Here, There and Everywhere

Posts tagged ‘AIDS’

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.

Uganda Bill to “Kill the Gays”

Gabriel –

The speaker of the Ugandan parliament has promised she will pass the so-called “Kill the Gays” bill in the next two weeks — she called it a “Christmas gift” for the Ugandan people. The bill would legalize the death penalty for LGBT people and people with HIV or AIDS.

Uganda experts say that one way to stop this bill is to get pressure from banks that have significant resources invested in the country, such as Citibank and Barclays.

Citibank and Barclays together have hundreds of millions of dollars invested in Uganda and wield significant influence in the country, just as banking lobbyists wield influence with Congress in the US. Citibank and Barclays speaking out against the “Kill the Gays” bill might be the best — and only — chance to stop it.

Collin Burton is a Citibank customer who is also gay. Collin started a petition on Change.org asking Citibank and Barclays to speak out against the “Kill the Gays” bill. Click here to sign Collin’s petition right now.

Citibank and Barclays are both big supporters of LGBT rights for their own employees, yet they invest money with a government that is threatening to execute LGBT people. “I expect Citibank and Barclays to live up to the values of equality and fairness, not just list them on their websites,” Collin says.

If Citibank and Barclays speak out against the “Kill the Gays” bill, Ugandan legislators will see that they are risking the business relationships that keep their government afloat.

Click here to sign Collin’s petition asking Citibank and Barclays to issue strong statements condemning Uganda’s “Kill the Gays” bill. The bill could come up for a vote any day, so swift action is essential.

Thanks for being a change-maker,

– Mark Anthony and the Change.org team

The Skin of Lions

Short story from children’s story collection.
The Skin of Lions: Rwandan Folk Tales.
Edited by Gabriel Constans.

At one time, all of the children in this book lived on the streets of Kigali, the capital of Rwanda. Their parents died from the genocide in 1994 or from the AIDS pandemic. They have been given new life and hope at an orphanage called ROP Center for Street Children. The stories from The Skin of Lions are taken from their personal experiences, traditional folk tales or unique creative imaginations. The children range in age from ten to nineteen and tell tales for all generations. They share their words from a thousand-year-old oral tradition and speak for all those that have been silenced.

The Skin of Lions by AHIKIRIJE Jean Bosco (Age 17)

There was a man, named Cambarantama, who looked after his sheep and cultivated his fields. One day, while he was looking after his sheep and leading them to the grasses, he found a small animal in the bush that had eaten some of his crops. When the man came back the next day, the same small creature had eaten more of his crops. He took the little animal back home and said, “I’m going to have to kill you for eating my crops.”

The small animal said, “Wait; please don’t eat me. Forgive me and I will not eat your crops any more.”

Cambarantama had a good heart, forgave the little animal and let him go.

On his way back to the shamba (field) the next day, Cambarantama was approached by a very big animal. The big animal told Cambarantama that he had to kill one of the sheep in the field and give it to him for his kettle. Cambarantama was scared and did as he was told. He went and killed one of his sheep and gave it to the big animal. This kept happening day after day.

One day, on his way to his shamba, Cambarantama met the little animal that he had forgiven. The little animal said, “I see that you have less and less sheep. What has happened?”

Cambarantama replied, “There is a big animal that comes every day and makes me give it one of my sheep. That is why you see so few that are left.”

The little animal he had saved said, “The next time that big animal comes I will be next to you, hidden in a bush. I will tell you what to say.”

Cambarantama took his sheep to the grasses and the big animal once again came from the forest and told him it was time for him to give him another one of his flock, but Cambarantama said he would not give him any more. The small animal was hidden next to Cambarantama and spoke out loud.

“Who are you talking to?” asked the big animal.

The small animal said loudly, “I am the king of heaven and earth who puts on the skin of lions.”

“Who is that?” asked the big animal.

“What are you looking for?” shouted the little animal, hidden behind the bush.

The big animal was scared and said, “I . . . I’m just looking for firewood.”

“Sit down and don’t move!” shouted the little animal, who then whispered to Cambarantama to get the firewood rope and tie the hands and legs of the big animal.

That is how Cambarantama captured and killed the big ferocious animal and saved his sheep, with the help of the little vegetable eating animal he had forgiven.

