Here, There and Everywhere

Posts tagged ‘illness’

My Son Ryan

Profile of Jeanne White and her son Ryan. From Don’t Just Sit There, Do Something! Grief’s Wake Up Call.

jeannewhiteIn 1984, one week before Christmas, Jeanne White was told that her son Ryan had contracted AIDS from a blood product he’d used to control his hemophilia. The doctors gave him six months to live. Struggling to make life as normal as possible for her thirteen-year-old son, she attempted to have him return to school as soon as possible.

She did not realize the amount of fear and prejudice that would result when the school heard of his illness and refused to allow his return. After numerous court battles, which brought he and his mother to national and international attention, Ryan was allowed back in school, only to be inundated with hate, ignorance and abuse. As a result of their struggles Ryan was befriended by numerous celebrities such as Elton John, Michael Jackson and Phil Donahue and began to educate children and parents about AIDS by speaking at schools, appearing on numerous talk shows and news programs and having a movie about his life broadcast on national television. On April 11, 1990, five and a half years after his six-month prognosis, Ryan died. His funeral was one of the most publicized services of that decade.

Shortly after Ryan’s death his mother Jeanne, who had always been behind the scenes publicly, was asked by several senators to speak about Ryan to Congress in order to pass national legislation for AIDS education. She reluctantly agreed and was instantly thrown into the media spotlight. The bill, THE RYAN WHITE CARE ACT, was subsequently passed and Jeanne White became one of the most sought after speakers in the country. She founded the Ryan White Foundation and continues advocating for AIDS education and prevention with children, teenagers and their peers.

JEANNE WHITE:

A lot of times it takes a little push. Everybody likes feeling sorry for them selves over the death of a loved one. That’s kind of normal. With me it was Senator Kennedy and Senator Hatch who got me going and I fought it every step of the way. Ryan was always the public speaker not me.I was just following Ryan around. Senator Kennedy and Hatch had just named a bill after Ryan called the Ryan White Care Act and they wanted me to come to Washington DC. It was too soon. We had just buried Ryan two days before and they asked me to come anyway. They knew it was going to be hard, but they said, “You know, this is the first chance that we have of getting something done for people with AIDS.” They said, “Ryan’s death is so fresh on everybody’s mind, his illness and funeral was carried by every network for the last week and a half. This is the first chance of someone being in the public eye that takes the focus off the disease and puts it on to the fact that ‘anybody can get it.’”

I said, “Yes”. I said, “No”. I said, “I can’t, I really can’t. Ryan used to do that, not me.” On the second day people from Senator Kennedy’s staff called me again. They said, “Terry’s going to be there.” Terry and others had helped me through a lot of bad times. During all the years that Ryan fought AIDS the more people I knew that died of AIDS. And I had seen so many families just like me. Even though I didn’t want to get involved, so many people helped me that I kind of felt like I owed it to them. Then Senator Hatch called me and said, “You know, we’re not going to take ‘no’ for an answer. I have twenty-three senators lined up for you. All we want you to do is tell what it’s like to watch your son live and die with this disease.”

So I went to Washington and I’m so glad I did. It made me feel good. I didn’t feel I did great, not like I wanted to. I could have done better but I knew I was sincere in what I felt and said. After that, people wouldn’t let me stop.

Phil Donahue, who was a pallbearer at Ryan’s funeral, has become a very good friend of the family. When he was in the hospital visiting Ryan he noticed all the mail and could not believe how much was pouring in. He took a bunch of the letters back to New York with him and called saying, “Do you realize these letters are all from kids?!” I said, “Well yeah, that’s who generally wrote Ryan.” He said, “Jeannie, you’ve got to continue this work. You’ve got to answer this mail.” Phil said, “I’ll hire you an assistant.” There were over sixty thousand letters! Phil kept his word and with the help of Marlo Thomas and the St. Jude volunteers, they were able to find a lady that lived close by.

I was so impressed with Ryan, so proud of him. Sometimes I’d think, “Golly, is he really my son?” To me he was just my little kid, but to the nation, he was this celebrity and hero. I hated to even think that I could follow him, his impact was so great and people listened. When I speak I’m always a nervous wreck, even though I’ve been doing it now for years. I’ve messed up a lot, but I’m me. When I introduce myself I say, “I’m just a mom. I’m a mom just like your mom and because of this misunderstood disease called AIDS, my life changed overnight.” I say a prayer every time I go out. I say, “Lord, please help me to get through this. Help me educate these young people. Help me make a difference in their lives with my story.” Then I say, “Ryan, please be there with me.” Then I have this kind of surge that goes through me and I feel like its Ryan saying, “OK, Mom, I’m with you.”

