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The Road Through Grief: Embracing Love and Loss | The Eye Believe Podcast · The Eye Believe Podcast

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hey everyone I'm Megan with the Eye Believe Podcast
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and today we have Barbara Hill
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and Barbara I'm so excited to have you with us
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if you guys remember
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we have been posting about her new book
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but Barbara I'm gonna let you intro the book
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because this is your baby
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I want you to tell everyone all about it okay great
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thank you Megan
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you know
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let me start with first introducing myself properly
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some people in the ocular melanoma community
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may know me um
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I've been around for many
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many many years
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uh and was a caregiver for some time
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so but as far as this book goes
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I do want everybody to know I'm not a therapist
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I'm not a psychologist I'm not an MD
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I'm a person who you know
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like everyone has walked the walk of having to grieve
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and having to deal with loss
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and so the book is really
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it's not my story I hope it's everybody's story
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but to talk about the road through grief
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let's look at it this way
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you go into it
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and there's sort of anecdotes throughout the book
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uh which started
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really originated from having gone through grief
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more times than I wish to count
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from the time I was a little girl
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till just a few years ago
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and so I sort of became inspired to start well
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journaling and writing things down
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and the book itself came out of that
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I'm I'm neither an author really well
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I am now but um
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officially that was never on the bucket list
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and was never something I had planned on doing
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but as I started to look at my stories
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whether it be trying to hold myself up
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in the face of grief or dealing with some type of new
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uh diagnosis or something like that
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um you know
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my stories kind of express my frustration
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so as you read them you might find them to be a little
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um sometimes witty
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sometimes like you can hear I'm annoyed
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things like that but
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what I did find was that there was actually science
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backing the experiences that I was having
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so for example
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I open the book early on
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and I talk about how after I lost my husband
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people came up to me and said
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you know oh
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I know exactly how you feel or
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you know I'm sorry for your loss
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of course is always appropriate
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but knowing exactly how I feel
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I would say you know
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unless you've walked in my shoes
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you probably don't know how I feel
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and so I express that frustration
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and then as I as I go on in the book then
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you know uh
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there had been research done that actually back this up
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that it's not unusual
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that we can hear these platitudes from people
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when we're going through loss
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and they might not give us the comfort that we expect
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or taking it another level
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I talk about
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something called disenfranchised grief in the book
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and this applies for whether someone has passed away
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or whether
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there are daily losses that you're dealing with
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maybe your significant other
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can't do certain things that they may or may not have
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been able to do at one time
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so those are the kinds of losses that uh
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we talk about in the book
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so disenfranchised grief I
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I like to tell the story of um
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if anybody knows me from the community
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way back in 2006
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my boyfriend was diagnosed with ocular melanoma and um
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anyway he had it for six years and
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you know thank goodness to organizations like this
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cause we just didn't have that back then
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but uh
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he had it six years and we ended up finding out like
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it had metastasized and just waited too long
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because also back in that time
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there were things that we didn't know
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like when someone was going for scans
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for example after
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uh you were having clear after the first few months
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and they'd stretch it out to six months
