Latest / The Eye Believe Podcast / "From Survivor to Warrior: Tara's Ocular Melanoma Journey"

Transcript

"From Survivor to Warrior: Tara's Ocular Melanoma Journey" · The Eye Believe Podcast

• 0:24
  Welcome to the Eye Believe Podcast
• 0:26
  where we share
• 0:26
  powerful stories of resilience,
• 0:28
  hope and survival.
• 0:30
  today
• 0:30
  we have the privilege of talking
• 0:31
  to Tara Ruckman, a courageous.
• 0:34
  Oh, goodness.
• 0:34
  Tara, how many years
• 0:35
  have you been dealing
• 0:36
  with ocular melanoma?
• 0:38
  Actually, I am just a little bit
• 0:40
  over a year, so I'm fairly newbie
• 0:44
  to ocular melanoma,
• 0:46
  but it all happened fairly quickly.
• 0:48
  so I've been dealing for cancer
• 0:52
  for a very long time,
• 0:54
  but actual
• 0:55
  ocular melanoma
• 0:56
  just a little over a year.
• 0:58
  Okay.
• 0:59
  Well,
• 0:59
  Tara's story is one of strength
• 1:02
  and just courageous like resilience.
• 1:04
  And I'm so glad to have her with us.
• 1:06
  And like she said, she's been dealing
• 1:07
  with multiple types of cancer,
• 1:09
  not just ocular melanoma
• 1:11
  for the last few years.
• 1:12
  And, so, Tara,
• 1:14
  thank you so much for joining us
• 1:15
  and for being willing
• 1:16
  to share your story.
• 1:18
  Thank you for having me.
• 1:20
  I'm so excited to be able to share.
• 1:22
  And hopefully
• 1:24
  somebody can take away something
• 1:26
  and learn from me today
• 1:28
  just because,
• 1:29
  you know, everybody's
• 1:30
  here for a reason, right?
• 1:31
  When we get on to listen.
• 1:33
  So hopefully
• 1:34
  sharing our stories
• 1:35
  and continuing
• 1:36
  to do that,
• 1:37
  we help to guide somebody else's
• 1:39
  journey from somebody
• 1:40
  that's going to follow
• 1:41
  in our footsteps
• 1:42
  somewhere along the line.
• 1:44
  Okay, well, let's just kind of kick
• 1:46
  right off with your initial diagnosis.
• 1:48
  So let's just talk about, oh,
• 1:50
  I'm really quick was oh,
• 1:51
  I'm your first cancer.
• 1:53
  No, actually I was diagnosed
• 1:55
  with subcutaneous stage three melanoma
• 1:59
  in the year 2000.
• 2:01
  So was actually living in Ireland
• 2:03
  when that happened.
• 2:04
  And I fought for over
• 2:07
  two years before I became cancer free.
• 2:11
  I went 20 years being cancer free
• 2:15
  and then was diagnosed
• 2:17
  with subcutaneous stage
• 2:19
  four melanoma in 2022.
• 2:22
  And while
• 2:23
  I was continuing to fight that battle,
• 2:27
  I was then diagnosed in 2023
• 2:30
  with ocular melanoma.
• 2:32
  As I was getting treated
• 2:33
  for subcutaneous melanoma.
• 2:36
  So now I'm getting treated for both,
• 2:38
  and I have
• 2:39
  two different buildings I'm going to
• 2:41
  I have my ocular oncologist
• 2:43
  and then I have my medical oncologist
• 2:46
  and my surgical oncologist
• 2:48
  for subcutaneous melanoma.
• 2:50
  So I had all kinds
• 2:52
  of doctors appointments
• 2:53
  that I was going to.
• 2:54
  And I still continue now
• 2:56
  to be in treatment
• 2:57
  for a subcutaneous melanoma.
• 3:00
  Oh my goodness, that's so much to handle,
• 3:02
  so much to deal with.
• 3:03
  So with regards to ocular melanoma,
• 3:05
  do you feel like your first initial
• 3:07
  like subcutaneous
• 3:08
  stage
• 3:09
  for on stage three diagnosis overshadowed
• 3:12
  your ocular melanoma diagnosis process?
• 3:15
  I do believe it
• 3:16
  overshadowed it a tiny bit,
• 3:19
  because we think about
• 3:22
  the rare piece of ocular melanoma.
