Here, There and Everywhere

Posts tagged ‘fear’

Breathe Through the Story

51Zxe5MHNvL._SX385_BO1,204,203,200_.jpgAnxiety & Panic Workbook: Stop Stressing, Start Living by Jodi Aman. Reviewed by Gabriel Constans.

It’s one thing for friends, books, family, TV, counselors, or others, to tell us what we should do or not do about a problem, and something entirely different when they show us “how” to do it. Changing our habits, conditioning and fears, isn’t easy. If it was, we would have done so on our own a long time ago. Enter Jodi Aman and her Anxiety & Panic Workbook, which not only clearly defines anxiety, but shows us how to overcome it.

Ms. Aman has lived with anxiety herself for many decades, thus she is speaking from experience, and not some theoretical therapeutic idea about what it is like, or how to live with it. The National Institute of Mental Health has shown anxiety to be the number one mental health problem in the U.S. Thus, there is a large audience of people who can readily relate to how difficult anxiety/fear can be and how often it stops us from living a complete fulfilling life.

There is lots of space in the workbook for readers to answer the thoughtful, and important questions that are asked, and help clarify and identify how anxiety effects us personally, and to what extent. Ms. Aman talks about the importance of motivation, and having a vision of what life can be, as opposed to simply wishing to be free of what is. She says, “‘Want’ and ‘can’t’ are ideas, not truths.'” The book helps us get to know anxiety, as opposed to trying to avoid it or get away from it.

The Anxiety & Panic Workbook is laid out in an easily accessible manner, is clearly well thought out, and can help many. Her five rules for a happy life are: 1) Make people important. 2) Step back. 3) Have fun. 4) Be Creative. 5) Practice doing hard things. It is, of course, easy to come up with five “rules”, and another to learn how to practice them. That is the gift of this book – it shows us how, and not just why. The following was especially poignant, in referring to anxiety, and what we tell ourselves about it. “It is all just stories. The story is not over. It continues to change. Breathe through the story.

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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.

My Mother Was Murdered

Excerpt featuring Lee Mun Wah. From Don’t Just Sit There, Do Something! Grief’s Wake Up Call.

lee-mun-wah“Your mother’s been murdered!” The woman who gave you birth is dead. Her life intentionally ended by another man. This was the cold reality Mr. Lee had to face in 1985. Feelings of fear, anger, rage and revenge soon replaced the numbed existence of shock. Instead of letting these intense, understandable reactions control his life, Mr. Lee searched for answers. He began to reach out, to confront and explore the ingrained, unconscious attitudes that lead to hate and violence, and discovered a way to shift the imbalances of power, heal the wounds and open our hearts.

As a seminar leader, speaker and filmmaker, Mr. Lee’s work has been highly visible, effective and utilized throughout the nation. His first film Stolen Ground, about racism towards Asian-Americans, won special merit at the San Francisco International Film Festival. His second video, of a weekend encounter group for men, The Color of Fear, won the 1995 National Education Media Award for best social studies documentary and has been used in thousands of organizations and businesses to deal with and discuss prejudice, bias and race. 

LEE MUN WAH:

I was born in Oakland, California at a time when people were living in mixed neighborhoods. I had a real glimpse of what a community could look like with all different ethnicities. My parents were very poor, though as a child I didn’t know that. Some of the distinct things I remember were that there were very few Asians in my classes and very few or almost no Asian-American or African-American teachers. When I noticed this consciously it became a real loss.

I was born into a very alive, dynamic family. I always thought that all Chinese families were like this. It wasn’t until later that I realized my father was a very unique man who really believed in going out in the world and creating what you wanted. He influenced me greatly in that way. My mother was very warm and personable; very intimate and in that way created my sense of family, of being close to people.

