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A Sister’s Promise

imagesInterview with Nancy Goodman Brinker. An excerpt from the book Don’t Just Sit There, Do Something! Grief’s Wake Up Call.

Susan G. Komen was married, with two small children, when she was given a diagnosis of metastatic breast cancer. She fought a valiant fight with every known treatment at the time, until her body could withstand no more, and died in 1980. Before she passed away she had her younger sister, Nancy, promise to find a cure for the disease that was afflicting so many women across the country. Nancy thought the world of her “big sister” and though she was in the depths of despair, and “utter hopelessness”, she promised “Susie” that she would do everything within her power to find a cure.

Two years later, Susie’s little sister, Nancy Goodman Brinker, started the Susan G. Komen Breast Cancer Foundation and brought breast cancer to national attention, becoming the largest private nonprofit group in the world devoted solely to funding breast cancer research. Since 1982 the foundation has raised over 100 million dollars! Over half a million people now run in their annual 5K “Race for the Cure” in cities across America. They were instrumental in getting the U.S. Postal Service to issue a stamp for Breast Cancer Awareness; have galvanized the undergarment industry to provide labels on their clothing which advocate breast self-examinations; and inspired countless well known politicians and celebrities to publicly speak about their personal encounters with the disease. 

NANCY: I came from a large extended family. My mother has been my greatest role model. She was very close to her family. She weathered losing so many she has loved. She was the only child in a family where there were several uncles and aunts. Many of these uncles and aunts were more like older brothers and sisters, because she was an only child. My Mom had nine aunts and uncles combined, who had a total of four children between them.

Mother ended up being a caretaker and very close to these uncles and aunts. Except for one or two, she literally nursed them all until they died. I use to spend a lot of time with her when I was growing up, taking care of some of them, going to see how some were doing; watching her suffer many losses and then of course my sister. Mother always had the most optimistic attitude, you know, “When life gives you lemons, make lemonade.” She lost her mother when she was only twenty, so she taught me about loss. I still find it so very sad.To tell you the truth, even now I don’t know if I have learned to really deal with it. There must come a point in your life where you never stop grieving but you just take action, you just go forward.

I honestly don’t know how my mother has dealt with all the losses in her life, particularly one uncle who she loved very much and was like a brother to her. That was the one time I really saw her fall apart. It took her a long time to get over that one. I saw her crying in bed, grieving. Ordinarily my mother is compassionate and full of feelings, yet also stoic and able to go on. This one took a lot of her . . . this one uncle’s death. He loved, supported, helped and listened. He was just wonderful to her. He was gentle and kind and I think that he rounded out her life, gave her the comfort that a parent would give a child. He was her mainstay.

She had a supportive family with all her uncles and aunts around. She was an only child so I think she was a little more used to being alone then some of us are. But this one uncle’s death was very sudden and it was tough for her. She weathered through it. She is a very special person, my mother.

Loss was a part of our life. We’re Jewish and mother had lost family in Germany during the war. I wasn’t old enough to know about it when the war was going on per se, but I knew to the extent that we had relatives who were lost in Europe and the war. We talked a lot about that and how precious life is.

When Susan died the thing that helped me the most was focusing all of my energy on fulfilling her dream and last request, which was to cure breast cancer. I had to do this in her memory. I really wanted to do it. We had been through such a siege.

Luckily, I had met and married a wonderful man just after having gone through an awful divorce. I think focusing all my energy and working as hard as I could on the Komen Foundation, raising my son, and being a wife, helped me get through a lot.

I don’t really remember anything specific that people said or did, except one person who helped a lot. He was a Rabbi that we had in Peoria at the time. We went to see him towards the end of Susan’s illness. We wanted to know how to deal with the children and how to deal with her. He told me what to say and how to say it. He said, “Don’t lie and tell her everything is going to be OK . . . she’ll be OK. She is not going to be OK. What you have to do is learn to be sympathetic and it is awful, you don’t know why it is happening. You wish it weren’t happening. You don’t know what to do about it. And that you love her very much and you’ll be there till the end and do everything you can.”

