Dan Perry has changed my mind about lawyers. He has been a key player in helping me piece together what is about to become the Walking with Jane Foundation. In putting together the paperwork, he has reduced to four clauses what took me four pages to articulate. In the process, he has made me think about what our focus needs to be and to begin to develop ideas about how to accomplish those goals.

Over the next few days, I want to examine those issues and begin to outline some of the ways we can bring them about.

The first purpose of Walking with Jane is “To promote and carry out public education regarding the incidence, cause, treatment and cure of neuroendocrine cancers.”

We have already begun doing that through this website, through a pamphlet we have produced called “Is it IBS? Or is it NET?” and throughout every one of our fundraising events. But we have barely scratched the surface of the work that needs to be done in this area.

While I try to write something new for the website every day, I have fallen behind in getting the new information that comes in almost daily onto the site. Part of that has to do with maintenance projects around the house that were deferred when Jane got sick. But part of it also has to do with the emotional difficulties inherent in regular confrontations with the disease that killed her. As the house projects are completed, I will have more time to work on this, but I suspect the emotional issues will be ongoing.

Educating doctors and patients more broadly is also a big issue. Once someone is diagnosed, they often come to walkingwithjane.org to learn about the disease. But we need to get more information out there that will help both doctors and patients recognize the earliest symptoms of this cancer. The key to anything that even resembles a cure of NET at this point requires the earliest possible diagnosis. To that end, we need to develop additional pamphlets aimed at both doctors and patients. We need to get those pamphlets into wider circulation than the handful of south coast doctors who have them now. And we need to find ways to help patients get that information outside of their doctor’s office.

To that end, I have had some initial discussions with a former student who now works in television about developing a series of PSAs for both television and the internet. My thought is something along the lines of CBS’  “The More You Know” spots, but for the web, we might want something a bit longer and more detailed.

Conferences on this disease already exist for both doctors and patients. Unfortunately, they are few in number and often geographically remote. Those aimed at patients are often available on the Internet after the fact. But those aimed at doctors are generally for specialists and researchers. The Dana-Farber Cancer Institute is planning an annual conference on NET and I have encouraged them to create a track at that conference for educating primary care physicians about the disease. They have been receptive to that idea.

For Jane and me, education was at the center of our lives. It needs to be here as well.

It’s official.

I received the letter today that makes me an official member of Visiting Committee for the Gastrointestinal Cancer Center at the Dana-Farber Cancer Institute.  The term is for three years and can be renewed.

What all of this means in terms of the fight against NETs and Carcinoid Syndrome remains to be seen, but the letter says Visiting  Committee members have partnered with Dana-Farber by providing leadership in outreach, advocacy, networking, and education. How much real influence this position will provide I cannot, at this point, say. It would seem, however, that we have at least gained a seat at the table–and that we may be able to generate more interest in NET at Dana-Farber among the higher-ups.

Not that they have not already been influenced by someone. We already have the Walking with Jane Dybowski Fund for NEC, a new center for NEC research, and a website is already in the design phase at DFCI. Only the WWJ Fund can be attributed directly to our efforts through Walking with Jane. The center was already in at least the talking stage before Jane’s death–and the website is a logical outgrowth of that effort.

But I have seen too many important enterprises start out well and then collapse. The 60 years of my life are littered with cautionary tales: the space program and the war on poverty–both killed by politics; education reform–and in particular my attempt in the ’90s to create a new vision of English as a subject–killed by budget cuts and greed; health care reform; nuclear disarmament; Apple Computer after it dismissed its visionary…

I will not treat this as a sinecure. I will not treat this as a dinner once a year and a tour of this or that lab. I will not treat this as an opportunity to rub elbows with the wealthy, the powerful, or the influential.

Anyone who knows me knows I will use this as an opportunity to make sure the work keeps moving forward. They know I will ask the awkward questions and raise the difficult issues. I will do everything I can to keep the work focused on finding answers, educating doctors, and helping patients.

I don’t pretend to have the scientific and medical background that I would like to have as I begin this part of this work. But I have been up close and personal with the monster that is NET–that is Carcinoid Syndrome. And I intend to remind people on a regular basis that this work is not about accolades or reputation: it is about laying this disease to rest so that no one has to go through what Jane suffered.

I have no reason to believe anyone at Dana-Farber–or anywhere else–wants anything other than a cure for this nightmare for exactly that reason. But if anyone forgets, I am ready to play Jiminy Cricket–or any other role they need me to play.