MORE STORIES

(All proceeds from sale of book go to ROP Center for Street Children.)

Erik Is Not Alone

Erik’s story was written by Lukasz Zielonka for ROP Stories, one of the sites for ROP Center for Street Children and the Rwandan Orphan’s Project.

Erik’s Story

Erik sat on the plastic chair and looked deep into my translator’s eyes. Late afternoon light brightens every detail of his face, lost somewhere in the shadows of this tiny, little room.

Erik NYANKURU is just ten years old, but the way he looks at me is so mature that he could be one of us. A life’s worth of struggle and sadness condensed into a short, ten year life.

He was born in Gitarama, in south-west Rwanda.

It all began when he was seven. His mother had AIDS. Apparently she had an affair with a neighbor who passed the disease to her. When his father, Maurice Niyonkuru, found out about her sickness and about her lover he decided to kill the man – Erik doesn’t remember his name. Maurice had a very bad reputation in the area. He was ruthless and he liked to fight. His mother’s lover was afraid for his own life and finally left to Uganda.

Every day Erik was getting up very early to take care of his mother, washing and feeding her even when she was screaming in unbelievable pain.

She was the one who he remembers the most. She was always with him and his two older brothers when he was younger. She played with them, she taught him how to read and write, because they couldn’t afford to go to school.

One night he had a dream about his beloved mother. She was lying in her room screaming, coughing and calling his name but every time when he reached her she was dead. He woke up all of the sudden and ran to her bed. She was still breathing. Next day she seemed to feel better and hopeful, but soon after she seemingly gave up her fight with the disease. Erik believes she was waiting for the angels from heaven. She didn’t wait long.

After her death Maurice, Erik’s father, was accused of participating in the genocide by a Gacaca, the traditional community court of Rwanda. The tribal court issued a sentence of 15 years in prison for him. He was found responsible for many deaths and convicted as being one of the most enthusiastic killers.

Erik decided to leave Gitarama along with his neighbor Charles to Kigali. His older brothers stayed at home and since that day he has never seen or spoken to them. He was too busy taking care of himself.

His first week in the Rwandan capital was spent with Charlie’s family, but after that they told him to leave. He had no place to go, no place to hide and no one to talk to. He sold all his clothes, covering himself only with an old, dirty rug. He spent all his money on food.

Very quickly he became friends with Jean-Paul, a boy at the same age, who was very experienced in living on the street. He belonged to a group of young boys and Erik was very happy to join them.

They were trying to forget about the misery of their lives, and very easily did so with easy access to alcohol, cigarettes and drugs (he often inhaled the fumes of diesel engines). They were stealing charcoal from people’s houses and they were trying to sell it for any price. Soon they got into trouble with the police. They were arrested, but Jean-Paul, Erik and three more boys were able to escape from the police truck.

After five months on the streets he was well respected among the other kids, ‘trained’ and well versed in the area – especially the busy, dangerous Nyabugogo bus station. This doesn’t change the fact that he and the other boys were still spending nights sleeping in bushes or under the bridges.

The Rwandan Orphans Project Center for Street Children in Nyabugogo was well known to them – it was in their neighborhood. One day Erik was passing next to this orphanage, when suddenly someone called to him and later introduced himself. He was a staff member of the ROP Center. Erik was seduced by possibility of receiving regular meals and had agreed to join this facility. Initially it was very hard for him, but after the whole orphanage was moved to Kanombe he found peace and solace. Now he is a happy boy and he has hope – something he has never experienced before.

The hopelessness of everyday life has ended and as Erik says ‘I want to live to show other kids that life does not end up on the street’.

MORE STORIES

Rwandan Orphan’s Project

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

Paging Doctor Leff: Pride, Patriotism & Protest

The following excerpt is from Paging Doctor Leff: Pride, Patriotism & Protest. Paging Doctor Leff is the biography of an idealistic boy from New York who joined the Civil Air Patrol for God and country and never looked back. Dr. Arnie Leff, MD has fought many wars, overseas and at home. He stood up to his superiors in the Air Force during Viet Nam; locked horns with corporations and state bureaucracies as health commissioner of Cincinnati; jumped into the trenches at the beginning of the AIDS pandemic; and has pulled no punches with his often controversial opinions about drugs, euthanasia, health care and medical marijuana. He is presently a professor at Stanford University School of Medicine.

