A Different Darkness

<v Doctor>Okay, keep looking straight. <v Doctor>I'm just going to take the pressure now. <v Doctor>Open big, that's it. Look straight ahead try not to blink you're doing fine. <v Narrator>Barbara Allen has gone blind in one eye. <v Narrator>With laser treatments the doctors hope to minimize the damage of diabetic <v Narrator>retinopathy to the other eye. <v Narrator>For Barbara, the physical ordeal of diabetes and two years of surgery has <v Narrator>been traumatic, but somehow less overwhelming than the painfully slow <v Narrator>psychological acceptance of her condition. <v Narrator>It is an ordeal shared by many facing the possibility of total blindness. <v Hank>I knew I was losing my sight and I wasn't handling it well. I wasn't a very good person, <v Hank>I don't think. I drank a lot and started making <v Hank>geographical changes. I moved from Hawaii to Connecticut and moved <v Hank>away from my wife and children, uh, drank awfully heavy, <v Hank>got into a lot of trouble. <v Hank>And then from management jobs to semi-manager jobs to to salesman to to a bum. <v Hank>That's really what it was.

<v Man>When I am totally blind, I don't know what I'm going to do or where I will go. <v Man>I don't have any family here. <v Man>And uh I'm sorry to say that sometimes my family is not <v Man>as comforting as friends and neighbors are, but you can't always rely <v Man>on friends and neighbors. <v Woman>Are you lonely? <v Man>Very lonely. <v Man>Very lonely. <v Woman>Each morning I wake up, I'm thankful that I do have some sight. <v Woman>And I, now I expect any morning I wake up, maybe, you know, it's gone because <v Woman>each time it gets worse, it frightens you because you wonder how <v Woman>much longer that I'll be able to see. <v Narrator>What these people have learned is that the medical profession can only go so far, and <v Narrator>when surgical attempts for cure and correction fail, the only thing to do is <v Narrator>to accept.

<v Doctor>Okay, look up at the ceiling. I'm just going to pull down on your lid. <v Barbara Allen>Umm, I'm completely messed <v Barbara Allen>up right now. After the surgery and I got hit smack in the <v Barbara Allen>face with, well, your life is completely different, you no longer <v Barbara Allen>have a job, you no longer can drive, you can't read, you, all your <v Barbara Allen>dreams you have to start channeling them in different directions. <v Barbara Allen>So in the beginning, I was very emotionally disturbed. <v Barbara Allen>I took it out on my husband a lot. <v Barbara Allen>I felt cheated. <v Barbara Allen>I thought I hadn't done anything to deserve it, and <v Barbara Allen>I had to to realize it's not <v Barbara Allen>uh a fair world, and <v Barbara Allen>um, after a while, after the self-pity, after <v Barbara Allen>the depression, after the anger, I started

<v Barbara Allen>feeling that I had to start doing something with my life. <v Narrator>Barbara Allen is taking the first steps toward adjustment. <v Narrator>But for others, acceptance of blindness does not come easily. <v Narrator>And those in need of psychiatric counseling often find there is nowhere or no <v Narrator>one to turn to. <v Man>In medical problems you can mount a big million dollar research <v Man>efforts. In psychological adjustment, <v Man>you cannot solve the problem in the laboratory. <v Man>You have to involve the people surrounding the patient. <v Narrator>Under the direction of Dr. August Colenbrander, the Pacific Medical Center's Low Vision <v Narrator>Services is one of a handful of facilities in the Bay Area offering counseling <v Narrator>and adjustment assistance to patients facing the loss of sight. <v Dr. Colenbrander>We got people at many different stages. <v Dr. Colenbrander>Some have lived with their visual loss, have learned

<v Dr. Colenbrander>to accept it, and are eager to get the technical means <v Dr. Colenbrander>to do more. Other are still in the stage where <v Dr. Colenbrander>they have hardly accepted it, are fighting the concept. <v Dr. Colenbrander>Why did this happen to me? <v Dr. Colenbrander>Why are all those people out there with normal vision? <v Dr. Colenbrander>Why do I have poor vision? <v Narrator>Dr. Colenbrander says that too often ophthalmologists are asked to guide <v Narrator>patients through the painful period of psychological adjustment, a responsibility <v Narrator>they are reluctant and often unprepared to assume. <v Narrator>The low vision services counsels patients and family members on the realities of <v Narrator>blindness. Patients with partial sight experiment with optical and non-optical <v Narrator>aids to boost low vision, and those facing possible total blindness <v Narrator>can discuss freely feelings of self-pity, hopelessness, and desperation. <v Dr. Colenbrander>Very often a person who loses his or her vision <v Dr. Colenbrander>loses his or her independence, and the loss of independence