I think we’ve made a lot of progress. By “we” I mean everybody who has committed so hard to fighting this disease with education and through therapy and drugs and medical treatment. I think we’ve come a long way. The people who have to be commended the most are the people that are not here. Their lives had to be lost for us to get where we are today, to show compassion. Even though I’m tired I’m still doing it because of the Terry Burns, the Mike Callums and the family members that I’ve seen.

One day we were riding in the van and Ryan reached over and grabbed my hand and started swinging it. I looked over and said, “OK, what do you want?” He said, “I don’t want anything.” “Come on Ryan, what do you want?” I continued. He replied, “Can’t a son hold his mother’s hand? ” I said, “Come on, you really don’t want anything?” “Mom, I just want to say thank you for standing by me, for always being there for me.”

I remember that moment when I speak to teenagers. You know, we always think everybody’s going to be here tomorrow, but one day you’re going to wake up and somebody’s not going to be there. I say, “You might think this stupid old lady up here doesn’t know what she’s talking about, but I do. The next time you go home from school, even if you think it’s the corniest thing you’ve ever done, write a letter to your parents. If you think you’re real cool and you can’t go up and hug them around their neck and say, ‘Mom. Dad. Thank you. I love you.’ Then write a note and put it on their pillow. Do something so that you’ll never be sorry.”

It would have been easy to be mad all the time at the people who ridiculed us, who discriminated against us, but we had to put our lives in perspective and look at what was really important and what wasn’t. Everybody saw on the news that it was this fight for Ryan to go to school, but the number one priority in our life was keeping him healthy. Second, was keeping my job at General Motors, because we had great insurance and it paid for all his medical bills. And the third part was my daughter Andrea, keeping us together as a family.

At first, it’s like, “Why?” Everybody wants to know why. Why wasn’t he given a miracle? All my life I was taught if you pray hard enough, if you believed hard enough, that you would get a miracle and you could never doubt that or you wouldn’t get one. I never thought Ryan was going to die. I just couldn’t quite understand that. I thought nobody had more people praying over them than Ryan did. I prayed, “Lord, wouldn’t it be nice to show this kid a miracle in front of the whole nation.” Everybody knew he’s lived with AIDS for five and half years. He’d been in and out of hospitals. He’s been blind twice. I mean, this kid had a heck of a life, why couldn’t he be given a miracle? When he died, it was like, “Why? What more could we have done?”

When he died I was really taken aback. I started questioning my faith. I think that’s normal. I mean, I started wondering if there really is a god? How does God let things like this happen? I see people around me all the time asking that question. “Why do young kids have to die?” I mean, anybody really, lots of other good people have died too. So then I started trying to find reasons.

After awhile it started to get clearer. “Look at all the things he’s done in his short life. He’s educated so many people. Wouldn’t we all like to say we had accomplished as much as this kid did in only 18 years?!”

I tell the kids that when I get to heaven I’m going to be angry. I hope the Lord forgives me for being angry, but I’m going to say, “Why did you have to take Ryan?” Then I say, “You know what I think he’s going to say? He’s going to say, ‘You know what, he was only supposed to live three to six months. I gave you five and a half years and you’re still not happy.’” Maybe I got a miracle. We had quite a few Christmases that we never thought we were going to have.

I didn’t want to lose my faith. I was mad at my faith. I was mad at my church. I was mad at my religion. I was mad at God. But I wanted to find a reason. I eventually started seeing things around me like the Ryan White Care Act and Elton John go through rehabilitation and get off of drugs and alcohol and I thought, “My goodness, Ryan touched more lives than I ever knew. Perhaps those people got miracles and they don’t know it.”

