Managing the Holidays with Vision Loss

Hadley

Managing the Holidays with Vision Loss

Presented by Ricky Enger

Ricky Enger: The holidays bring fun and fellowship and, let's face it, a little bit of stress. In this episode, we share tips on confidently managing holiday gatherings after vision loss. I'm Ricky Enger, and this is Hadley Presents.

I think most of us approach the winter holidays with this really interesting mix of excitement and dread. I mean there's a lot going on. There's going to be family and friends that you haven't seen in a while. The daily routine is just totally out the window. Everything gets complicated. If you're trying to figure things out and you're adjusting to a change in your vision, or maybe you just know that certain aspects of these gatherings are going to be tricky to navigate for you, that adds this whole new layer of stress to something that's actually supposed to be fun.

So over the years, we've had some really awesome guests on the show, and they've been in exactly the situation. They've managed to pick up a few tips along the way that they've been really gracious to share with us.

So what we'll do is just pose a few of these common challenges that maybe you're thinking about or you're dealing with right now, and then we will share those tips from our guests for how to get through that stuff with a little less stress. So before you even get to a gathering, there are some things that you can do to set yourself up for success. So here is Hannah with a few thoughts on that.

Hannah: The bigger the gathering, the more visual communication gets. People will make eye contact, they wave, they smile, they point to where they're going to meet. It's all about seeing, and, of course, we can't do that. So with big gatherings, you have to prepare. The less sight you're left with, the more you have to prepare.

So what you do is you're going to call, first of all, the host or the place where it's going to be, and you're going to get lots of basic information about the type of event, where it's going to be held, whether it's a sit-down meal or a buffet, what other people will be wearing. Then perhaps most important of all, who else is coming because if you have some friends on guest list, then that's your next step, to call a friend or two, get yourself a ride if you're not already going with someone, and then arrange to meet one or two friends at the event, have someone you're going to eat the meal with and arrange to have a good catch-up chat with another friend. It makes a huge difference that you'll prepare ahead.

Ricky Enger: Yeah, and if you've never really thought about preparing ahead of time for a gathering, this might seem a little bit weird at first, but it does actually make sense. There are some reasons to have some things in place ahead of time, whether that's a plan for how to address some of those practical issues that come up, or it's just that helpful emotional support. Again, Hannah has some great thoughts on this.

Hannah: I do think when you're fairly new to vision loss, you want to make sure that you have a kind of a protector at the event. Don't just go by yourself thinking, "Oh, I know them all. It'll be fine." It actually may be quite not fine.

And so, it's good to line up one particular sister or brother or whatever who's going to look after you at the event, because people might not think of giving you a plate of food or find you a drink. So you do need support.

Then in time you'll get more comfortable, and hopefully your family will learn too about vision loss. You'll teach them, and it will all get more comfortable. But to begin with, it can really be a shock. When you go to an event where you don't know anyone very well, this is a better place to experiment with and, if you're ready for it, saying something about your vision loss. You're going to keep it short and not medical.

If you're up for it, you could just say, "I'm having a bit of trouble with my eyes these days," or "I can't see much in this light." Keep it really simple. If you go with a companion, of course it's easier, but people do tend to talk to the person they're making eye contact with. So you might even do better going off by yourself for a bit or even the whole thing.

Ricky Enger: Yeah, that's great. Now you can plan all you want for what to do when you get to the gathering, but there's a pretty important step you have to figure out even before that: how am I going to get there? Actually, you might be figuring this out for several different events during the holidays.

If you're a member of a faith community, there's usually a lot of stuff going on. There might be additional worship services outside the ones you normally go to, and then there's maybe the choir rehearsals, the concerts. So even if you usually have a ride to some of those routine things, you still may need something in place for the extra events. So Scott is going to share some tips for finding transportation.

Scott: So the ideal is if you have a family member, or someone who lives in your household who also belongs to the faith community, and you can ride with her or him. Carpooling with another church member is another great option. If you go down that route, I would consider lining up two or three people, because somebody travels, so having a few people ... It's like your bench. You've got your people you can call on.

