I'm Tired Of Losing

[HAP]

Dear friends,

I got an email this afternoon from a 26-year-old teacher from New Bedford--which is just down the road from me here in Fall River. I had sent her a thank you note for a recent donation she had made to my Marathon Walk team. Generally people don't reply to those notes, but she did.

She told me she was recently diagnosed with NET cancer; it is in her lungs, her thymus, her breasts...and another half a dozen places. She has been symptomatic for eight years and suffered a mild stroke a few months ago because of what the excess hormones were doing to her body. Despite the stroke, her doctors were convinced it was all in her head. She is now living temporarily in Nashville where one of the luminaries in NET cancer took her on as a patient and finally gave her the right diagnosis.

I've been trying to calm myself down enough to write a reply to that email much of this evening. Her story makes me crazy angry: angry at her doctors for not knowing what they were doing--and angry at myself because, for all my efforts, I have failed to educate even the local medical community about NET cancer in the three years since Jane's diagnosis. I've raised a small bundle of money for research, I've set up a website, I've talked to a number of doctors in the field, I've written articles and gotten reporters to do articles for the local newspapers--but I have accomplished far too little if this young woman got the same kind of non-diagnoses--and the "it-all-in-your-head" response--from the local medical community. Even Brigham & Women's Hospital--a place that has seen more than a couple cases of NET cancer the last few years--didn't catch it.

Maybe it would have bothered me marginally less if she'd lived somewhere other than my backyard. Then I could at least excuse myself on the grounds I could not in any way be expected to reach that far afield in this amount of time. But tonight I am second-guessing my approach to this work. Should I have been visiting doctor's offices with my little pamphlets for the last two years instead of hitting the local media outlets and trying to raise money? Should I have pushed Dana-Farber harder on doing in-service training for primary care doctors? I know I had to make decisions and set priorities, but did I make the right decisions?

She is a brave young woman--that comes across clearly in her letter. She is going to fight this thing tooth and nail--the same way Jane did. But her chances would have been so much better if they'd caught this even two years earlier. Now, it seems like it is everywhere.

Intellectually, I know I have done all I can to help fight this disease. I know that she was in trouble eight years ago when the first symptoms showed up--long before Jane and I had even heard of this disease. But emotionally, her fumbled diagnosis makes me feel guilty as hell. I am supposed to be the journalism expert--the guy who knows how to promote information and get it into the right hands. I haven't done a good enough job of that.

Emotionally, I feel responsible for Jane's death; if I had just gotten her to go to the doctor a little sooner; if I had argued for earlier heart surgery; if I had been more successful at bending God's ear; if... I told them to turn off the machines that were keeping her alive--it was what she wanted--we'd talked extensively about it--but a part of me still says I killed her...

And now a 26-year-old kid is alone in Nashville facing the same kind of cancer. I won't say this to her, but I know when any cancer has spread to this extent the prognosis is not good. We need to be doing a better job of finding this disease--and recognizing it when we see it. We need to be doing more to educate primary care doctors.

One day, Jane and I were playing volleyball with some people. Our team lost game after game. Finally, Jane called us all together. "I'm tired of this," she said. "We are not losing one more game--we are not giving up one more point."

She went back to the service line and stroked 11 straight winners. We won that game--and the next.

I'm tired of losing. It's time to hit some winners.

Peace,

Harry

[DeeU]

