58: Top 3 Episodes - #1 - Grief and Gratitude in Our Limitations: Jeff and Marilyn Bills Share an Update on Jeff's Eyesight.

Hello Listeners! In celebration of the new year, we're looking back to our top 3 episodes that you downloaded and listened to the most in 2023! We'll be back with new content on January 22 - until then we hope you enjoy re-experiencing these wonderful stories of HOPE or experiencing them for the first time! Here is your number one downloaded episode: Episode # 11 - Grief and Gratitude in Our Limitations: Jeff and Marilyn Bills Share an Update on Jeff's Eyesight.
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This week on the podcast, Pastor Jeff Bills and Worship Director Marilyn Bills share an update on the latest changes to Jeff's eyesight including new accommodations and the new opportunities that come with them. Whether you want to learn more about Retinitis Pigmentosa, or are looking for encouragement with areas of limitation in your own life, today's episode is a very special interview we hope you'll learn something new about faith and hope from. 

NOTES & RESOURCES:

More information on Retinitis Pigmentosa: https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/retinitis-pigmentosa
The Seeing Eye Organization: https://www.seeingeye.org/
2 Corinthians 12: https://www.bible.com/bible/111/2CO.12.NIV
You Version Bible App: https://www.youversion.com/

Thanks for being a part of the HOPE community as we continue conversations about faith and hope! You can learn more at meethope.org or find us on socials @meethopechurch. Join in for worship on Sundays at meethope.live! Have a question? Contact us at podcast@meethope.org.

Transcript

Speaker 1: 0:01

Hello listeners, in celebration of the new year, we've been looking back at our top three episodes that you downloaded and listened to the most in 2023. We'll be back next week, on January 22, with new content, but until then, we hope you enjoy re-experiencing these wonderful stories of hope, or experiencing them for the first time. Here is your number one downloaded episode, episode number 11, grief and Gratitude in our Limitations. Jeff and Marilyn Bills share an update on Jeff's eyesight.

Speaker 2: 0:36

Welcome to the Meet Hope podcast, where we have conversations about faith and hope. Hope is one church made of people living out their faith through two expressions in person and online. We believe a hybrid faith experience can lead to a growing influence in our community and our world for the sake of others. Welcome to hope.

Speaker 3: 1:02

Well, hello everyone. Welcome to another episode of the Meet Hope podcast. Hello to all of our listeners, glad you're here. My name is Rick, I'm today's host and I am here interviewing with Jeff and Marilyn Bills. Hey, hello, hey, good to see you guys, good to be with you. Yeah, and this is a special edition. We're excited, I'm excited about this. Jeff, you wanted to share an update on your eyesight.

Speaker 4: 1:26

Yeah, I did so a number of years, actually, over 30 years ago now. I was diagnosed with retinitis pigmentosa, and so it's this degenerative condition that is in the retina of the eye. It's a kind of pigment, that's the pigmentosa part that forms on the outer rim of the retina, and over time it moves toward the center of the eye and it restricts field of vision and it affects my ability to process light. So, yeah, I had no idea that I had this condition until I was in my 30s and had I didn't think I had any symptoms of vision until we, you know, as we're at it later, as we were thinking about it and I was thinking back over the few years before you were diagnosed, realized that you were having trouble seeing at night.

Speaker 5: 2:32

There was a where we were living at the time. There were steps leading out of the back door that were white and you would say you couldn't see the steps and I was like how can you not see the steps? They're white.

Speaker 4: 2:42

And I thought you just had amazing eyesight. So yeah, I had gone to for a regular eye exam and the ophthalmologist said something about this retinitis pigmentosa. I had no idea what he was talking about and then I went to a specialist and found out that I had this condition. The good news for me was it was a very slow progressing form of this disease In some cases. In many cases it's much more aggressive and causes total blindness in children and teens.

Speaker 5: 3:20

The fact that you weren't diagnosed till you were in your 30s is why it's such a but he called a light case. Yes, yeah.

