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.

Homecoming for James Durbin

James Durbin came in fourth on American Idol, which is the farthest a heavy metal rocker has ever gotten on the show. A great jazz musician and singer also made it into the top 10 (Casey). Now, James hometown is having one of the biggest home coming celebrations the city has ever seen.

American Idol released James for the day from his other Idol obligations, so he could come home to Santa Cruz. Idol says this is the first time they’ve ever allowed a contestant (who is not in the top 3) to go home for such a day, but they had such massive support for doing so from the city and thousands of people across the country.

James will be holding a press conference at the Louden Nelson Center around 3:30 today and visiting a number of youth programs that he was involved in growing up. Then, around 5, he’ll walk over to the Boardwalk and join the White Ensemble (who start playing at 4) for a few songs.

The streets of Santa Cruz are likely to be packed like never before, as there is already a large group that come from the Bay Area on the weekend to go to the Boardwalk. Add our amazing James performing (from the most watched show on television) and you’re bound to have an amazing crowd.

As far as Santa Cruz is concerned, James Durbin IS a winner and always will be, as is his fiance Heidi, who supported and guided him throughout the process.

WELCOME HOME JAMES.

American Idol Rocks On!

Our young man from my hometown Santa Cruz, James Durbin, is rocking American Idol week after week and as of today, is in the top 7. That is out of over 100,000 people that tried out for the show this season. Quite amazing, considering the odds.

Not only has James continued to stay true to his interests, style and background, but he’s also been able to be quite authentic and not get too caught up in all the hype, publicity and judgments from the show, media and public.

Everyone talks about what he’s been through (father died young from overdose) and what he lives with (autism and Tourette Syndrome) and his supportive and affirmation producing girlfriend and their child, but what is most important and should be the quality that is most desired, is the music that comes through him (heart and soul).

James seems to be a natural performer and in some ways like Lady Gaga, is able to actualize what he sees in his head on stage. Combine that with a good voice and musicianship and it looks like he’s got it all.

Regardless of whether he ends up “winning” this season or not (as voted by the same people who voted off the best singer of the lot – Pia Toscano), James will have a long career doing what he loves and continuing to bring people to their feet.

American Idol has never had someone quite like James. Season eights runner-up Adam Lambert was probably the closest in temperament and musical variety. Adam has an amazing voice, which is more nuanced than James, but James is also James and when you hear him and see him, you know who it is right away… a big time winner against all odds on America’s most watched television show.

Health Care’s Invisible Glue

I once had the opportunity of developing intimate relationships with people of all ages and from all walks of life. They and their loved ones often shared deep secrets and lifetime memories. Challenges arose daily, imploring me to make an individual more comfortable or free of pain or to help someone deal with an emotional crisis. As the years progressed, I found that a simple touch, deed or word could profoundly affect the people I cared for.

You may be thinking, “You must be a nurse, right?” No. “Oh, then you’re obviously a doctor or an intern?” No, but close.

I’m talking about life as a nursing assistant, better known by the pseudonym “aide,” “orderly” or “attendant.” Their work with elders in convalescent homes is legendary. Legendary because they continue to work in such facilities with little pay, dangerous under staffing and terrible supply shortages. Conditions are frequently better in acute-care hospitals, but even there they are often seen as appendages to doctors and nurses. Rare is the individual or organization that grasps the importance and necessity of their involvement in the health care system. They are the “meat and potatoes” of hands-on medical care in this country, the glue that holds it together.

Nursing assistants make a crucial difference in peoples’ lives. Frequently, they spend more time with patients than nurses and doctors combined. For some, their presence means the difference between fear and loneliness and even life and death. They are there when we hurt, sweat, laugh and cry.

Some individuals (health care professionals and the public) act superior or snobbish to aides, treating them as if they are lacking in brains or have no motivation to “move up” the social ladder of medicine. It’s not overt or cruel prejudice, it is a basic disregard for the job, the training required and the workers involved.

Let me take you inside the world of a nursing assistant for just one 8 ½ hour shift, when I used to work the swing shift on the cancer unit of a local hospital. This is the real stuff, the nuts and bolts of health care and healing. It’s what nurses used to do before they become inundated with paper work, passing medications and running madly to finish all necessary procedures and treatments and to fulfill all the other responsibilities demanded of them.

After receiving my list of assigned patients and finding out which nurse I’m working with, I begin obtaining patients’ vital signs and get an overall picture of how they’re doing.

The gentleman I encounter in the first room needs his oxygen adjusted and some fresh water and towels.

The next patient, Alice, needs an entire bed change. A 73-year old woman with breast cancer, she has become incontinent and soiled her gown and linens. She is embarrassed and painfully apologetic. As I cleaned her up she spoke of her fear that she was beginning to lose control of her life. When I left, Alice said she felt “clean, fresh and renewed.”

The third person I contacted that evening was Charles, a 60-year old man with leukemia. As we conversed, he asked if I was in training to be a nurse. When he found out I wasn’t, he said, “Oh well, this is a good job for you to start out with for your future.” Just then the charge nurse came in with a frantic look on her face and asked if I could get another patient on a gurney to go downstairs for x-rays.

After I located a gurney on another unit and got the patient ready, another nurse requested that I make a trip to the blood bank to pick up some packed cells (blood). When I returned from the lab, I found my team leader (nurse) at the medicine cart.