Dear Harry, It sounds like the email has triggered some pretty strong emotions: anger, guilt, regret, sadness, helplessness, impatience.....and that is understandable considering all you and your beloved Jane have been through. You say you feel emotionally responsible for Jane's death--hindsight is such a compelling mind-teaser; Usually, we make decisions based on the information we have at hand. We look at the doctors as professionals who know, yet, we sometimes discover that their knowledge is limited, biased, or just plain inadequate. We take responsibility for the death with mental constructs that include a lot of "if only I...".or" I should have...."or "what if we....." thinking....all with the bias that any one of those decisions would have changed the outcome we despise. Yet, we really don't know if it would have at all.....when it comes to illness or dying, there are many unanswerable questions. Agreeing to stop life support for our loved one is the most difficult decision of all, even when we know that is their wish. She trusted you to do what you both knew she wanted if she could not do it herself. She counted on you to do it, knowing that you loved her so very much. I think that it is good that you received the email from the 26yo woman. She reached out to you. She is still hopeful, and she is now receiving the care she needs. You are realizing that change is slow, yet every time you share your experience and knowledge with someone or a doc, you are planting more seeds of awareness and the seeds will grow. It sounds like your Jane was a positive motivator. Remember her "can do" spirit when you respond to the email. She lives on through your memories and will continue to work through you and others who experienced her wonderful spirit. Every positive connection is a "winner." Warmly, Dee

[enna]

Dear Harry,

I am so sorry that you received this message from this young person. I certainly can understand all the negative emotions that have sprung up in your head as you are still trying to understand your Jane’s death. I so agree with Dee’s response to you about hindsight. We all play that game when we lose someone dear to us or hear about someone fighting an illness that should have been caught. I think it is normal to be “crazy angry” and that is all right. Our feelings are going to pop up when we see or hear of injustice. What you are doing is what you need to do and that is giving words to those negative feelings. There really is not anything more you could be doing. You have devoted all this time to a cause that you feel deeply about. That is all you can do. S*^# happens, Harry.

I know that you will send a message from your heart to the young lady. Your Jane will guide you. Anne

[HAP]

Dear friends,

Thank you both. Intellectually, I know you are both right on all counts. But the heart is stubborn and the subconscious is worse. I've had a long night of "quest" dreams in which I keep searching--and not finding--answers to all kinds of things. They are always one more journey away--and like Don Quixote or Galahad I keep taking that next journey.

I'm not going to stop working on this--or anything else on my mortal to-do list. But I am going to take a few days when the current push is over to rethink my approach to see if there is some way I can do some of this better and more efficiently. I am having to make so much of it up as I go along that I know I have to go back and look at things periodically to make sure those first inventions can't be made more efficient.

Equally, I have to keep working through my grief--keep pealing back the layers of this avocado--so that it becomes less crippling than it is. That will come with time and work and I have to be patient with it. But writing, thinking, and working in this perpetual fog is frustrating--too frustrating sometimes for words. I know what I am capable of when I'm running on all cylinders but its been a long time since I had access to even half of them.

But I can't be like the farmer who was so anxious for his crops to grow that he went out and pulled them all up by trying to stretch them taller. I can only do what I can do.

Peace,

Harry

[MartyT]

My dear Harry, I'm so sorry to learn this awful news, and I hope you are able to take into your heart all the wisdom contained in the responses you've received from your friends here. Like you, I wish we could control the universe and run the world and make all this pain and heartache go away, but I also know that so much of it is beyond our control. We can only do what we can do, and you do far more than most. Please let that be enough. This is not your fault. You are in our thoughts and prayers, and so is your young friend. ♥

[HAP]

Dear Marty,

You are obviously NOT an oldest child--or else you have worked through the lunacy in our genes and environment: if it happens it is always our fault .

"Your little brother did what? Why didn't you stop him?" "Well, I was at school at the time and he was at home." "That's no excuse!"

Seriously, you are all right and I know that in my head. Now if it can just get the rest of me to go along...

Peace,

Harry

[mfh]

Dear Harry,

I so understand all those doubts and questions that you carry in your heart.

"Emotionally, I feel responsible for Jane's death; if I had just gotten her to go to the doctor a little sooner; if I had argued for earlier heart surgery; if I had been more successful at bending God's ear; if... I told them to turn off the machines that were keeping her alive--it was what she wanted--we'd talked extensively about it--but a part of me still says I killed her..."

