It's Not About Me

 
“I have to admit that when people tell me those stories, I only think about my reaction to it, not their need to have hope, to express hope, to try to help themselves and me.”
 
 

It's not about me. I had to laugh. That's how the e-mail from Naomi began, in response to my column from yesterday. I had written about how much it bugged me when people tell stories about someone who has beaten the odds. But Naomi taught me something, made me think about this in a whole new light that I am embarrassed to say, I had not thought of before. She wrote:

Maybe they are not saying it to give you hope, maybe they are saying it to give themselves 1)hope and 2)something to say as they try desperately to process this horrid piece of news. No matter how well or how casually the individual knows you, when you tell them you have cancer, you are forcing them to reassess both your relationship and their perceptions of what will be. And you bring mortality back to the forefront — no longer can it be an unwelcome guest banished to the very edge of their consciousness. It is invited in to sit next to them.

At that moment they may need to have hope for you. As a friend, colleague, or family member, they need a way to give themselves hope that they are not going to lose you. As another living individual, they need to stave off their own fears about death. And often they need to do that while simultaneously holding a conversation with you.

And she's absolutely right. A number of other people wrote to say essentially the same thing. It's so easy to think it is all about me. After all, I'm the one with cancer, right? I'm being sarcastic here. Because it's not just about me, it's about all of us: the patients, the friends, family, loved ones, even strangers who are somehow touched by this disease.

I have to admit that when people tell me those stories, I only think about my reaction to it, not their need to have hope, to express hope, to try to help themselves and me. I have learned something today, and I thank Naomi and all of you. I won't forget this lesson.

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An important lesson for all of us, Mr Sievers... and one I've not seen expressed so effectively before. My compliments to your very perceptive reader Naomi and to you.

Sent by Brian Engler | 5:41 PM ET | 09-29-2006

When someone tells me a survivor story, I eat it up. I love those "defy the odds" scenarios — especially when they're true! The way I look at it is that it's another opportunity to combine the God-given qualities of faith, hope, and reason. I have faith that I will be given the strength to find peace in whatever happens, hope in that I could be one of the long-time survivors myself and reason that if someone who statistically should not have survived has, then it can happen again to someone else ... why not me? I have a personality that allows me to internalize and process all hopeful and good news and, for the most part, not dwell on the negative.

Oh, and I buy lottery tickets because I figure that the odds of my getting breast cancer at the age of 38 were pretty low, the odds of it recurring after 12 cancer-free years were pretty low, the odds of my surviving these past two years — all but 3 months of it on various chemo regimens — with pervasive metastases to bones, lungs, and liver (plus two pleural talc procedures on my lungs, one of which kept me in ICU for 9 days, a life-threatening allergic reaction to heparin, high doses of which were given to me after I developed a deep vein thrombosis, aspiration after a severe bout of morphine-induced nausea after which several docs wanted to put me on a ventilator, which I objected to with all the energy I could muster and refused to allow it up until the morphine had been my favorite drug — next to versed — oh, and a staph infection acquired at the hospital which kept me there for an extra week on IV antiobiotics) — if the odds of these events happening were low, yet happened to me, then I really think I have a good shot at winning the lottery! The odds of that happening don't get much lower, but it's not unreasonable to think that it could happen! If I don't live long enough to enjoy the winnings, then my family and friends and some well-chosen charity organizations sure will! Bottom line is this: live, live, live, until you die and if you can find some humor in life along the way, you might not live longer, but you sure will enjoy it more! These well-meaning folks with their survivor stories are just trying to help themselves and us find hope. Keep up the good work, Leroy — you are creating a community and helping us all find hope in the twilight zone of the cancer world. God bless us all!

Sent by Denice | 11:56 AM ET | 10-02-2006

I'd rather think about them then me! I kind of get sick of me and my stuff...

Sent by Meredith P. | 1:31 PM ET | 10-02-2006

Hi Leroy,

I have been reading your blog for a long time now and it finally seemed like the time to write and tell you the impact it has had on my life. Your words and insight have allowed me to be with people in a different way. I used to back away from people that were suffering from illnesses, loss of a loved one, the big stuff. Or even worse I would say something trite and meaningless. Of course I told myself it was to make the OTHER person more comfortable. Within the past month I've been able to use your teachings to really show up for people in pain and have the conversations they need to have. I have some knowledge now and I'm able to connect in a genuine way. Thank you for making that possible for me and the people in my life.

Sent by Sheri | 2:25 PM ET | 10-02-2006

During my nearly two years of cancer treatments and surgeries, I have often heard exactly the kind of comments you described and I love the people who try so hard to make me feel better. But, for some reason, the kinder and more upbeat the comment, the more I feel like crying. I guess it's just a glitch in my personality. I feel so sorry for the person telling me the story. I know they desperately want me to feel hope. I feel sorrier for myself, although I know from reading others comments on your blog that this is an unpopular internal state but I must be honest. So, I often wind up making well meaning folks feel terrible as a tear or two escapes down my cheeks. Now, what I really wish someone would say to me upon hearing for the first time that I have cancer is "Whoa, that really sucks!" This would, for me, cause laughter and agreement. Most people would hesitate to blurt out such a thing, fearing that expressing their feelings of horror would be rude. Too bad.

