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A Couple’s Personal Story on Living with Vision Loss

From our series on “Living with Vision Loss” here’s an interview with a happily married couple, Griff and Maxine, who received some difficult news that she had been diagnosed with pseudoxanthoma elasticum, a rare inherited disorder that affects the retina.

Interviewer:  Was there a conversation that the two of you had together when you first learned you were losing your vision?

Griff:  I think it was kind of a shock for both of us, didn’t really understand what this was all about, and then, of course, the typical us. Truly, it was why us. We’ve been married for a long time, and I realized it was going to change our lifestyle. Her freedom and independence that she cherished so much was going to be curtailed, and I was going to have to pick up some of that. Fortunately, I was able and even willing to help, but it was not an easy transition from a stage in life to stage two. [laughs] But it worked out. So that was helpful.

Interviewer:  Was there a time when he was almost doing too much for you, that you wanted him to back off a little bit?

Maxine:  Always. [laughs] Yes, it’s a constant of readjustment. I don’t think Griff is real sure how much I can do yet even though it’s been quite a while. I prefer to try it myself first. I have two support groups that I facilitate through Vision Loss Resources. I tell them that that’s one of the things that I have trouble with. For instance, I’ve told them, “I don’t tell him how I vote.” For 55 years, I won’t tell him how I vote. Now, they have the voting machine. That’s just wonderful because I don’t have to tell anybody how I vote. That’s the only secret in 55 years that I have.

[laughter]

Interviewer:  So you can keep that one.

Maxine:  I can keep that secret. It’s wonderful.

Griff:  Maxine had been very involved when she first retired, even when she had lost the vision in one eye. She was very involved in an organization in St. Paul that was dealing with Southeast Asian people primarily and she was teaching them to read and helping them…

Interviewer:  …teaching English?

Griff:  …move into literacy. I had some volunteer activities at Courage Center.   Both of which those activities are behind us now. We’ve both concentrated on the Vision Loss thing. We’re kind of a team, for example, once a month, we have a group of 25, 30 people that you meet with?

Maxine:  21 in my group, 22.

Griff:  We call them the afflicted and the affected.

Maxine:  Afflicted and the affected. [laughter]

Griff:  I take the spouses into one room and we talk about how do we cope? What do we go through in this process? Life hasn’t come to a screeching halt as a result of this. Maxine does the same thing with those that have vision loss. I think it’s helped them, but I think it’s probably done more for us. The fact that we’ve been involved and we’re able to do something.

Interviewer:  Together, as a couple. What is this in the discussions of the people, the spouses?

Griff:  I think a lot of it…Of course, it gets back, those that are initially they lose their sight and they’re concerned, “All of a sudden my spouse is going to have to give up her car keys, or his car keys. Our lifestyle is going to be changed. We’re not going to be able to travel.” And to go through those things and to talk to them, how did we manage to overcome some of those things that we enjoyed? All of a sudden, our life has changed a bit. But we’re still able to function, and we’re still able to get along. We’re still able to get along with each other.

Maxine:  Sometimes. [laughter]

Maxine:  I think another thing that you found out, it was particularly hard on the women because our husbands had volunteered. They had done the driving, and they had done a lot of the tasks around the house. I think the first thing that happens to you is depression and denial. The women are pretty well, “He used to volunteer all the time but he won’t go out any more, and won’t do that.” It’s a matter of gaining your confidence that it’s possible. But that was some of the sadness that the women expressed.

Interviewer:  Was that a process for you as well?

Maxine:  I think I knew it was coming for a long time. The disease I have, 100 percent of us will lose vision. I have gotten active. I was active in the PXE group, and I had met a lot of people that had already lost their vision. I was so impressed with them, and then I had done a lot of studying on it, so I knew it was ultimate. That was going to be an ultimate loss. I didn’t clean the house though, till I was ready. [laughs] I thought, gee, I should really get busy here and get things organized, but I was too busy doing other things.

Interviewer:  I think it’s a bit low on the priorities.

Maxine:  Yes, it is. It is. I do it now, and I can’t tell what I feel. You can’t dust anymore. [laughs]

Interviewer:  Do you guys still travel?

Griff:  We do, but limited. Maxine finds it difficult to ride in the car. I think it’s the fact that she sees so very little, other than she sees the tail light of the car in front of us flash, and all of a sudden she gets very tense. She thinks we’re going to slam into that car, and we’re in trouble. We have family in Arizona and Florida. We get to some of those places. Last summer, we took a nice trip to Banff and Lake Louise, but it was a tour bus where they did everything for us. It was marvelous, and I think we ought to do more of that type of thing.