I find myself asking similar questions...should I have done more? Should we have done (a list of things)? What if I had been a better caregiver? I suspect these and other questions are pretty universal but we both know that knowing that does not diminish the impact on our hearts. What I know in hindsight is that we did the best we could do at the time and under the circumstances and even though you are a first born, we middle kids, also struggle with it being "our fault" since it really was usually, in "their" eyes. Lunacy, indeed!

I have no answers...I do have understanding and I can assure you that there is at least one other person on this planet who shares so much of your pain.

Mary

[enna]

We have talked about Don Quixote before, Harry. We are suppose to follow our dreams and they don't always come out the way we would like them to - do they......but we keep following them....

[kayc]

Harry,

I am so sorry.

[HAP]

Dear friends,

I have had three or four main theme songs in my life. This is one of them. Thank you, Anne. I needed that.

And Mary, (I thought you were resting your eyes, woman) the little brother is 12 years younger and was perfectly delighted when I caught the blame for his antics. But the guilt is probably why he joined the police department. My father still blames me for everything the little jackal does wrong--something about setting a poor example.

The young woman's note is a reminder that we are not finished--or even well-started--yet. "But i have promises to keep, And miles to go before I sleep, and miles to go before I sleep," to quote young Bobby Frost. When I was in graduate school at Bread Loaf there was a chair in the hall that Frost used to sit in when he did his annual poetry readings. It was in a corner. Tradition was that if you were facing a block you took your pen and paper and sat in the chair until it passed. We tried to leave the chair open for that purpose--but there was nearly always someone sitting in it.

I could do with a good long sit in that chair this week, but classes ended a week ago and the place is being buttoned up for the winter. But i have my own rocker for that here. Its magic is not yet so strong as Frost's wicker chair--but it does the job. Perhaps a long sit there is in order soon.

Peace,

Harry

[kayc]

Harry,

You can't hold yourself accountable for what the world does/does not know, you are only one person and can only stretch so far. It's impossible to hit up all of the doctors, but that brings me to a possibility...what about medical journals? I used to work for a doctor's office, they always read those...today they may be electronic rather than paper form, I don't know, but that's something that could reach all doctors as they strive to keep abreast of the latest news and findings.

[HAP]

good thought Kay. I'll look into that.

H.

[KarenK]

Harry,

When you lose the most important person in your life, the "what ifs" are always there hanging around in the back of your mind just waiting to strike, especially when we are the ones who have had to make that ultimate final decision. As Mary said, we do the best we can at the time given the information we have received from the doctors. It does not make it any less painful, though to remember that moment.

I have read "Walking With Jane". She is an amazing person, and I use the present tense as I know she will remain alive in your heart and memories. She would be so very proud of all that you have accomplished and will walk with you as you push forward.

Kay made a good suggestion about medical journals. I have another friend on CSN who is a writer. He struggled for years to get a story published about cancer. His story relates the everyday aspect of living with cancer. He wanted so much to offer help, but was faced with rejection after rejection. Finally, an editor of a magazine called "Coping" took the time to read what he had written, and although his entire manuscript was too large for the magazine, she agreed tp publish a small version. He never gave up despite the heartbreak of all those rejections. Just two days after learning that his material was to be published, he was told that his cancer has returned with a vengeance for the fourth time in nine years, but he is stubborn and is still not giving up. I know you can be stubborn too. After clearing your thoughts, regroup and get back in the battle again. It's all that anyone can ask.

Karen

[HAP]

Dear friends,

I am back on the ropes again this morning. On top of our anniversary next Monday, I am dealing with two more deaths today. A former teaching colleague lost her step-mother late last week. And a former student's sister, who had gone missing the middle of last week, was found dead yesterday.

Not really in the mood to write much this morning. I have Walking with Jane stuff to do today and I think I will do some reading later. And i think a long meditation session is in order, as well.

Peace,

Harry

[feralfae]

Dear Harry,

I am so sorry that death keeps visiting. We have lost so many friends this past two years, that sometimes I feel completely abandoned. Three of Doug's dear friends have left since he did, and one is battling cancer and we chat almost every day. This is his third round.

