Volunteering After Vision Loss

Hadley

Volunteering and Vision Loss

Presented by Ricky Enger

Ricky Enger: A desire to help others doesn't change just because your vision does, but you might have questions about how to make it work. In this episode, Char Cook and Linda Jenkins join us to discuss volunteering with Vision Loss. I'm Ricky Enger and this is Hadley Presents. Welcome to the show, Char, Linda.

Linda Jenkins: Thank you.

Linda Jenkins: Thank you so much. I enjoy being able to be part of this.

Ricky Enger: Yes, I'm happy that you both volunteered to join us. So, I am so excited to learn more about each of you and your journey with volunteering. I think it's going to be a great time. So, to get us started, why don't you each just tell us a little bit about yourself, as much of your vision loss journey as you're comfortable sharing. And yeah, we'll start there. Linda, we'll start with you.

Linda Jenkins: Okay. I think I began volunteering when my mother set me up. Let's put it that way. I was, I think, 14 years old and she said, "Oh, there's some people in a men's shelter and they would like to meet you and they'd like your help." And I said, "Wow, that would be great." Then when I was 16, I became a candy striper at the hospital, and I did that for a while. Most of my life I was fully sighted and I did volunteer and my family volunteered at various places, but normal community things. I was not diagnosed with RP until I was 50 years old. Once I was diagnosed and I had already given up driving and things like that, that's when I really had issues that were based on my not being able to see anymore.

Ricky Enger: So, volunteering seems like it has always been a part of who you are, even though your mom may have set you up, but you didn't have vision loss as a part of this until much, much later. Char, I think your approach was a little different. So, tell us about you and your background and when you started volunteering.

Char Cook: Thank you. Well, I also have RP, Retinitis Pigmentosa, and I started to lose my sight when I was seven, but I lived pretty unhappily for some years until I found that I could be happy and blind. And my first introduction to volunteerism was I heard a radio announcement in Portland, Oregon, and they were asking people to volunteer to man a Metro crisis line. And I wanted to do that so bad. And I went to the interview and they liked me okay, but they said someone blind couldn't possibly do this. And I said, "Give me a chance." So, I was able to do that. But what changed me was during the training to be a Metro crisis line volunteer, they did a training on talking to people who are depressed. And the thing that changed me was they said a main antidote to depression is to reach out to someone else and do something for someone.

That changed me and that began my journey with volunteerism.

Ricky Enger: Wow. That is so incredible. I mean, being inspired by something like that that spoke to you on a personal level and I think really changed how you approached a lot of things, no doubt. So, you were always either fully blind or maybe you had some vision at some point, but regardless, you kind of didn't have to think about volunteering differently from the beginning and then as you proceeded with vision loss. Whereas Linda, you did. So, you were losing your sight much later in life after you'd already done some volunteering. So, did that affect how you thought about, can I volunteer? Will I be able to do this? How's any of that going to work?

Linda Jenkins: What's interesting is the one thing that Char and I have in common is that I volunteered at a crisis telephone service and I did that for six and a half years. And the nice thing about it is that even though I was losing my vision, I was not able to see people or their reactions because it was on the telephone. I knew that I could just talk to people on the phone. So that was kind of an introduction for me that I didn't have to see in order to be able to provide that volunteer service.

Ricky Enger: And then as you were thinking about different ways to volunteer, Linda, so maybe as you're approaching retirement, that kind of thing, or you're just kind of looking at what am I going to do after I stop working, what were you thinking about how or whether you even could continue to volunteer?

Linda Jenkins: What's interesting about that is that about the time that I was going to retire, I had always thought in the back of my mind that I'd like to volunteer at the hospital as an adult and retired person in the pastoral care department. I'm not sure whether you're familiar with this, but some hospitals and congregations of churches or synagogues or temples have what's called a pastoral care Stephen Ministry program and I wanted to do that. But the closer I got to retirement age and the less I could see, I just thought I'm going to have to erase it from my bucket list. Luckily, I had some good friends who were saying, "What are you doing? Why can't you do that? " I said, "I can't see." And I happened to know that a lot of being able to communicate with people one-to-one is based on body language and expressions and things like that.

And I was like, "No, I can't do that anymore." And so, they basically, I'm going to say, factored me. Let's just do this anyway, just try it. So, I did go through the training, and I passed and for over eight and a half years, I volunteered at least one day a week at the hospital visiting patients. And I did discover that volunteering gave me some structure and purpose because I thought as I was losing my vision, I'd have to drop out of an awful lot of stuff.

Ricky Enger: Yeah. And what a relief I'm sure to find out that's actually not the case. You can continue to give back in a way that really feels authentic to you, and it didn't turn out to be as big a deal as you thought that you couldn't see. For Char, when you are thinking about volunteering, what is that process like? We all know that sometimes people are a little bit reticent to let us do things that we think we can do, or maybe it's a situation where it's not clear initially, how are you going to do this as a blind or low vision person? Can you share some things about that, Char?