Speaker 4: 3:28

But it is progressing and so there's just been realities that, along the way that we've had to deal with, yes, let's talk about some other realities, so.

Speaker 3: 3:39

I know you've been addressing this for decades, but it has had an effect on some day-to-day things in the Bill's home. So what have you done, Marilyn?

Speaker 5: 3:49

Yeah, so at home I think it's been gradual, so it hasn't really been. It hasn't been a disruption, but it's been simple things. We can't leave things in the middle of the floor. Take your shoes off. You put them to the side. We don't change furniture around.

Speaker 4: 4:06

I'm not sure, mademmy.

Speaker 5: 4:07

Yeah, there we go we discovered a few years ago that we were starting to lose a lot of glassware. Because he couldn't see the glass and he'd go to reach for something and the glass would go flying Right.

Speaker 3: 4:19

He didn't know it was on the counter.

Speaker 5: 4:20

So we discovered that, a blue-tinted glass he could have had more of an opportunity to see, so we just changed out all our glassware as those kind of things, Contrasts are really helpful. So dark and light, so we have light-colored dishes on a dark table.

Speaker 3: 4:36

And then you also. Jeff, said that there's difference in Depending on the room you're in. It can be right Because of the light that comes into the room.

Speaker 4: 4:43

Yeah, so the photo processors in the eye are damaged by this disease and any change of light. So if I come from outside to inside, I'm in complete darkness for a period of time, while my eyes A healthy eye just in an instant, you don't even notice it. A lot of times For me it's not that way, right? So one of the ways that and I've talked about this Last time I talked about this disease with the congregation I mentioned that in the lobby with all of the glass on a sunny Sunday morning, I am really all I'm seeing is shadows. I can't see any features of people's faces or anything, just shadows, and so that's one of the realities of it for me.

Speaker 3: 5:37

Right, and then you also said that you're Depending on the day. You'll have better days and worse days.

Speaker 4: 5:42

Yeah there are good vision days and bad vision days, or sight days and so a bad sight day. I feel like my right eye is not seeing anything at all and everything's very much in glare. And a good day. I have a wider field of vision and a little bit less glare.

Speaker 3: 6:04

And so this is all leading to some changes, some adaptations that we're making, and tell us what one of those is? Tell us the first one.

Speaker 4: 6:13

So and we sent out an email end of last week video that I talked about this a little bit. So I have been working with a specialist, an orientation mobility specialist, since about 2019. Around 2020, she introduced me to the guide cane, so it's that red and white cane, and so that was kind of shocking to me to have that tool and I didn't use it.

Speaker 5: 6:53

It sat in the corner for a long time, yeah that took a while to get around to.

Speaker 4: 6:59

I started using it when we were on vacation, primarily.

Speaker 5: 7:04

Yeah, what I have livingly called myself his seeing eye wife, and what I've discovered is, when we're in crowds, to navigate him in a crowd is very difficult because people don't realize why we're going so slow and not trying to be mean. They just crowd in because people are impatient to get from point A to point B. When he pulls out his cane, it is like the parting of the red sea. And so I've gotten to the point. Now, if we're in a crowd, and we're especially in a place where we're not familiar, I've gotten to the point I am not going with you unless you bring the cane.

Speaker 3: 7:39

So we have you to thank that he's. Finally, accountability.

Speaker 5: 7:43

Yeah, there we go.

Speaker 3: 7:45

So that's one tool. Now there's another. Change that one of the things I want to just say about that.

Speaker 4: 7:50

So over the last several years I have become more and more comfortable with, with I don't call it a cane because I don't use no stink and cane.

Speaker 4: 8:04

The stick it's my stick, and so it's to the point now that that it's really hard for me to move around, even on a Sunday morning, and and I just feel awkward, I feel uncomfortable, and so I'll be using the stick on Sunday mornings, and so that was part of what led to all of this hoopla around the. My site again is just introducing this new piece of equipment.

Speaker 3: 8:35

Right that you'll be using on Sunday mornings.

Speaker 4: 8:37

On Sunday morning We'll see you with it. Yeah, something on the platform.