• 3:26
  I was going to my oncologist
• 3:30
  and I was in treatment,
• 3:32
  and I was thinking about,
• 3:35
  like I was sharing
• 3:36
  that I was having the signs
• 3:38
  and symptoms with my doctors,
• 3:40
  and they didn't believe it
• 3:42
  because not only is ocular
• 3:44
  melanoma so rare,
• 3:46
  but then to have it similar, tenuously,
• 3:49
  subcutaneous melanoma,
• 3:51
  I'm not even sure
• 3:52
  if there's a statistic for that
• 3:55
  and perhaps there's not. Right.
• 3:56
  So six out of what is it,
• 3:58
  six out of a million
• 3:59
  get diagnosed with ocular melanoma.
• 4:02
  But now add
• 4:03
  that other piece,
• 4:05
  probably even less people.
• 4:07
  So that's having those two things
• 4:10
  at the same time
• 4:11
  I think was way over overlooked.
• 4:18
  though,
• 4:18
  I think in the long run
• 4:20
  it helped some of my decisions,
• 4:22
  some of my treatment decisions,
• 4:24
  because of my past experiences with.
• 4:26
  So I think there's, you know, part of it.
• 4:29
  Yes, it overshadowed it,
• 4:30
  but then part of it, yes,
• 4:32
  ended up
• 4:32
  being supporting
• 4:34
  some of my decisions for my treatment.
• 4:36
  Well, I would love to get into that,
• 4:38
  but let's just talk
• 4:38
  about your first initial
• 4:40
  discovery of ocular melanoma.
• 4:42
  So what exactly were
• 4:43
  the initial signs
• 4:44
  that you were experiencing?
• 4:45
  So I was starting to have floaters.
• 4:48
  and when I started to have floaters,
• 4:52
  they were infrequent.
• 4:54
  Maybe every couple days,
• 4:57
  I would wake up in the morning
• 4:58
  and open up
• 4:59
  my eyes and I would see the floaters
• 5:01
  and then they would be gone.
• 5:03
  and I really at first
• 5:07
  didn't think anything huge,
• 5:09
  but I'd never experienced
• 5:10
  something like that
• 5:11
  because I've always had great vision,
• 5:13
  never had any issues.
• 5:16
  so I never had a thought
• 5:18
  in my mind
• 5:19
  at first that it could be something
• 5:21
  that big,
• 5:22
  but I did bring it to my doctors,
• 5:24
  and when I brought it to my doctors,
• 5:26
  they too kind of dismissed it.
• 5:28
  But then I started to have an increase
• 5:32
  in those floaters.
• 5:33
  So when it wasn't
• 5:35
  every couple days anymore,
• 5:36
  I started tracking them.
• 5:38
  So I'm a big data person
• 5:40
  because I'm a behavior analysis.
• 5:42
  So I started like graphing the frequency
• 5:45
  and the duration of the floaters.
• 5:47
  So now instead of happening
• 5:49
  every couple days,
• 5:50
  it started happening daily.
• 5:53
  And then it wasn't
• 5:54
  just happening in the morning
• 5:56
  when I woke up.
• 5:57
  It would happen throughout the day.
• 5:59
  It would happen on my walks.
• 6:02
  so it would happen
• 6:03
  for a longer period of time
• 6:05
  where they wouldn't just come and go.
• 6:08
  So as they progressively
• 6:10
  started to get worse,
• 6:11
  I continued to bring those things up.
• 6:14
  So I started bringing it up in November
• 6:18
  to my doctors.
• 6:19
  In January,
• 6:21
  I finally,
• 6:22
  because of the tracking that I was doing,
• 6:25
  got very serious and concerned
• 6:27
  and then went to my optometrist about it,
• 6:30
  even though my oncologists
• 6:34
  were kind of dismissing it as nothing
• 6:36
  that was a big deal.
• 6:37
  And oh, you know, a lot.
• 6:38
  Lots of people get floaters
• 6:40
  as they get older.
• 6:41
  It's probably just that aging factor.
• 6:43
  so when that happened
• 6:46
  and I went straight to the optometrist,
• 6:50
  she was then she, she did my,
• 6:54
  exam and dilated me right away.
• 6:56
  And you could tell
• 6:57
  by the look on her face and the way she
• 7:01
  if you ever read people's body language,
• 7:03
  the way her hands fell to her lap
• 7:05
  and she rolled back in her chair
• 7:07
  and she looked at me
• 7:08
  and asked me
• 7:09
  where I would like my referral.
• 7:11
  Would I like to go to Ohio
• 7:12
  State University
• 7:13
  or would I like to stay somewhere local?
• 7:16
  So Ohio State
• 7:18
  was where I was receiving
• 7:19
  my other treatment.
• 7:21
  And she said to me
• 7:22
  on my lunch today,
• 7:23
  I'll go ahead and get that referral done.