Michael (Jackson) was a real good friend of Ryan’s. When Michael called Ryan in the hospital once, Elton said, “With all the money that’s in this room, we can’t bring this boy back to life.” That was a real big realization to Elton . . . that he had all the money in the world, he had everything he could ever buy, but he could not buy his health. That’s why he entered rehab. When Michael called me after Ryan died, just to see how I was doing, I said, “I’m doing OK but what made you and Ryan so close?” When Michael would call, they would have long phone conversations. He said, “You know, most people can’t get over the awe of who I am, so nobody can ever act normal around me. Ryan knew how I wanted to be treated, because that’s how he wanted to be treated. I can’t trust anyone because everybody always wants something from me.” He could tell Ryan anything and Ryan wasn’t going to go blab it or tell it, you know. “I promised Ryan he could be in my next video and now that he’s gone I want to do a video for him.” He made a video called Going Too Soon, which was about Ryan.

It’s hard to talk about death. I didn’t want to talk about it because I didn’t really think he was going to die. I can remember him saying what he wanted to be buried in. I told him I really didn’t want to talk about it but he went on anyway, “I know you like me in a tux but I don’t want to buried in one.” I said, “OK, Ryan, what do you want?” I mean, it’s like, I’d say anything to get this conversation over with. He says, “I want to be buried in my Guess jeans, my red T&C (Town and Country) shirt, my Air Jordan’s and my Jean jacket.” He pauses, as I’m fading out, then says, “You know how people are when they’re lying in a casket and everybody is watching their eyes to see if their eyes move? I want my sunglasses on and I want to be buried in my boxer shorts.” “Your boxer shorts?” I exclaimed. He’d just switched from wearing briefs to boxer shorts and really liked them. “Why your boxer shorts?” I deadpanned. “You know that hernia I got? I want to make sure I . . .” He had a hernia that they couldn’t operate on because he had no platelets. “I want to make sure I’m comfortable.” And I thought, ‘Well, if you’re dead, I mean . . .’ “OK, just talk,” Ryan said. “You know, as a mom.”

One of the best things after Ryan died was when people talked about him. I think it was also good for me to get involved in something I truly believed in, doing something, instead of sitting at home feeling sorry for myself. That’s the easy way to go . . . feeling sorry for yourself. People didn’t let me, although that’s what I probably would have done if not pushed. But people were always talking about Ryan and people still do and that kind of keeps him alive within me.

More inspiring people at Don’t Just Sit There, Do Something! Grief’s Wake Up Call.

FINCA + YOU

Dear Gabriel and Colleagues,

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Vice President, FINCA

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Don’t Die!

From Angie’s Diary. Excerpt from Good Grief: Love, Loss and Laughter by Gabriel Constans.

Don’t Die!

I fell in love with Robin the first day we met. She was playing her role, as a recently admitted hospice patient, with great style and flair, while I lumbered through my part as the experienced “seasoned” social worker.

She wasn’t nominated for an Academy Award and didn’t give a damn about her looks. Her body looked like a skeleton with a layer of skin painted on with a thick brush. A blue and green scarf covered her almond-shaped, balding head. Her eyes sparkled like diamonds and her smile hung in the air like the Cheshire cat.

She had a warmth and graciousness that the worst ravages of metastatic breast cancer could not hide. Entering her small, low-income apartment by the sea, felt like entering a sanctuary or coming home for the holidays.

Her one-woman play about a terminal disease had about a two year run.

She talked openly about dying, but more about living. She wasn’t afraid of death, but she loved life. She loved her mother, her boyfriend, her family and friends. She loved music, art, beauty and nature. She was thirty-eight years old and she wanted to live until she was an old woman with grandchildren. She kept waiting for a new treatment, another remission, some kind of hope or miracle. It almost came twice.

An experimental trial with a new drug regime was supposed to be available through her HMO but kept getting put off, then delayed, eventually fizzling away into the land of false promises. Then came the dream of a cure with Angiostatin and similar therapies, which exploded across the media and public airwaves as “extremely hopeful cures for cancer tumors.” Again she was told of some local trials and assured that she was eligible to participate, but this too seemed to fade into oblivion as time slipped by, leaving her to use whatever means she had at her disposal – blood transfusions, medications, hospitalization, intravenous therapy, diet, herbs, detoxification, prayer, meditation, visualization – she tried it all, but the cancer kept chipping away.

STORIES CONCLUSION AT ANGIE’S DIARY

Just Around The Corner

Excerpt from Good Grief: Love, Loss and Laughter
by Gabriel Constans.

Just Around The Corner: Hope and Healing

I fell in love with Robin the first day we met. She was playing her role, as a recently admitted hospice patient, with great style and flair, while I lumbered through my part as the experienced “seasoned” social worker.