I signed my will today.

It was the final act of an hour-long meeting with my lawyer that began with a review of the language for the by-laws of the Walking with Jane Foundation and a couple of additions to the purposes of the organization. In a few days the paperwork for that next step in our campaign against NETs and Carcinoid Syndrome will be ready for submission to the Commonwealth of Massachusetts. Then it is simply a matter of waiting for the official notice that will signify the birth of a new entity.

Part of me thinks it is fitting that on the same day we begin the final steps to bring the foundation to life, I took the final steps that will dispose of my material possessions after my death. Somehow I feel those things really are no longer entirely mine–that I am merely holding them in trust for those who come after me. I have always felt that way, but never so clearly as I do tonight.

I have always known that this body would, despite my best efforts, die. Jane’s death reminded me of that in ways that were anything but subtle. But signing that document just before noon today underlined that sense of mortality in a new and very different way–one in which there is a strange sense of peace that I have not experienced before.

Jane and I were never materially wealthy. We have a house. We saved some money for our retirement. We earned our pensions. Eventually, I have enough quarters that I may get a pittance out of social security. But I am still clipping coupons and looking for sales. My car is over a dozen years old and I am hoping to get another three or four years out of it. I worry about inflation. I worry about the economy. I am not Warren Buffet or even Mitt Romney–neither of whom will ever have to worry about what will happen if they get sick. And I have seen just how expensive a serious illness can be.

But we were wealthy in ways Bill Gates will never comprehend. We had no children of the body, but our children of the mind are everywhere. They build bridges and houses and buildings of every shape, size and description. They are surgeons, oncologists, and primary care physicians. They staff hospitals and schools and police and fire departments. They drive ambulances and trucks and fly planes. They are mothers and fathers–husbands and wives. They are cooks and waiters and waitresses. They do every job you can imagine–and likely a few you cannot.

We did not make much money in our lifetimes–but we made a difference in the lives of every student who came through our doors. And those students are making a difference in the lives of others who will make a difference in the lives of still others and others.

In those terms, we were–and are–wealthy beyond imagination.

Go thou and do likewise.

Sometimes I feel a bit like President Obama, who won the Nobel Peace Prize before he really had an opportunity to do anything on the global stage.

No, there is no Nobel Prize coming my way any time soon. I’d like a MacArthur–but that seems pretty unlikely as well.

But last night was just plain strange–and I don’t feel we have done anything substantial enough to merit the kind of attention we got last night at Fenway Park.

About three weeks ago, I received an invitation from Dana-Farber Cancer Institute and the Jimmy Fund to go to a Red Sox game in appreciation for the work Walking with Jane has done over the last year. They offered me tickets for a couple other people from the group as well, so I took Jane’s sister and one of Jane’s closest friends along. I love baseball, and the Red Sox in particular, so I was not about to say no.

Those tickets were no big deal. My alma mater invites me to dinner once a year or so because, while I don’t make huge donations, I have been a regular contributor for the last 20 years or so and fill out a table well. I looked at last night the same way. Walking with Jane’s contributions, in terms of money, are not huge–but we all make contributions of our time to various cancer projects and work diligently to help out any way we can.

Yes, we have a Relay for Life team. Yes, we have a website. Yes, I did the Marathon Walk in September. But it isn’t like we have raised millions–or even hundreds of thousands–for the cause. It’s not like we have a thousand people a day visiting the website. Those are goals–but we have not reached them yet.

Before the game, there was a pizza buffet in the Players Club. The three of us went in and started for an empty table. My two dining companions got there without incident, but before I got halfway there one of the people from the development office stopped me. She said the woman I usually talk to was not going to be there that night but that she–the woman who had stopped me–had been to the website and been impressed by it. We chatted for a couple of minutes about the Cure Crawl–something I have barely mentioned to anyone, but which she knew about–and she moved on to the next person she needed to see.

Before I got ten feet, the woman playing host for the event stopped me to talk about Walking with Jane and how wonderful we were doing and how much they appreciated the work we are doing on NET.

Ten minutes later, she brought the chief of staff for Dana-Farber to our table. He knows about Walking with Jane and has been to the website and been very impressed with it and what Matt Kulke has told him about what we are doing.