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you know or further
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now we know at least this is my understanding that
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you know we do scans more frequently
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so we were like in the middle of the scan schedule when
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uh it turned out that I had to take him to the hospital
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and they gave us very bad news
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and he asked me to marry him
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and we had been together for 10 years
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we were very much a family and he asked me to marry him
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and I said well
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wait a minute let's
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you know we're
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why don't we wait and see
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if you're gonna live another 20 years
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he goes no
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no no
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20 years 20 days
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whatever it is let's get married
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I said okay
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so we did get married we got married at the hospital uh
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and then he did pass away three weeks later
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so circling back to the book
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there was a friend of mine
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who instantly became no longer my friend
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when he said oh
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well how long were you married
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and I said well
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we were a family for 10 years
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but legally we were married
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you know three weeks and he said
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three weeks that's nothing
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what are you crying about
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forget it and so
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that is a really
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a good example of disenfranchised grief
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but there are other examples too
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and someone else's story but you know
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maybe a little bit different
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there's also something you know
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later on I talk about in the book
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when you have loss of any sort
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um there's something called secondary grief in my case
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it was very personal I
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we you know
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like I said we were a family
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and I was a stepmother and a step grandmother uh
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shortly after my husband passed
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well those relationships changed
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and so the secondary loss was that
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you know life of being a grandparent in my case
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but it can be almost uh
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any kind of secondary loss
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like sometimes I I hear that
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you know couples may go out with other couples
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and then after a while you find that
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you know couples
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and they're inviting you as the solo person
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and you're like the third or the fifth or the seventh
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or some odd number and over time that may
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you know dissipate
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you may not see those friends anymore
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so those are called secondary losses
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and and so
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secondary losses can happen whether someone has passed
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or whether you know
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it's
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you're just faced with certain things in your life
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and things are not the same anymore
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so that's kind of the gist of the book
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and the kinds of things that we touch on
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thank you so much for being here
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but explaining that
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because I think that when we hear grief
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we just think grief is grief
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and we don't realize all the different parts of it
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and I think just by touching on those
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and explaining them
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it helps validate people's feelings that hey yeah
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I do feel that or yeah I did notice that
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so I just wanna
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thank you for being here
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and talking about this with us
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it's such a delicate subject
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and we don't wanna shy away from those
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we wanna right you know
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we wanna hit them head on because it's real
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so I talk about in the book
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you know it's called The Road Through Grief
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because the only way around it is through it
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and culturally unfortunately
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at least when I was raised
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and not even until a few years ago
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do people even really face grief
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like society has an expectation that um okay
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you grieve for a little bit and then it's over
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and then you move on and the
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one of the key messages in my book
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so you now you don't even have to go buy it haha
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is that grief doesn't end no matter what
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and guess what the beauty of it is
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it doesn't have to
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because you're gonna learn to carry it uh forward
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I I expose a lot of myths about grief here
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I just opened the book zip
