because when you're doing something and the joy is gone
• 9:12
  then you don't need to keep doing it
• 9:16
  and that is one of the one of the griefs is
• 9:19
  is when you're going through stuff
• 9:21
  that you used to always enjoy
• 9:22
  and now you can't enjoy it anymore
• 9:24
  it is hard I don't do
• 9:25
  I was never a big crafty person
• 9:27
  but I don't do any crafts anymore because I just
• 9:30
  I can't between
• 9:31
  well between
• 9:32
  I have double edge I've got my um
• 9:35
  my eye
• 9:35
  but I've also got really bad arthritis in my hands
• 9:37
  so I there's a lot of stuff
• 9:39
  I just don't have the dexterity to do anymore
• 9:42
  um and
• 9:43
  and you think when you're
• 9:46
  I think when you're younger
• 9:47
  and you're going through life
• 9:48
  you think this is what I'm gonna be when I hit 60
• 9:51
  70 years old and then as you start heading there
• 9:54
  and you're not that person it's
• 9:56
  it's a there's a big loss there you
• 9:58
  you grieve that person that
• 10:00
  you made up in your head that you were gonna be
• 10:02
  and you're just not that person
• 10:04
  but maybe that's not the person you were meant to be
• 10:07
  that's that's how I kind of go through it
• 10:09
  I went through this for a reason
• 10:11
  and he brought me here there's a reason why I'm here
• 10:13
  there's a reason why I can't do these things and
• 10:16
  and there's a reason why I found new things to do
• 10:21
  I think that's a very healthy perspective
• 10:24
  that's a great way to look at it
• 10:25
  yeah it doesn't happen overnight though
• 10:27
  but but grieving the loss of the life that you had
• 10:30
  is that you thought you were gonna have
• 10:33
  is hard you know
• 10:33
  I thought I would be still married to one person
• 10:36
  I thought
• 10:37
  I thought that we were gonna have a beautiful house
• 10:39
  and we were gonna you know
• 10:40
  we were going to be doing all this great stuff together
• 10:42
  and none of that happened
• 10:44
  but I'm in a much better place in my life today
• 10:47
  I like where I'm at so even though I had to lose a lot
• 10:50
  I gained I
• 10:52
  I feel I gained even more I
• 10:54
  I just had to let go of the stuff
• 10:57
  that I thought I had lost
• 10:59
  because it really it really doesn't matter
• 11:01
  does it matter that I don't cook anymore no
• 11:04
  no
• 11:05
  very very good points
• 11:07
  and we've talked about relationships before
• 11:10
  loss of relationships obviously
• 11:12
  you've lost a marriage
• 11:14
  any other thoughts on relationships
• 11:16
  oh yeah
• 11:17
  you lose a lot of friends
• 11:19
  a lot of friends I used to have a lot of friends
• 11:21
  I have two friends outside of Ocular Melanoma community
• 11:24
  two
• 11:25
  and I'm 63 years old
• 11:27
  I have one that was been my friend since we were 10
• 11:30
  um my other friend is um
• 11:33
  Lucy who was a neighbor
• 11:35
  um and we're still friends
• 11:38
  but most of my other friends
• 11:41
  ocular melanoma scared them and they retreated
• 11:44
  they didn't wanna see it on my Facebook page
• 11:46
  they didn't wanna hear about it
• 11:47
  they don't engage with me
• 11:49
  they uh
• 11:51
  we might still be friends on Facebook
• 11:52
  but we never talk and they don't check in on me
• 11:55
  and because
• 11:56
  it's a scary thing
• 11:58
  when you have something people don't understand
• 12:01
  and one of the lessons that I've Learned now
• 12:04
  that I wish I knew then was
• 12:06
  you just can't talk about it all the time to people
• 12:08
  people don't want to listen to it
• 12:11
  people don't want to hear about it
• 12:13
  not because they don't care about you
• 12:15
  but because it doesn't affect their lives
• 12:17
  and most people are selfish
• 12:19
  and that's that's it
• 12:21
  they wanna talk about things that they're interested in
• 12:23
  they wanna talk about um
• 12:25
  mutual things that you both can share
• 12:28
  they don't wanna be your sounding board
• 12:29