Where do we find a way to go on? (Thank yuou Karen!) Well, Karen's wonderful story reminded me of something my Uncle, who won extra years in a struggle with heart problems, said during the extra ten years he won. He said that since we know we are going to die, the challenge is to make each day as beautiful as possible. He may have said as exciting as possible, but on my note to self on my desktop, it says as beautiful as possible.

I am struggling to learn to celebrate the love and to allow gratitude that Doug shared his love and life with me. We are so fortunate. Yet, the pain of the physical absence of our Beloved and others whom we loved remains present.

And when we begin to be open enough to hold the hearts of others who are grieving, and share their sorrow, I think new depths of pain are released, and we go through times of great sorrow and mourning again. I know it is healing, but that does not make it less painful. There are enough hurts in our hearts and the hearts of others that mourning together is always appropriate, I think. Just as is laughing and celebrating together. I am not able yet to go to memorial services or funerals without falling apart and needing to escape. I send cards, letters, notes, make call, but I have tried once, and once only made it to sit outside in my car, sobbing, remembering Doug and his friend together.

SInce we cannot escape these life life events, I join you in your sorrow and mourning for those who have gone, and for those who have been left behind to feel the pain. Blessings to you for being there for those who sorrow. You have a wonderfully compassionate heart.

With kind thoughts as you open to more sorrow,

*<twinkles>*

fae

[feralfae]

Dear Harry,

Here, I posted this earlier over in Transformations:

Meditations for anyone ...

Ah, I found a very, very good centering and peace-bringing meditation here. It takes about a half hour, and I use headphones. It is very restful, peaceful, and clearing.

He has another video of guided meditation for creative flow, which is wonderful, and you can find it here. Both are very well done. Later I will gift myself the time for both meditations.

[HAP]

Dear Fae,

Thank you. My meditation for the day comes from Tolkein: It does not matter how much time we have; what matters is what we do with the time we are given.

Peace,

Harry

[feralfae]

That is a lovely meditation, and well worth at least a whole day.

Thank you for sharing that.

*<twinkles>*

fae

[HAP]

Today's meditation: The layers of meaning in the phrase, "We shall overcome."

H.

[feralfae]

Harry,

I may not have mentioned that I was a SNCC field secretary for a couple of years. We got paid $17/week and had a place to sleep in the Freedom Houses, while we taught literacy and voter registration in the Freedom Schools. Some of our community schools were later born from this same group of SNCC and CORE workers. I was 17 and 18 at the time, had finished high school at 15, and went to do this work with the total blessings of my Father and Grandmother, by the way. It was a difficult and dangerous time in the South. I was on the front lines, and while I will not go into details, being beaten by government employees was not an unusual occurrence during that time of vicious segregation and a lot of push back from white politicians who wanted to maintain the terrible racism of the South.

I am all archived and stuff at the University of Wisconsin, of all places, as well as in the FBI files. I had my own agent who kept notes on the violations of human rights against me by government employees. I wrote and published a Freedom newspaper at the time, (archived with SNCC archives) so people got to know who I was. I was such a kid that Gram would come on some demonstrations with me, but no one every touched her, thank goodness. She was remarkably feisty. But she cried once when the troopers held me down and used cattle prods on me. You have brought up a whole slew of memories of times when I did not expect to live to be 20. We were quite in the thick of it all. And we were counseling young men to escape to Canada, and flee the war-perpetuating government. I feel blessed to live to see young people being willing to stand against the powers that be when a wrong is witnessed. We may not correct all evil, but I think when people stand against war and outrages, we help to awaken the consciousness of others to options of peace and self-responsibility.

Overcome has come to mean to me to live as an example, and to live in peace and simplicity. Much of the old war paradigm is deeply entrenched in our culture, but I see shifting, and it makes me happy. I also see so many changes on a global scale, even as this government makes more war. I see peace springing up all around Earth. And now I must go take a meeting with some Peace Workers, but thank you for the stroll down memory lane.

Peace

Fae