• 7:25
  So I know now
• 7:26
  she's already kind of
• 7:28
  stating that urgency
• 7:29
  without stating the urgency
• 7:31
  that's on her lunch today.
• 7:33
  She was going to make that referral,
• 7:35
  so I got into the doctor
• 7:36
  very quickly after that.
• 7:39
  That's so good that at least
• 7:41
  when you did discover
• 7:42
  there was something actually
• 7:43
  happening with your eye,
• 7:45
  it wasn't just, you know,
• 7:46
  side effects
• 7:46
  from stage four treatment
• 7:48
  from subcutaneous melanoma.
• 7:49
  that is so good
• 7:51
  that they were able to act quickly
• 7:52
  and that you already had a care team,
• 7:54
  at least a location
• 7:55
  where a care team could be established.
• 7:57
  yeah.
• 7:58
  It just took a little bit to get there.
• 8:00
  Right.
• 8:00
  So several months that I getting
• 8:03
  trusted graphs.
• 8:06
  Yeah, I will share that.
• 8:07
  I will I will share that with you.
• 8:10
  All right, well,
• 8:11
  let's just walk through your initial
• 8:12
  ocular melanoma treatment process.
• 8:14
  What type of treatment
• 8:15
  did you decide to undergo
• 8:16
  and what influenced that decision?
• 8:19
  I did have in a nucleation,
• 8:22
  in 2023, it was in March.
• 8:25
  my tumor was a medium size,
• 8:29
  but that was not our original decision.
• 8:32
  originally,
• 8:34
  at first
• 8:34
  we talked about the plaque radiation.
• 8:37
  and then when we continued
• 8:39
  to have discussions
• 8:41
  about the placement of it,
• 8:44
  even though it was not a large size
• 8:46
  tumor, because of the placement of it,
• 8:49
  we decided to go with the nucleation
• 8:53
  and we changed the plan. So
• 8:57
  I didn't go through
• 8:58
  all of the
• 8:59
  the pieces
• 9:00
  that everyone else went through.
• 9:02
  because I, I kind of went straight from
• 9:07
  I was diagnosed in February and March.
• 9:10
  I had the eye removed.
• 9:12
  So I wasn't really a very long process
• 9:16
  for me
• 9:17
  to, you know,
• 9:18
  try to go through that radiation kind.
• 9:21
  I kind of jump that step.
• 9:23
  But I did feel comfortable
• 9:25
  in that decision
• 9:27
  when we made it as a team with my doctor.
• 9:49
  Well,
• 9:49
  I mean, I don't know
• 9:50
  if you could ever
• 9:51
  fully feel comfortable with any decision,
• 9:55
  but as I said, I did feel
• 9:59
  slightly comfortable with it.
• 10:02
  I would say probably more so than others
• 10:06
  because of my past
• 10:07
  experience with cancer.
• 10:10
  So because I had multiple
• 10:12
  recurrences already, to me,
• 10:15
  I kind of have that like go
• 10:18
  big or go home attitude.
• 10:19
  Let's be aggressive
• 10:21
  to, to take care of it.
• 10:23
  if I was going to lose my eyesight,
• 10:26
  I was going to lose it on my terms,
• 10:28
  not cancers terms.
• 10:30
  And that was really important to me
• 10:33
  that I felt like,
• 10:35
  trying to save my eye.
• 10:40
  could, could really.
• 10:42
  And doing years of that
• 10:44
  could be actually more traumatic to me.
• 10:46
  Continuing to go for the eye treatments.
• 10:49
  I was,
• 10:49
  I was really got myself
• 10:51
  to a place that I was ready,
• 10:54
  to lose this part of me,
• 10:58
  instead of trying to save it
• 11:00
  so that I could move forward
• 11:02
  with my life.
• 11:03
  And some of the things that helped me
• 11:06
  feel comfortable
• 11:07
  is I literally listened
• 11:09
  to you and your podcast,
• 11:12
  in your voice,
• 11:14
  you know, ringing in my head
• 11:15
  every morning when I was in the shower,
• 11:16
  I listened to like
• 11:17
  over 40 episodes of the of the podcast,
• 11:21
  which and also did
• 11:24
  my own personal research
• 11:26
  to help me feel comfortable
• 11:27
  with this decision.
• 11:30
  one of the things that I did
• 11:32
  in preparation to,
• 11:33
  I think, help
• 11:34
  that emotional journey too, is
• 11:36
  I scheduled a photo shoot
• 11:38
  and it was a kiss goodbye to the
• 11:41
  oh, am I, my husband
• 11:43
  and I did this photo shoot,
• 11:45
  and I hired someone
• 11:46
  to take pictures of both my eyes together
• 11:50
  and we felt like,
• 11:52
  you know,
• 11:52
  it was kind of like the send off.