She wasn’t nominated for an Academy Award and didn’t give a damn about her looks. Her body looked like a skeleton with a layer of skin painted on with a thick brush. A blue and green scarf covered her almond-shaped, balding head. Her eyes sparkled like diamonds and her smile hung in the air like the Cheshire cat.

She had a warmth and graciousness that the worst ravages of metastatic breast cancer could not hide. Entering her small, low-income apartment by the sea, felt like entering a sanctuary or coming home for the holidays.

Her one-woman play about a terminal disease had about a two year run.

She talked openly about dying, but more about living. She wasn’t afraid of death, but she loved life. She loved her mother, her boyfriend, her family and friends. She loved music, art, beauty and nature. She was thirty-eight years old and she wanted to live until she was an old woman with grandchildren. She kept waiting for a new treatment, another remission, some kind of hope or miracle. It almost came twice.

An experimental trial with a new drug regime was supposed to be available through her HMO but kept getting put off, then delayed, eventually fizzling away into the land of false promises. Then came the dream of a cure with Angiostatin and similar therapies, which exploded across the media and public airwaves as “extremely hopeful cures for cancer tumors.” Again she was told of some local trials and assured that she was eligible to participate, but this too seemed to fade into oblivion as time slipped by, leaving her to use whatever means she had at her disposal – blood transfusions, medications, hospitalization, intravenous therapy, diet, herbs, detoxification, prayer, meditation, visualization – she tried it all, but the cancer kept chipping away.

She went to the hospital for one final assault, then returned home. It was a glorious Indian Summer when I saw her for the last time. I knocked on her weathered door, heard her call out “Come in.” and entered her tiny sunlit living room, which was also her bedroom, library and dining area.

Moving towards the head of her hospital bed, I saw that she’d been through the ringer and was losing ground fast. Her face was black, blue and yellow, as if she’d just been in a bar room brawl. Her skin was almost translucent, stretched over her frame like a sheet of white plastic. Her arms were as thin as straws and she struggled to breathe deeply. In spite of her frailty and obvious diminishing returns, her eyes still danced and she spoke vibrantly about life and healing.

“I hope my life made a difference,” she said softly.

“You know it has,” I reassured. “You’ve given such love.”

“Yes, I guess so,” she said and touched my cheek gently with her fingers. “That’s been the best part.”

“What’s next?” I asked tentatively, wondering what she planned to do with her remaining days.

She turned away, looked out her large window and watched a mother and daughter lean against the cliff side railing, their hair blowing in the wind, the child laughing, screaming with delight. Without changing position, she replied, “I don’t know. What do you think?”

Part of me wanted to run. My many years of listening and learning how to be present seemed to slip out the door. “I don’t know,” I said lamely. “Part of me doesn’t want to believe this day has come.” I followed her gaze, not really focusing on anything. My hopeless grasping continued. “I don’t want you to die.”

“Nice thought,” she smiled, “but just a wee bit unrealistic.” She rolled her eyes and grinned with amusement.

“Yeah,” I blushed. “It’s just . . . I don’t know . . .” I struggled to find the right words then looked her way. “How do you let go of everything you’ve known with such dignity and grace?”

“I don’t have any choice,” she said without hesitation.

“I know we don’t always have a choice over what happens to us,” I blundered along, “but we have a choice in how we respond to what happens, don’t we? If I was in your position, I’d be screaming and yelling to my last breath.”

Without blinking, she reiterated, “Like I said, I don’t have a choice. This is who I am.”

Robin died two days later. She died like she lived, tenderly and peacefully. I, on the other hand, keep wailing away at the ravages of cancer, thinking I have more choices in life than are probable and hoping a cure for cancer is “just around the corner.”

MORE GOOD GRIEF: LOVE, LOSS AND LAUGHTER.

Goddess of Cancer – Scene 2

Excerpt from Goddess of Cancer and Other Plays by Gabriel Constans.

Goddess of Cancer – Scene 2

Characters

GODDESS: Multi-cultural woman of no particular age. Face painted a variety of flesh tones. Hair a mixture of blond, brown, red, black and gray. Long rainbow-colored robe. Changes persona frequently.

VICKI: Asian-American woman in her twenties. Casual dress. Animated. Angry. Anxious. Scared.

WENDY: European-American woman in her thirties. Conservative dress. Quiet. Shy. Fearful.