  about your ocular melanoma
• 12:31
  they don't wanna be the person that you rely on
• 12:33
  to take you places to do things for you
• 12:36
  that's not a friendship
• 12:38
  and I think in the ocular melanoma community
• 12:41
  and probably cancer community in general
• 12:43
  is we rely on our friends to do a lot of things for us
• 12:46
  that we would never ask them to do if we were healthy
• 12:49
  and so then your friendship changes
• 12:53
  and it becomes a caretaker relationship
• 12:55
  and they didn't sign up to be your caretaker
• 12:58
  they signed up to be your friend
• 12:59
  and so I think that it's healthy
• 13:01
  for people in the ocular melanoma community
• 13:04
  to stay to
• 13:05
  to keep those conversations out of other relationships
• 13:10
  you know we talked last episode just a little bit
• 13:12
  about relying too much on your family and your friends
• 13:17
  where they then are
• 13:19
  you exhaust them being their caretaker
• 13:22
  you ask too much of them when you're asking your spouse
• 13:25
  to take you every place you go
• 13:28
  do you realize the amount of weight
• 13:31
  that you just put on your spouse
• 13:33
  or your children or your friend
• 13:35
  because they didn't sign up for that
• 13:37
  and I think we get kind of
• 13:40
  a little caught up in our own dilemma
• 13:44
  you know this is our issue
• 13:46
  we need to figure out our own issue
• 13:48
  without asking everybody else to figure it out for us
• 13:51
  and I I do see that
• 13:53
  and I know I did that um
• 13:55
  I always wanted to talk about it
• 13:57
  and you know
• 13:58
  I was either talking about my ocular melanoma
• 14:00
  or I was talking about my marriage breaking up
• 14:02
  or I was talking about my ex husband and
• 14:03
  oh my god what a jerk he was um
• 14:07
  and he was going around talking about everybody to me
• 14:09
  about I can't handle her ocular melanoma
• 14:11
  and she's just being a jerk
• 14:12
  so you know
• 14:13
  there it it
• 14:13
  it causes a lot of issues when you
• 14:16
  when you keep that so forefront in your life
• 14:19
  and so you will lose you will lose friendships
• 14:22
  you'll have some friends that will stay
• 14:24
  but most most friends won't because they just
• 14:27
  it's too heavy they don't want it
• 14:30
  so you you do lose a lot of friends that way
• 14:33
  they just don't want to hear about it all the time
• 14:36
  yeah
• 14:39
  and I know I know
• 14:41
  my family got sick of hearing about it all the time
• 14:44
  you know well
• 14:45
  you're in a little bit of a different position too
• 14:47
  with A Cure In Sight
• 14:50
  because not only is it your cancer
• 14:52
  your condition it's now your full time job
• 14:55
  and it's more than a job it's a
• 14:58
  a passion project
• 14:59
  that you are helping so many people with
• 15:02
  and so you know
• 15:03
  you do share all of A Cure In Sights posts
• 15:05
  and you share the podcast
• 15:06
  and so if someone does follow your Facebook page
• 15:09
  they're gonna see it a lot
• 15:11
  but you have a mission
• 15:12
  a higher purpose that you are pursuing
• 15:16
  and you know
• 15:17
  you're gonna lose some friends along the way
• 15:19
  but I think the greater good that you're achieving
• 15:22
  because of that might be worth it
• 15:24
  only you can say I am going to tell you that
• 15:27
  the best friends I have ever made are my omie friends
• 15:30
  they are I have great friendships with them
• 15:33
  and we've been friends for many years and um
• 15:37
  we might not talk every day
• 15:38
  but they are my great friends
• 15:41
  and I I wouldn't give them up for anything
• 15:44
  you know and we have um
• 15:46
  we have great conversations
• 15:47
  not about ocular melanoma
• 15:49
  but we met because of ocular melanoma
• 15:52
  so I have I have taken the um
• 15:55
  approach that I didn't need those
• 15:59
  I didn't need those friends any longer
• 16:02
  we we had our time together
• 16:04
  and it's not our time anymore
• 16:07