• 11:55
  So I think, you know,
• 11:57
  the things that I did
• 11:58
  to prepare, for the upcoming surgery
• 12:03
  and the things that I did around my house
• 12:05
  in preparation
• 12:07
  really made me feel confident
• 12:09
  in when I went to have
• 12:11
  to have my surgery.
• 12:33
  Yes.
• 12:34
  Yes.
• 12:44
  Well.
• 12:53
  Yeah.
• 12:53
  Because I do feel like it did support me
• 12:58
  in many positive ways because,
• 13:01
  I went cancer free for 20 years, so.
• 13:05
  And, you know,
• 13:07
  20 years ago,
• 13:08
  cancer treatments are not
• 13:09
  what they are today.
• 13:11
  So being confident in that,
• 13:13
  I went 20 years cancer free.
• 13:16
  It made me feel like being aggressive.
• 13:19
  So I had what was called
• 13:21
  a surgery back then.
• 13:22
  What was called
• 13:23
  isolated hypothermic limb perfusion,
• 13:26
  which was at its starting stages.
• 13:29
  and they only did it
• 13:31
  a couple places in the country.
• 13:33
  So that very aggressive surgery
• 13:35
  and then the treatment that I received
• 13:37
  after
• 13:38
  I believe is what helped me
• 13:39
  go, 20 years cancer free.
• 13:42
  So having that piece in my mind
• 13:45
  that I
• 13:46
  there are things
• 13:47
  and being aggressive in that way
• 13:49
  and trying new things
• 13:51
  and you know, having that surgery that,
• 13:57
  was fairly new.
• 14:00
  I think those things in my mind as like,
• 14:03
  I could,
• 14:03
  I can do this like, this is possible.
• 14:06
  You don't need to think
• 14:07
  about the statistic dicks all the time.
• 14:09
  There's always
• 14:10
  everybody's body's
• 14:11
  different, of course, but,
• 14:13
  you know, I'm an individual,
• 14:14
  and this is what was right for me.
• 14:17
  And at this time in my life,
• 14:19
  for where I was in the treatment.
• 14:47
  Yeah.
• 14:48
  My family has been super supportive.
• 14:50
  So the first time around fighting cancer,
• 14:53
  I was living in Ireland,
• 14:54
  and I was kind of by myself.
• 14:56
  so this time, being surrounded
• 14:59
  by family
• 14:59
  and my kids are a little bit
• 15:00
  older as well.
• 15:02
  The, the huge community
• 15:05
  that was created around me,
• 15:07
  whether it be work or family
• 15:09
  or just in my home.
• 15:11
  As you know,
• 15:13
  they never once
• 15:16
  doubted anything in any of my decisions.
• 15:20
  They were all very supportive.
• 15:22
  My friend,
• 15:23
  one of my friends,
• 15:24
  had this pledge to patch
• 15:26
  that she organized,
• 15:28
  and on the day of my surgery,
• 15:30
  when I was having my eye removed,
• 15:33
  all of my friends bought patches
• 15:37
  and decorated them in different ways,
• 15:40
  and they all put them on.
• 15:41
  And she had this big video that she
• 15:44
  some people shared them with me
• 15:46
  directly, directly.
• 15:47
  And then she took
• 15:49
  all of them
• 15:50
  and put them in this video
• 15:51
  for me, of all of these people
• 15:54
  that had these decorated patches.
• 15:57
  So it was the pledge to patch, in honor
• 16:00
  of the nucleation surgery.
• 16:03
  And then all of them sent me the patches.
• 16:06
  So I had
• 16:06
  tons of different kinds of patches
• 16:09
  that I was able to wear
• 16:10
  after this surgery that were all fun
• 16:13
  and had different, you know,
• 16:15
  some of them were decorated with bling,
• 16:18
  some of them were flowers,
• 16:19
  some of them had cancer. Killer.
• 16:21
  Because my motto
• 16:22
  throughout this whole thing
• 16:23
  was, to be a cancer
• 16:25
  killer not killed by cancer.
• 16:27
  So I had some of those mottos on there.
• 16:30
  So it was really
• 16:31
  it was really great
• 16:32
  to see the support of my community
• 16:35
  and my family.
• 16:36
  I had, you know, a hospital
• 16:39
  full of family
• 16:41
  that were there to support me.