***

In 1986, people were just starting to feel their way through the dark when it came to understanding and treating AIDS.

Dr. Leff, who had been in public health for over 20 years (as an officer in Viet Nam, director of the Cincinnati Public Health Department and Cincinnati free clinics) decided to go into private practice for the first time in his life. This was no easy leap of faith and involved a different kind of personal responsibility than he was used to.

“I found a doctor on Seabright Avenue in the city of Santa Cruz, Dr. Blackwell, who at 80 years of age was still running a large geriatric practice. He was going to retire soon and let me use his office in the afternoons,” Arnie says. “Before I even left the health department, a man named Ray Martinez walked in my door and said, ‘I hear you’re going into private practice. I want to be your first patient.’ Ray had AIDS, and he became my first patient with HIV.”

After Dr. Blackwell retired, Dr. Leff took on many of his elderly patients and an ever-increasing number of people with AIDS. “I became the ‘AIDS doctor’ and was in the trenches for over eight years,” says Dr. Leff. “It was like a war. People got tested, discovered they were HIV Positive, and went through hell trying to stay alive and figure out what worked and what didn’t.”

In those days there was little information about AIDS, but Dr. Leff scoured the literature and spoke with everyone who knew anything about the disease. “I had to learn it all,” he says. “The first report I saw was in the New England Journal of Medicine about Kaposi’s sarcoma and pneumocystis pneumonia. These two diseases are very uncommon except in immune compromised people, and the Kaposi sarcoma was uncommon period. At first they thought it was a gay related immune disorder and called it GRID (Gay Related Immune Disorder). It took about five years for everybody to figure out how big the problem was and that it was not restricted to gay men, even though they were the primary people affected in the U.S. at that time. It wasn’t until about 1984 or ’85 that we had a blood test to identify it.

“So, I had a lot of public health background and obtained what knowledge of the disease I could, but had no clinical experience in treating it. In fact, I had little clinical knowledge at all. I was really jumping into boiling oil when I took this on. It was like I was a baby thrown to the wolves, but in this case the wolves took me in, protected me, and helped me learn what I needed to know to survive and help them survive, as long as possible. It was quite a shift from seeing 20 people a month [his last major clinical experience, when he saw police officers in Cincinnati] to 20 people a day.

“In the beginning of the epidemic, it was primarily oncologists who saw AIDS patients, because it manifested with Kaposi sarcoma, which is a cancer. Now, that is rarely seen. After a brief period, however, the oncologists passed on their AIDS patients because they didn’t know how to treat all the other underlying symptoms. There were also a few infectious disease docs in town treating the disease, but a number of gay men had problems with their attitudes and bedside manner. Because of these realities and concerns, I became the defacto ‘AIDS doc’ in town. I kept up on the literature and frequently spoke with Paul Volberding, who is now a professor of medicine at UC San Francisco, but at the time was the director of the AIDS clinic at San Francisco General.”

“We had all these young patients whose immune systems were shot, but were otherwise healthy,” Dr. Leff says. “The dying process for these patients was very difficult. We had hospice services at the time, but they were learning along with the rest of us about what worked and what didn’t. During those years, I believe I made more referrals to hospice than any doctor in the county, other than oncologists.

“The physical challenges were staggering. Histoplasmosis is a fungal disease that occurs in the Midwest. It is like a flu. Most people get it, don’t feel well for awhile, and then recover. Candida is a disseminating yeast that can effect healthy people, but is not life threatening. For people with AIDS, both Histoplasmosis and Candida were deadly. We also saw them picking up meningitis from a fungal disease, as well as lymphomas and central nervous system lesions (toxoplasmosis). To top it all off, many of those afflicted also developed dementias.

“I remember one patient who was admitted to the psychiatric unit at the hospital because he had HIV dementia. He couldn’t control himself or his bodily functions. He was a mess. We got him into a halfway house, but the mental health people refused to put him in their system. They said they couldn’t handle AIDS dementia because it was physical and not psychological. I told them the guy was clearly psychotic and had no place else to go. The nursing homes wouldn’t take him because he was psychotic, and the mental health folks wouldn’t take him because AIDS was his primary diagnosis. He wound up staying as an inpatient at Dominican Hospital for four and a half months. It was tragic; a young man living, most of the time able to ambulate, in the hospital for over four months, and dying there, too.