  I'm not resentful to them
• 16:09
  that they don't check in on me
• 16:10
  I'm not resentful that they don't want to
• 16:11
  invite me to their parties
• 16:13
  we had a good time
• 16:15
  I'm so glad they were in my life when they were
• 16:17
  but now I have different friends and
• 16:19
  and it's your life kind of evolves
• 16:22
  and it and it doesn't stay the same
• 16:24
  and it isn't the life that you always imagine
• 16:27
  because maybe your what you were imagining
• 16:29
  was just not even realistic to start with
• 16:32
  but I have great friends now
• 16:34
  and I've also changed on my ocular melanoma
• 16:38
  when I talk about it's not
• 16:39
  I'm not talking about my own ocular melanoma
• 16:42
  like I used to when I was first diagnosed
• 16:44
  um people ask me
• 16:46
  how can you deal with ocular melanoma all day
• 16:48
  every day well
• 16:48
  it's not mine I'm dealing with everyone else's
• 16:51
  I'm not dealing with mine
• 16:52
  so I don't think about mine necessarily
• 16:55
  I'm not doing it because
• 16:57
  I'm not funding research to find a cure for myself
• 17:00
  I'm not developing projects that suit me
• 17:05
  because it's not about me and my ocular melanoma
• 17:08
  it's about a community of ocular melanoma
• 17:10
  so I think it's a little easier for people to see
• 17:14
  to deal with ocular melanoma and me now
• 17:16
  because now it's my job
• 17:17
  just like any other job would be it
• 17:21
  but there in the beginning
• 17:23
  I was pretty much a whiner
• 17:26
  I did I wind a lot
• 17:29
  and you know what there is no judgment here
• 17:32
  so if you have to do some whining to get through it
• 17:35
  before you find your your strength and your tools
• 17:39
  that's okay
• 17:41
  and I the reason I say that I was a whiner
• 17:43
  is not to pass judgment even on myself
• 17:45
  but I think we all go through it
• 17:47
  we all whine about it you know
• 17:49
  you have to fade go through phases
• 17:51
  and each phase takes you to another phase
• 17:54
  takes you to another phase
• 17:55
  and takes you to where you're supposed to be
• 17:57
  and you know
• 17:59
  whining is definitely a part of it
• 18:01
  but don't get stuck there
• 18:02
  I guess what I'm trying to say
• 18:04
  don't get stuck you
• 18:05
  you know it's okay to grieve the life that you had
• 18:07
  it's okay to grieve the loss of your eye
• 18:08
  or your eyesight but don't live there
• 18:12
  you know that that's
• 18:13
  I guess the biggest message is
• 18:14
  you can't live in that grief
• 18:15
  you have to
• 18:17
  you have to figure out a way
• 18:18
  through therapy or whatever
• 18:19
  deal with the grief of it and then move on
• 18:22
  because you don't want to get stuck there
• 18:24
  you'll just be miserable yeah
• 18:27
  and I don't know if this is helpful for anyone
• 18:29
  but they say an emotion only lasts 30 seconds
• 18:32
  and so when the emotion comes in
• 18:34
  you acknowledge it you don't suppress it
• 18:36
  you say okay
• 18:37
  I feel it I feel sad
• 18:39
  why do I feel sad explore it for a minute
• 18:41
  and then you're done you don't
• 18:42
  we don't wallow you don't stay in it
• 18:44
  it's 30 seconds and then it's gone
• 18:46
  so if that's helpful to anyone
• 18:48
  I have just heard this
• 18:50
  this is not something I've made up
• 18:51
  but I just will pass it along if it helps
• 18:55
  wisdom wisdom comes in little bits and pieces
• 18:57
  nobody's gonna just dump it in your lap and say
• 19:00
  here's the answer to all your problems
• 19:02
  if you do this you will be fine
• 19:05
  you have to take in little
• 19:06
  you're gonna get little tidbits here and there
• 19:09
  and you have to take what works for you
• 19:11
  and leave the rest what I'm saying
• 19:13
  it's not gonna fit everybody
• 19:15
  take what works for you take part of it
• 19:17
  whatever you want and leave the rest
• 19:19
  because this is my journey
• 19:21
  and this is what worked for me
• 19:22
  but it doesn't work for everybody