• 16:44
  on day
• 16:45
  three, when I,
• 16:47
  after I left the hospital,
• 16:50
  I was ready to drive
• 16:53
  and my daughter looked at me
• 16:55
  and she was like, mom,
• 16:57
  you are not driving.
• 16:59
  Like, if
• 17:00
  if you can't walk on the road,
• 17:03
  then you're not ready to drive yet.
• 17:05
  So in that and so everybody was refusing
• 17:09
  to drive with me because they're like,
• 17:11
  it's like three days
• 17:12
  after your surgery, mom.
• 17:14
  So on day five, finally,
• 17:16
  I said to my husband, tomorrow
• 17:18
  I'm driving to get myself coffee.
• 17:20
  So you're either
• 17:21
  going to sit in that seat
• 17:23
  next to me in the passenger seat,
• 17:25
  and you're going to support me,
• 17:27
  or I'm going to go alone.
• 17:29
  So that next day, on day six,
• 17:31
  he was definitely sitting
• 17:33
  next to me in the seat
• 17:34
  beside me, going to get coffee.
• 17:36
  so that was like
• 17:37
  the only thing throughout
• 17:39
  that they
• 17:40
  weren't 100% buying into my decision on.
• 17:44
  but they still supported me.
• 17:46
  My husband still got in the seat
• 17:48
  next to me, and, I had told them like,
• 17:52
  either going alone or without you,
• 17:55
  so he wasn't going to
• 17:56
  slow my progress down.
• 17:57
  So that's what I told all my family.
• 17:59
  You're not slow my progress down,
• 18:01
  because this is like
• 18:01
  the one fear that I had was driving.
• 18:04
  And, for me,
• 18:07
  facing that fear early on to get through,
• 18:10
  it was really important to not leave it.
• 18:12
  Like hanging over my head
• 18:14
  that I had this fear,
• 18:16
  to get behind the wheel,
• 18:18
  that I wanted to confront it right away.
• 18:20
  And as soon as I could confront
• 18:22
  that fear, then all the rest of the fears
• 18:24
  could maybe melt away in the background
• 18:27
  because I knew I could do it.
• 18:41
  Yeah.
• 19:19
  So one thing that I
• 19:21
  really focused on after,
• 19:24
  having the eye removed
• 19:26
  was the mental health piece.
• 19:29
  I know how important that is.
• 19:31
  So, with me being a behavior coach,
• 19:33
  I work in 14 different schools,
• 19:36
  and we have so many students.
• 19:38
  You know,
• 19:38
  we have a vast array
• 19:40
  of behavioral challenges
• 19:42
  with our students that all start.
• 19:46
  I shouldn't say all, but most stemmed
• 19:49
  from some type of trauma. Right?
• 19:51
  And now
• 19:52
  I'm experiencing
• 19:53
  a medical type of trauma.
• 19:55
  So knowing what I do to support kids,
• 19:59
  I know that I need myself to practice,
• 20:03
  good mental health care.
• 20:05
  So I, I go
• 20:08
  I went through the practice of
• 20:10
  meditation, practicing deep breathing,
• 20:14
  making sure that, walking and sometimes
• 20:17
  walking in nature,
• 20:18
  sometimes taking my dog for a walk,
• 20:21
  really focusing on joy to,
• 20:24
  you know, making sure
• 20:25
  that I am intentional about
• 20:29
  bringing about joy.
• 20:30
  So I have a Jeep,
• 20:32
  that I only drive in the summer,
• 20:34
  so making sure that I get that Jeep out
• 20:36
  and I go for a ride
• 20:38
  if I'm feeling down
• 20:39
  and feel the wind in my hair,
• 20:41
  and do something that brings me joy.
• 20:45
  And, you know, all
• 20:47
  of the
• 20:47
  practice that I,
• 20:48
  I do played a part in being able to
• 20:53
  deal with
• 20:53
  some of the,
• 20:54
  the changes and the challenges
• 20:56
  that maybe I was confronted with.
• 20:58
  I, I used to be
• 21:00
  wonderful at yoga,
• 21:02
  and then I realized, like,
• 21:03
  my center is not my center
• 21:05
  anymore, and my balance
• 21:06
  and my coordination is a little bit off,
• 21:08
  and it's a little
• 21:09
  bit of a challenge for me,
• 21:10
  and I need to find my new balance.
• 21:12
  So working on continuing
• 21:15
  to face that
• 21:16
  so I could get back into yoga,
• 21:18
  right,
• 21:19
  and face that balance
• 21:20
  and finding my new center.
• 21:23
  But all of this, you know,
• 21:24
  focus on my mental health,
• 21:26
  I think all played into when I had my my
• 21:30
  eye removed,
• 21:32
  my daughter,
• 21:33
  put on the
• 21:35
  eye of the Tiger song, which I know
• 21:37
  probably for anybody.