<v Dr. Colenbrander>may be even worse than the loss of vision. <v Man>Her independence is is the big thing,and she hates to ask anybody <v Man>for help. <v Doctor>That's a real common um reaction that we get here. <v Doctor>Family members come and they say that, well, in a way, they don't want them going <v Doctor>out on their own, which also hurts the person tremendously is that <v Doctor>the independence he's taken away from them. <v Man>I think this is uh one of the areas that uh that she is affected most. <v Man>. . <v Barbara Allen>It's the most frustrating. <v Man>She's lost her independence. <v Doctor>Mm-hmm. <v Man>And this is something that she. . .It's very hard. <v Man>And we all take very hard, I think. <v Barbara Allen>Not being able to drive, not being able to to rely <v Barbara Allen>on myself, to get me where I want to go always have to depend on someone else. <v Narrator>Many of the patients that come to the low vision services are referred to group <v Narrator>counseling sessions at the Lighthouse for the Blind. <v Narrator>Therapist Donna Emerson says that emotional response to imminent blindness follows a

<v Narrator>distinct pattern. <v Donna Emerson>The first stage shock is usually characterized by someone experiencing <v Donna Emerson>a numbness, feeling in a daze. It's usually followed by some kind <v Donna Emerson>of denial, some feeling or expression that this isn't happening to me. <v Donna Emerson>They're furious about this thing that has happened to them. <v Donna Emerson>There's a lot of widespread anger. We find the client moving into some phase of <v Donna Emerson>depression. The individual will bargain; uh, if <v Donna Emerson>I'm a good person, maybe my eyes will get better. <v Donna Emerson>If I go to the magic doctor, everything will be all right again. <v Donna Emerson>The quiet usually moves into some kind of partial grief and actual mourning <v Donna Emerson>for what has happened to them. <v Donna Emerson>And finally pulling through to some kind of readjustment. <v Narrator>In expressing pains of the past and present, patients <v Narrator>have slowly moved from denial and anger to a gradual acceptance of the unalterable <v Narrator>finality of blindness. <v Woman>Things have been coming up for me, like images from my childhood that are real painful <v Woman>that that I didn't even realize were as painful as as

<v Woman>you know, now, looking back on, they seemed to be, um, I didn't feel good <v Woman>about about my appearance. <v Woman>I had not had my eyes straightened at the time. <v Woman>And this I tended to sit right down on the corner that it was more overall than that. <v Woman>That was, you know, like somehow that was the pinpoint of it. <v Woman>But just overall, generally, um I tended to walk <v Woman>around with my, you know, I didn't want to meet people's eyes. <v Woman>I remember sitting in the dentist's office when I was a kid and and being so miserable <v Woman>because I didn't want to look up at anybody. <v Woman>There were all these people sitting around and I I kept looking at my lap <v Woman>or trying to look at a magazine or to do anything so that people wouldn't notice my eyes <v Woman>because I was convinced that people could tell by just looking at me that there was <v Woman>something wrong and that that they would reject me or feel negative toward me. <v Donna Emerson>Hank, what did you feel when you first learned that you were going blind? <v Hank>Well, an awful lot of fear. <v Hank>Terrific amount of fear, what it's gonna be like to be, to not see.

<v Hank>Uh, what I was going to do for work. <v Hank>Uh, how I was going to support my children. <v Hank>Um, didn't want to live. Really seriously considered suicide. <v Hank>Just a lot of, uh, why me? <v Hank>You know, screw God. If there is a God, you know. <v Hank>And then um, <v Hank>I don't know. Just, just intensely angry. <v Donna Emerson>What are you afraid of the most? <v Hank>Being alone, I suppose. Just blackness. <v Man>In those days and afternoons and nights in the last six months, it's been awfully trying. <v Man>Particularly <v Man>since the fact that what limited vision I have is not going to last maybe <v Man>a year. And then you talk about fears.