• 19:24
  but I will say one thing to caution everybody
• 19:26
  is be careful of the of the pitfalls
• 19:30
  be careful of getting too caught up in your own grief
• 19:33
  be careful of putting too much of your own journey
• 19:35
  onto other people because it's asking too much of them
• 19:42
  that makes sense
• 19:43
  next let's talk about the loss of certainty
• 19:46
  what does that mean to you
• 19:50
  the loss of certainty means
• 19:52
  that you cannot be certain about anything in life
• 19:54
  but that is in everything in life
• 19:56
  but when you have an ocular melanoma diagnosis
• 20:00
  the certainty gets amplified
• 20:04
  into
• 20:07
  an echo chamber is the best way I can explain it
• 20:11
  you
• 20:13
  you thought you knew where you were going
• 20:15
  and now you're you're uncertain
• 20:17
  do I have six months do I have 12 months
• 20:20
  um I hear people talk all the time
• 20:22
  how do I know how much time I have
• 20:23
  well none of us know
• 20:25
  none of us know for certain what our life is
• 20:29
  so we're all dealing with uncertainty
• 20:31
  but this diagnosis amplifies it
• 20:33
  because all of a sudden
• 20:35
  it brought our expiration date a lot closer to us
• 20:39
  things that we never used to have to worry about
• 20:41
  we didn't have to worry about
• 20:43
  um having our affairs in order
• 20:45
  do we have our wills made
• 20:46
  do we have you know
• 20:47
  what are we doing where are we leaving our money
• 20:49
  you know are our children gonna be taken care of
• 20:51
  because when you're going through life
• 20:53
  you think that's not gonna happen for 20 30
• 20:55
  40 years down the road and then you get the diagnosis
• 20:58
  and all of a sudden
• 20:59
  your expiration date hits you right in the face
• 21:01
  oh my god
• 21:02
  it could come at any time
• 21:03
  and that's a huge uncertainty to live with
• 21:06
  when you're dealing with periods between scans
• 21:10
  you're you know
• 21:11
  you're you're just getting through short times
• 21:15
  short periods of time
• 21:18
  and then the uncertainty hits again
• 21:20
  you know
• 21:20
  is this gonna be the scan that's gonna show Mets
• 21:23
  is this gonna be the scan that shows progression
• 21:26
  is this gonna be the scan that tells me
• 21:28
  that I've progressed so much
• 21:29
  there's nothing else they can do for me
• 21:32
  it's a big it's a big
• 21:33
  uncertain time
• 21:35
  and living with the uncertainty is very difficult
• 21:42
  therapy taught me I can only live for today
• 21:45
  I cannot live in the future
• 21:48
  because nobody knows what happens today
• 21:51
  um right now
• 21:53
  in this minute we are here
• 21:55
  but I know it's an it's an
• 21:57
  um analogy nobody likes
• 21:59
  I could walk out the door
• 22:00
  get hit by a bus that is something true
• 22:03
  very possible there are many of us
• 22:05
  of our ocular melanoma people who passed away
• 22:08
  of something other than ocular melanoma
• 22:11
  I know two people that passed away of brain aneurysms
• 22:14
  they they were not metastatic
• 22:16
  and they and
• 22:17
  and both of their families told me
• 22:19
  we spent so much time and money
• 22:22
  worrying about ocular melanoma
• 22:25
  and then this and they make
• 22:28
  they were kind of bitter and resentful
• 22:30
  to ocular melanoma for stealing the time
• 22:33
  you know we worried so much
• 22:35
  and we lost them in a way that we didn't expect
• 22:38
  and it it
• 22:40
  it's kind of that's insult to injury
• 22:43
  maybe it's a good way to put it
• 22:45
  but it's an uncertain it's an uncertain disease
• 22:49
  but life is uncertain
• 22:50
  and I think just because it's amplified
• 22:55
  don't live there
• 22:56
  because nobody knows what tomorrow brings
• 22:59
  we all have an expiration date
• 23:00
  but nobody tells us when it is
• 23:02
  yeah that's absolutely true a great point
• 23:06
  okay so that being said
• 23:08
  when you do get good news
• 23:10
  you get sort of an emotional whiplash