Char Cook: Absolutely. And I have found, and this has been a thread through my life that I have always been looking for opportunities to do things, whether it's recreation or whether it's something that we would do as a couple or as a family, I've always just been actively looking. And so that has been a carryover to what can I do for someone else? I have found that I recognize an opportunity for myself sooner than someone else would reach out to me and say, "Would you like to try this? " For me, it's been a matter of keeping my doors and windows open and hearing about, "Oh, I think I'd like to try that. " Or "I think I'll call them and see." And then people might say, "But how can you do that with vision loss?" And my answer is, "Let me just tell you about technology or let me tell you about my background with people or food or whatever it is, but I've generally brought to the table my own solutions.

Ricky Enger: And Linda, what about you? What are some practical things that you kind of figured out along the way, whether it was, okay, I've got all these patients to visit in the hospital, how am I going to know what their situation is or transportation getting there or just any of that stuff? What have you figured out along the way that has worked for you?

Linda Jenkins: Well, luckily I have a friend who volunteered at the hospital also and she said, "Well, I'll come pick you up. I'll bring you home. It doesn't much matter." And I said, "Are you sure?" She said, "Yeah, that's fine." I did get the list of patients that were in the hospital each day and I made decisions as to who I wanted to see and who I didn't want to see. And of course I use the word see in quotes, but anyway, but I have Victor Stream, so I would record the room numbers and the names of people that I'm planning to see. The other way I got to see people is as I got to know the staff at the hospital, of course I'm walking up and down the hallways and checking room numbers and things like that. I would have somebody say, "Hey, Linda, can you see somebody in room number such and such? I think she would really enjoy getting to know you. " And I said, "Sure, that was fine." And it turned out that maybe that person actually had a friend or a family member or herself was losing her vision and I was able to provide some resources and encouragement and empathy and acknowledging that I've been there too, I understand that. So that was pretty good.

Ricky Enger: So, it sounds like that was a lot of connecting with people and as you connected with one person that enabled you to connect with yet more people and it's just something that kind of builds on itself, which is what a beautiful thing. So, I think that both of you are actually still volunteering. This is a really important part of your life and presumably that means that it is doing something for you. It's giving something, it's adding some value to your life. Char, can you talk about that a little?

Char Cook: I would so love to. So, I've done a few things through the years, but probably my all - time favorite is when COVID started in 2020, my sister said to me, "We have to do something. We have to help people. " So, the two of us decided that we could make homemade soup. I am blind, she is not. I make the soup, she has figured out the list, arranged the drivers for delivery, things like that. And we've been doing that either together or I've been doing it solo since 2020. And there is something about handing someone a quart of soup that fills you up on the inside and to this day I'm looking closely at retirement soon and I find sometimes I have a little too much time on my hands. I go into the kitchen, make a pot of soup, two or three gallons, and give it away to people I know that could need that.

That has enriched my life emotionally, socially, physically and I hope to do that as long as I can. It's just something that's not a big thing but big to me.

Ricky Enger: Wow. Kitchen therapy and volunteering. What an incredible combination. I love that. And Linda, what does volunteering bring to your life? What do you get out of it?

Linda Jenkins: Yeah. Just listening to Char, I understand that it gives me structure and purpose in life. I must admit, when I started to understand that I'm definitely going blind, I could no longer cover it, let's put it that way, I went through some depression for a while and then had people reach out or I reached out and things just happened. At one point we had something, I believe it was at our church or in the community and I said, "Is there something I can do to help?" They said, "Well, can you dry dishes?" I said, "I sure can. " Well, I got to meet some other people washing, drying, sanitizing things and all that. And then people got to know me and knowing that I was available. So even Char was mentioning her sister was calling people. I got to the point where people would say, "Hey, can you call these 10 people and invite them to come to this? They have email, but we're not sure that they really use it as much as they can. " And I said, "Oh, sure, I can do that."

So, from time to time, I met different people in different ways and that was so important to me. That's almost saying it gave me structure and purpose in my life, and it was affirming then to me that I was not useless anymore. I could provide some things, and I still continue to do that. Some people at one point I had called my eye doctor and she said, "Hey, I have an opening on a patient family advisory council. You'd be perfect for that. We do it with Zoom. Would you be interested?" And I said, "Sure." Well, that was 15 years ago and I still do that. Another thing is that I knew somebody who was involved with one of our preschools in the area, private preschool, and they said, "Hey, we need somebody on the board. Can you join that? " And I eventually filled an entire term for six years and I became the chair of that committee. And it's amazing with technology that I could do agendas, I didn't do the minutes, but somebody else did, but it worked out really well and we became friends and that is just so important. So, at this point in my life, a couple of things have rotated off at this point, but for the most part I'm really happy and satisfied. So, they're the kind of friends that I would not have met had I been volunteering in the past, but that have maintained friendships all along.

Char Cook: And Linda, don't you think that being with people just normalizes who you are and how you do things?

Linda Jenkins: Absolutely.