This went on all through the dinner portion of the evening–and all I could think to myself was, “But folks, we really haven’t done anything near what we have planned yet. We’ve just been laying the groundwork.”

But now that I have had a chance to think about it, we really have done a lot in the last year. And while it seems like very little to me in the context of what we have to do, as Jane’s sister said to me last night, “The journey of  ten thousand miles begins with a single step.” Many people never take that first step despite the best of intentions.

We have taken several steps toward the goals we have set–and we have taken them rapidly. My thanks to you all for making those steps–and the attention they have brought us–possible.

Forgiveness is not something that happens automatically in any relationship–nor should it. While it is an action prompted by unconditional love, its application must follow logic and reason. Forgiveness must often be predicated on adjustments in the transgressor’s behavior. In Part 3 of this series, I used an example from early in our marriage. While part of what went on there came from a misunderstanding of the way I was using language, we both agreed to avoid language that was violent  as a result.

We did not always succeed. One night, in the heat of an argument, Jane told me to “Go to hell–and come back.”  She realized as the first part of it came out of her mouth what she had done and tried to save it with the second half. That attempt completely deflated the intensity of the argument on both sides–and we walked things back from there. It became, eventually, a thing we could laugh at. Neither of us were perfect–but we tried to be the best we could.

We tried to carry the idea of forgiveness into our relationships with others–but it was not always easy. Sometimes things happen that shatter the trust that must be present in the teacher-student relationship. Sometimes the penance necessary to rebuilding that trust seems–at least to the students involved–excessive. Holding anyone at arm’s length for a long period of time was difficult for either of us. But sometimes that is what our love for others required of us. There are some lessons that can only be learned in specific ways. Or maybe we were just not wise enough to find other ways.

Ronald Reagan had a wonderful line he used during disarmament talks with the old Soviet Union: Trust, but verify. Without the ability to verify that a change in behavior has occurred, it is difficult to trust.

And there are those whose actions are so heinous that forgiveness can be a long time coming. I caught the very end of a Rifleman episode from the late 1950s or early 1960s the other night when I turned on the TV a little early to catch a M*A*S*H rerun. Chuck Connor’s character is a single father, but I never saw what happened to his wife. The episode in question appeared to have answered that question–and the ending implied that her father had something to do with it–and whatever it was had shattered the relationship between the two male adults.

In the final scene, the wife’s father says to the Connor character that he hopes someday the Rifleman will be able to forgive him. Connor explains that he does not hate the man. “Not hating is the beginning of forgiveness,” the old man replies.

Jane and I always tried not to hate anyone. That may have made forgiveness ultimately easier for both of us. Our love for each other made forgiving the other inevitable. One cannot stay angry in the presence of that kind of love for very long.

We forgive those we love unconditionally for what they do. Like any couple, Jane and I had disagreements. But those disagreements were nearly never carried out in public. We could argue. We could get angry with each other. But one or the other of us would eventually see we were wrong and apologize. By the following morning, we had forgiven each other and moved on.

Most adults do not actually argue about the things that are really bothering them. The result is the real issues in a relationship never actually surface. Neither of us would ever let the other off the hook. When one of us became upset over what appeared to the other to be a minor issue, the question of the real issue was always pursued.

Early in our marriage, I used the phrase, “To the moon, Alice” from the old Honeymooners television program with Jackie Gleason. Jane was so angry she couldn’t speak. Gradually we got to the main issue: she was afraid the line was prelude to me becoming emotionally or physically abusive. Intellectually, she knew better–but emotionally was a different matter. Knowing that land mine was there was all it took. She forgave me for the comment–and I made sure to avoid anything even jokingly similar thereafter.

The power of forgiveness screams from the pages of the New Testament. Christ drives away a group of people who are about to stone a woman for adultery with the simple, “Let he who is without sin cast the first stone.” When the mob gives it up, he forgives the woman and sends her on her way. What people forget is that he forgives those in the mob as well. By asking them to examine their own consciences, he begins to unleash the awesome power of forgiveness in their lives as well as hers.

The day before we went to the hospital for her heart surgery, Jane sat on the couch with me. We said many things that day. She was determined that this operation would be the first step to her return to good health. “I fully intend to survive this,” she said. “But if I don’t, I want you to know that you have given me a wonderful life–that the last 23 years, I have been truly alive because of you. I want you to know that you did everything right. But if you think you screwed up somehow, I want you to know that I forgive you for those things. I don’t want you to carry any guilt with you. You did everything right. You have nothing to be sorry for.”