• 23:13
  what does that feel like
• 23:15
  oh exhausting
• 23:18
  exhausting because
• 23:21
  you I think most of us
• 23:23
  in our heads get this doom doom
• 23:27
  impending doom and that's the only way I can explain it
• 23:30
  it's an impending doom something bad is gonna happen
• 23:33
  I know this is gonna be the scan
• 23:35
  that I'm not gonna get good news
• 23:38
  and you get yourself so
• 23:41
  um psyched up for it
• 23:43
  you just know it's gonna be bad news
• 23:45
  and then you go in and you get the scan
• 23:47
  and they're like oh
• 23:47
  you're great
• 23:49
  scans are great see you in six months
• 23:51
  and you're like wow
• 23:53
  thank god let's go celebrate
• 23:56
  and it is a whiplash and then you do it again
• 24:01
  and you do it again and it's exhausting
• 24:03
  because it's really hard to find that even
• 24:07
  because you can't be even
• 24:09
  it's a high it's a low
• 24:10
  there's not a nice middle ground
• 24:13
  so um
• 24:15
  it's a it's an emotional exhaustion
• 24:18
  and even though you get good news
• 24:20
  and you have that let down
• 24:21
  and you get the relief and you might be smiling
• 24:23
  be happy for a minute
• 24:26
  then I think at some point
• 24:28
  the reality hits you that okay
• 24:29
  that's this time but what about next time
• 24:33
  and so you always have this doubt
• 24:34
  it just kind of nags at you okay
• 24:37
  I'm good you know you
• 24:38
  you don't leave and say oh
• 24:39
  I'm good I'm fine
• 24:40
  I can just go live my life because
• 24:43
  you know in six months
• 24:44
  you got another scan or three months
• 24:45
  you have another scan and
• 24:47
  and so you can only enjoy it for a real small period
• 24:50
  so you kind of bounce back and forth
• 24:52
  between worry and relief worry and relief
• 24:56
  and it's
• 24:58
  um it's just emotionally exhausting
• 25:01
  and most people don't realize that
• 25:04
  and how does survivors guilt then come into that
• 25:09
  oh
• 25:10
  that was a tough one
• 25:14
  so
• 25:18
  survivors guilt
• 25:22
  is when
• 25:24
  when you get good news and somebody else gets bad news
• 25:28
  you feel guilty
• 25:29
  because you got good news and they didn't and
• 25:32
  and then you go into the why
• 25:34
  how come them and not me and then you start
• 25:37
  start really dissecting it
• 25:38
  analyzing it
• 25:39
  and it comes back into that uncertainty thing
• 25:42
  because no none of us know
• 25:44
  and it's very hard to celebrate your good news
• 25:47
  when your friend has bad news
• 25:51
  or you're living your life fine and you lose friends
• 25:55
  cause
• 25:55
  that's one of the pitfalls of being in a community
• 25:57
  you lose a lot of friends
• 25:59
  just lost a really good friend couple weeks ago
• 26:04
  you wonder why there's a lot of that
• 26:09
  why me why them
• 26:10
  how come and it
• 26:12
  none of us know because it's not for us to know
• 26:15
  you know we're here to live our life and we're gonna
• 26:20
  this is things that just happens and
• 26:22
  but survivor guilt is a real thing
• 26:24
  why am I here 15 years later
• 26:26
  when I was not supposed to be here
• 26:28
  and why are my friends not here
• 26:31
  it it
• 26:36
  it's just not fair
• 26:40
  yeah it's not
• 26:43
  I think survivor's guilt the hardest part
• 26:45
  is when we lose people in the community
• 26:47
  and we wonder why well
• 26:48
  it's not our time it's just not our time
• 26:51
  and I know that you know
• 26:52
  there's a lot of things that people say oh you know
• 26:57
  god answered my prayers and my scans are
• 27:00
  are clear or
• 27:02
  you know thank goodness
• 27:04
  you know god has healed me or delivered me
• 27:07
  or something like that
• 27:09
  it does cause a lot of problems in the community
• 27:11
  with the people that don't get the good news
• 27:13
  not saying that those people shouldn't rejoice in their
• 27:15
  in their faith and in their good news
• 27:18
  but at the same time you've got a whole