A lot of these life experiences prepared me, without my knowing, for the type of work I do now, when I talk about the country having a national relationship. It’s about how a family treats each other. I don’t think it’s just a sense of family, it’s also part of our Asian, Chinese culture . . . that we’re there for one other . . . that we respect and honor each others needs . . . the warmth, security and safety of a family . . . being up front and honest . . . trying to be a good person in the world and with those you meet. A number of people have that in there culture as well, but I don’t think many have made the connection of family into a larger community, in a global or workplace perspective and I think that is the missing link.

The American thing is often, “Me, me, me!” Business is first and task oriented and not loyal to workers. When business is down or they’re “restructuring” and they lay you off, they’re actually saying, “You are no longer needed, the company is more important.” It isn’t about taking care of the people who work for you but about having them compete with each other. I don’t run my family or workplace that way. And when I go out into the world that’s something I work for, to change that paradigm.

I don’t think you can legislate an end to racism. You have to have a change of heart. That’s why I talk about a relationship. It’s the only real connection we have. Often, we don’t act until there’s a crisis. What we need to realize is that the crisis is happening every single day and there’s always something you can do to address it.

We’ve never understood culture in this country. We think it’s the food, the costume or the holiday, but we don’t touch what it really means to us on a spiritual, emotional, ancestral way. When the American Indian tells us that it’s not enough to pass the sage around the room but to really understand where that comes from. To understand the relationships and the way we treat each other; that it’s really expressed in our movements, in what we don’t say, the way we hold each other, the way we wait for and acknowledge one other. We don’t take the time to really look, to really experience. Americans want everything fast . . tangible. The American Indian is right when they say, “You want my customs, my rituals and my land, but you don’t want me.” What we do is we use people and cultures. We use them when it’s convenient, for a service, for artifacts. Rarely do we take the time to understand how we relate to each other.

We don’t look into the realm of what we don’t know. I think that’s the part I’m talking about. When I do workshops I have people look around the room, listen to silence; listen to what’s not being said, to bodies that are talking all the time. We usually don’t listen to the nonverbal, to the energy in a room, to the impact of our ancestors that have brought us to this place. We are very present and future oriented but don’t pay enough homage or respect to the past. When are we open to learn from other cultures . . . to integrate values from other cultures? When companies say they’re multi-cultural or multi-racial I ask them to name one cultural factor they’ve integrated, that they see as practical, as useful, that they use every single day.

The turning point for me (after my mother was murdered) was when I wrote a play in which I acted out facing my Mom’s murderer. It also helped to look at the context from where it came. I tried to find and talk to the man who killed my mother, to no avail. On the day we finished The Color of Fear he was sentenced to life in prison. He’d killed four or five other women in addition to my Mom. Before that I had continued trying to contact his family. It turns out that some of his relatives lived in a home we’d been renting. It was really shocking. I talked to the woman who lived there and she said a cousin of hers had killed someone as well. When she went to his trial she had to leave because all she could see was “The little boy I’d grown up with”. She told me, “You may never know why he did it.”

Had my mother not been murdered, I’d never had made the film (The Color of Fear). I began to really see and sense that perhaps there was a meaning to this. It serves my healing and in many ways it’s healing for this country as well, because surely if I can go through this then others can open their hearts and have compassion as well. I’m not so sure hatred or guns or bars do any good . . . it only makes fear larger. Fear is not something you can protect yourself from, you have to walk through it.

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

Man Up

An excerpt from Good Grief: Love, Loss & Laughter.

“Be strong.” “Bear up to pain.” “Be dominant and decisive.” “Provide for others.” “Endure.” “Don’t give in.” “Compete and win at all costs.” “Don’t cry like a baby or a girl.” “Remain rational, unemotional and logical.” “Accomplish, achieve, perform.” “Be assertive, in control and one step ahead of the next guy.”

man-crying-crop

These are some of the messages given to young boys and men for thousands of years. We’ve heard it from lovers, parents, families, friends, religions, governments, the media and other men since birth. Some of the messages of expected behavior are blatant and others more subtle. Some are proclaimed orally or in print, and others are non-verbal and observed by actions and deeds. “Don’t cry.” “Never, ever, express or convey fear, dependence, loneliness, emotion, weakness, passivity or insecurity.”