• 21:38
  Right.
• 21:39
  We could all relate to that song
• 21:41
  in some way, shape or form.
• 21:42
  I the Tiger,
• 21:43
  somebody has played that for us
• 21:45
  somewhere along the line.
• 21:46
  Would you agree?
• 21:48
  Yeah.
• 21:49
  So my daughter played this
• 21:51
  eye of the Tiger song,
• 21:53
  walking behind me,
• 21:54
  going down the surgical hall
• 21:56
  to have my eye removed,
• 21:58
  and I was able to hand out
• 22:01
  thank you
• 22:02
  cards to everybody on my surgical team.
• 22:05
  And I did not have one bit
• 22:09
  of anxiety and medication,
• 22:11
  nothing to relax me.
• 22:13
  The only thing I had going into surgery
• 22:15
  was my eye to be dilated.
• 22:17
  I was wide awake when I could.
• 22:20
  I can picture the surgical room right now
• 22:23
  that I was in, and that's kind of crazy
• 22:26
  to think about that
• 22:27
  I'm going to have my right eye removed.
• 22:30
  I'm going to wake up without it,
• 22:32
  and I don't even have
• 22:33
  to have any medication to relax myself.
• 22:37
  And I,
• 22:38
  I felt like that was like a moment
• 22:40
  for me, that
• 22:41
  this is how I know the things
• 22:43
  that I'm doing to work on my mental
• 22:44
  health is going
• 22:46
  well because I have that
• 22:47
  like emotional control.
• 22:50
  But knowing
• 22:51
  that is an ongoing process, right?
• 23:15
  Yeah.
• 23:31
  I do.
• 23:52
  So lots of people call them funny eyes.
• 23:55
  but actually, for me, it's
• 23:57
  more of like, an empowerment eye
• 23:59
  and being who you are,
• 24:00
  it's not really about fun.
• 24:03
  I mean, it is fun, right?
• 24:05
  But it's my eyes.
• 24:07
  Sensory instead of, sensory.
• 24:09
  but the reason why I have chosen
• 24:13
  this is one of the things
• 24:15
  that I pride myself
• 24:16
  in throughout
• 24:17
  this whole journey is being who I am.
• 24:20
  And for me
• 24:23
  and I,
• 24:23
  you know,
• 24:24
  this is just a personal decision.
• 24:25
  Everybody feels differently
• 24:27
  about the type of I, but my feeling was
• 24:31
  that I'm not a two eyed person anymore.
• 24:34
  I'm not a binocular person anymore.
• 24:37
  I am now monocular.
• 24:39
  So, I did not want to pretend.
• 24:44
  And it's not pretending.
• 24:46
  But in my in my head,
• 24:48
  this is what I was telling myself.
• 24:50
  Is that why I have two eyes
• 24:54
  that look alike when it's not?
• 24:57
  It's not the real thing.
• 24:59
  So I'm going to be who I am
• 25:03
  and be an monocular person
• 25:05
  and share with people around me.
• 25:08
  Some being my students,
• 25:10
  some being my family
• 25:11
  that I'm just going to own. Own it.
• 25:13
  I'm just going to own who I am.
• 25:16
  kind of empower yourself to be
• 25:18
  who you are.
• 25:20
  And I do have a gold eye as well.
• 25:23
  That was actually my
• 25:24
  first empowerment, I.
• 25:27
  And it was
• 25:27
  to be that visual reminder of,
• 25:30
  there's a gold nugget
• 25:32
  in every challenge that you face.
• 25:34
  So find your gold nugget in
• 25:37
  whatever challenge you're facing.
• 25:39
  So they do have some meaning
• 25:41
  to each of the eyes that I have chosen.
• 25:45
  and they're just a reflection of who I am
• 25:48
  and who I want to be.
• 25:50
  And that's just being who I am, right?
• 25:53
  I'm.
• 25:53
  I'm a one eyed person
• 25:54
  now, and it's okay to be different.
• 25:57
  And I just live it and own it.
• 26:23
  I.
• 26:31
  I'm not ready.
• 26:37
  For.
• 26:41
  Fully embrace.
• 27:01
  So, Clay,
• 27:03
  the first time I ever met Clay was.
• 27:05
  I got on to a Tuesday night zoom,
• 27:08
  and I had found that group
• 27:11
  through Instagram, and I got on this
• 27:15
  this oh, me call,
• 27:17
  and I didn't know what
• 27:18
  I was going to expect.