Speaker 3: 8:40

Right, but something at staff that we've seen you use and so, but it's just another new level.

Speaker 4: 8:46

You got it.

Speaker 3: 8:46

Right, and now it said the other one, now that the staff is pretty excited about. I have to tell you there's been a lot of chatter about this oh good. Another tool that's got there's possibility. Yes, that. What else are you introducing?

Speaker 4: 8:59

Yeah, so about a year ago I started looking into seeing eye dogs or guide dogs and initially didn't think it was for me, but I continued to do some research and and your eyes continue to get worse and my eyes continue to get worse.

Speaker 4: 9:16

Yeah and began to understand how the stick works. What the stick does is it tells me when I've come to an obstacle Right, and then I have to figure out what that is and how to navigate around it. What a what a seeing eye dog does is it sees that obstacle before you get there and it leads you around it.

Speaker 1: 9:36

So you can continue to make progress.

Speaker 4: 9:39

So I made an application with an organization called the seeing eye. They've approved me into the program and so it's an ongoing process and it could be as long as a year before I would actually be paired with a dog. Okay, but it's, it's pretty extensive, if you know. I continue in the process. Ultimately, I would go to that facility up in Morristown they have a, they have a campus there and I would live with the dog in in that space for three and a half weeks. Wow, so it's a highly trained dog. It's a totally untrained human.

Speaker 3: 10:23

Yeah, yeah. So the dog is probably been through a couple of years of training and kind of bringing you along to train you, in a sense.

Speaker 4: 10:30

Yeah, and and developing this partnership and it's fascinating. If we get further along in this process, we'll do another podcast.

Speaker 3: 10:38

Well, I want to come up there with the dog and interview you and the dog Awesome, so yeah. So this, you know this is a podcast about faith and hope. You both know that. So where are you and Marilyn? You, let's have you go first when are you both finding hope today?

Speaker 5: 10:54

I guess I find the hope in when I think back on. When he was first diagnosed, my first thought was we can do this. This is not. This is not a death sentence. We had just gotten through cancer. You know this. This is not cancer. So we will keep adapting our environment and we'll keep finding ways to keep Jeff as independent as possible so he can continue to do what God has called him to do.

Speaker 3: 11:23

Jeff, how about you?

Speaker 4: 11:24

Yeah, so you know and I knew that was part of this podcast I've been thinking about that and was drawn to 2nd Corinthians, chapter 12, and Paul was talking about his thorn in the flesh, and scholars have speculated on what that thorn was for millennia and and actually there's even one theory that it could be eyesight, because we know that Paul struggled with some things with his eyesight. But in that passage he says that he prayed three times that the Lord would remove that thorn of the flesh and and each time the Lord spoke to him and said my grace is enough for you, and in your weakness you see my strength. And so I realized that that hope is not about happiness, it's, it's really this kind of overcoming and looking ahead. And so this process one of the ways I've described it it's a series of experiencing both grief and gratitude.

Speaker 4: 12:33

So there's been this constant series of losses, losing things I love to do, have done for my whole life or part of my life, that I can no longer do, and so there's a grief in losing that, but then a deep sense of gratitude that I still have some vision. I had vision in raising my boys, so there weren't limitations, significant limitations, when I was raising my boys so I could be fully engaged with them. So so many things that I'm grateful for. Grateful for Marilyn and for her spirit in this and her support in this. Grateful for the amazing staff and friends who support me through this. So that's my hope, just seeing God's strength in my weakness and this tremendous support network.

Speaker 3: 13:32

That's great. You mentioned limitations, and there are limitations and we've talked about some of those. But, marilyn, can you speak to what are some of the limitations that you have seen or how not limitation how you've adapted to those things that are changing?

Speaker 5: 13:47

Yeah, I guess I have trouble answering that, because for me it's just opportunities. So I tell the staff and volunteers in the worship space on a Sunday morning, just watch where he's struggling and then we'll find a way to adapt it. So we put stripes on the steps so you can see the steps. We put white tape on the back of chairs so you can find the aisle when there's a communion of baptism. We walk him up on the platform and show him where everything is on the platform before the service starts.