“That was some of the war-like quality the epidemic presented. I felt like I had to beat down some barriers, even if it took force. I spent eight years teaching every doctor in town, every specialist, nurse, x-ray tech, and health professional I could speak with, about AIDS. Some didn’t like it, some walked out, and some refused to treat them. It was frustrating and sad. I told them the truth that yes, they could possibly die from coming in contact with an infected needle, but that was already true in their profession; it was part of the risk they took every day already. I’ve had four or five needle sticks in my career. It was scary. I got myself tested again and again and again, to make sure.

“I was having enough trouble dealing with all the deaths and loss by itself, let alone having to continually confront a system that didn’t want to budge. I was having, on average, one patient a week dying from the disease. I probably had 50 or more deaths in one year. Some of those were geriatric patients as well, but it was enough to warrant a significant support system. When I first went into practice, there had only been one person who died of AIDS in the entire county.”

“People didn’t understand,” said Dr. Leff. “I was watching people die, and often there was nothing I could do about it. We had no treatment, no cure. It was the first major epidemic since Polio, which died out in the ‘60s, though in some areas it has now resurfaced. I saw myself as a soldier in the war against disease, and the reality was that there were casualties on both sides. The docs, the patients, the nurses, were all affected emotionally, if not physically. There continue to be casualties to this day.”

Neighbor to Neighbor

If there hadn’t been a gigantic sign on the street saying “C.E.L.P.A.R. Polyclinique”, the house within which it resides would have been indistinguishable from the other small dwellings crammed side by side along the road in East Kigali, the capital of Rwanda. We had only driven for about 15 minutes from central Kigali and it was like night and day. The French spelling for the center is a result of the association Rwanda had with Belgian after they were colonized in the last century and the close connection they maintained with France, until the last decade. They are now focusing on English as their second language of choice and teaching it in place of French in the schools.

There was a crowd of people waiting for us on the street and others quickly joined, as they saw a mini-bus of muzungas (white people) stepping foot in their neighborhood, an area of town seldom visited by foreigners or aid agencies. It took us several minutes to say our hellos, take the obligatory photos of children and show them their image in the camera (to their unquenchable delight) and head towards the sounds of music we were hearing from somewhere in the near distance. Someone standing next to me said she was hearing the sound of angels and kept looking up, even though she wasn’t religious in the least. We soon discovered where the heavenly music was coming from.

The clinic’s doctor, Fred Ndatimana, led us over the ditch on a slanted path up to the entrance where we were warmly greeted by the director, Abel Sekabarati, his assistant, Fabien Musabyinana, the nurse, Ndayifluga Bizinana and a choir of patients (men, women and children) singing their hearts out. Some of them were sitting (too tired or sick to stand) and the rest were swaying side to side clapping their hands and looking upward as they harmonized. There was one older woman with a baby in her arms that immediately caught my attention. They looked like an African version of a cover from The Saturday Evening Post and had that Norman Rockwell vibe, even though their reality was far from idealistic or serene.

In the last ten years, Rwanda got a jump start on HIV education and treatment with a comprehensive array of support from the President’s wife, Mrs. Jeannette Kagame, multiple governmental organizations and national health plans, as well as funding from numerous international aid agencies and foundations. Mrs. Kagame has gone beyond the efforts of most governments in other countries to address the AIDS pandemic, let alone as First Lady. In 2001, she hosted the African First Ladies at the Kigali Summit on Children and HIV/AIDS Prevention gathering, which was the first of its kind. This meeting provided recommendations and suggestions that each First Lady in attendance would implement in their own region and country. Mrs. Kagame developed a national plan of action for Rwanda, which catalyzed the creation of PACFA, which means Protection and Care of Families against HIV/AIDS. Another program that has been somewhat successful is called Unite for Children, Unite Against Aids. The health department has this campaign in all the provinces. Its priority is making treatment and testing available to all children, as young as possible.