• 27:19
  And here was Clay, and I just had my
• 27:23
  my surgery scheduled at this point.
• 27:26
  So I started to share with him
• 27:29
  the things that I was doing to prepare.
• 27:33
  And he said,
• 27:35
  oh my gosh, I'm so impressed.
• 27:37
  He's like,
• 27:38
  I actually feel like you prepared
• 27:41
  almost more than I did,
• 27:43
  and nobody prepares more than I did.
• 27:45
  And I was like,
• 27:47
  I was so excited that he said that to me.
• 27:51
  I felt like
• 27:52
  he's like this celebrity on me.
• 27:56
  And he was giving me this compliment.
• 27:58
  So I know I'm on the right track now.
• 28:00
  I know I'm feeling like confident
• 28:02
  because Clay Butler
• 28:04
  just complimented me
• 28:05
  on my preparation for my nucleation.
• 28:09
  So some of the things that I did was,
• 28:12
  you know, I walked around my house
• 28:14
  and I put glow strips
• 28:17
  on all of the doors.
• 28:18
  So that way at night time, if I was,
• 28:22
  if the lights were dark, you know, out
• 28:25
  and I got up to go to the restroom
• 28:27
  or something like that,
• 28:28
  or I was walking from the living room
• 28:30
  to the bedroom
• 28:31
  that I had these
• 28:32
  glow strips
• 28:33
  that were in my doorways
• 28:34
  to help me spot the doorways
• 28:36
  so I wouldn't,
• 28:37
  you know, get bruised on my right side
• 28:39
  as much right, to walk into things.
• 28:42
  I put extra
• 28:43
  lighting in
• 28:44
  my hallways, on my walkways outside.
• 28:47
  I had my husband line
• 28:49
  our walkways with lighting.
• 28:51
  I changed light bulbs and colors.
• 28:54
  I put some motion detector,
• 28:56
  like lights, into our hallways.
• 28:59
  So if I walked down the hallway,
• 29:01
  those lights would light up
• 29:03
  because they were motion lights.
• 29:04
  we have a pantry, and there's, like,
• 29:07
  some dark areas, like,
• 29:09
  because it's a pretty big pantry.
• 29:11
  so when you reach back to the back
• 29:13
  to grab something,
• 29:14
  so I put some lights
• 29:15
  in the back of the pantry
• 29:17
  to have more lighted areas.
• 29:19
  I went through my phone
• 29:22
  and the assistant,
• 29:23
  I don't know if you, you know, use
• 29:25
  some of the assistive technology
• 29:27
  that's on your phone,
• 29:28
  the vision piece of it.
• 29:30
  But I went through
• 29:31
  and I played
• 29:31
  with every piece
• 29:33
  of the assistive technology
• 29:37
  and the vision accessibility,
• 29:39
  because I wanted to see
• 29:40
  what each thing did.
• 29:42
  So I didn't know
• 29:43
  what I was going to need.
• 29:44
  But if I played with all
• 29:46
  the settings, then
• 29:48
  when the
• 29:49
  surgery happened, if
• 29:51
  I needed to change some settings,
• 29:52
  I knew exactly where I needed
• 29:54
  to go
• 29:55
  to help make that more visible to me.
• 29:59
  So that was that.
• 30:00
  And I did that on my iPad.
• 30:02
  I did that on my phone.
• 30:03
  I did that on my computer.
• 30:05
  Of course not.
• 30:06
  Everybody's on the computer
• 30:07
  all day,
• 30:08
  but lots of people are on their phones.
• 30:10
  Right.
• 30:11
  I also did
• 30:14
  lots of research on my Oculus Quest,
• 30:16
  and I think this is really
• 30:18
  this is really an important piece
• 30:20
  because,
• 30:22
  a lot of us will use the, the Oculus
• 30:25
  that is recommended to us by our doctor,
• 30:28
  but not everybody does.
• 30:31
  some people,
• 30:32
  you know,
• 30:33
  in my case, I did have a different Oculus
• 30:36
  because they were the Oculus
• 30:38
  that was near me, was not doing,
• 30:41
  you know, the fun
• 30:42
  I or empowerment I at the time.
• 30:45
  So I feel like
• 30:47
  this is a big part
• 30:48
  of the healing process.
• 30:50
  It's like that final stage
• 30:52
  that you go through
• 30:53
  once you have your nucleation
• 30:55
  to actually then get your,
• 31:00
  get your new eye.
• 31:02
  So
• 31:04
  that to me, that research piece was,
• 31:07
  you know, exciting to find the person,
• 31:10
  make my appointments.
• 31:12
  no.