It’s only been in the last forty to fifty years, since the modern women’s movement (in some areas of the world), that these cultural, familial and religious norms and expectations have been questioned, debated, challenged and/or changed. Within this short span of freedom from such rigid conditioning, some men have chosen (consciously or unconsciously) to embrace these norms and continue the cycle. Others have revolted against them altogether and thrown out the positive attributes of such expectations, along with the negative. And others swagger back and forth between the past and the present, in a state of confusion, bewilderment and loss.

Regardless of how one lives, when a man loses a loved one, by death or separation, they can be thrown into an unknown world of pain that casts their beliefs, personal expectations and accepted ways of being, into an ocean of doubt, turmoil and isolation. Loss causes an eruption of feelings, fears and thoughts that fly in the face of what it has meant to “be a man”. Feelings of fear, anxiety, depression, emptiness, doubt, confusion, helplessness and indescribable pain can assail our very concept and perception of who we are.

Efforts at avoiding, “toughing it out”, controlling or “getting rid” of the pain of loss, only result in temporary relief, often at the expense of long-term health, and rarely change the reality of our condition. The pain of grief is one of the few kinds of pain in life that are best dealt with head on, by doing something men are often taught to avoid. The pain of grief and mourning tend to change and heal with time and attention, when we can honestly acknowledge what we are feeling, thinking and believing and externalize such reactions in a positive, healthy environment and/or manner.

Men and women all experience the pain of grief and loss, and both genders feel its impact in many of the same ways. What tends to be different about the sexes is the way in which we talk about and verbalize such feelings and experiences. We may filter them differently. Men often talk about the things we did for our loved one, how we took care of them, what we’re “doing” now and what we “plan” to do in the future. We blame others or ourselves for something that did or didn’t happen, or something that could have been different; something that would have spared us the pain we are now experiencing. Our anger, guilt and reasoning; are ways we try to control and make sense out of our grief and the situation it has put us in.

Though it is a generality and never true at all times, with all men or all women, men tend to speak “about”, instead of “of” or “with”. If I asked a gentleman how he’s been “feeling” or what had been the “most difficult” about the loss of his wife, partner or parent, he might look at me as if I was speaking Russian (unless he speaks Russian). If, on the other hand, I questioned his “reactions” or asked him to tell me a story “about” the deceased, he would begin to take the road to the same valley of pain that a woman experiences, but get there from a different route.

Ironically, men often seem to be more emotionally dependent on women for their sense of self, than the other way around. Remember that I am speaking in generalities. There are thousands of exceptions. The women in a man’s life are who he tends to share his most intimate needs, desires and fears with, as it is seldom safe or accepted to talk about such things with other men. Thus, when a woman mate, friend or mother dies or leaves, men have nobody to whom they feel they can acceptably turn to, and their need for intimate human contact and emotional well being is left in a desert of thirst for companionship, friendship, validation and/or physical contact.

Many men, though not all, also connect physical touch with sex, because it is one of the few occasions in their lives when they are permitted, or expected, to touch or be touched. To hug, kiss or embrace another man or woman, aside from sex, is frowned upon and charged with a variety of expectations, judgments and fears. Thus, after the death of a loved one, men often do not know how, where or when it is acceptable, or possible, to have any human contact that is not sexual.

Luckily, there are people, men and women, who are willing and able to listen to men’s lives and experiences surrounding grief and loss. There are places where a man can be held, without any sexual involvement or expectation of such. There are people within families, churches and communities that honor and respect our gender’s differences without putting limits or expectations on what those differences can or should be.

If you, or a man you care about, has experienced the loss of a loved one, give yourself, or him, the comfort, permission and love that all humans need, regardless of gender and provide the personal or community resources that can help the hurt change to healing and positive action.

