One year ago today I got through my first New Year’s Eve without Jane. She had died just 21 days before. I went out with my brother, his wife, and their son for dinner. They dropped me off at my youngest brother’s house. I was in bed by 10 p.m. I had a flight out of Seattle early the next morning.

I got home from Seattle last night. This year I will do what I was afraid to do last year: face New Year’s Eve here in the house that is our home.

I look at those first two paragraphs and I realize why this blog does not make the list of sites recommended by the Carcinoid Cancer Foundation’s latest e-newsletter.  When the list came out this week I will admit I was initially disappointed walkingwithjane.org was not on it. Then I went to each of the sites they recommended and read them.

All are written by people who are living with NET for others who are living with the disease. They are uniformly upbeat in their tone and their outlook. One even includes a video about how to mix blackberry powder and use it to alleviate the symptoms of the disease. They are writing about life with the disease.

They are living with the disease because they were diagnosed earlier in the process of the disease than Jane was. The stories I write here have to do with the surviving spouse dealing with the aftermath of the disease: the empty rooms, the empty space in the bed–the echos of a life. I am a constant reminder that this disease kills–that we have only delaying tactics and ways to alleviate the symptoms, and not a cure–not for most who get this diagnosis.

This daily expiation is not something anyone freshly diagnosed with NET should read most of the time. Those folks need a strong daily dose of optimism they are unlikely to find here. Information about the latest research? Yes. Links to support groups and foundations? Yes. Hope that we will find a cure? Yes. An advocate for increasing the money available for research? Yes.

But I lost my wife to this vile thing. I watched her bravery and supported it. I watched her optimism and watered it and fed it the way I hope every spouse whose mate gets the NET/CS diagnosis will. I talked with her doctors and her nurses and every technician who came through the door to make sure they knew everything they needed to know to give her the best possible care. Most importantly, I surrounded her with love.

We did all we could to cure her illness. We did all we could to heal her wounds. But, in the end, I had to let her go–her body could no longer fight the disease–and keeping her alive would have been the kind of cruelty she hated most. She killed the cancer the only way she finally could: by dying herself and taking it with her.

Tonight, ten minutes before midnight, I will open the half bottle of champagne we would have shared and pour it into one of the glasses we used each year. Just before the ball drops, I will toast her final struggle and drink it to the lees.

Then I will pour a second glass and–at the stroke of midnight, when all the world goes mad–toast the future.

Happy New Year to you all.

Those of you who know Jane and me know how addicted we both were to planning for the future. Even our vacations were planned with military precision–not that we always followed those plans to the letter. We always allowed for the possibility that some new road would open up that would make for a better trip.

And we were planning like fiends long before we met. That piece of us did not die with her body. I am certain she is planning some things even as we speak. And anyone who knows me at all knows that I am plotting the year ahead for the fight against NET from this redoubt–as well as a variety of other things.

Herewith, then, the goals for the coming year.

• Plan for the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at Dana-Farber
• Talk with those creating, and help out with, the Center for NEC Research and Education at Dana-Farber
• Establish the Walking with Jane Online store on this site to benefit the Walking with Jane Relay for Life Team
• Set up a page on this site where people can make donations to the organizations engaged in fighting this particular cancer, including Dana-Farber, the Caring for Carcinoid Foundation, and the Carcinoid Cancer Foundation.
• Develop and implement a lobbying strategy to fund NET and Carcinoid research at the federal level
• Secure significant funding from the American Cancer Society to increase research and education on NET and Carcinoid Syndrome
• Create the Crawl for the Cure program to raise funds for, and awareness of, NET and CS  at malls across America on the weekend of November 10, 2012.
• Raise $10,000 through the Walking with Jane Team for the Greater Fall River Relay for Life.
• Help create at least three Walking with Jane teams at other Relays
• Raise $10,000 through the Jimmy Fund Marathon Walk for the Caring for Carcinoid Foundation
• Help see funding for NET and Carcinoid research double over 2010 levels in 2012
• Build views of this website to 1000 per week
• Expand both the materials in–and the use of–the Press Kit to continue to raise awareness of NET and CS in the public press
• Achieve wider  distribution of the Is it IBS or NET? pamphlet
• Create and distribute additional NET awareness pamphlets
• Maintain and expand this website
• Continue to build relationships with other organizations involved in NET and Carcinoid Syndrome

When Jane and I were working, this week  between Christmas and New Year’s served a variety of purposes.