Char Cook: And then the people around you just say, "Oh, this is Linda. She does this and that and this and that. " And blindness then becomes on the back burner.

Linda Jenkins: Right. I am not defined by my blindness. I'm identified as a friend.

Ricky Enger: It's such a nice change from feeling like you can't give back to then just being an integral person to what is happening and people are calling you up and inviting you to lunch because you're a friend now. So, for both of you, you've probably been in a situation where someone has told you or implied, "You can't do this, you can't volunteer." Or at some point you've thought it yourself.

And I know there are people listening who are thinking that right now, "I don't think I can do this. " What would you say to someone who's having those feelings that, "I can't volunteer. I want to give back, but I can't." Char, we'll start with you.

Char Cook: I want to say to every person listening who has vision loss, you have value and there are things in your life that you do, and you do well. And to start with that, recognizes that that's part of this world is the value you bring. You remember people on their birthdays you never forget to call them. Could it be you at the church you go to, you could be on the greeting committee, or you could teach Sunday school, or you could go to a neighborhood block party and bring your best dish of baked beans. Because you're recognizing the value you bring and the talents build on those because you have them and recognize them and then build on those to reach out and spread your sunshine.

Linda Jenkins: I absolutely agree with you 100% and it's so interesting that you talk about even like a community or the church or whatever. I don't want to say it has nothing to do with volunteering, but it has been part of my connecting with people. At some point I was taking the Hadley course on braille, and I decided I was going to braille onto a little three by five card a couple of the kids' names. It was practice for me and they just loved it. I mean, one kid had folded it in half and said, "This is my badge." And I found out that he is now 14 years old and he still has that.

And I said, "Josh, you want me to redo it? " He said, "Probably. Yeah. " But with that, the children were comfortable with me much more than their parents were. And what's funny is it's like, "Mrs. Linda, can I give you my right elbow and I'll take you here?" And I'll say, "Oh yeah, that would be great." So, the kids became comfortable, families became comfortable. I became comfortable and that's just kind of a natural community that has developed for me. But anyway, I'm glad you brought that up, Char, because I agree with you 100%. Yes.

Char Cook: Thank you. And I teach Sunday school. My kids that I teach are two years old and I’ve been teaching the two-year-old children for 40 or 50 years maybe. It's exactly what you say. The parents become very comfortable because the children are as comfortable as can be. And then for the rest of our lives, as I see the children grow or their parents, "Hey Char, it's Linda. How are you? Remember when you were my teacher?" That has filled my cup up to overflowing as well. Label my books in braille and send out letters saying, "Remember when you see me, don't forget to speak." All the things you do, which normalizes blindness and then you're part of a community and of course doing something that you love to do.

Ricky Enger: I have the biggest smile on my face as I'm listening to both of you because that's how it happens is you become known to one set of people. And I think that's important. So, this has been even beyond my expectations, and they were really high to begin with. So, wow, thank you both so much for sharing your wisdom and your stories and it's just been incredible. As we wrap up and I think each of you has alluded to this a bit already, but if someone is thinking, "Okay, I really want to volunteer, and I just don't know where to get started.” How can people think about this in order to discover what those talents might be or something that they could at least reach out and try? Char, we'll start with you.

Char Cook: I think the best way is to think about what you would like to do. When I responded to a radio ad where they were asking for people to volunteer on a Metro crisis line, I knew I would like to do that very much. I started there. So, I would say if you don't like talking to people, then that's not what you want to do. Maybe you like being in the children's ministry or maybe you like going to the neighbor's house when they could use some cookies, something like that, go with what you know and like and then reach out from there.

Ricky Enger: Linda, what about you?

Linda Jenkins: Think about what you enjoy doing, just like Char's saying, what you enjoy doing and look at your strengths and get with your friends, people who you're close to or even not close to, but just say, "I'm at a point in my life where I'd like to have some more involvement in the community. Do you have any suggestions?" Now the thing about asking your friends is they know you maybe even too well. They know what you can do, what you can't do and they can say, "Wait a minute, why don't you follow up with this?" And they also know your quirks and that can be a benefit. I have been told I have kind of a quirky personality sometimes and that suits me really well with people, but people have given me ideas. It's like, "I never thought about that." And it connects you with your friends even closer.

Ricky Enger: Yeah, just letting people give you some ideas and then being willing to think outside the box yourself. I like how neither of you started with think about what you can do because that already might feel a little bit limiting. You may not know what you can do. It's more, what do I like to do? What do I wish I was spending my time doing? And I think that's such a great way to frame it and you're likely to find something that works for you. Thank you both so much for spending a little time with us. I know people are going to appreciate hearing your stories and your thoughts about how to go about volunteering. This has been amazing.

Linda Jenkins: Ricky, thank you for letting us share.

Char Cook: Thank you very much.

Ricky Enger: Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at [email protected]. That's P-O-D-C-A-S-T at HadleyHelps.org or leave us a message at 847-784-2870. Thanks for listening.