Patient Warrior: Living a fulfilled life, not defined by Stargardts Disease Part 2

Bill Quain:

My name is Bill Quain. I’m a college professor, but I’m also a speaker and an author, and I kind of split my time up between those three things. I have Stargardt disease, I’ll be 70 years old in August, and I started to lose my eyesight when I was 14.

All About Perspective

Bill Quain:

Completely blind, the center of my eyes. I mean, just a little bit around the outside, and that’s diminishing as well. So it’s the worst it’s been. It’s better than it’s going to be tomorrow. That’s the good news, [inaudible 00:00:50]. I can see shapes to some degree. Colors are tough, That’s pretty much washed out. Certainly detail. With macular degeneration that’s the first thing you lose is detail. I always tell people, everybody looks like a dressed up thumb to me. Let me just tell you a couple of things as I’m thinking about these are coming to mind. One of my favorites is, remember I was talking about I run a little boardwalk with my dog and I think I’m the only one up there doing that because it’s amazing to me, I’ll say to people, I went someplace or did something, and people will ask me, were there any other blind people there? And it’s like, oh yeah, yeah, we were waving at each other. How would I know if other blind people were there? That’s a question I get asked a lot.

And then I do a lot of professional speaking. Like I say, I go a lot of conventions, that sort of thing, and people are wearing name tags. Always amazing to me that people won’t tell you their name when they’re wearing a name tag. And then I tell them, I don’t see well they’ll go like that as if that’s going to help. I mean, if I get close enough to you to read your name tag, we’ve changed the nature of our relationship with that. It’s just amazing, the funny things people do.

And of course, the old standby of people talking louder and slower to you. So sometimes people will say to me, are you blind? And I’ll say, no, I’m deaf. In my classes or actually when I’m given a talk, a lot of times, this is back when I was using a white cane, I’ll come on stage or something like that and and I’ll hold my hand up and I’ll hold my cane up and I’ll say, how many of you noticed that I’m walking with a white cane? And then people will raise their hand because I did. And then I always say to them, now, how many of you’re wondering yourself, why’d you raise your hand? So, I like to have fun with that.

But I mean, people come up to me on the boardwalk and ask me what I can see. I mean, what an intrusive, terrible question. Or people sometimes will say to me, oh, I feel so sorry for you. People come up to me and, listen, I’m a believer. I’m a person who I go to church and that kind of stuff, but people come up to me and say, I’d like to pray for you. And I think to myself, no, you’re not praying for me, you’re praying for yourself because you’re going to make yourself feel better. I have a great life. I just want to pass those tidbits on. It’s funny things that people just don’t know how to handle.

Living a Fulfilled Life, Not Defined by your Diagnosis

Bill Quain:

When I was looking over your website there, I had to have somebody help me do it, although it is accessible, I was struck by the term patient warrior. I go, wait a second, there’s two meanings there. And I think that’s a key for overcoming a challenge with eyesight. I mean, obviously it’s meant as patient being like someone who is a patient, a recipient of medical care. But I got to thinking about it and I thought, boy, being a patient warrior, what a great thing that is. Now, let’s get back to the point where I was talking about stay ready so you don’t have to get ready. A person who’s a warrior, somebody who they’re always ready to spring into action. But I think you got to be patient too. And one thing that having a disability will really teach you, I mean, it really teaches you patience. You might need somebody to help you with something and they’re distracted. You might need somebody to look up something for you and you have to wait a while and then you kind of forget you were waiting for something that they forget.

So you have to be really patient. You have to learn to really gain some peace within yourself and to let yourself not get worked up about if something can’t happen right away. But then you have to become that warrior too, who is ready at all times because you’re already prepared to spring into action. So, a lot of what overcoming a challenge with eyesight is to prepare yourself as much as possible to run scenarios in your mind so that when things happen to you, you’re prepared.