<v Man>You're bringing out some things. <v Man>But anyway. <v Man>I think that if I go there, I can't see anything, I'd rather be dead. <v Man>[sobs] Pardon me. <v Man>I don't do this, I don't let myself get down to two of these things, but that's what it <v Man>is. <v Man>People don't care when you cry. They prefer you when you're laughing. <v Man>But that's life. <v Man>That's the way it goes. <v Narrator>Edna Hogan lives alone in a small apartment in the Western Addition. <v Narrator>When she was 23, severe glaucoma forced doctors to remove her right eye <v Narrator>and replace it with a glass eye. <v Narrator>Edna has known for years there was a chance the disease would spread to her left eye.

<v Narrator>Doctors have now confirmed that she will lose all vision within a few months. <v Narrator>It has taken Edna 42 years to come to terms with her blindness. <v Narrator>And now, at age 65, she is faced with the task of learning how to live <v Narrator>in a world of darkness. <v Edna Hogan>I wonder if I'll ever accept it. <v Edna Hogan>You know what I mean? And be relaxed that <v Edna Hogan>each morning I wake up. I'm thankful that I do have some sight, <v Edna Hogan>and I, now I expect any morning I wake up, maybe, you know, it's gone because <v Edna Hogan>each time you get worse it frightens you because you wonder how <v Edna Hogan>much longer that I'll be able to see. <v Speaker>For Edna, the most important step toward adjustment was learning how to read again. <v Speaker>After 3 years of classes in Braille reading and writing at the Lighthouse for the Blind, <v Speaker>Edna professes to a moderate proficiency in the Braille system, <v Speaker>wearing special glasses to block out glare, she takes dictation.

<v Man>I'll give this first sentence in its entirety and then I'll break it down into phrases. <v Man>For many years, the population of Oklahoma grew more rapidly than that of any other <v Man>state. <v Narrator>Using a stylus, students punch out holes in a 6-celled slate to represent <v Narrator>letters of the alphabet. More advanced students use a Braille typewriter. <v Narrator>[sounds of typewriter being operated] For many seniors attending classes at the Lighthouse, <v Narrator>the Braille system is difficult. <v Narrator>They're learning the alphabet all over again, some using fingertips that have long lost <v Narrator>sensory acuteness. Edna's progress has been slow, but interaction <v Narrator>with other seniors losing their sight has given her encouragement. <v Narrator>On the last day of the semester, it was time to celebrate. <v Narrator>[M <v Speaker>[music and sound of several people talking]

<v Man>Face cards counts for ten.. Twenty one...as near as possible. <v Man>Get over sixteen it's too much when you take a chance on hit because you bust out. <v Man>Dealer takes a hit. <v Narrator>Many of Edna's classmates have not yet accepted their blindness or partial vision. <v Narrator>And since Edna has had more than 4 decades to adjust emotionally to her <v Narrator>disability, they've come to her for advice. <v Speaker>I tell him it's just something that we've got to learn to live with. <v Speaker>And I maybe tell them about conditions of other people who are in far worse <v Speaker>shape than we are. <v Speaker>We can walk about. We can talk. <v Speaker>We can do some things for ourselves. You know, <v Speaker>the first time I went out to any kind of play or <v Speaker>something like that was to see Alice in Wonderland. <v Speaker>That's the first time I've been out since my sight began to get bad. <v Speaker>I don't know. I felt like it wasn't any use because I can't see you <v Speaker>know what's going on. But I think with time

<v Speaker>I'll be able to go to those things and enjoy them. <v Speaker>I hope so anyway. <v Narrator>Since Edna must rely on other people to drive her around the city, she stays home a lot <v Narrator>and there has been a lot to learn about getting along alone in an apartment. <v Narrator>She's memorized the dials on the stove. <v Narrator>Learn to listen for the sound of fullness when pouring and remembers where she <v Narrator>puts things. To a blind person a lost item could stay lost <v Narrator>for weeks. A Lighthouse volunteer usually visits Edna once a week <v Narrator>to do her shopping and errands. <v Narrator>But this week, relatives from home paid a surprise visit. <v Speaker>Dear God, we thank thee for this day. <v Speaker>We thank thee for allowing us to travel the dangerous highways <v Speaker>and be reunited as a family and allow my mother to <v Speaker>a chance to see her grandchildren. <v Speaker>We thank thee. And these blessings we ask in Jesus' name. <v Speaker>Amen. <v Edna Hogan>How was Alice getting along when you left home?