If you need help figuring out who can be on your team to help you reach the church, talk to the church administrator. Your church admin knows everything, they know everyone, and they know who lives near you. That's really important. That will help you to not feel like the person is going way out of their way to pick you up.

Some people, by the way, don't care if they have to go out of your way, especially if they know you and have a relationship. It helps you feel good if you know they're in your neighborhood, and it's no big deal for them to pick you up.

Another can be public transit. I wouldn't discount that depending on where you live. Bear in mind that your city may offer discounted prices on an annual public transit fare. So that's something just to remember. Your city or town may offer a special bus transit service for people with disabilities. You usually need to pre-schedule with them at least a day in advance.

The downside can be you're sharing it with others, so sometimes there can be a bit of a wait. They don't always arrive right on the minute. But it's a legitimate option to consider.

Again, exhausting those options, I think Uber and Lyft are something not to discount. They can be expensive, especially if you have a long distance to go. I usually tell people over 10 miles, Uber or Lyft gets more expensive. But it's a good backup option even if you do have to go a longer distance like that.

Ricky Enger: Absolutely. Once you get to the service, there are things you may have to think about in a different way. For example, certain aspects of the service may have a visual component that you now have to figure out how to navigate in a way that doesn't involve your vision. Scott has some great tips on that, too.

Scott: It's helpful to sit with a family member or a friend and tell them that you may need guidance. Most visual cues in the worship service have an audible accompanying cue such as, "Please be seated." If the clergy person waves to be seated, they usually say that, too. If you need to come forward for communion, usually they'll say at the end of the communion litany, "Please come forward at this time for communion," as they make a hand gesture.

But for those cues that don't, and they certainly happen, listen, and follow what others are doing. It sounds simple and it is simple. It's so simple you might even not even think about that at times.

Ricky Enger: Okay. So, yeah, you might have put a lot of planning in ahead of time to get to this gathering. But, of course, that's just the beginning, right? What happens once you're there?

Well, it turns out that there are actually some pretty common things that we run into at these gatherings, and these things can really make the experience a lot less enjoyable if you don't have some way to avoid them.

I think the first one that comes to mind for me like this is the dreaded, "We'll just put you over here." Yeah, that one really puts a damper on the party atmosphere for me. So how do we avoid the possibility of being stuck somewhere on the fringes and not really being an active participant in the gathering? Hannah and Scott do have some awesome thoughts on this.

Hannah: There was a sociologist, a very famous sociologist, writing in the 1960s. He said, "Present yourself in the way you wish to be perceived." What it means is you have to project a positive, cheery image so that then the people who are rushing about will get a bit more chatty and will get a bit more comfortable with you. But you have to get this idea that you have to present yourself as a really more than adequate person who's up to everything and needs to be included because you're worth it.

It does take courage to do it, but we all get there in the end because it's the way that works. People with full sight who are feeling a bit nervy and anxious before the gathering begins are very apt to try to park a person with vision loss. It's very, very common because it makes them, the host or whoever, feel comfortable that they've got you dealt with, "Oh, she's there." But do not allow yourself to get parked unless you're in real pain and you really have to. Say, "Oh no, I don't want to sit down. Thanks," and try to find a seat next to the kitchen, because the kitchen is often where everything's going on, or just stand not in the entry or you'll be in the way, but just beside it and try to get into the conversation.

Be very cheery and admire like crazy. This is to be positive and outgoing, whatever you feel like inside, which can be pretty uncomfortable, but better than getting parked.

Scott: Depending on your vision level, if you really have trouble with faces and seeing people in a room ... I do have this at times, depending on the room and the lighting ... ask them to point out where people are, especially if you want to connect with certain people, or have them look for a group and they can guide you into that group. That's a great thing to do.

Another one, let's say that you are alone. That's certainly a possibility. I would suggest standing and not sitting. If someone wants to guide you and let's say an attendant says, "Oh, well, you can sit over here in the corner," don't let them put you in the corner. You'll feel disempowered if you're over there sitting especially if everyone's standing up and socializing. Try to remain standing.