When I was just out of college, the Vietnam War had just ended and the draft had just… And for males my age, you expected to go into the service. I mean, that was a cultural thing that you were expected to go into the service. So I felt bad because of my disability that I couldn’t go in. So I decided to go into VISTA, which is Volunteers in Service to America. So I got assigned to Cleveland, Ohio. It was a very, very terrible, dangerous neighborhood. And there was also the Cleveland Society for the Blind there, and I did some work there with them. And I actually taught self-defense to blind people, just to give them more body confidence. But in teaching something like self-defense, you’re thinking about scenarios that are going to come up, well, the whole thing of overcoming your disability is to use your mind to imagine different scenarios and so when they come up you’re not surprised by it.

Part of that is having standard replies to questions that people ask you, whether they’re well-meaning or they’re ill meaning, which happens too. If you’re doing a planned response that you’ve rehearsed and you’re at peace with, it’s a lot easier than trying to react to every situation that comes up. When you are able to find your way sometime. Well, how do you deal with that? So in other words, preparing yourself to be that patient warrior. I think that’s the key. It’s really helped me.

I’ve written 27 books, a distance runner. I’ve traveled the world, literally, not figuratively traveled the world. China, Jakarta, all over the place, all over the United States, North America of course, obviously, Europe, as a speaker, speaking about my books. And that’s all great, that’s all icing on the cake. I’m a successful father. I have two great kids. Wonderful marriage. I’ve been married, it’ll be at the end of this month, 38 years. And I have enjoyed life just so much. I mean, that’s my accomplishments that I really like is my family, my living situation, my health, which I’ve worked hard on. Those are the big things for me, and I think I’ve helped a lot of people.

There is nobody out there listening to this or watching this who can’t achieve the same things. Was I lucky to become an author and sell so many books? Yeah. I first started writing before things got so fragmented with the internet words, it was easier to do that then. But the accomplishment that I’m most proud of is I’m a pretty good guy with a great sense of humor and a great outlook on life. And geeze, we don’t get much more of a chance to do something like that.

Advice to Other Stargardt Warriors

Bill Quain:

Yeah, if it’s Stargardt’s you’re kind of yuck when you get this and it’s a shock. And the biggest thing, you’re going to have to learn how to put other people at ease with your condition. That’s the biggest thing. Because you want to be successful. And when I say successful, I mean money, sunny and honey. This is going to help you, I want you to think about this, how you handle your diagnosis and how you handle the progression of your disease. So money, you want to make money, it’s pretty easy to understand what money is, right? You want want to be successful in life so that you are financially comfortable. There’s two things with that. One, it’s going to be harder for you being visually handicapped, but you’re going to find yourself thinking differently about money. You’re going to understand pretty quickly what money can do for you, it can make your life easier in terms of getting adaptive equipment, being able to live where you want to live. And so that’s why money’s important for you.

All right? Sunny is your outlook on life. It’s your mental and physical health. I want you to find ways to keep a good mental attitude, have a sunny disposition. That’s what sunny is, sunny disposition. But I also want you to make a commitment right now to keeping yourself in good physical shape. I’m about to turn to 70, and yesterday I went out and I ran three miles with my dog. And then I ran three miles on a track where I had to run slow, but I can stay inside the lines on the track. So I did eight miles yesterday. I want you to make a commitment to staying healthy because you have a battle to win here and you can’t afford to be unhealthy and visually handicapped. You can’t afford to have a bad mental attitude.

So, it’s money. You want to learn how to make it and keep it. You want to think differently about it than other people do. Sunny, you want to be mentally and physically in shape all the time, the best you can. You’ve already got one thing against you, try to keep the other bad things from happening to you. And then honey, honey is your relationships. Listen, people sometimes say to me, well, shouldn’t relationships be first. And I always say, well, if you don’t have money, it’s not going to be very sunny, honey. So your relationships, what you have to do, you have to reduce the barriers of people being attracted to you. So, you don’t want to make it hard for them to be around you because of your disability. You’re going to make yourself attractive. You’re going to make yourself comfortable to be around. You’re going to make yourself acceptable to people. It’s going to take some work, but man oh man… And the thing is, what you’ll find out later on is that was good advice for everybody, but you got it from me.