We sat down and looked over the “care” charts to decipher what protocol was desired for each patient. Some vital signs needed to be taken and some patients needed to walk, be turned, bathed or catheterized (a tube put in the urethra to empty the bladder). Others had doctors’ “orders” that entailed checking blood sugar levels or collecting sputum, urine or stool samples for lab tests. During report, the nurse suddenly stopped, turned excitedly toward me and said, “When are you going to nursing school? You would make a great nurse.” She looked downhearted when I explained that I had no desire to be a registered nurse or to go back to school. She said, “But you’re so intelligent!” I grimaced and said, “Thanks”. Was she implying that that nursing assistant’s are stupid?

When report was over, I finished the remaining vital signs, lifted one patient up in bed, helped another to use the bedpan and took Alice for a walk down the hall. While shuffling along we pretended we were dancing to, “Tea For Two.” Her eyes sparkled when she told me that she and her deceased husband had been prize-winning dancers in the 1940s.

I informed the nurse that a patient’s IV (intravenous bag) was almost dry and that a number of people had requested pain relief and various other medications. The dinner trays arrived and after checking to make sure they all matched each patient’s diet, we passed them out. One of my folks needed help eating (as a result of an old stroke), so I sat by her bed and slowly gave her a few mushy bits of her soft diet, so she wouldn’t choke. Meanwhile, a patient undergoing chemotherapy was throwing up just two doors down the hall. After emptying his emesis basin (vomit container), I went to supper. Believe it or not, I was famished. It had been only two and a half-hours since my shift had started, but it felt like two and a half days!

On the way to dinner, I picked up a magazine which had a feature story entitled, “What Do Nurses Want?” I got my hot, soggy food, set my tray on the table and turned on the television. The channel I selected dramatized the story of a big-city hospital. As usual, the only characters given any airtime were, you guessed it, doctors and an occasional nurse. Everyone else in the show (housekeepers, technicians, secretaries and nurses aides) were shown as auxiliary personnel who did nothing but get in the way of the featured players.

After devouring my food in the allotted half-hour supper break, I returned to the unit and picked up the patients’ dinner trays. As I walked by Room 264, I saw Sam (a patient with advanced renal failure) falling headlong towards the floor. I leaped through the door and grabbed him just in the nick of time. Sometimes I felt like I was in one of those old commercials were people dove to catch a spill before it hit the carpet. Sam was getting more confused and said he had to go get things ready for the rabbit cage. I maneuvered him back to bed and eventually convinced him to stay in his room for the rest of the night. It took another hour before he realized he was in the hospital, after frequent reminders of who, what and where we were.

Then Michael put on his call light and literally screamed for help! Michael was a young man with AIDS who was in the hospital for treatment of a lung infection. Upon entering his room I found him tense, angry and perspiring profusely. He asked various questions about medications, IVs and food. Everything was worrying him. Was this working right? Was that being done on time? Was he getting the proper nourishment? After sitting and listening a few minutes, it was apparent that he was concerned about something other than mere food. At first, I answered his questions, then I asked him if he could tell me what he was really afraid of? He began to cry. He said he was overcome with feelings of abandonment from a dear friend and the emotional loss of some of his family members as a result of his illness. Fifteen minutes later Michael and I were laughing about the absurdity of life and the beauty of loving and sincere friendships. He only rang for assistance one other time that evening, to have someone turn out his light and say goodnight.

I left Michael’s room, made a fresh pot of coffee for family members and staff, fixed someone’s bed and TV and then took Jackie her evening snack of fruit and juice. Jackie and I had known each other for a few years, as she’d had frequent admissions for chemotherapy, such as her present three-day stretch. She always called it her “dose of poison” for the month and described her hospital visits as, “A working, masochistic vacation!” We spoke of her family, hopes for a cure and her latest garden project. Then she asked about my children and work. After a pause, the familiar questions began. “When are you going to go study medicine?” “Isn’t this just a job you’re doing to get through medical school?” Patiently, I said, “No, I’m not going to school right now.” It seemed futile to explain once again that this was my profession.

The remainder of the evening involved collecting and measuring fluid totals from each patient and spending time with the family members of a man who died at 9:00 p.m. His death was not unexpected, but the grief his family experienced was far greater than they had anticipated (as is often the case). We called the doctor, minister and mortuary. I got his body ready by taking out the IVs, putting in his teeth and folding his hands on his chest with as much dignity as possible. I finished charting on all the patients around 11:30 p.m., said goodnight to my co-workers and friends and called it a night.

Another “routine” shift had passed. As I drove home in the darkness, I thought about the perceptions people have of nursing assistants. Our society says it cares about the young and old, yet it places little value on those who care for the sick and aged or teach our children. Such failure to match words with deeds is, at the least, hypocritical. Why don’t people respect and reward those providing the hands-on care of their father or mother as much as they value the doctor who diagnosis the illness or the nurse that starts the IV or hands out the pills? If appreciation for the work nursing assistants’ do is ever acknowledged by good pay, healthy and safe staff to patient ratios and mutual respect, I think I’ll pass out from the shock.

Doctors and nurses are prime assets in delivering good quality health care. Without them, many would flounder and perish. I’ve seen them work long hours with great heart and dedication. But they are not the sole providers of care, nor do they have an exclusive patent on providing expert and passionate service. They do not work in a vacuum devoid of others’ energy and skills. Without secretaries, housekeepers, laundry workers, department managers, volunteers and countless other technicians, assistants and personnel, the health care system would find it impossible to function, let alone provide adequate or quality care.

Life tends to go in circles. Who will be there when you are feeling sick and miserable or someone in your family is? A nurse, maybe. A doctor, perhaps. Most likely, it will be one of my colleagues, a nursing assistant.

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