Speaker 5: 14:19

So it is. It's forever changing, so what works today might not work next week, but it's just another opportunity.

Speaker 4: 14:29

And Jeff for you. You, how blessed am I right? Yeah, so the way I. The biggest thing for me is independence. So it's that loss of independence when I could no longer drive, that was. That was a big loss, although that had been. It wasn't like I was driving freely one day and then couldn't drive the next day. It was I was driving less and less over the course of a couple of years, and reading has become a little more difficult for me, and so computer work has become a little more challenging.

Speaker 4: 15:11

And so those are some of the some of the ways.

Speaker 3: 15:14

But there's so many opportunities right, like with audible right. For book reading right and the way and you can read the Bible as well, right?

Speaker 4: 15:21

Oh, thank goodness for you, you version.

Speaker 3: 15:23

Yes, I couldn't Sorry, I lost it for a second. Yeah, you version.

Speaker 4: 15:27

That's why I read that, because you know, I listen to the scriptures being read now and it brings them alive in a different way. So I've read the Bible my whole life. Now I'm having it read to me and so in that way it's, it's an, it's open it up in a new way, it's a whole new way.

Speaker 5: 15:43

It's a whole new thing, which is how most Christians heard those letters read the first time anyway.

Speaker 3: 15:47

True enough True.

Speaker 4: 15:48

That's right.

Speaker 3: 15:50

So how was your so talk to talk about your day to day at hope? Has that changed and how has it changed?

Speaker 4: 15:57

Yeah, and again, this is all gradual and so things have been changing and and again I bless with great support and the staff and so forth. So things like weddings, you know, because most weddings are offsite anymore and so that's difficult because I'm now in an unfamiliar space and I'm being asked to lead folks in a wedding, funerals, similar kind of thing. So you know, adapting to that, I do less of them and which is OK because I've got great support and Heather and and Pastor Dave are able to do those things. When I can't, or if if I'm going to do it, somebody, some member of the staff where Marilyn goes with me to help me navigate, navigate through that.

Speaker 4: 16:58

So yeah, those are. Those are the primary ways that it's challenging. Some folks have asked about preaching and, and do I have to memorize my sermons? And I can still see the computer screen when I'm up there. I've got very large font and so forth. So so I do have some prompts, but I do memorize a lot more than than I used to. Yeah, Now.

Speaker 5: 17:26

I'm getting smarter.

Speaker 3: 17:30

So you know there was a moment on staff retreat recently. I think it was in just this last year's staff retreat. You want to share that.

Speaker 4: 17:37

Yeah. So you know, I never want to be a hindrance to the ministry year and I have felt that way from the very beginning. I have prayed to God consistently over the 30-some years Lord, don't let me get in the way of what you're doing here. And so, just dealing with this condition and some of the limitations that it causes, I was sharing with staff at last year's retreat my struggle with that and my concern about that and what was said to me at that meeting which was so powerful for me and touched me deeply and also gave me some insight in this process. So it was said hey, we don't need your eyesight, we need your vision, and that's been something that God has used in me over these years, this kind of visionary leadership. So it was just an affirmation that what I bring to this ministry is still valued, despite the limitations and handicap of my sight.

Speaker 3: 19:01

I was there and I thought it was a great moment. I think it did help as a staff for us to speak into your life, and so I'm glad that we could share that here in the podcast.

Speaker 4: 19:12

Yeah, me too.

Speaker 3: 19:15

It was a good moment, tender moment. So how can others people that run into you in the lobby see you in the lobby on Sundays? How can we be helpful to you?

Speaker 5: 19:25

Yeah, and Marilyn, you kind of help with this a lot, so yeah, I think the best thing that people can do, especially out in the lobby, is assume that Jeff doesn't know who you are. Assume that he can't see you and so, as you're approaching him, it's okay to say hey, jeff, this is Marilyn, how are you doing today? And then ask whatever question you want to ask If you're sticking out your hand to shake his hand, assume he can't see it.