• 27:19
  another part of the community that's just
• 27:22
  barely hanging on or they just got bad news
• 27:25
  and it's hard because it's just a delicate balance um
• 27:31
  and and trying to live with the guilt of it is
• 27:34
  is hard
• 27:36
  um the only way I get through it is just by saying
• 27:40
  it's just the way it's supposed to be
• 27:44
  it's not my time it's their time
• 27:50
  it doesn't help it but that's
• 27:53
  it's hard it's a hard thing to live with
• 27:54
  it really is hard
• 27:57
  yeah absolutely
• 27:59
  so how do you process that or
• 28:04
  or move on and try to put it away can you do that
• 28:11
  um yes and no
• 28:13
  um it took me a long time to get there
• 28:18
  you take loss personally you know it's a personal
• 28:23
  it's a personal loss
• 28:28
  the losses add up
• 28:32
  so I choose the to float down the river of denial
• 28:39
  which is not what my therapist would ask me to do
• 28:42
  but I just try not to think about it
• 28:46
  I try to like you said
• 28:48
  process my emotions in the minute in the minute
• 28:54
  put it away and go on
• 28:57
  because you can't you can't live in that space
• 29:01
  well friends
• 29:02
  like we said this is a heavy episode
• 29:04
  so if you have an experience
• 29:06
  with any of these things that we've talked about
• 29:10
  please leave us a comment
• 29:12
  please send us an email
• 29:13
  we have a Tuesday evening support group on zoom
• 29:18
  that you can connect with
• 29:19
  some other people that have this condition
• 29:21
  if you do want to talk about it
• 29:23
  we have a lot of resources on our website
• 29:25
  so
• 29:26
  if you are dealing with any of these very heavy topics
• 29:30
  and you need some support
• 29:32
  please reach out to us you can email any of us
• 29:35
  our email addresses are our first names
• 29:37
  at ACureInSight.org
• 29:39
  you can also email contact@ACureInSight.org
• 29:42
  and it will find its way to
• 29:43
  wherever it's supposed to go
• 29:45
  and please check out our website
• 29:46
  ACureInSight.org
• 29:47
  and find some resources there if you can
• 29:51
  and if you need more
• 29:52
  let us know what we can do to help you
• 29:56
  it's because it is hard
• 29:57
  and the one thing I could say is
• 30:00
  do your best to process your emotions and move on
• 30:05
  because we can't take on other people's
• 30:08
  journey
• 30:10
  just like we can't give other people our journey
• 30:13
  um I try really
• 30:15
  hard to process wish them well
• 30:21
  and and
• 30:21
  and live in the good memories
• 30:24
  that's a wonderful way to put it
• 30:26
  live in the good memories
• 30:27
  because there are good memories
• 30:28
  and there's a lot to celebrate and a lot to rejoice
• 30:31
  and there are those hard hard pieces and
• 30:36
  you know it's kind of like they say
• 30:38
  you can't have light without dark
• 30:40
  you can't have joy without heartbreak
• 30:42
  and we're here as humans to experience all of it
• 30:46
  we're so lucky to be on this wonderful planet
• 30:49
  and experience all of these complex emotions
• 30:52
  and that is what life is
• 30:53
  so hopefully we've been some kind of resource for you
• 31:00
  or
• 31:00
  we've been able to connect you with a resource in this
• 31:04
  and hopefully just hearing somebody else's story
• 31:09
  who's walking your path is helpful
• 31:12
  and like we've said please reach out if you need us
• 31:15
  we're all here
• 31:17
  and we hope that everyone has support and has some joy
• 31:23
  some things that bring you joy
• 31:24
  so we're gonna end this episode on a joyful note
• 31:28
  so let's talk about all the things
• 31:29
  that are bringing you joy right now
• 31:32
  the community
• 31:34
  I don't know how to explain
• 31:39
  the the people
• 31:42
  they make the journey easier
• 31:45
  and it's not just patients
• 31:47
  it's the companies
• 31:50
  the researchers
• 31:52
  the physicians
• 31:55
  I get joy out of hearing from them hearing them