Here was a woman who knew–as I did–the odds for her long-term survival. There is nothing trivial about open-heart surgery. Valve replacement is not a heart transplant–but under the best of circumstances, it is not a routine operation. And Jane’s circumstances were far less than ideal. Yet there she was, forgiving me and telling me to move on if the worst happened.

I said similar things that day. We both went into her last month mutually shriven–not by any church or authority–but through each other.

People forget that in forgiving others we gain forgiveness for our own errors.

Two days after we buried my wife, I returned to my classroom. I still lack the words to describe that solitary walk from the parking lot to the building and then down the hall to my dark room. It had been more than a month since I had been there. Jane had been alive and we had no idea how serious the damage to the valves in her heart had become. My brothers had gone back home after the funeral.

I turned the key in the lock–and as I did, a string of lights came on against the far wall. They illuminated both my journalism and AP students and the letters they had constructed on the wall: WELCOME HOME. In that moment my heart was lightened, and I realized my students had absorbed at least the first, second, and third dicta that had driven both Jane’s life and my own: The first was unconditional love; the second, logic and reasoning; the third is best expressed in the words of Spider Robinson: “Shared pain is decreased; shared joy is multiplied.”

There was a time both Jane and I were avid collectors of quotes that phrased the pieces of what we believed and lived more effectively than we could express them ourselves. One of our students referred to the quotes on Jane’s wall as the “Old Wall of Wisdom.” We tried to avoid duplication since we shared many students. I got to keep the Robinson quote because I had used it for years–and because it was the driving vision of the newspaper staff.

Our students had seen my pain. Many had come to both the wake and the funeral. They had expressed their sympathies in the ancient rituals. Some graduates had come by the house afterwards and sat with me for a time after the funeral. But the current students had other plans. That morning, they reminded me that I was family. In sharing my grief and trying to do something others would not have thought to do, they had decreased my pain.

Their actions that morning were prompted by love and they had used their powers of logic and reason to find the best way to welcome me back into the school and my classroom and their lives. Young as they were, they had seen our lives and how we lived them. Those lessons had, for some of them, begun long before the encountered us. Our example had only strengthened those ideas. For others watching us had been their first introduction to a way of life based on more than simple self-interest.

The Robinson quote is, however, a derivative of the first two principles. Its compassion grows from love, but its expression is based on observation, logic and reasoning. Love prompts the action, but the action taken is derived from the observation of many human interactions. When we express our pain to others, the burden of it–at least momentarily–lightens. When one of us celebrates, all those around desire to take part in that celebration. When we act intentionally to draw out pain or celebrate another’s joy, that becomes a logical act of love.

And that combination of positive emotion and logic creates a powerful goodness.

I have used the term “children of the mind” several times in recent weeks in talking about our relationship with our students. Jane and I had been using the term for years before I came across the phrase in one of Orson Scott Card’s Ender novels. His use of the term was similar to what Jane and I meant by it–but different in many respects.

Many people think a teacher stands at the front of a class and delivers knowledge to students. They think, ideally, we should be robots programmed to deliver particular facts in a particular sequence that will lead students to specific conclusions about particular things. They want us to avoid anything that will lead students to think otherwise than their political viewpoint believes. We are supposed to be value neutral about everything.

This is true of people on both sides of the political spectrum. Those on the left are only slightly more subtle about it than those on the right.

But to be a good teacher, you have to be a human being. The things you value will find their way into student’s lives no matter how hard you try otherwise.

Not all of our students became our “children of the mind.” Those who did share no particular political belief system. Some of them were the “best and brightest.” Some of them were anything but that. And many fell into the vast middle in terms of native intelligence.

Our classes did not reflect a particular belief system. But the practice of our daily lives demonstrated a value system some of our students seem to have–consciously or otherwise–embraced. Neither of us professed a belief in Christianity, but as I walked down the hall one day with one of our students she turned to me and said, “You know, you and Ms. Dybowski are the most Christian people I know. Everything you do seems based on love for others. It’s like you really care about all of us.”

Love was at the center of our lives. It was not something either of us thought about. It was simply the uppermost of a group of guiding principles. I don’t think either of us ever thought of ourselves as particularly Christian, though Christ was an important figure in our lives. We were more interested in his humanity than any claim to godhood. He said “Love one another” was the greatest commandment–and it was that idea we embraced above all else.