JENNIFER: African-American woman in her forties. Business suit (beeper). Intellectual. In control. Avoids emotion.

LENNIE: Mexican-American woman in her fifties. Flowing skirt, flowery blouse. Insightful. Compassionate.

BARBARA: Arab-American woman in her sixties. Gray skirt and sweater (wearing a cross). Strong. Survivor. Dogmatic. Angry. Tired.

CHANTALL: Jewish-American woman in her seventies. Slacks and blouse (gray wig, in wheelchair). Humerous. Matter of fact. Sarcastic. Worried.

Setting

Living room. White couch center stage facing audience. White chair next to couch, stage left and black coffee table in front of couch. Large green plant on floor between couch and chair. Flowers in a vase on table. White door stage left. Three large pictures with red frames on wall behind couch. One picture is of the Grim Reaper, one is of an angel and the other an hourglass. Black bar facing audience stage right, with potted plant on its corner. A light switch is on the wall by the bar. Closed cupboard behind bar is full of cigarettes.

A slide-projector (with a color slide of each actor’s face shown at beginning of each scene) is placed on one end of the bar for the Goddess to operate or in front of the stage and controlled by a stage member.

Time: Afternoon or early evening. Present.

ACT I

SCENE 2

(Picture of Wendy appears on screen/wall.)

GODDESS: Wendy. Thirty-five. Legal secretary. Divorced two years. Uterine cancer. Previous surgery. I am spreading again but she doesn’t know it yet or maybe she does.

(Quiet knock on door. Goddess doesn’t answer. Another knock.)

GODDESS: Come in!

(Knocking continues as Goddess goes and opens door.)

WENDY: (Bewildered.) Hello. I’m not sure I’m in the right place.

GODDESS: Who ya looking for?

WENDY: The Goddess of Cancer. Is she here?

GODDESS: She is indeed. T’is I, in the flesh. (Bows.)

WENDY: Oh, I’m sorry. My name is Wendy.

GODDESS: Yes, I know. Come in. Have a seat.

(Wendy hesitates, then walks to chair and sits.)

GODDESS: Like some tea or mineral water?

WENDY: Yes. Thank you.

(Wendy looks at pictures on wall.)

WENDY: If you don’t mind me asking, who are the pictures of?

GODDESS: Oh, those . . . just relatives of mine. Sugar?

(One picture is of the Grim Reaper, one is of an angel and the other an hourglass.)

WENDY: No. Thank you.

(Goddess gives tea to Wendy and sits down on couch.)

GODDESS: So Wendy, what’s up?

WENDY: I’m not really sure. I had you two years ago and they took you out, but something’s not right and I can’t put my finger on it.

GODDESS: Something at work?

WENDY: No, no, work’s fine. A little hectic now and then, but not bad.

GODDESS: Your family?

WENDY: No, they’re fine. My parents live out of town, so I don’t see them much anyway.

GODDESS: Do you like living alone?

WENDY: It can get kind of lonely. I don’t have many friends and I work ridiculously long hours. I haven’t met any guy worth dating. Even if I did, they probably wouldn’t like me anyway.

GODDESS: Why do you say that?

WENDY: My husband left because he couldn’t hack it when I got sick and . . . you know . . . being half a woman and all.

GODDESS: Half a woman?

WENDY: He really wanted kids, you know? Once they removed my uterus he started slipping away. He stopped talking, wouldn’t touch me and acted like I was contaminated.

GODDESS: So . . . he only loved you when you matched a certain image in his head and couldn’t hack it when things got a little rough?

WENDY: Can’t blame him. What’s life without children?

GODDESS: Give me a break! What about your feelings, your dreams, your career, the rest of your life?!

WENDY: Yeah, sure. But I wanted kids so bad.

GODDESS: Ever hear of adoption?

WENDY: That’s not the same thing.

GODDESS: You’re right, it’s not the same thing, but it’s just as challenging. Giving birth only takes a few hours out of your life, raising them takes the rest. It’s a full time job, with highs and lows beyond your imagination. But, you might as well forget it.

WENDY: Why?

GODDESS: Oh . . . you know . . . it’s easier to just keep to yourself. You don’t want to meet someone and have them leave again, do you? What if you got sick? Why take the risk?

WENDY: Is their something you aren’t telling me?

GODDESS: Heavens no.