Further reading at: Good Grief: Love, Loss and Laughter.

We Have Everything To Fear, Including Fear Itself

An excerpt from the succulent Zen Master Tova Tarantino Toshiba: The Illustrious and Delusional Abbess of Satire.

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A wild tiger was being itself . . . wild . . . and scaring a nearby community. They asked Master Tarantino if she could rid them of the perceived menace. Though no humans had been attacked and the tiger kept to its own area in the forest, the people lived in fear that one day it would decide to have one of them for lunch. The Master agreed to go speak with the tiger.

Upon arriving in a clearing in the middle of the forest, Master Tarantino sat on a soft anthill and waited. She waited patiently. The ants didn’t seem to mind, other than a few thousands that crawled up and down her body, underneath and on top of her garments, to investigate the strange large object that had caved in their roof. The sun set and arose and set and arose again before she heard the tiger’s footsteps.

“Well, it’s about time,” she said to the unsuspecting tiger, which stopped short in his tracks. He sniffed the air to see from which direction the sound had originated and soon saw the woman sitting atop the ant community. “The people in town are afraid of you and asked me to make you go away.”

Of course, the tiger didn’t speak English or human for that matter, so all he heard were squawking sounds that arose and fell from the mammal he assumed was trying to communicate.

“People are scared of the unknown,” Master Tarantino continued, “and do not realize that we are all one and connected. You are no different than I. We have simply been born into different looking bodies and circumstances. You cannot grow vegetables or fruit trees and thus need your fangs and claws for protection and to catch your food.” The tiger remained as still as a statue, not yet certain if this creature was friendly or foe. “Therefore, we kindly ask that you consider living somewhere else, stay away from town and promise not to eat any people.” She suddenly stood, raised her arms, and bowed. In so doing, her sleeves flapped in the wind and frightened the poor tiger out of his wits. He reared up on his hind legs, turned, and ran as fast as he could.

Master Tarantino returned to town and told the villagers that she had spoken with the tiger and he was in full agreement. He had left immediately upon her request.

The tiger returned to its mate and told her about his encounter with the strange mammal. He said they looked dangerous and made quick threatening motions. He warned her to not go into the city or anywhere near the smell of such terrifying creatures.

More phenomenal stories, & tales, at Zen Master Tova Tarantino Toshiba: The Illustrious and Delusional Abbess of Satire.

My Son Ryan and AIDS

Excerpt from Don’t Just Sit There, Do Something! Grief’s Wake Up Call.

In 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.

CONTINUED

Lee Mun Wah – Color of Fear

Excerpt from Don’t Just Sit There, Do Something! Grief’s Wake Up Call.

“Your mother’s been murdered!” The woman who gave you birth and taught you the meaning of love, care and family is dead. Her life intentionally ended by another man. This was the cold reality Mr. Lee, his father, grandparents and siblings had to face in 1985. Feelings of fear, anger, rage and revenge soon replaced the numbed existence of shock. Instead of letting these intense, understandable reactions control his life Mr. Lee searched for answers. He began to reach out, to confront and explore the ingrained, unconscious attitudes that lead to hate and violence and discovered a way to shift the imbalances of power, heal the wounds and open our hearts.

As a seminar leader, speaker and filmmaker, Mr. Lee’s work has been highly visible, effective and utilized throughout the nation. His first film Stolen Ground, about racism towards Asian-Americans, won special merit at the San Francisco International Film Festival. His second video, of a weekend encounter group for men, The Color of Fear, won the 1995 National Education Media Award for best social studies documentary and has been used in thousands of organizations and businesses to deal with and discuss prejudice, bias and race. Mr. Lee’s current project, Walking Each Other Home, provides both an example and a means for Americans to understand, accept and support our honest differences and realities while honoring the unique, compassionate spirit within us all.