If you need to remain stationary somewhere, try to stand where the action is, which is usually near the refreshment table. You don't want to be in the way of the line. But you can hover in that area. People will have no idea that you're intentionally standing there, and just let people come up to you.

If you feel comfortable approaching groups and you're by yourself, look for an opening in the circle and walk up to the circle and say hello. Especially if someone knows you, they'll greet you. But let's say you don't know anyone in that circle. That can be an especially difficult situation.

A line that I will say when I walk up to a new group and I don't know people sometimes, or maybe I know one person there but I've forgotten their name or I can't see them clearly, is I'll just say to the group, "Hey, I have low vision. Could you help me with your names?" Once they know that, they're very empathetic and glad to help.

Just take your time. Let someone know if you need help. But again you need to be your own advocate. If you need help, ask someone, and people are glad to help you.

Ricky Enger: Scott brings up a really good point here. You're not always going to know people's names for whatever reason. Maybe you haven't met the person before, or maybe you're just not seeing faces in the same way that you used to, or it gets really loud at some of these things and you can't always recognize that one voice among all this noise.

So that brings up another topic. How do you find out who you're talking to? That's such a simple thing, but it feels really awkward, right?

Hannah: It does feel really, really awkward. Of course it happens to people who see perfectly well as well. As we all know, the longer you leave it, the worse it gets. So do try to speak up right pretty near the beginning with some slight apologetic phrase. This depends how much you want to disclose your vision loss.

So you could say, "I'm just not able to recognize you in this light," or, "I'm having real trouble with facial recognition, or you could say, which is what I now say after many, many years, "I have very little sight and I can't see faces." But that comes after a lot of practice. It's not wise to say, "I've forgotten your name," because it could turn out to be your close neighbor or something, and they're going to think you're really, really standoffish.

But if you can just practice something, "Having trouble with my eyes," then suddenly people realize why you're not responding to their visual cues, and they get more comfortable with you and you're more comfortable. So things proceed more easily once you've admitted that you can't recognize them.

Also, if you're meeting someone for the first time and they say their name, if you now can't tie the name to the face and the type of body they have, it's good to repeat the name back and ask how to spell it so that it really goes into memory. If you really like them, you could ask them to dictate it onto your smartphone or something.

Ricky Enger: Those are some really great tips for when you're already engaging or talking with someone. But what if that's a thing that you're struggling with? How do I connect with people and get involved in the conversation in the first place? Scott actually touches on this a bit too, and now we have Hannah with some thoughts.

Hannah: I do think that the most important thing is not to hover on the outskirts. Joining a group who are talking is a visual thing and it's said to be a complex one. Somebody looks up, sees you, makes eye contact, makes a little space in the group. It's all visual.

So what you have to do is be bold, which is not the easiest. It's easier if you have a white cane, if you're ready to carry a white cane. But in any case, you walk up, be cheerful and firm, and say, "Do you mind if I join you? My name's Hannah." They probably won't mind. There's no way to do it other than with confidence.

Ricky Enger: Yeah. These are some really helpful and practical tips for getting through that gathering that you've decided to attend. Hopefully, you'll be able to relax and have fun, which is pretty much the point of going in the first place.

But you don't have to content yourself with only going to other people's parties. Maybe you really enjoy that process of planning your own get-together, which, of course, has its own challenges with vision loss. But those challenges do have some solutions.

If you're wanting to jump in and host, what's the best way to start? Sharon and Hannah have some tips.

Sharon: If you're really nervous, just invite someone in for coffee or tea and cookie. My first tip is put a napkin under those cookies on that plate so they don't slip off. Once you've invited someone in for a coffee and that went well, you might invite two or three others to join you. Then after that, you might want to go to a small lunch with one other person, build it up in increments, step by step. Once you feel comfortable, then try something new.