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it's good and I just pulled out a note here
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all right the myth of the grief timeline
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so I write here I'm gonna read this to you
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there is no universal timeline for grief nope
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not even a little bit it's a myth
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and I can't tell you how many times
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I've been given advice that started with variations of
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you should you need to
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it's time to ending with variations of move on
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get over it feel better by now
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so I'm sure that's resonating with a lot of people
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you know
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people telling us what we should or we shouldn't do
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and so I'm here to say there's really no timeline uh
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for grief it's gonna take as long as it takes
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and the truth is it's forever um
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we do come to a point and
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you know it's way down the road
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where we really learned to carry it with us
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the memory of that person becomes greater than
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almost the feelings of loss
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we always miss that person no matter what
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I still miss the person
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I talk about in the book when I was 13 years old
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but when I think about him now
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I can smile um
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in my husband's case you know
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I've been able to well
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do things in his memory support causes that maybe have
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you know or something that he believed in
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certainly I'm very big proponent of supporting um
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health related causes and people that support people
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whether they're care
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giving or experiencing a specific illness
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because in my lifetime I
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I talk about a loss that I had um
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39 years ago and in that was my sister
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and in
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uh since then and the last 38 years
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the illness that she had has come such a long way
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that something she was dreaming about
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a certain type of surgery was on
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in the National Enquirer back in like the 80s like
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you know Martians and uh
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kidney transplants is what it was and
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or I'm sorry
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pancreas transplants and so it was really like um
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you know science fiction and national inquirer gossip
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kind of made up news
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but she followed up on all of this and um
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nonetheless it was about 15 years ago
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and I'm watching the news
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and there's a 14 year old girl
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who just had a pancreas transplant
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and was off her insulin and so I'm thinking
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okay it's been like 15
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20 years and in that span
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because of maybe the donation I made
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or because of the walk I participated in
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whatever it is look at this
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this girl has a new life
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and it actually brought tears to my eyes
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and the tears really weren't for like
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oh too bad my sister didn't have that
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but it was more like isn't that fantastic
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how long how progress
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what progress has been made
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you know even in our community I
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I see it a little bit differently
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like back uh
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when my husband was diagnosed
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we didn't know a lot about genetic testing
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and I think that would have revealed a lot
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to us at the time but anyway
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back to the book so we talk about the grief timeline
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we talk about moving on getting over it and all of that
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and I wrote um
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conquering the myth of getting over it
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and I wrote I remember feeling relieved
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maybe even a little empowered
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when I realized that getting over it
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and moving on are not necessarily required
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I love that and I
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I like to say that
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you know I was so glad to know that
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because it helps me in the life that I have now
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you know he
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he's not gone or my mother's not gone
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their memories live on and this book
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the way I outlined it and in my experience I
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I continue to honor all these people in different ways
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that's the beauty of it you can take on projects
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like I said whether it be
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you know fundraising for a cause
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um or doing something in somebody's memory
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I yeah
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used to talk to some various community groups
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and cancer support organization
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about the benefits of their bereavement programs
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and things like that but I get up and I publicly speak
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so you know