(Goddess looks at audience and winks.)

GODDESS: I’m just looking out for your best interests. I suggest you play it safe, don’t take any foolish risks and fall in love or anything.

WENDY: (Sighs.) Maybe you’re right.

GODDESS: Of course I’m right. Life is too scary to make commitments that just get broken anyway.

(Wendy looks around for a clock.)

WENDY: Excuse me, what’s the time?

GODDESS: I have no idea. What is time?

WENDY: What’s time? You know . . . appointments, meetings? It helps us keep on schedule.

GODDESS: Oh, right. Humans use it to measure the moments between birth and death.

(Wendy stands and lightly shakes the Goddess’s hand, then walks nervously backwards towards the door.)

WENDY: Right. um . . . I’ve got to go. Thanks for taking the time.

GODDESS: You’re more than welcome. I love taking your time.

(Wendy exits. Goddess turns towards audience.)

GODDESS: Should I have told her? No, she already knows. She wouldn’t believe me anyway.

(Goddess goes and turns off lights.)

Goddess of Cancer Continued – Tomorrow Scene 3

Hazel Johnson – Part 2

Excerpt from Don’t Just Sit There, Do Something! Grief’s Wake Up Call. Interview with Hazel Johnson (Born: January 25, 1935 Died: January 12, 2011). Photo of Ms. Johnson holding her Presidential Medal.

Hazel Johnson – Part 2

Looking back at dealing with the environment, I don’t see anything that I’d change. We did a lot of protesting and we had a lot of people working with us. When I started out it was just me. Later, we started organizing, we got people of color in, started working together, you know? We all work together, whether you’re white, black, brown or whatever and one group does not make a decision alone; we do it collectively.

We were at a University of Chicago meeting and one media person came and was really surprised that not one person was trying to make any decision on what was going on . . . that we talked it over and discussed it . . . and it worked very well. He said he’d never seen that done before. We still do that today. Somebody needs support we are there and if we need support they are here.

I wasn’t educated or nothing. I self taught myself. I have a girlfriend who just died a couple months ago and I was talking to her about my personal problems. You know when you’re stressed out you want somebody to talk too? She’d always be the person I’d talk too since I didn’t have any brothers or sisters. She said, “I’ll be your sister.” She said, “God has you here for a reason.” You see I’m the first of four children and the other three didn’t live past a year. So she always said, “God has you here for a reason.”

When I started getting in to the environment and questioned people about different things, everybody was willing to share information with me. A lot of times when you’re doing things you look for a little negative, or something that throws you off, but I never did have that. By people being so willing to share information with me, I thought about what my girlfriend said and thought, “Maybe this is my purpose in life.” Then, as I went along, things started going well for us. I decided this must really be what I was here for. Even though I had a lot of negatives, I didn’t let it stop me because I felt this was something I had to do. That’s what makes me continue working as hard as I’ve worked. I’ve had some problems with the politicians and I say, “Forget them. I’m going to do what I have to do.” I felt I had to do it and I done it. Like four or five o’clock in the morning, I had little visions of somebody, like an inner spirit would say something to me about how to go about doing things. That’s when I really started thinking that this was my mission in life. A lot of things could have fallen apart, but they didn’t. Not everybody can say they’re successful, but I can say that.

Sure, I’ve cried on many days from the situation I was dealing with. It was giving me a big headache, but I didn’t let it stop me. One of the most painful times was when my husband died, just ten weeks after he’d been diagnosed. That’s what really pushed me out, because I looked at him then later looked around and saw some of my neighbors that had died of cancer and it got me wondering, “Why are all these people having cancer?” I wanted to know why. I wanted to know what was actually going on. There were so many people. In one given week I knew of eight people that died from cancer. At another time we had seven infants that were born with tumors and died very early. One of them was a boy and the rest were girls.

We’d been married seventeen years. He was a construction worker. He was on a job and they called me and said he’d took ill and gone to the hospital. It was way on the North side. So I went to the hospital. During that time the hospitals were packed with senior citizens. They even had them in the lobby. Some kind of illness was going around that year. They didn’t have a room available to put him in. Then we took him home and he stayed there awhile. Then we took him to Rosen hospital, not to far from us. He stayed in there a week, came home, stayed a week, then went back in the hospital and that’s when they found out he had cancer. The reason I remember it all so well is the day he took ill was my oldest daughter’s birthday. She’d just turned sixteen. Ten weeks later he was gone. He had lung cancer.