Speaker 5: 19:52

So, sometimes I will see someone like put their hand on his shoulder as they're sticking out their hand, and that's sometimes a cue that a hand is coming. But don't be offended, just know he's not snubbing you. He really, he truly cannot see you. The other thing that we noticed we were just away on vacation it was this was a new aha for me. Like oftentimes, people will ask him a question but he doesn't even know he's being asked, the questions being right directed to him.

Speaker 5: 20:24

And so the person will ask me a question. He doesn't respond. And then they look at me like, oh, he must be deaf too. And then they start talking to me instead of him, and so it is that. Just it's okay to say hey, Jeff, this is whoever you are.

Speaker 3: 20:37

Right, yeah, the cues are just a little bit different.

Speaker 5: 20:39

That has to be verbal verbal or physical. Yeah, right, and very intentional very intentional, that's a good word, yeah.

Speaker 4: 20:46

Yeah, and I think the other thing I would say in terms of help is I know this can feel awkward to some folks like, well, I don't know how to approach them now and I don't want to say the wrong thing and all of those concerns that we would normally have, and I would just encourage you to not be to give into that, like you're not going to say something to me that I'm going to take a fence at, and unless you intend to, but yeah, like once you kind of get over that initial I'm not quite sure how to approach this guy and just do it, you know, then it's all good and we can go from there, and so that's my concern is that people will feel awkward, awkward, yeah, and I think if you have young children, children are naturally curious.

Speaker 4: 21:46

Yes.

Speaker 5: 21:46

You know. Talk to your children, let them know. Yeah, this is. This is what Pastor Jeff is dealing with. It's even okay to go up and ask Pastor Jeff about his stick. Maybe suggest some names for the stick.

Speaker 4: 22:00

We had a guy on the boat who was he was on the staff there and we were like we were on a cruise, and so one of the one of the guys on the cruise came up and said, how does that work? Asking about the stick, and so I would begin to describe it to him. Hey, could I try it?

Speaker 5: 22:20

Just rip the stick out. Just to answer. I'm walking around with this I think he expected the stick to talk to him Stick did.

Speaker 3: 22:26

Yeah, it's a magic stick. Yeah, that's great.

Speaker 4: 22:30

So if your kids would like to try the stick. I'd be happy to have them.

Speaker 3: 22:33

That's great. Yeah, hey, listen. Personally, I want to thank you both for being a part of this podcast. Thanks for sharing these things, you know, because what I find so important is that here at hope, we say it's okay to not be okay, yes, and I think this is an example of you sharing what's going on in your life and it provides us a way as a community, to to be supportive to you, to each other. You know that, being upfront about our limitations, we all have challenges.

Speaker 3: 23:02

We all have things going on our lives, whether it's spiritual or emotional or relational, and so when we can be upfront with each other, I think it just makes it makes a community healthy Really.

Speaker 5: 23:14

And there's the hope.

Speaker 4: 23:15

You ask where the hope in this is.

Speaker 5: 23:17

There's the hope is yeah, yeah, yeah.

Speaker 4: 23:20

We want to be there for each other. I know people want to be there for me, and, and that is such a gift and I want to be there for folks as well. Rick, you do, and Marilyn, and, and, and so you can talk about the things that you may be struggling with, like you said, whatever area of your life that might be, so that we can come alongside and we can support you, and so that's been the story of hope for 32 years and, and I'm living it, so yeah, well, thank you.

Speaker 3: 23:49

Yeah. So thank you, jeff, thanks Marilyn and thank you. Thank you, listeners, and be sure to check out the show notes If you'd like more information, that we have links there for retinitis pigment Tosa as well, as you can check out the seeing eye dog excuse me, the seeing eye dot org. Seeing eye dot org. There you go, thanks. Have a great day.

Speaker 2: 24:13

Thanks for being a part of the hope community as we continue our conversations about faith and hope. If you don't already, please join us for worship on Sundays or on demand. You can learn more at meet hope dot org or find us on socials at meet hope church.