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it's not that I have 10 million hours in the day
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it's that it was gonna help other people
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and so that's the inspiration for this book
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no matter where people are in the grieving process
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whether it's you know
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somebody just passed away
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or whether somebody's super sick
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and you don't know what's next
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the one thing I do want to acknowledge is
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you know as a caregiver myself
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there's a lot of grief throughout that process
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and there's a lot of um
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attachment like a roller coaster
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and that period
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during caregiving is very much like the grief path uh
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is that it's up and down or attached to um
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doctors visits you know
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what's he gonna say um
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that kind of thing so it is very up and down
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and the caregiver at
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doesn't always talk about disenfranchised grief
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when we're actively in the role
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sometimes people aren't really recognizing
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what we're going through
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because our whole focus is on that person
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and not I would have never had it any other way
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and I don't know anybody who wouldn't
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but in hindsight looking back
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you know I do realize none of it was ever about me
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so I remember somebody actually said to me recently
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she was talking about her mom
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uh faced with a cancer and then another uh
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very close friend of hers who's very sick
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and she was very upset with her mother
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because her mother wasn't doing the things that
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she feels her mother should be doing
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to get herself to be better
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to feel better and all of that
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um and I had a similar experience
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when we had an appointment set up with a researcher
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like in the 11th hour and my sister and I
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were ready to carry my husband into New York City
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and he said I don't want to go
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and so I said well
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you do understand if we don't go
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then you accept the diagnosis we got here
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at the local hospital he goes
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I understand that
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so relating back to the woman I was speaking with who
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you know her mother
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and she wants her to be doing things differently
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and taking better care of herself
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or different care or getting certain treatment
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and it just came out of my mouth
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but it was kind of profound
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you know I
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I said to her I loved him more than I wanted my way
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and I think caregivers can get that
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because you absolutely put so much of yourself
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into that person and I can look back and say
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I've absolutely no regrets
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and he's not the only person I've been a
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a caregiver to
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and I would do it the same way over again
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and so the thing to think about is that
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we do put them before ourselves
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but we think about what their needs are
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and what they want and honor that
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and so then turning that around to ourselves
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thinking about what we need and we want
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and at the end of the day
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you know this book says it's okay to grieve
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and you're gonna get to a point where
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you're gonna own it it's yours
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and so that's the message
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that I really want people to take away
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that yes it's okay to grieve
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uh yes
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there is light at the end of the tunnel
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it's not the light we want
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but it's the light we have
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and it there is light
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and the reason we get there is
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cause we've come to discover
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cause we don't have to let go
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we don't have to forget about that person
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and we don't have to move on
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so I hope this resonates with a lot of people
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oh I definitely think it will
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I think a lot of the things you've said
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whether you're the patient or the caregiver
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it's just that empowerment of these are my feelings
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and I'm allowed to have my feelings
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and I do wanna ask you your opinion on something
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when you talk about the grief timeline
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do you feel like the people who are telling you
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what you should do
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that it's more of their emotion coming into it of like
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you should be better by now
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because I need you to be better