My friend Wendy Leonard, who is the director of an AIDS education and health treatment organization in Rwanda, called The Ihangane Project, was in a small town (Ruli) in the northern part of Rwanda four years ago, working as a physician with a program connected to the Clinton Foundation. She discovered that one of the most challenging issues was making sure everyone was getting the same information and protocols from the various government offices, committees, NGO’s and countrywide initiatives. She also found that the best way to connect with adults was to first focus on and get treatment for their children, thus the importance of programs like Unite for Children, Unite Against Aids. She concurs that there has been a lot of progress, but that much remains to be accomplished.

Though these programs and policies have made great strides, they have not completely reached small community clinics such as C.E.L.P.A.R.’s Polyclinique, which is overseen by a local church organization and gets by on pins and needles, literally. There supplies are minimal, medical staff scarce and funding almost non-existent. In spite of these realities they have hope, education and community support beyond the expected.

As the singing and dancing continued, we were led by Dr. Ndatimana through the facility, which consisted of a small room containing the lab equipment (a few items for testing blood, including an old hand crank egg beater turned upside down (which was used as a centrifuge), two brightly painted “sick rooms”, a toilet closet and the front living room, from which we had entered. Their medicine cabinet, in the same room as the “lab”, contained about 30 medications (antibiotics, Tylenol and a few antiviral meds). That was the extent of their high technology laboratory and pharmacy; a far cry from the equipment at the hospital. There are 2 hospitals in Kigali. One is public and the other private. There are also numerous health clinics run by government and religious organizations and departments.

Dr. Ndatimana filled us in on the details. “We have two doctors. One is here and the other is in school in Belgium.” There is only one medical school in Rwanda, which is of course a very expensive expenditure. “We see many people that are HIV positive and others with AIDS,” the doctor continued. “The government helps a lot, but it can take a long time to see a doctor or get treatment at the hospital. We help them here through the church. The medicine is from the government, who pays for the drugs. If people have good support they can live for 15 years or longer, if not, they usually die within 2 years. This is an outpatient clinic, but sometimes if they are real sick they stay overnight in 1 of our 2 beds.” The doctor couldn’t recall exactly how many people had died from AIDS over the years and didn’t want to guess. He said, “It is sad, but it is part of my job. I’m a doctor”.

Even with the help of the clinic, fellow patients, the church and the government, it is unlikely that many people have the “good support” which Dr. Ndatimana speaks of as a necessity of living longer, since the country (and surviving family members) is still struggling to regroup after the shattering 1994 genocide. Many families were decimated, leaving few relatives or next of kin, let alone the financial or material whereabouts to recover. Top that off with the thousands upon thousands of orphaned children and you have an overwhelming, though not insurmountable, landscape of suffering and struggle.

When asked about the attitude of Rwandans’ towards those with HIV and AIDS, Dr. Ndatimana said, “Many organizations have worked on educating people about the disease. Now they are treated just like friends, like any other sickness. They are not stigmatized as they once were. Now they know we care. We have a team of counselors that help talk with people and teach them to not be afraid.” Mr. Sekabarati (the director) added, “We help them here through the church. “These people are our neighbors and from different churches. We want to help them, not condemn them.”

People were not always so understanding in the 80’s and 90’s. A lot of misinformation, fear and ignorance surrounded the disease and those that had it. Like most places in the world (West and East), it has taken an armada of consistent and persistent educational, governmental, health care and religious leaders to get the truth out about HIV and transform the cultures attitude from judgment to concern and support.

The fight is far from over. After another “awareness campaign” to reduce the spread of HIV, it was reported that there is still a low rate of condom use in remote areas of the country. They believe this is due to remaining stigma and lack of access to supplies. Rwanda imports about 14 million condoms per year, but that supply doesn’t meet the demand, especially in small villages outside the capital. These realities have driven the National HIV/AIDS Control Commission to increase imports for the demand and continue the Witegereza campaign, whose message is “Teach Me How To Use a Condom”. This campaign combines radio ads and over 200 billboards throughout the country. It is targeted at young people and adults.