<v Man>She was doing uh a fairly good. <v Woman>We've been to the hospital and got her situated before we left. <v Woman>So James is there with her. <v Speaker>Are you adjusting to. <v Edna Hogan>I'm adjusting to my condition, yeah, and I do get out you see I go to the Kingdom <v Edna Hogan>Hall on on on Sundays and I go on on Wednesdays. <v Edna Hogan>One of the friends come by and pick me up and take me. <v Edna Hogan>But my most getting out was going to the Lighthouse. <v Edna Hogan>You see, long [??] was going to classes. <v Narrator>When Edna's son, daughter-in-law, and 2 grandchildren learned the extent of her visual <v Narrator>loss, they drove from Louisiana to San Francisco, hoping to convince her to return <v Narrator>home with them. After seeing her grandchildren again. <v Narrator>It didn't take long for Edna to decide to return with her family. <v Speaker>Often I sit here before the children got here and wonder <v Speaker>how is it going to be? How will it be? <v Speaker>With the sight I have left, I would like to spend more time with my family

<v Speaker>and especially my children and my grandchildren, you know, and <v Speaker>that I can remember their faces after, you know, I don't see them no <v Speaker>more. <v Narrator>Not all seniors losing their sight are as fortunate as Edna. <v Narrator>Many have no families to return to and few friends to lend support. <v Narrator>But Edna says that all those years living alone taught her a valuable lesson <v Narrator>that when the thought of total darkness became unbearable, there was always something <v Narrator>inside to pull her through. <v Edna Hogan>Hereby say Surely <v Edna Hogan>the darkness shall cover me, even <v Edna Hogan>the night shall be <v Edna Hogan>light about me. <v Edna Hogan>Yea, the <v Edna Hogan>darkness hide it not from thee, but the night shineth as the day. <v Narrator>Jim and Diana Martin have 5 children, 2 of whom are blind.

<v Narrator>5-year-old Andrew is sighted. <v Narrator>So are 10-year-old, Jimmy, and 11-year-old, Margaret. <v Narrator>Leber amaurosis syndrome has caused blindness in the Martins' youngest children, <v Narrator>3-year-old, Stephen, and 1-year-old, Jeannie. <v Narrator>The Martins had never heard of Leber amaurosis before Stephen's birth. <v Narrator>The disease causes blindness in 1 out of 4 children of parents with a rare <v Narrator>recessive gene. For babies born blind, few psychological problems <v Narrator>emerge early in life. They have no concept of the sense of sight. <v Narrator>And few realize they're different from other people. <v Narrator>But for the parents of blind children, especially those with no previous contact <v Narrator>with the disabled, the acceptance and adjustment process is heartbreaking <v Narrator>and unending. <v Jim Martin>When we found out Stephen was blind, I really felt devastated. <v Jim Martin>As if someone had just taken and pulled the plug right out of all my <v Jim Martin>desires and ambitions, and just I just felt my body was draining. <v Diana Martin>The first time it was hard to explain.

<v Diana Martin>Even thinking about how I felt just hurt. <v Diana Martin>I'd close my eyes and I didn't think I could ever survive a dark world because I don't <v Diana Martin>like the dark and I didn't like to think about it. It was just, like, <v Diana Martin>I'd rather die than face anything like that. <v Jim Martin>I remember the afternoon of driving home after we had it had been confirmed <v Jim Martin>through the test there at UC Med Center and uh <v Jim Martin>driving back to Petaluma how she and I just couldn't <v Jim Martin>say anything. We just uh were almost in shock. <v Diana Martin>Yeah. I actually was sick. <v Diana Martin>I, with the flu. <v Diana Martin>I thought it was flu. I just came home and had to go <v Diana Martin>to bed. <v Jim Martin>Just went right to bed, yeah. <v Narrator>As Stephen grew older, his parents realized he possessed all <v Narrator>the qualities of a normal 3-year old: imagination, humor, <v Narrator>and an immense inquisitiveness of the world around him. <v Narrator>Today, he wanted to explore our camera equipment. <v Jim Martin>And look, can you lift the lid up? [girls talking in background] Lift it real...good. That's good. Now feel it, isn't it...what's that bumpy?