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cause I need you to go back to being my friend
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the way you used to be
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do you feel like it's more coming
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from their external need
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than them realising your internal need
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does that make sense it's 100% makes sense
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um and
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you know it's exactly
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it's exactly what it is in part
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you know um
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I also find sometimes people don't know what to say
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or do or maybe they're just done with it like that
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you know it's time for them to move on
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one thing I do address in the book
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is how relationships can change
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and it's okay to let go of relationships
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you know cause somebody
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may not be there for you in the way that you had hoped
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I also talk about another concept interesting
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I call it the three month mark
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and so a lot of people I've spoken to
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they're like oh my God
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it's like before you know
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it's like a couple months later and where is everybody
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and um so I call that the three month mark
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uh whether that's a hard mark
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I'm not sure
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but I think there might be some credibility to that
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so what happens is you know
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people are calling in the beginning
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and all coming around in the beginning
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and then like I say
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like the lasagna's aren't coming as frequently and uh
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all of that and you suddenly find like
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where did everybody go
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so all ties into people maybe not knowing what to say
18:57
people liking it the way your relationship was before
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you are changed forever
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when you and when anyone goes through any kind of loss
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it changes you whether profoundly or in some small way
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you're definitely changed
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and so you know
19:14
people want it the way it was
19:17
it maybe won't be that way that way anymore
19:20
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we've talked about people saying
19:39
moving on or you need to be strong
19:42
and I wanna tell you what I think about the word strong
19:46
so when you think of strong strength
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you think of I don't know
19:51
going to the gym strength is
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you know
19:54
you do something building resistance to make you strong
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you equate that to grief resistance
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well what you resist persists and at the end of the day
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are you really facing your grief
20:06
you know people on the outside looking and go
20:08
oh you're so strong oh
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you know and you're thinking sometimes
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you know I'm ready to fall apart or you know
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and I tell stories where I like
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run off into an elevator
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just to get away from somebody
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so they don't see me burst into tears
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but one of the things that I found
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by being willing to go through
20:27
the road through grief
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or being able to face grief head on
20:32
is we discover something that has been in
20:36
ourselves already
20:38
but until we're it's really put to the test
20:41
do we even know what it is sometimes
20:44
and what surfaced for me was a phenomenon
20:48
which I call resilience
20:51
very different from being strong is being resilient
20:54
so we talked about resisting with strength
20:58
but with resilience we talk about bending and flexing
21:02
by going through grief by facing it head on
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it's not gonna be fun it's gonna be bumpy
21:09
sometimes smoother than others
21:11
but we develop this resilience
21:14
that suddenly becomes part of who we are
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it was always there
21:19
but it never had to surface to the degree
21:21
when you were faced with grief
21:24
or any challenge really
21:26
so that's one of the
21:28
the beauties of going through grief like
21:32
like I said you're gonna do it in your own timeline
21:35
in your own way you're gonna own it
21:38
and you're gonna become empowered with um
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the freedom that you have now to be able to grieve
21:46
and the resiliency that makes you a new person
21:50
it's been a lot of years for me uh
21:53
that I've experienced grief as anybody of any age
21:57
you know by the time you hit a certain age
21:59
sure you're gonna uh
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lose a lot of people
22:02
but I'm able to face it differently now
22:06
and it's more of that
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so I can remember when my sister passed away
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we were still pretty young
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and it was really hard to deal with that
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and I remember being you know
22:21
numb for quite some time I would say years until I
22:25
you know imploded
22:27
then I go many years later
22:29
my mother and I knew what was coming
22:33
my sister calls it anticipatory no
22:36
she calls it preemptive grieving
22:38
I don't know whether that's a thing but um
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there is anticipatory when you know
22:44
you know something is coming
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um but the other thing is more
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more so than that like with my mother
22:50
it was my willingness to be with her and willingness to
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to face it so
22:56
when we're willing to feel those feelings
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and be present to what's actually going on around us
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that's where we come out ahead
23:03
that's how we come out
23:04
as that new person that we always were
23:08
but you know
23:09
now faced with things that are more challenging
23:13
we come out more on top let's just say that
23:18
I love that yeah
23:19
no that's such a good way to look at it
23:21
because if you do bury it down and suppress it
23:23
and just pretend you're fine
23:24
because people tell you you should be fine by now
23:26
that's really just gonna manifest in your body
23:29
and cause you know
23:31
stress and maybe even physical health issues
23:33
we don't really know
23:34
like we just we know it's connected
23:36
but we don't know the exact science right yeah
23:39