Sent by Sandra Locus | 2:41 PM ET | 10-02-2006

Thank you, wise and compassionate Naomi! I am in the midst of my 4th cancer (personally), and have loved many people who were living with cancer. I find that having cancer is infinitely easier than being unable to spare a loved one the rigors of that experience in their own lives. They have the toughest seat in the house. Thank you for your insightful comments, and thanks Leroy for all the sharing you do with us regarding your own insights and those of the community your work has drawn together.

Sent by Sarah Knorr | 2:44 PM ET | 10-02-2006

I am OK with hearing about cancer people who have beaten the odds. And I certainly don't care to hear about the dead guys. With esophageal cancer, statistics show that people die within an average of 14 months, and I am 8 months into it. But, most cancer venues that I visit are populated by people older than me (I'm 64), less physically and mentally fit, and they make up the averages. I won't.

Sent by Tim Andersen | 2:13 PM ET | 10-03-2006

Mr. Sievers, on my way to work this morning I heard a powerful story, a powerful voice, a man who's deeply affected by this diseases but, still fights to go on and make the best of his life despite all the pain and sorrow he must feel inside... your voice grabbed my attention in such way that I couldn't begin to describe to you. I couldn't wait to get to a computer to write you. I listened to you as you unfolded your story about what a normal day is like for you, and honestly my heart was breaking while I continued to listen to your story. I don't have much to offer and I promise if I could trade one day of mine in exchange to yours, I wouldn't hesitate because you said "I wish that I could have one day before I was diagnosed"... I hope that you understand it is ALL about you. Yes, your family member, colleagues, and friends hurt to see you suffer like this but, it is you that is physically facing all the challenge that this devastating disease brings to you day by day and you are the one that has to hold your head up high and fight it and make yourself go through the day and not feel sorry that this happened to you. You must've at one point asked yourself, why me? and though there are no good answer for that question but, know that it will all work out but for now look at how much you've accomplished and how many lives you've touched directly and in-directly.

I hope that this means something to you because it is from the bottom of my heart.

Sent by Dori | 2:16 PM ET | 10-03-2006

I heard your story on NPR this morning. I couldn't stop listening to your story. At first I thought it was some type of a campaign, the ones I always hear about the organizations that request for help and then you volunteer to and all they want is money, not your help. But, shortly there after I realized your voice and your story is so powerful that instantly I wanted to reach out to you and just tell you that I care about what you're going through. The way that you described how you get by the normal things you have to do throughout the day just broke my heart. We take all of that for granted and Im sorry that you're going through this. If I could take one day of your pain and give you in exchange one day where you don't have to use meds to get by, I would but obviously that is impossible so I will give you the only thing that I can think of and that is my prayers. I hope that you realize that directly or indirectly you've touched so many lives, me for one and I honestly couldn't wait to get to a computer to send you this note. I hope that it means something to you because it is from the heart.

Sent by Dori | 2:24 PM ET | 10-03-2006

Why don't you give cat's claw a try? If it doesn't beat the cancer at least it will help you with the chemo. It can't hurt, in fact it will help you with the nausia! When you beat the cancer it will keep it from coming back. You make an infusion (tea) or a decoction (concentrated tea) out of it. The end product will taste like tea or coffee depending on how concentrated you make it. Una de gato is the common name given by the Peruvian indians I get it from. I get it from a friend who gets it from a client of his who owns a produce distribution company who happens to be from Peru.

I know in modern medicine cancer can be a killer but in natural remedies cancer is ailment that the body can heal given the proper nutrition. I have heard from various people that have gotten all they can get from modern medicine so they strike out on their own to find out what is possible. I once ran into a guy who ran a gas station whose mother was given up for terminal by modern medicine. She discovered the radiation diet. Where you give up any food that is re-manufactured by man, by which it becomes innately radiated. Within the period of time her doctors gave her to live she completely recovered. If nothing else google yourself (a remedy) once in a while. Under the search heading of natural remedies for...(what ever ails you) and keep in mind that when you are happy your body turns almost instantly alkaline and desease can not survive in an alkaline envivonment, where as when your sad or mad your body becomes almost instantly acidic and desease thrives in an acidic environment. As I understand it, it is the alkaloids along with the immune boosters in Una de gato that can make a difference.

I just can't stand to sit around hearing about people suffering unnessissarily when I know there are more, truly viable, possibilities to be explored. I simply don't have the heart to simpathize with anyone that is unwilling to try to help themselves or others. I am more willing to believe that you simply have no idea that there are alternative as is with most people in this country. There are so many great "miracle Cures", as Jean Carper would call them, that few Americans know about, such as, the number one prevention of congestive heart failure, grape seed extract. Any way all I want to say, basically, is Google yourself (a remedy) once in a while, be true to yourself and others, be happy, and give Una de gato a try. I can't hurt unless you're pregnant or lactating.

Sent by Paul S. Coleman | 5:42 PM ET | 10-03-2006



   
   
   
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Leroy Sievers

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Leroy Sievers in the Ted Koppel Documentary

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