As the years have passed I don’t think I miss her any less. I probably miss her more. I’m getting older and would love to have my sister with me. We were best friends. I think in one way your circle of friends and people narrows, it doesn’t grow it narrows. What’s important in my life now is different then it was. I have learned that there are very few people in life who love you unconditionally. I think sisters are like second mothers if you will. There was unconditional love there. We could say anything we wanted and be totally frank.

In a lot of ways the Komen Foundation has fulfilled a lot of what we had hoped for. It’s funny. I’m not a person with supernatural beliefs but we have always said that we have a Komen angel and it’s Susie! When things start to go wrong she’s there, something turns and it goes right. I can’t explain what I mean but believe me it’s there. I don’t believe in angels in the traditional sense, but I do believe in angels. I don’t know what it is, but there is some spiritual holdover. It’s certainly not in the normal body, but there is something to this and I just can’t quantify it. I have felt her presence on several occasions, so I know it’s there. I don’t know how to describe it to you.

One day I was driving in my car, looked up and there was golden light everywhere in the car. It was like a shower of golden light and I knew she was there. It was very, very interesting. In fact, I was driving down to one of our big Komen events, one of our big luncheon events. It was about four or five years after we’d started and I just had this feeling. It was amazing. There have been other times, particularly at the Races for the Cure, when I felt she was there watching. She’s there, sitting up there watching. I don’t mean to say it’s a different world or inhabiting a different world.

There have been many times when I have almost quit this work. I’ll say, “I can’t do it anymore, it is too hard.” Then something will happen, something very satisfying will happen. I have asked for guidance, “Show me what I am doing.” If I listen and watch the cues it always happens that I find what I am after. There is something very spiritual about this work. There is something almost other worldly about it.

I think it is God’s will and I think there is a lot of randomness in life too. I think that if you are chosen to do something or if you put yourself in the path of being chosen to do something, somehow the circumstances all fall into place. Then you have an obligation to do it. I have been very well fed. I am well taken care of. There is no reason for me to do anything else. There is no reason for me not to do this. I must do it. For me to spend my time at anything else would be wrong, just not right.

Just playing and having a life of leisure is not my style. But it isn’t that it is just not my style, it’s also the fact that there is a lot of work to be done. I wasn’t given the opportunity to do what I do without a reason.

Sometimes I get back a lot from the work and other times I don’t. But it isn’t what I get back from it, it’s what happens, it is how well I do my job. If I do my job well and at the end of the day people’s lives have been saved and we have moved along, then I feel good. It keeps refueling the reason for why I’m here. It’s like I am on a mission.

I don’t understand why Susan died and I lived through my cancer. I have no reason to understand it, except that she was born premature and for some reason her immune system may not have functioned as well. I may have been given a longer period of time to do this work. I don’t know. Believe me, there were times I wish I could have fought her battle for her. I think I was diagnosed with this disease to unfortunately understand, on a very personal level, besides everything she went through, what it was.

Looking back there are few regrets. I wish that I had had a little more time to be, well . . . I would have liked to have had another child. At the time they advised me not to. With breast cancer they weren’t suggesting that people go on and have more children. Today it would be different. I missed out on a lot of things with my son when he was young. He’s turned out, thank God. There are times I wished I had had a little more time and hadn’t had to stay up all night worrying about things. I have been so intensely involved in my cause.

I have some wonderful friends, but I don’t think I’m particularly popular on a personal level. I think people like me, basically view me as strong, you know? But there are things, that because I am an agent of change, I’m not the person you would just call to go play with. My friends are wonderful and they tend to include me, but I know they don’t think of me as being a cozy person. I’m intense about everything I do. I’m sure they feel uncomfortable. I wish I were more low key. I’m just not. No matter how hard I try I’m not wired that way. So I try to cope and handle it, but it just doesn’t seem to work out for me.

On the other hand I’ve learned to not be afraid to take something on that seems impossible. My father was my role model for success and achievement. With enough commitment, courage and persistence, especially persistence, you can overcome almost everything. You don’t have to be a rocket scientist. I’m not. I have largely been successful because I surround myself with extremely bright people who are much better at everything then I am. Don’t be afraid.

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

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

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