so you don't wanna you don't wanna swallow it
23:41
because people are telling you
23:42
you need to and I love all of your points about that
23:45
and really empowering people that it's theirs
23:47
they can own it
23:48
I think that's the most important thing about this book
23:50
is that you're showing up for all of these people
23:52
and saying hey
23:53
I see you and it's okay
23:55
and it's what you're supposed to do
23:57
and yeah
23:57
for all the people that are telling you how to feel
23:59
that's not because that's how you're supposed to feel
24:01
that's because that's how they need you to feel
24:03
because they want you to be done with it
24:05
so they can go back to how it was
24:06
but like you said you can't go back to how it was
24:08
so I love all of your messages
24:11
I think this is so important
24:13
thank you thank you
24:14
yeah and I think that
24:15
you know grief has been kind of a taboo topic and
24:19
you know like you said
24:20
it's
24:20
it's becoming a little more acceptable to talk about
24:23
but it's still people get very uncomfortable
24:26
the first time anybody wrote or authored anything about
24:31
it's okay to grieve was probably around 2,017
24:35
and it was way after my husband died
24:37
so it wasn't a resource for me
24:38
and until I did the research on this book
24:42
it was already written
24:43
but I was backing it with research
24:45
did I even know there was anything else out there
24:48
that said it's okay to grieve
24:51
the difference between this book and another one
24:54
may be written by a psychologist or somebody else
24:57
is that you know
24:58
I really put myself out there very vulnerably
25:01
I tell stories about myself
25:03
and I could probably to some people
25:05
look like a loser in certain situations
25:07
or whatever it is but then
25:09
you know doctor so and so says this and so
25:12
you know the person reading it
25:14
maybe they had a similar experience
25:16
like one person was reading it
25:17
it's like she's going yep
25:19
uh huh that's exactly what happened
25:21
that's how I feel uh
25:23
you know and another woman uh
25:25
I know who so she was with her boyfriend for 10 years
25:29
and it was actually several years ago
25:33
he suddenly passed away and now
25:37
so it's like I think it's like seven years now
25:39
and she just remarried um
25:41
and she picked up this book and she said
25:43
I didn't even know I needed this book
25:46
I thought I was gonna read it and pass it to my friend
25:50
but it's the kind of thing that you go back
25:52
and you reread and she's reading
25:55
she goes I'm so angry at your neighbor right now
25:57
I must have been incident
25:59
my neighbor said I thought you'd be over this by now
26:01
I'm sure it was something like that
26:03
cause there's so much of that in this book
26:06
but anyway so what's nice is it is a companion
26:10
you can refer back to it and maybe at one point
26:13
you'll identify with the stories
26:15
at other points you might think boy
26:16
that Barbara she's really out there
26:19
but um again
26:20
the whole book it's anecdotal
26:22
I put myself out there it's on my sleeve
26:26
heart is on my sleeve and
26:29
you know while I don't wish those stories for anybody
26:32
if you do have similar stories
26:35
or you do have similar feelings
26:37
you know I want you to know that you're not alone
26:40
and there is a whole chapter by the way
26:42
you mentioned on health um
26:45
and there is a whole chapter on how it can manifest
26:48
in your body and it's wild
26:51
it's a wild ride it it is and I I totally agree
26:54
and I mean
26:55
there's so much talk about how your mental is connected
26:58
to your physical
26:59
and we've done episodes on it on this podcast also
27:02
that if you swallow that you're swallowing poison
27:05
so you you gotta process it and get it out
27:08
and it's so easier said than done
27:09
I mean
27:09
obviously we we can sit here and say that all day long
27:12
you know walking it's different
27:13
but don't be afraid of it
27:15
hmm right
27:17
exactly right
27:18
is there anything else I can answer for the group today
27:21
do you think or I think the biggest thing is
27:25
just giving that reassurance
27:27
that you are allowed to feel your feelings
27:30
and own it and carry it
27:31
I think it's just so empowering and I love love
27:34
love your whole message for our community
27:37
and I encourage anyone to go buy a copy of your book
27:40
or buy it for a friend because wow
27:42
I mean thank you
27:43
how empowering
27:44
we're gonna link everything in the show notes
27:46
so go ahead and tell us everywhere we can find you
27:49
sure and then I will link it all
27:50
so my website is w w w dot Barbara Hill author.com
27:57
and that will take you to the road through grief
27:59
a website uh with links to uh
28:02
Facebook hashtag
28:03
The Road through grief will get you to Facebook
28:06
Instagram is Barbara dot hill dot author
28:11
and you'll find me that way
28:13
I can provide you with a link directly to Amazon
28:16
which right now Amazon has an exclusive
28:19
exclusive arrangement with me
28:21
so it's available in paperback
28:24
in Kindle and also Kindle Unlimited
28:26
so you can just go to Amazon and search
28:29
the road through grief Barbara Hill that's so exciting
28:33
I will link all of that in the show notes
28:35
it's gonna be a a road a windy road through grief
28:39
and sometimes you're like
28:42
moving along and thinking you're doing great
28:45
and then suddenly you have a uh
28:48
a setback
28:49
and here I'm just gonna read you this one thing
28:53
so it's after some time had passed
28:55
I found
28:55
I was able to hold myself up in the face of deep grief
28:59
but then out of nowhere
29:00
just when I think I have my footing
29:02
a song a sound a scent a place
29:04
takes me down
29:05
and wipes me out as if no time had passed
29:09
kind of back to the beginning
29:10
like spiral staircase and you know yeah
29:14
back down like shoot and ladders
29:16
you know how shoots and ladders
29:17
that's actually reference down in this book
29:19
that's actually reference
29:21
shoots and ladders without saying shoots and ladders
29:23
it's in there um
29:25
and then
29:26
as I'm gonna share with you some of the final thoughts
29:28
I'm gonna spoiler alert
29:29
but it's worth the read if you know
29:31
this is the outcome one
29:33
there's no set timeline for grief
29:35
regardless of what someone may have told you
29:39
grief doesn't end and we don't have to move on
29:42
we never have to accept our loss
29:44
but we can learn to live with it through grieving
29:48
resilience becomes part of who we are
29:50
and can empower us in many areas of our lives
29:54
love lives on even after death
29:57
joy and grief can coexist
30:00
and grief doesn't end but neither does our bond
30:03
the memories can live on
30:06
I love it so much thank you so much
30:09
Barbara for being here
30:09
taking the time to talk to us
30:11
and thank you for telling us
30:12
so many of these wonderful takeaways
30:14
and I absolutely
30:16
encourage everyone to go buy a copy of the book
30:18
and tell us one more time the full name of it
30:21
the road through grief embracing love and loss
30:26
that's the perfect name I love it
30:28
thank you alright everyone
30:29
we will see you all next time
30:31
thank you so much for tuning in
30:33
if you feel compelled to buy a book
30:37
or go visit Barbara's socials
30:39
please check the show notes
30:40
they will all be linked there
30:41
please leave her a comment
30:43
a review anything like that would be lovely
30:46
and please follow all of our socials
30:47
you can find us on Instagram
30:49
Facebook um
30:51
probably most of the rest of them
30:53
and also go to our website acureinsight.org
30:55
there's a button up at the top
30:57
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30:58
we would love it if you do that
30:59
we send a monthly newsletter
31:02
that has all of the information
31:04
that we feel is important to the community
31:05
as well as some of their little tidbits
31:07
and then we also have a Tuesday night zoom meeting
31:10
please come and join that
31:12
we post the links on our socials
31:13
it's also on our website
31:15
and that's just a support group
31:16
it splits into two groups
31:17
regular and metastatic so
31:19
you can come and meet some other omies
31:21
and have some connection and until next time
31:24
we just wanna give you all the biggest thank you
31:26
and send you all a great big
31:27
warm hug
31:28
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31:31
because none of this would be possible
31:32
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31:34
they're so gracious to
31:35
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31:38
so please tune in for our next episode
31:40
and we will see you all next time