We have seven children. The oldest one was sixteen and the youngest was two when he died. The youngest is thirty now. I have eight grandchildren and one great grand. I’m sixty-two. That’s why I’m tired and ready to retire. I’ve been working all my life.

My husband’s death was my first major loss as an adult. My mother and my little brother died and my father too, when I was young. I don’t have hardly no relatives, but I have some good friends and two of my husband’s sisters and I are real close. There were a few neighbors of mine that really stuck with me during that time. When they called and told me about my husband, they didn’t tell me he expired, they just said come to the hospital right away. I called my husband’s brother and my neighbor, who by the time I got a ride she came with me.

Come to think of it, I’ve always been helping other people. Just thinking about Lionel . . . that was a hurting thing for me. I had sit up with him that night and went home about twelve o’clock. I’ll never forget that. By the time I got home from staying with him in the hospital I got a call saying he’d expired. And that really hurt because having just left him he looked pretty well. I’ve been finding out that many people who are real ill, that just before they expire, they do a lot better. That happened in my husband’s case and in this young man’s case. He was like a son of mine, you know? In fact I’ve had a lot of sons. You’d be surprised. (Laughs). Um hum. And now they all call me granny.

And I’ve always been helping older women. Um hum. An older friend of mine just passed last January, who I’d been looking out after. Her name was Irene. Before her was Ms. Austin and before her was Ms. Bessie. Maybe I catered to these older people because they were like a mother to me. You know, a mother figure. Mine died when I was twelve. And dealing with older people, they can tell you things that happened when they were young. Some very interesting stories they be telling. I’d like to listen to their stories and the things they used to do.

I grew up in a Catholic school. Years ago the Catholics were much stricter than they are now. I think that really helped me to be more of a religious person. I guess it just stuck with me. The majority of the things I’ve done had to be with the Almighty’s help in order for me to be successful.

I feel good now with a program we have that trains young people how to remove lead and how to respond to emergency crisis. Some of them got jobs from that. We’ve been doing this around three years. We help them to be certified by the state of Illinois. We have a list of contractors that we call and tell them about our trained folks and they get work.

We’ve also been getting into rehabbing apartments. This is our first try. We’ve just about completed it and the city likes what we’re doing so now they’re going to give us some other apartments to do. They’re really happy with the work the people have done.

We’ve been pretty fortunate. The only thing I wish is that we had a little more money coming in so we could do more. But when money is like peanuts, you can’t do the things you’d really like to.

Some universities have been ripping off community people. I was at a meeting in March and a lot of people were complaining about the same things. Here I was having problems with a big time local university. A lot of times they write these proposals and the community don’t know anything about it. They get money for a supposedly joint project with the community and we don’t even know anything about it. So I went to NEJAC (National Environmental Justice Advisory Counsel) and proposed some issues to help resolve the problem we were having with universities. And I spoke to a lawyer who helped me out a lot. Now I’ve got to fight to make sure it gets enforced. Because a lot of times they’ll come up with something then just leave it there and it does no good. That’ll be my next project.

If I died tomorrow I’d want people to remember that I tried to make a difference for the enhancement of folk’s lives. That’s how I’d like to be remembered. The way I look at it is that maybe by me doing some of the things that I’m doing it may help other people. It can’t help those that have already expired, but it will help make people aware of some of the problems like the lead program, where we’ve had the CHA (Chicago Housing Authority) go into the apartments and remove the lead. That’s my biggest concern now, is how lead poison is effecting so many children. They eat the paint because it tastes sweet.

Another thing we’re soon going to be working with is water pipes. A lot of our pipes have been installed so many years ago that they’re starting to deteriorate.

My daughter’s interested in helping also. We’ve been here fifteen years and she’s been working with me ten. She knows the inside and the outside of everything that’s going on.

It’s not really that important about me. The thing I’d like to see is people standing up for their rights. That is my biggest concern. People don’t know that they can move mountains. I want people to see that if they stand up for their rights a lot can be accomplished.

Some people say, “Watch out, you say that stuff and they’ll put you out!” People are afraid to do some things, but I’m not. I don’t care who you are. If I feel that you’re violating me, then I’m going to stand up to you. And I don’t do it in no nasty way. I tell people, “You can like me the next moment if you want to or dislike me, it doesn’t make no difference.”

