Here, There and Everywhere

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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.

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I’m Supposed To Die First

“Stop the train! I want to get off!” Jean shouted. 

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

imagesJean’s son of forty-three years had died in a restaurant. He choked to death. He had survived a life of infinite struggle as he lived with Down’s Syndrome and the isolation, stigma and cultural alienation he and his family had experienced daily.

“He was such a good soul,” Jean continued, as tears streamed down her cheeks. “Of all the things to happen, why did it have to happen to him?”

Her son Daniel had become increasingly independent as he aged and was living in a group home in the Bay Area. He was working as a street cleaner during the day and enjoying a variety of social events with his living companions on his off-hours. Jean had visited him two days prior to his death, as she has done twice a week for the last fifteen years. She said she felt blessed, burdened and bonded with Daniel in a way only mothers of developmentally delayed children can know.

“Daniel was so in the moment,” she said. “His smile was infectious.” She looked down at her hands. “I know this may sound crazy, because people think folks like him aren’t as aware of others, as they are of themselves, but Daniel,” she grinned, “was always thinking about others. He could tell when someone was down. He’d give them a big bear hug and say, ‘There, there.’”

She cried bittersweet tears. “He always said, ‘I love love.’ and would wait for you to say it. He wouldn’t do anything else until you would say, ‘I love love too.’ back to him. He would just stand there waiting, no matter how long it took.”

Jean had taken care of Daniel single handedly for most of his life. Not long after Daniel was born, his father moved away saying he couldn’t live with an “abnormal” kid. In his home country, people made fun of kids like Daniel and would say they were cursed and had the evil eye. He blamed Jean and her background for the child’s difference, telling her that her family must have done something very bad in the past.

So Jean, at age twenty-four, took on the already difficult and exhausting life of single-parenthood, combined with the complication of a child that would stay a child for much of his life.

No matter how much she loved him, the reality was that caring for Daniel was overwhelming and all-consuming. She seldom had any time to herself and finding support and child-care as he aged became increasingly difficult. Yet, she loved him like a mother loves an only child. Her identity, reason for living and self-image of who she was became increasingly ingrained with her son’s life.

When she realized that his independence and happiness would be greatly enhanced if he learned to live on his own and separate from her, she was heartbroken.

Having him move to a group home for independent living, which was a forty-five minute drive away, felt like having your ten-year-old go away for a weekend sleep-over and never coming home. She was petrified, anxious and relieved when he actually moved. She said she grieved a thousand deaths day after day and rarely allowed herself to enjoy the “freedom” of her drastically changed less-encumbered life.

“It took me years to grieve the loss of him as a boy, acknowledge him as a man, and let go of my primary identify in the world as ‘Daniel’s Mom,’” Jean said, shifting her legs in the chair. “The last four years were wonderful. I had let go of so much, was doing things I’d always wanted to try, and trusting that he was safe and happy. Then,” she closed her eyes, as her held fell back, “then I get this call and he’s gone. Just like that . . . no warning . . . no good-byes . . . no more ‘I love love.’” She put her head in her hands and sobbed.

Later, after blowing her nose and wiping her eyes, she said, “Now I have to start all over again and I don’t want to. It isn’t supposed to be like this. I’m supposed to die first, not him.” Her eyes met mine. “I want to get off. I want to just disappear.”

She took a few moments of silence, then started telling me about her and Daniel — about all the funny, crazy, confusing, exciting, scary and unbelievable things he and they had done together. She told me about his temper, his sweetness and his frustrations with the world. She brought him to life again and again with her stories.

After another half-hour of hearing about Daniel, Jean placed her hand over her heart, closed her eyes and said, “He’s not gone. I can feel him right here. I can hear him telling me to ‘love love’.”

More support and stories at: Good Grief: Love, Loss and Laughter.

Shona’s Sun Salutation

Shona’s Sun Salutation
by Gabriel Constans

This smoothie is one of our son Shona’s favorites. It is good for small children, since the ice-cold water helps to relieve some of the pain of teething. It also gets your motor running in the morning. It has a good aftertaste and “tickles the mouth.” Sunflower seeds add just the right amount of sweetness.