• 32:03
  when they get a breakthrough
• 32:06
  a researcher finds something and they get excited
• 32:09
  going to these meetings where they're talking about um
• 32:13
  how new maybe new breakthroughs
• 32:17
  that are leading them down a new path
• 32:18
  to find something that might eventually give us a cure
• 32:21
  that's a huge joy last night on the zoom meeting
• 32:24
  we had um
• 32:25
  one of the reps from Delcath on
• 32:28
  and listening to her talk to the patients and asking
• 32:32
  answering questions
• 32:33
  in the conversations that came out of it
• 32:36
  it's this is a wonderful community
• 32:39
  full of love and a lot of life
• 32:42
  and don't be afraid to jump into the community
• 32:45
  because you're afraid of the loss
• 32:47
  because while the losses are hard
• 32:50
  the rewards are bigger and the rewards are huge
• 32:56
  and I love talking to my fellow Omies
• 33:00
  I love the conversations that we have
• 33:03
  I had two great conversations with two Omies
• 33:05
  that I've known for years
• 33:07
  last night and it was just general talking
• 33:11
  we weren't talking about Om necessarily
• 33:14
  but we were talking about um
• 33:16
  you know our doctors and the silly things we've done
• 33:20
  and and
• 33:21
  and you know what brings us joy
• 33:23
  walking 10 blocks to go do something
• 33:26
  that walking is joyful and that
• 33:28
  that and
• 33:28
  and there's so much that we share that is the same that
• 33:34
  that our differences kind of fade away and the
• 33:37
  the sadness fades away and you're walking
• 33:41
  I used to one of Doctor Murphy and Gias sayings
• 33:44
  you're walking
• 33:44
  shoulder to shoulder with your fellow patients
• 33:48
  that know exactly how you feel
• 33:50
  they can accept you exactly how you are
• 33:53
  that understand exactly what you're gonna say
• 33:56
  and can probably even finish your sentence for you
• 33:58
  because they're feeling the same way
• 34:00
  and it's a place of acceptance
• 34:02
  it's a place of belonging
• 34:04
  it's a place of fitting in
• 34:06
  when you feel like you really don't fit in
• 34:08
  out there in the world
• 34:09
  because people don't understand you
• 34:11
  so when you're going through all of those things
• 34:13
  and you're
• 34:13
  you're grieving the life that you used to have
• 34:15
  and you're
• 34:16
  you're feeling very sad because you're in this why
• 34:19
  why me phase
• 34:20
  if you if that's where you're at
• 34:22
  you get into the group and just the the
• 34:25
  the communities are
• 34:28
  um it's like a big hug
• 34:31
  it's best I can explain it
• 34:32
  and to me the community every day is like
• 34:36
  I get a hug every day
• 34:38
  because somewhere I'm gonna get gratitude
• 34:42
  I'm gonna give gratitude I don't necessarily
• 34:44
  I'm not saying that people are giving gratitude to me
• 34:47
  but to gratitude in general
• 34:49
  we are all still here today
• 34:51
  and that's that right
• 34:52
  there is something to be grateful for and
• 34:55
  and I'm grateful to be able to be in the journey
• 34:57
  along with so many people and
• 34:59
  and watch them as they go from newly diagnosed
• 35:05
  to being treated
• 35:06
  to living a life and then accepting it
• 35:08
  and us all coming together
• 35:11
  you know we're planning that
• 35:12
  Eye Believe meeting right now and
• 35:13
  and that's joyful there's
• 35:15
  you know all
• 35:16
  there's a lot of joy in this community
• 35:19
  if you take the time to find it
• 35:21
  I think that was a perfect way to wrap up this episode
• 35:25
  so we're gonna leave you guys here
• 35:28
  and we will see you on the next episode
• 35:30
  please like and subscribe
• 35:32
  please leave us a comment
• 35:33
  let us know what you thought if you relate to this
• 35:36
  and like I said check out our website
• 35:38
  ACureInSight.org
• 35:39
  there's a lot of great resources
• 35:41
  and we hope that we get to see you at one of our events
• 35:43
  or in a zoom meeting soon