The staff at C.E.L.P.A.R.S. Polyclinique state that all of the government programs, such as United for Children, Unite Against Aids, PACFA and Teach Me How, have made a difference, but it is neighbor to neighbor that works best. “When someone you know and have known for years, is sick, you want to help, says Mr. Sekabarati. “As Christians we are taught to love our neighbor as ourselves. It is the right thing to do. We are not here to judge others. Anyone can get sick; it doesn’t make you a bad person.” C.E.L.P.A.R.S. has been educating people door to door, during sermons, at social events and from the example of their pastors and church elders, who not only support the clinic, but helped set it up in the first place, when they saw that not everyone’s needs were getting met.

Before leaving the clinic I spoke through a translator with one of the women singing. She said, in her birth language of Kinyarwanda, “We all support each other and are starting to understand.” She stated that patients help each other and check in on one another’s families throughout the week. They’ve developed a support system of those that are HIV positive and are not shunned, as they were in the past. Her words reminded me of one of the teachers at the ROP Center for Street Children, the orphanage in which we had been working for a number of weeks.

The teacher that came to mind was a woman who is Hutu, but is now teaching children who come from predominantly Tutsi backgrounds. Her husband is in jail for committing atrocities during the genocide (perhaps even against some of the parents of the orphans his wife now teaches). The teacher is HIV positive, as a result of transmission by her husband, as is their child. She continues to teach and love the children at ROP, while also visiting her husband in prison. In the past, she would have been ostracized and shunned for her illness or tribal affiliation, but now she is accepted and speaks of it freely. Her life embodies the contradictions, traumas, circumstances, transformations and ever-present hope, mixed with realistic and pragmatic solutions, which encompass the lives of most Rwandans.

After our tour was ended, we sat on a wooden bench or leaned against the wall and listened to some more songs. I don’t know how many people were not feeling well that day or had been sick for some time or how many folks in that small room had already lost family members, relatives and friends to AIDS, but the energy that radiated from their hearts and voices, seemed to transcend their circumstances. It was as if they were telling illness and death that they had no hold on them and were powerless in their presence. Children were laughing and playing outside the door, peering in, giggling and smiling before dashing off to play hide and seek. Adults entered and left quietly or stayed and joined in the singing. Dr. Ndatimana translated a verse from the last song. “We might have AIDS,” they sang, “but no matter how sick we are, it doesn’t matter. By the time we get to heaven we won’t be sick any more.” They weren’t being fatalistic. It didn’t mean they would stop taking medicine, educating others or desiring to live into old age. They were at peace with what was and what would be. Although I doubt they have ever heard of Alcoholics Anonymous or 12-step programs, they seemed to have down the serenity prayer by heart and not just in their heads. The prayer says, “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”

As we made our way back to the ROP Center for Street Children, we discussed the clinic and the experience. We tried to make sure that we cut short our tendencies to compare health care and HIV prevention and treatment in Rwanda with our experience back home in The States or Europe, but couldn’t resist. Some of us on the team, who had come to work at the orphanage, have also worked in the fight against HIV/AIDS in the West and dealt with the bureaucracy, setbacks, prejudice and fear that held sway in the early days of the pandemic and continue, to some degree, into the present. We were saddened by the lack of material provisions at the clinic, but also gratified by the community understanding and support. What impressed us most was the incredible dedication and lack of self-righteousness by the church, especially since it was a fundamentally conservative evangelical organization. They were actually matching their religious rhetoric with their actions. They were giving time, money and most importantly, a human touch to their faith. It was such a divergence from what we were used to with similar “Christian” bodies in the west. We were intimately familiar with people professing to be Christians, but whose rhetoric was hateful and only caused separation and pain and fanned the armies of ignorance. It was so refreshing to speak with the pastors and board of C.E.L.P.A.R.S. Some of us even began reconsidering our own faith or lack there of.

If there was no sign in front of the clinic and we’d been taken there under a different pretext, we would have thought we were simply going to meet someone’s family in a small apparently insignificant home on the outskirts of Kigali. The clinic was so inauspicious and unassuming. Some of us had expected to see a large building with modern conveniences, staff in white coats and long lines of patients sitting quietly in waiting rooms, awaiting their name to be called. As it turns out, size really doesn’t matter, it’s the quality of the place and the connection of the people that make something special. The people in this East side community of Kigali are connecting. Members from the local churches are connecting. The families in the area are communicating, educating and connecting by knocking on doors, speaking in the alleyways and markets and embracing their neighbors, one precious soul at a time.

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