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Yield: 4 cups

2 cups ice-cold filtered water
2 large bananas
3/4 cup sunflower seeds
3/4 cup raisins

Place all the ingredients in a blender, and mix on medium speed for 2 minutes.

Pour into glass or cup, drunk up, and stretch towards the sun.

Write for Rights

W1312EAIAR1Imagine being imprisoned for voicing a New Year’s Eve wish for peace and democracy.

That was one of the reasons Ethiopian authorities sentenced iconic dissident journalist Eskinder Nega to 18-years in prison on charges of terrorism and treason.

Join Amnesty in calling for Eskinder Nega’s immediate and unconditional release.

Eskinder is one of 10 urgent human rights cases highlighted in Amnesty International’s 2013 Write for Rights campaign, the world’s largest and most effective letter-writing event.

Every day that Eskinder and other journalists remain imprisoned, the dark cloud of oppression in his country grows more menacing.

Eskinder and his family have endured arrest and harassment from authorities for years. In 2006 and 2007, Eskinder and his wife, Serkalem Fasil, along with 129 other journalists, opposition politicians and activists, were detained and tried on treason charges in connection with protests following the 2005 election.

Serkalem gave birth to their son Nafkot while in prison.

Show solidarity with Eskinder and Serkalem – raise your voice to defend theirs.

The crackdown on free speech in Ethiopia has intensified since early 2011 – a number of journalists have been imprisoned on trumped-up charges of treason and terrorism while others have fled the country to avoid jail time. Newspapers have been closed down and last year, printers were ordered to remove any content that may be considered illegal by the government.

The independent media, and freedom of expression itself, has been dismantled in Ethiopia. Eskinder has been prosecuted at least 8 times for his journalism. His words have done no harm. His writings are a lawful expression of his human rights.

Free speech needs more champions today. Be one of them.

In solidarity,

Jasmine Heiss
Campaigner, Individuals and Communities at Risk
Amnesty International USA

The Round House

41HfjdXnn9L._SY344_PJlook-inside-v2,TopRight,1,0_SH20_BO1,204,203,200_The Round House by Louise Erdich
Review by Gabriel Constans

I usually only review books for The New York Journal of Books and tend to not make the effort to share what I am reading, at least not often. This is an exception.

There are many times when books that have won prestigious national or international awards tend to fall short (in my eyes) and don’t live up to the hype and praise. 2012 National Book Award winner (for fiction) The Round House by Louise Erdich is not not one of those books. This story soars and takes you with it.

The story focuses on the aftermath of a brutal attack upon Geraldine Coutts, on the reservation where she and her husband and her thirteen-year-old son Joe live in North Dakota. Everything is seen through Joe’s eyes as he and his father (who is also a judge) try to discover who attacked their loved one and why.

Every character in this book is as real as real can be. Joe’s family, extended family, friends and everyone else on and off the reservation come to life with nuance and depth. “My father bent his head down and rested his forehead on his fist. He closed his eyes. There was the ticking of the clock in that sunny kitchen. Around the face of the clock there was a kind of sunburst. But the rays were plastic squiggles and the thing looked more like a gilded octopus. Still, I kept looking at the clock because if I looked down I would have to see the top of my father’s head. To see the egg brown scalp and thin patch of gray hairs would put me over the edge. I’d snap, I thought, if I looked down.”

One could go on and on, with further explanations and examples, but it will suffice to simply say that this is a story most people will want to read. It includes humor, pathos, fear, suspense, drama, coming of age and romance, but most importantly, it includes some of the best writing to be published in years.

Papa Times Five

Papa Times Five

I’m 59 years old and for 37 of those years I’ve been caring for children.

That is the realization that struck me like a high school football team a few months ago when our youngest son left home and transferred to a four year college in Southern California. “How can this be?” if anyone is reading this or should ask. None of the children stayed beyond the age of 20 (though a few returned every now and then for short or prolonged stays). I didn’t have my first child as a teenager, and I didn’t marry into a family that already had children. Everyone came by choice, when and how we wanted.