The fact that Maxine had her little button and carried a little walking stick ‑‑ her button says that she’s visually impaired, or legally blind, one of the two ‑‑ people were very, very helpful to her, on and off of the bus if I wasn’t around, or just to help me out a little bit, so it worked out well.

One of the stages I think that we are recognizing now, that 10 years ago, we never even thought of, is what happens to Maxine or what happens to me, if something happens to one of the two of us. Of course, that concerns me, so we have to prepare to some degree our children for this, and we gradually do that.

We don’t hit it head on and say, “I’m not going to be here tomorrow, and you’re going to have to take over where I left out.” But I’m at the stage where I think Maxine would be very, very capable and she’d get along okay, other than the fact she probably wouldn’t stay in the house.

But there’s lots of nice senior apartments, assisted living facilities and what have you. She’d get along fine.

Maxine:  Yes, I would. I would.

Griff:  Better than sometimes I think she would.

Interviewer:  This is something that you guys have discussed?

Maxine:  Yes.

Griff:  But it’s an ongoing process.

Interviewer:  It sounds like you have a very open communication, which is good.

Maxine:  We do.

Interviewer:  Did you guys find that you got closer to each other, in some way, because of this?

Maxine:  I think Griff is a lot more considerate. He’s around more than he was before. Before, he’d travel sometimes two weeks at a time, and I think he’s…When he isn’t overly compulsive about helping me, then I think there is a closeness that we didn’t have before, just because we’ve had to learn to live together again. Both because he traveled, and we both retired and all of a sudden, we had other things that we had to take into consideration. Don’t you think so?

Griff:  Yeah, I agree.

Interviewer:  It’s also nice that you both are doing this community service together, to a certain extent.

Maxine:  Yes.

Griff:  Yes.

Interviewer:  Shared.

Griff:  Yes.

Maxine:  Yes. It’s nice to do separate things, too, because we have more to talk about. He’ll come home and tell me about people he met and what’s going on in their lives. Things with a group called Silver Harmony Singers, and they’re all ‑‑ Lee used the word elderly ‑‑ more mature. [laughter]

Maxine:  He’s gotten to be very good friends with them, and I hear about them, that sort of thing. I can go home and talk about the stuff I’ve learned here. I can’t talk about the people, but I can talk about the things I’ve learned, and I’ve learned a lot. There’s a whole different community. I feel fortunate, because it’s a whole different community that I would have never known if I hadn’t lost my vision.

Interviewer:  Do you have any advice you would give to another couple who’s in your situation? Just discovering…

Maxine:  I would advise them to try to continue their life and not allow yourself, the visually impaired person, to become isolated. Because the more you do that, the more inward you turn. And, to try things. Not everything you try, you like. As far as each other, I trust Griff implicitly to help me. Every once in a while, he just gets wound too tight in helping, but then we talk about it, and in the end, we unwind with it, [laughs] and so on. It’s likely that my vision may get worse. I see a little tiny bit now, and at that point, I’ll have to do it again. I’ll have to rethink everything, grieve again, and do all of that.

Griff:  I think the big thing is life. Life will go on, and I think we just need to accept the fact that there are things out there that can help us tremendously if we’ll reach out for them, and find out what they are. Like Vision Loss Resources, the State Services for the Blind, and the blind stores. We find so many of the people that have lost their vision, or partial vision, know little, if anything, about Vision Loss Resources, the State Services for the Blind, whatever it might be. That’s what they do. It’s such a tremendous job here. They find out about you and they come out and visit with you. Talk to you one on one and identify some of the things that are available, and life is not finished. We can go on.

People are living very, very full lives in spite of the fact that they have a problem. But they don’t look at it as a problem.

Maxine:  Come over to Vision Loss Resources. If you see people who are much more impaired that you are, and you think I must quit complaining because I certainly can do more than they can do, or as much at least. It’s an inspiration. We’re trying to inform the doctors when they say to someone, “There’s nothing more I can do for you,” number one that may not be true if they see a doctor who’s more skilled in the retinal diseases. Secondly, if they knew about Vision Loss Resources, if those doctors would just tell them about Vision Loss, they would have a peer counselor, or they would have phone pal or someone like me who’ll call them on the phone.