THE END

Hazel Johnson – Part 1

MORE INSPIRING STORIES

The last thing on my mind?

“My friends keep telling me I have to ‘get out more’ and meet somebody new.” Jan stated. “Don’t they realize it’s the last thing on my mind?”

Jan’s husband of thirty years died just two months ago.

“My mother says I should stop thinking about Kathy and live in the present.” Jamal said tearfully. “But I can’t just turn her off.”

Jamal’s girlfriend, Kathy, died in a car accident on Thanksgiving Day twelve months earlier.

Steve says, “I’m not sure if this is right or not, but I met this lady and there might be something going on.”

Steve’s partner of fifteen years died after a long illness three months prior to meeting this woman.

“When is the right time?” Victoria asks. “How do I let myself get involved with anyone else without comparing them to Frank?”

Victoria’s husband Frank died at age thirty-five, leaving her alone with two small children.

“I haven’t gone out on a date in thirty years.” Sally proclaimed. “I have no idea where to begin. The thought of it terrifies me.”

Sally’s husband of thirty years died the previous year.

“This woman I’ve known for a long time asked me out,” Paula says. “I’m afraid to get involved again. I’m afraid I’ll forget Candace.”

Paula’s longtime friend and mate, Candace, died in her forties, after years of battling cancer.

“This may sound strange,” Roberta explained. “But whenever I’m making love with Cliff, I wonder if Mark is watching us from somewhere and I feel guilty.”

Mark died from a heart attack just two weeks before he and Roberta would have celebrated their ninth year of marriage.

“I’ve never loved anyone as much as I did Sylvia.” Dale said. “I’ll never find that kind of love again.”

Sylvia and Dale had met when they were in high school. She died in his arms after struggling with lung disease for six years.

When is the right time? How do you know when or if you should get involved with someone again? Is it disrespectful or unacceptable to date, “go out with”, “be involved” or “have a thing” for someone else after you’re loved one has died? What if you never want to be with anyone else again?

These are a few of the many questions that arise after a lover, partner and/or spouse has died. There are no steadfast rules or secret formulas to reassure someone that is experiencing and contemplating such thoughts and concerns about loving again, but there are some observations and suggestions that may provide some comfort and reassurance. Here are some of the replies I’ve given to those asking these painful, lonely and often conflicting questions.

There is no perfect or “right” time to have another relationship.

You may choose to never marry again and that’s OK.

No matter who you join up with in the future, nor how deeply in love and involved that relationship becomes, you will never forget the person you lost.

Other people want you to “go out” again, not because you necessarily should or shouldn’t, but because they wish to see you happy and they think another relationship will provide that kind of happiness and be the magic pill to “make you feel better”.

Most people who have experienced a good marriage or partnership have a natural desire, at some point in their lives, to repeat that experience.

Look closely and honestly at your motivation for companionship. How much of your wish to be with someone else is out of loneliness and need? What values or interests are you ignoring in order to “be with” someone else? Can the person you develop a new relationship with accept and understand that your deceased mate will always be part of who you are?

Loving another person and being loved by another, is a natural human need and desire. To do so shows no disrespect for the one that has died.

There is plenty of room in our hearts to hold the loved one who died and love another. We don’t have to throw one person out in order to make room for someone else.

You will never have an identical love or relationship with another, as you had with the person who died, but that doesn’t mean you can’t experience the same intensity or depth of connection with someone else. It won’t be the same, but it can be just as profound and intimate.

Some people choose not to have another lover in their life and are perfectly happy. Others stay alone out of fear and some because of circumstances beyond their control.

Many times the questions surrounding when to or not to get involved with another comes from our fear of losing someone again. When we have recently lost a loved one, we are more aware than most of the reality of our limited lives and realize the fact that separation and pain will occur at some point in all relationships, either by one person choosing to leave or by death. We consciously and most often unconsciously, tell ourselves, “If I let myself love again and become intimate and attached to another, that person may leave or die as well. I don’t want to experience that kind of pain again.”

Such reactions are entirely understandable. We all try to protect ourselves to varying degrees and lengths from painful experiences, but to do so at all costs ends up being to costly. It cuts us off from other aspects of life.

Tennyson’s question remains. “Is it better to have loved and lost, then never loved at all?” We much each find within ourselves when, how and/or if we choose to love again.

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