LEE MUN WAH:

I was born in Oakland, California at a time when people were living in mixed neighborhoods. I had a real glimpse of what a community could look like with all different ethnicities. My parents were very poor, though as a child I didn’t know that. Some of the distinct things I remember were that there were very few Asians in my classes and very few or almost no Asian-American or African-American teachers. When I noticed this consciously it became a real loss.

I was born into a very alive, dynamic family. I always thought that all Chinese families were like this. It wasn’t until later that I realized my father was a very unique man who really believed in going out in the world and creating what you wanted. He influenced me greatly in that way. My mother was very warm and personable; very intimate and in that way created my sense of family, of being close to people.

A lot of these life experiences prepared me, without my knowing, for the type of work I do now, when I talk about the country having a national relationship. It’s about how a family treats each other. I don’t think it’s just a sense of family, it’s also part of our Asian, Chinese culture . . . that we’re there for one other . . . that we respect and honor each others needs . . . the warmth, security and safety of a family . . . being up front and honest . . . trying to be a good person in the world and with those you meet. A number of people have that in there culture as well, but I don’t think many have made the connection of family into a larger community, in a global or workplace perspective and I think that is the missing link.

The American thing is often, “Me, me, me!” Business is first and task oriented and not loyal to workers. When business is down or they’re “restructuring” and they lay you off, they’re actually saying, “You are no longer needed, the company is more important.” It isn’t about taking care of the people who work for you but about having them compete with each other. I don’t run my family or workplace that way. And when I go out into the world that’s something I work for, to change that paradigm.

I don’t think you can legislate an end to racism. You have to have a change of heart. That’s why I talk about a relationship. It’s the only real connection we have. Often, we don’t act until there’s a crisis. What we need to realize is that the crisis is happening every single day and there’s always something you can do to address it.

We’ve never understood culture in this country. We think it’s the food, the costume or the holiday, but we don’t touch what it really means to us on a spiritual, emotional, ancestral way. When the American Indian tells us that it’s not enough to pass the sage around the room but to really understand where that comes from. To understand the relationships and the way we treat each other; that it’s really expressed in our movements, in what we don’t say, the way we hold each other, the way we wait for and acknowledge one other. We don’t take the time to really look, to really experience. Americans want everything fast . . tangible. The American Indian is right when they say, “You want my customs, my rituals and my land, but you don’t want me.” What we do is we use people and cultures. We use them when it’s convenient, for a service, for artifacts. Rarely do we take the time to understand how we relate to each other.

We don’t look into the realm of what we don’t know. I think that’s the part I’m talking about. When I do workshops I have people look around the room, listen to silence; listen to what’s not being said, to bodies that are talking all the time. We usually don’t listen to the nonverbal, to the energy in a room, to the impact of our ancestors that have brought us to this place. We are very present and future oriented but don’t pay enough homage or respect to the past. When are we open to learn from other cultures . . . to integrate values from other cultures? When companies say they’re multi-cultural or multi-racial I ask them to name one cultural factor they’ve integrated, that they see as practical, as useful, that they use every single day.

The turning point for me (after my mother was murdered) was when I wrote a play in which I acted out facing my Mom’s murderer. It also helped to look at the context from where it came. I tried to find and talk to the man who killed my mother, to no avail. On the day we finished The Color of Fear he was sentenced to life in prison. He’d killed four or five other women in addition to my Mom. Before that I had continued trying to contact his family. It turns out that some of his relatives lived in a home we’d been renting. It was really shocking. I talked to the woman who lived there and she said a cousin of hers had killed someone as well. When she went to his trial she had to leave because all she could see was “The little boy I’d grown up with”. She told me, “You may never know why he did it.”

Had my mother not been murdered, I’d never had made the film (The Color of Fear). I began to really see and sense that perhaps there was a meaning to this. It serves my healing and in many ways it’s healing for this country as well, because surely if I can go through this then others can open their hearts and have compassion as well. I’m not so sure hatred or guns or bars do any good . . . it only makes fear larger. Fear is not something you can protect yourself from, you have to walk through it. CONTINUED

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