The acceptance of that idea took us to logic and reason and the use of these to examine evidence before making decisions. We acted out of love but decided based on reason, logic, and evidence. In a world in which everyone acted out of love in human interactions, perhaps one would not need to confirm with logic the promptings of love. But the vast majority of human beings act largely out of self-interest, not the needs of others. And the world, beyond human beings and certain other animals, does not know or respect love at all.

We did not hide these things from our students. We could not have done so any more than a person can easily hide the color of his skin. It was that much a piece of who we were.

There are times when I know what will set off a grief storm.  And there are others I do not see coming.

When Jane was still alive, we would go out to breakfast on the weekend at a little bagel shop not far from our home. While Saturday mornings were always a mixed bag of largely changeable faces, Sundays were very different. Virtually every Sunday, the same group was in attendance–and we became friendly with a large number of those folks.

Among them was a mentally challenged young man who loved sports. He and Jane would touch base every week about the Red Sox or golf or the Celtics or the Patriots. There was no pretense about him and we all enjoyed our Sunday morning encounters.

After Jane’s death, I tried to make contact with all the regulars so they would know what had happened. But it is hard when you only know people by their first names and what they did (or once did) for a living. And one of those I did not catch up with was that young man.

Since then, my appearances at the shop have been relatively rare–and I have avoided the times we were usually there. It was six months before I could even go in the door at all after the funeral. Our regular days and times are still things I do not have the heart for.

I went in Wednesday morning of this week–and there was our friend. He was at his usual table–a bit later than when he used to be there. We nodded to each other as I stood in line. He came over and asked how I was doing. And then he asked where Jane was.

He didn’t know.

I teared up as I told him she had died. He teared up as well.

I got a note this week from a student I had not seen since shortly after Jane and I got engaged. She had come across my Facebook page a few days before. Her  letter was upbeat and gave a quick synopsis of what she had spent the last 20 years doing. At the end, she asked how I was doing and if I was still teaching.

She didn’t know. After I came back from the grief that stirred up, I wrote back about Jane.

And I realized that with all the students we have out there that there are going to be large numbers of them who will not have heard–and for whom the news will touch off a small avalanche of grief. Our children of the mind will get the news in dribs and drabs–one here, two there, four or five a month from now or a year from now.

I learned this winter that my favorite teacher from high school had died 18 months earlier. There was a stab of pain and guilt. I should have kept up with him. I failed to do so–failed to tell him again what he had meant to me as a teenager and a young man.

But that is very much the world we live in. We leave our home villages. We go where our work takes us. And sometimes the news is slow to reach us despite all our technological devices.

For all our social media, sometimes we still live in 1750.

I feel overextended sometimes. Usually it comes on me at the end of a long day of housework and writing and reading and thinking.

Sometimes it comes at the beginning of what I know will prove an 18 hour day that will encompass all of the above coupled with meetings and conference calls and long answers to multiple emails.

In those moments, I try to remind myself of why I am doing what I am doing and the progress accomplished so far. Sometimes it works.

Sometimes it doesn’t.

Someone I admire a great deal told me earlier tonight she admires my patience in dealing with all of this. But she sees only the public persona–as most people do. She does not see me sitting alone most nights trying to stick my mind back together so that I can get the next piece written or make sense out of a piece of research or plan the next event or complete the next step in this or that campaign.

There is a phrase Jane repeated over and over again in the hospital: “I’m OK. I have to keep moving forward.” It was her mantra.  She wanted all of us–the doctors, the nurses, the technicians and me–to know she was getting better. She was determined to will herself back to health.

I find myself repeating that phrase with the same cadence and the same intonation when things seem darkest. Sometimes all it does is remind me how frustrated and trapped I feel. Sometimes it pulls me back into the light. And sometimes it takes me back to that hospital room–and the most difficult hours of our life together.

We fought for her life every day. It was a battle we would fight together–and lose together–and win together. Ultimately, as one of her doctors said, she did beat the cancer in the only way she could: she died and took the cancer that ravaged her body and her mind with her.

We lost a warrior that day. I lost my best friend. But we sometimes have to lose a battle in war in order to win in the long run.

And we will win this war against NET–one lab at a time, one treatment at a time, one patient at a time, one day at a time.

We just have to keep moving forward every day.