They don’t necessarily like to complain to their children, so I’m a person who they can talk to who’s in the same boat. And try to encourage them to begin getting out.

Interviewer:  Is that maybe something to do with your work as a teacher, as well? Do you think they’re related in any way?

Maxine:  [laughs] Yeah. I’ve had an artist who’s losing her vision, which is tragic. I must say that she’s doing very well. I’ve had a woman who’s a published author and she’s still reading copy that is being sent to her from New York. All I have to do is mention some of those people to someone and say, “Well, you know…” Of course, I did tell someone that there was a walking group, and they walked on the freeway. I meant the sky ways. [laughs]

Griff:  Not the freeways. [laughs]

Interviewer:  They weren’t walking on the freeways. [laughs]

Maxine:  She began to suspect my motives. [laughter]

Interviewer:  That’s great. Did you have a counselor when you started out?

Maxine:  I did not.

Griff:  But I think we do, and Maxine’s touched upon it a little bit. We do need somehow to reach out to the medical profession, to get them to realize that it’s not just when you make a determination, you can’t restore their vision any longer. But they have a tendency of saying, “There’s nothing more I can do, and that’s the end of it.” The relationship is finished, and these people are just sent to the door, and they’re sent a bill and that’s it.

Maxine:  My disease is rare. And so, when I had a pamphlet on that, I gave it to the doctor and I said, “Here. It says, anyone else comes in, here’s my phone number, here’s the pamphlet. Please give it to them.” He has. I have heard from people from Glomerin and so on.

Interviewer:  What is your disease specifically?

Maxine:  It’s called pseudoxanthoma elasticum, isn’t that great? [laughs]

Griff:  Don’t ask me to spell it for you. [laughter]

Griff:  She can spell, I can’t. [laughs]

Interviewer:  What are some of the ways you compensate for your vision loss?

Maxine:  I have gold pins in the back of my slacks and one gold pin means they’re black, and two gold pins means they’re blue. I don’t even try to look at color any more. If I want to wear blue, I look for two pins.

Interviewer:  That’s clever.

Maxine:  Yes.

Interviewer:  Is that something that you made up, or somebody…

Maxine:  No, I learned that from my class. I think it’s dimes and quarters that have ridges around them, and you learn how to fold money, but I haven’t done that yet, so that you know what…One of my friends only gets dollar bills when she cashes checks, because that way she knows exactly what she has. You learn the tricks that you learn, thank goodness.

Interviewer:  Yeah, you learn how to deal with it.

Maxine:  Sometimes I can see color. The quilt shop that I go to, I still do a lot of volunteer work over there. I’m their hostess for all their events. Quilts are supposed to have three colors, light, medium and dark. I can’t see when they pile them up. I can see whether I have lights and darks. Then, they’re awfully good about helping me, too.

Griff:  When she says she volunteers in a quilt shop, you probably had a question of what would she ever do there?

Maxine:  [laughs]

Interviewer:  I wanted to say that.

Griff:  She is the greeter, and what do they call you? Tell us.

Maxine:  The Fairy Godmother. [laughs]

Interviewer:  That’s sweet.

Maxine:  The Fairy Godmother. I probably am the only blind person in the world who ever runs up a bill at the quilt shop. [laughs] But they watch for quilt patterns that I can do, so it’s helpful. [laughs] It’s doable. I think the biggest thing that, when you lose your vision, you’re in a panic. One of the things, I think you have to get to the point where you think, “Now I did this before. How could I do it again?” Maybe you can and maybe you can’t, but I think that as long as you’re in the panic mode, it scares everything else away.

Somebody told me they couldn’t even turn on their computer any more. The minute he calms down, and if he’s more confident and he’s feeling a little more sure, he’ll know where that button was. He’ll be able to find it.

Then as soon as he’s ready, then there are other compensating things that you can do, but it’s doable. I realize that we we’re not young. Most of my clients are not young. Macular degeneration out here in Minnesota, 217,000 people are affected by that. I think there are two or three million ‑‑ my retinologist told me ‑‑ in the United States. We’re not alone. But it is doable, I guess that’s my major conversation. It’s doable.

Interviewer:  Would you say it’s doable?

Griff:  I think it’s learning. Yes, definitely. It’s learning how to cope. Of course, we’re at the stage now where I think we’ve learned how to cope. Each day is a new challenge. On the other hand, the fact that we’ve tried to help some other people, I think it’s helped us tremendously.

 

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