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At the age of 23 I married a kind woman who wanted to have children as much as I did. She also worked in the health care field and cared for others. Shortly after we married, our daughter Darcy was born and two years later she birthed our son Brendan. About four years after that we adopted Jason (who was 4 at the time), but it turns out that that is not something she wished to do. We separated and I became a single parent of Jason, with Darcy and Brendon staying with us half of the week.

About a year later, I met Audrey, who tentatively became a step-mother when we married the following year. After getting my vasectomy reversed, we had a child named Shona (who was the last to recently leave home). Shortly after Shona was born, we had our 14-year-old foster daughter Leti move in with us.

If you’ve kept track so far, that makes five children. Darcy and Leti both married and each now have two children, so we don’t have any lack of children around, but it’s quite different. The wonderful grandchildren are Jupiter, Ilee, Lola and Neiva. Audrey and are are respectively known as Oma and Opa.

When I mention that our last adult child has left home, friends say things like, “Oh, you have an empty nest.” Or, “That must be hard.” Or,”It must be nice having the house to yourself.” It’s difficult to give a definitive reply, as it feels like a combination of all the above. At times I miss the kids. At others, it is wonderful to have time alone. And at other moments I’m not sure what I’m feeling. Knowing all the children and grandchildren are fundamentally healthy and happy, alleviates a lot of anxiety and worry. Of course, there are always a mixture of feelings when there are issues of concern or difficult transitions.

So, out of choice (Was it really choice or conditioning or karma?), I’ve been partially creating, raising and nurturing children for well beyond half of my life. I have no regrets.

I wonder if we should perhaps adopt another child who needs a home? Why not 4 or 5 more? Oh yeah, there is the reality that they are with you the rest of your life, whether they leave home or not and unlike radishes or broccoli, you can’t just plant them in the soil and water them once a week for them to grow into adults. It takes a little more attention and love that that, as I’ve discovered five times (so far).

Muslims Protect Christians

Human chain formed to protect Christians during Lahore mass
By Web Desk / Aroosa Shaukat
Published: October 6, 2013
The Express Tribune

LAHORE: The Muslim and Christian communities came together during Sunday mass in a show of solidarity in Lahore.

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Hand in hand as many as 200-300 people formed a human chain outside the St Anthony’s Church adjacent to the District Police Lines at the Empress Road, in a show of solidarity with the victims of the Peshawar church attack two weeks back, which resulted in over a 100 deaths. The twin suicide attack on All Saints church occurred after Sunday mass ended and is believed to be the country’s deadliest attack on Christians.

Standing in the small courtyard of St Anthony’s Church, as Mufti Mohammad Farooq delivered a sermon quoting a few verses of the Holy Quran that preached tolerance and respect for other beliefs, Father Nasir Gulfam stepped right next to him after having conducted a two hour long Sunday service inside the church. The two men stood should to shoulder, hand in hand as part of the human chain that was formed outside the church not just as a show of solidarity but also to send out a message, ‘One Nation, One Blood’.

As part of an attempt to sensitize the public at large, the human chain was the second such event after a similar had been organized in Karachi last week outside the St Patrick’s Cathedral by an organization called Pakistan For All – a collective of citizens concerned about the growing attacks on minorities.

“Well the terrorists showed us what they do on Sundays. Here we are showing them what we do on Sundays. We unite,” said Mohammad Jibran Nasir, the organizer who made the calls for the event on social media.

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Flying in from Karachi for the human chain, Nasir and his group are out to advocate the need for interfaith harmony. “I see no reason why our politicians and our leaders should not come out of their houses, leave the luxury of their secure homes and stand in solidarity with the common man”, he said.

As the service concluded inside the church, the courtyard echoed with slogans of ‘Dehshut gardee murdabaad’ and ‘Muslim Maseehi ittehad zindabaad’ as members of the Sunday service emerged.

Led by Taimur Rahman, activist and member of the music band Laal, the congregation in the courtyard proceeded with sermons and chanting as the crowd increased in number.

Later, the congregation moved onto the street where they chanted slogans and formed the human chain, as police cordoned off the roads leading to the church to allow for the congregation to move.

Mariam Tariq who was attending the service along with her daughter also joined the chain. “We have lost so many of our loved ones over the past few years” said Tariq as she broke into tears.

See more photos at The Express Tribune with the International Herald Tribune.

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