• 31:13
  And I made travel arrangements and
• 31:16
  and it had it all in place
• 31:17
  because I knew
• 31:18
  that was
• 31:19
  part of the healing process
• 31:21
  of when you finally get
• 31:22
  to that last stage,
• 31:24
  how important it is
• 31:25
  to feel comfortable with your Oculus.
• 31:46
  Yeah.
• 32:02
  I would say
• 32:03
  research and meet with any homies.
• 32:07
  that was wonderful for me.
• 32:10
  I'm now actually
• 32:12
  working with Ohio State
• 32:13
  University to mentor
• 32:15
  anyone that is going through the
• 32:17
  nucleation process.
• 32:19
  But just those Tuesday night
• 32:21
  meetings, the virtual ones,
• 32:23
  you know,
• 32:24
  finding that group of where you fit,
• 32:27
  and being able to have
• 32:29
  those conversations
• 32:31
  was extremely beneficial
• 32:33
  for me
• 32:33
  to be able to talk
• 32:34
  to people that understood
• 32:36
  where I was coming from.
• 32:38
  That was such a valuable experience
• 32:40
  for me.
• 32:40
  I think that was a big comfort
• 32:43
  piece of my journey
• 32:44
  going into a nucleation.
• 32:47
  So,
• 32:48
  you know,
• 32:48
  whether it's a virtual community,
• 32:51
  whether it's a community
• 32:52
  that your hospital has to offer,
• 32:55
  but just finding your people.
• 32:58
  But on the flip side of that
• 32:59
  as well,
• 33:00
  is making sure
• 33:01
  that you find the right one,
• 33:04
  because there are social media groups
• 33:06
  that are out there.
• 33:08
  and sometimes
• 33:10
  you need to shut those notifications off.
• 33:12
  So recognizing
• 33:14
  when you want to be involved
• 33:16
  and when you need to take a step back
• 33:19
  because sometimes,
• 33:20
  you know, when somebody posts,
• 33:22
  makes a post
• 33:24
  about some of their difficult parties
• 33:27
  and that could create
• 33:28
  another level and stress
• 33:30
  when you're
• 33:30
  reading about
• 33:31
  somebody else's difficulties.
• 33:33
  So just kind of recognizing
• 33:35
  when you do get into these communities,
• 33:38
  when you should push push forward
• 33:40
  and what is a positive experience
• 33:43
  and community for you
• 33:44
  and when you should pull back
• 33:46
  from the community
• 33:47
  and say,
• 33:48
  you know, today
• 33:48
  I need to
• 33:49
  to shut these notifications off
• 33:51
  because I'm feeling
• 33:52
  a little bit emotional
• 33:53
  and a little bit of stress.
• 33:54
  So reading about somebody else's stress
• 33:58
  and struggle
• 33:59
  might continue to enhance mine.
• 34:01
  So just kind of trying to figure
• 34:03
  that balance
• 34:04
  out of the positive community versus
• 34:07
  you know, what may also trigger
• 34:09
  some negative feelings in yourself.
• 34:54
  Days.
• 34:58
  For
• 34:59
  know.
• 35:06
  Rise up.
• 35:07
  One of my favorite songs by Andre a day.
• 35:12
  I love this song.
• 35:13
  So recently, I,
• 35:14
  I did a fundraising events.
• 35:17
  Was a lip sync battle.
• 35:18
  So this was the song that I chose,
• 35:21
  and I got
• 35:21
  on stage to sing it to my friends
• 35:24
  and family in the community.
• 35:26
  So if you ever have a chance
• 35:28
  to listen to that song
• 35:30
  or you may know that song already,
• 35:32
  it's very powerful words, to talk about,
• 35:35
  you know, rising up
• 35:36
  through the challenges.
• 35:38
  it sometimes it definitely
• 35:41
  when I put it on, it makes me cry.
• 35:43
  But it gives me like this
• 35:44
  feeling of strength when I listen to it.
• 35:47
  and I would recommend that for anybody
• 35:51
  that's facing a challenge,
• 35:53
  if you can just know that there's always
• 35:56
  ways to rise up.
• 36:33
  Right.
• 36:36
  Well, thank you for having me.
• 36:37
  like I said in the start,
• 36:39
  I hope you were able
• 36:40
  to learn something today.
• 36:42
  Or even if you didn't learn something,
• 36:44
  just having the comfort
• 36:46
  and feeling of being able to listen
• 36:48
  to a podcast episode
• 36:49
  and sharing experiences
• 36:51
  with other homies.
• 36:52
  And I'm excited to come back.
• 36:54
  And being able to continue to share.