<v Stephen Martin>That's rubber. <v Jim Martin>Is that rubber? <v Stephen Martin>Yeah. <v Diana Martin>Jeannie has a window screen. Listen...ooo, sounds good. <v Stephen Martin>I wanna do it. <v Diana Martin>Okay. <v Stephen Martin>That's a screen. <v Stephen Martin>I wanna turn the camera off right <v Stephen Martin>now. <v Camera operator>Okay, you can turn the camera off. <v Camera operator>Push the button. Push the button. <v Diana Martin>He's on the other side of the fence. Very nice cow. <v Diana Martin>I think he feels frustration of not not completely understanding his environment. <v Diana Martin>If I could just know what he's thinking, if I could see what he, picture his world it <v Diana Martin>would be easier. <v Narrator>It did become easier with the love and support of their other children and counseling <v Narrator>from the Blind Babies Foundation, the Martins were able to guide Stephen into an

<v Narrator>adjustment to his disability. Raising Stephen required a little extra time <v Narrator>and understanding, but what they learned from him and with him helped to overcome <v Narrator>those initial feelings of hopelessness. <v Narrator>And when Jeannie came 2 years later, they were emotionally prepared for another <v Narrator>blind baby. <v Diana Martin>We wanted another little girl and we thought she had sight. <v Diana Martin>And then we found out she didn't have very much. <v Diana Martin>And that was disappointing. One particular time, I took him to a supermarket <v Diana Martin>that knew of of Stephen, and then they watched that she wasn't responding <v Diana Martin>to trying to talk to her. <v Diana Martin>He um asked me if we didn't know that this could happen <v Diana Martin>again after Steven was born. And, by I said, well, yes, but <v Diana Martin>uh she was conceived and we were going to have her. <v Diana Martin>And I uh it was a possibility that she would be just fine. <v Diana Martin>And I was very upset to think that all that she was missing her eyes, her <v Diana Martin>eyesight, and I just told her that I just looked down <v Diana Martin>and I just I couldn't kill her.

<v Jim Martin>I have a sister who is very outspoken and uh, uhh <v Jim Martin>as soon as she found out that we had our fifth child, she was she <v Jim Martin>was disturbed at that. I think she's very population conscious and things like this. <v Jim Martin>And as soon as she found out that Jeannie had <v Jim Martin>a visual problem, uhh she was uh very, very outspoken. <v Jim Martin>She uh uh she said, how can you even consider <v Jim Martin>you know having a fifth child? <v Jim Martin>Do you like going around populating the world with blind children and things like <v Jim Martin>this? And of course, that hurt me very much. <v Diana Martin>[Stephen cries] Where did you get hurt, huh? Are you tired? <v Narrator>In the past 3 years, [music plays] the Martins have known more emotional pain than most <v Narrator>of us experience in a lifetime, yet raising Stephen and Jeannie, they say, <v Narrator>has taught them that blind children grow up just as sighted children

<v Narrator>do, needing love and giving love in return. <v Narrator>[music plays] <v Diana Martin>What did you and Lisa do? <v Narrator>The Martins and some of the other people you've met in our brief look at the adjustments <v Narrator>to blindness, all voice one concern. <v Narrator>One of the most important aspects of accepting a different darkness is self-esteem. <v Narrator>Our society views the blind and other disabled persons with the same hopelessness and <v Narrator>despair that the disabled themselves have fought so hard to overcome. <v Narrator>And rather than stand up to this public attitude, many succumb to the stereotype, <v Narrator>one that is hopeless, helpless and worthy only of pity. <v Narrator>The disabled are, for the most part, rejected by our society, perhaps because <v Narrator>they remind us of our own vulnerability. <v Narrator>In time, we may learn to look upon them as examples of the human ability to confront <v Narrator>adversity and to prevail.

<v Narrator>[end credits play with music over]