Hannah: If you haven't done this for a while, it might be good to start very small. Just invite two or three neighbors or good friends in and put everything you're going to serve on a tray. You could even plug in a coffee maker, put it all on a coffee table or on a side table, everything ready. Then when the doorbell rings, greet them and seat them. This is your home, so you need to make it clear that you're in charge here.

Again, that's very hard to begin with, but it's your home, and you don't need anybody to take over, provided you're all prepared. Then if you’ve seated people, you know where Michelle is sitting, and you know where Brian is sitting and so on. Then invite them to help themselves so you don't have to do any pouring.

When you graduate to a slightly bigger gathering, I would have everybody again, sitting around the table, and you prepare everything. Keep it really simple, maybe a one-pot meal with some rolls or maybe a chopped salad. Then lay out trays to receive dirty dishes. You can either invite people to serve themselves, you've got it all ready, or you can serve them and just ask for one person to help.

Ricky Enger: Oh, yes, this is a good one. Hannah brings up a great point about managing your gathering in a way that makes it really clear that you're the one in control. So how can you do the things that you are really comfortable doing without that unnecessary help from your guests, but then also leave room to get help for the things that you do need help with? That is a really tricky one to handle gracefully, I think, and Sharon has some good ideas on how you might do that.

Sharon: Recognizing what you do need help with, as you said, and where you really don't want help. I'm going to include my husband in this because he gets flustered in the kitchen if there's anyone else, including me, in that kitchen. So to have guests invade his space, it becomes uncomfortable for everybody.

So my job is to ensure that when a guest comes to the kitchen and says, "May I help you?" I either firmly say, "No. Please help yourself to a beverage," or whatever. If I need their help, which I often do with the pre-dinner beverage, I will designate somebody to do that. "Please, would you mind refreshing the guest's glass?" So they're quite pleased to do that, and that takes away that responsibility.

The persistent person, I keep a plate of appetizers just for that occasion. I thrust it in their hands and say, "Would you mind passing this, please?" I will also ask somebody to help me with dessert. If we go back to that pie, there is no way I'm going to cut that into eight equal pieces. I just take everything out of the cupboard. As I mentioned, it was all there. I'll either do it in the kitchen or place it on the table in front of them, and they're very happy to do that.

So the key here is to designate, to keep control over the situation. With a cheerful smile, be firm about where you do and do not need help.

Ricky Enger: Yeah, that's some really helpful advice. Of course, when I think about having people over, I'm thinking about, oh, I have to make everything perfect. Everything has to look a certain way, otherwise the whole thing is just a complete disaster. Except that's not really true at all, is it, Sharon?

Sharon: The first thing I'll say, it goes back to taking the time to think about it and being organized. There are so many myths, one of them being that you have to have all your dishes matching, the fact that all of the dishes have to be porcelain. No, paper plates are perfectly acceptable, especially in a larger gathering.

I saw the most beautiful tablecloth and it had the most beautiful pattern. So I purchased it, and I put it on the table, only to find out that everything blended into that pattern, and I couldn't see a thing. So now I use a plain polyester cloth that can be thrown into the washer.

Contrast is good there, too. If the dishes are dark, then light, and vice versa. Get rid of the coasters and use little cocktail napkins instead, because I found repeatedly I was putting my cup on the edge of that and causing myself a problem. Along those lines, I couldn't see the plain glass any longer.

Ricky Enger: Right. So these are some very practical things to consider. If you're using some of your remaining vision, you've got good contrast, and you haven't chosen some dishes that are going to blend in with the tablecloth, that kind of thing. That's really helpful.

Such great advice from all of our guests. Thanks so much to Hannah, Scott, and Sharon for being willing to share their tips and their experiences with us.

The pieces you've heard come from past episodes of Hadley Presents, and if you'd like to hear those episodes in their entirety, we do have those links for you in the show notes. Here's wishing you all a joyous and stress-free holiday season. Thanks so much for listening.

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 @hadleyhelps. O-R-G, or leave us a message at 847-784-2870. Thanks for listening.