First and foremost, it was a time to rest and regroup. While many think teaching is an easy job, it is not–especially if you do it right. The 16-18 hour days had worn us out by this point in the year. We tried to relax this week. Those of you who teach should put away the books and papers until Sunday and get reacquainted with spouses, children, families, and friends.

But it was also a time for thinking about the past and looking ahead to the future. As I have written before, while we cannot change the past, it informs the present and influences the future. A year ago, I was in no condition to be very thorough in that review and planning routine. Jane had died less than three weeks before and I was badly damaged in heart and mind.

Still, I tried to think about the future, tried to think about the past, tried to come to terms with the present moment. I knew I needed to do something about Carcinoid Syndrome. I knew I had to do something about NET. But I also knew I needed time and space to heal before I was going to be any good to anyone. On the plane home from Seattle, as I listened to the flight attendant explain about the oxygen masks–and how you should get yours on before you put one on your child–I found the rationale that allowed me to take those steps first.

But I also felt bound by the promises I had made to Jane: that I would do all I could to fight this thing and destroy it; that I would walk the entire Relay for Life; that I would find other ways to help doctors and researchers take down this disease. At one point I even thought seriously about going back to school to become a doctor or nurse. It was only as I realized that the hours of study involved in those pursuits would get in the way of the work I most needed to be doing that I became able, in my mind, to delegate that work that needed to be done by MDs and researchers, and I let that thought die.

Gradually, a plan evolved. I did the Walk for MS and the Walk for Hunger because those were both things we had talked about doing in the past, but had never found the time to do.

I signed on to do the Relay for Life in Taunton and in Fall River. Friends and students designed and sold t-shirts, organized raffles and baked goodies, figured out retail displays and came up with tents and tables.

I talked with people from the foundations fighting NET and looked for a useful niche or two for Walking with Jane that needed to be filled. We have found good and experienced allies there and in the medical community.

Others designed this website–and have helped tweak it since the launch September 2–built the stories for the press kit, and encouraged a number of other initiatives that will appear here soon.

Historically, I have been awful about accepting help from others, about delegating work and responsibility. This year has taught me the value of that. I’m still not very good at it, but I am learning.

Still, while we have done a lot this year, a lot remains to do. We have only sketched the broad plan and begun to pour the foundation.

NET and Carcinoid Syndrome are still out there taking lives and causing misery.

I have received so many gifts this past year I could grow old trying to write all the thank you notes. I wish I could place a physical gift under all your trees.

On one of the grief support group sites someone posted 12 gifts for those in mourning this time of year. Those gifts have inspired these–my holiday wishes for all of you.

First, health. As my grandfather said, without it, all the wealth in the world is worthless.

Second, unconditional love. Conditional love is a poor substitute for the real thing. Love others as you would be loved.

Third, friendships based on unconditional love. Even marriage needs a sound basis in friendship for those days when there is stress and strain (list of top sources of stress). If every marriage were based on friendship and unconditional love there would be fewer divorces.

Fourth, forgiveness. The most powerful moment in my life was on the day before Jane went into the hospital. We were sitting on the couch together and she said, “I want you to know you have never done anything wrong in this relationship–and anything you think you have done wrong I want you to know I forgive you for it.” Be forgiving and accept forgiveness.

Fifth, patience. It is its own reward. Cultivate it.

Fifth, true humility. None of us does anything alone, even when we think otherwise.

Sixth, the strength and ability to cry.

Seventh, the strength and ability to laugh.

Eighth, the ability to share both of the above with others.

Ninth, the ability and strength to say NO at need and make it stick. (I have taken this from the aforementioned list for those in grief. The nice thing about this form of re-gifting is no one needs to give up the gift to offer it to another. It is something we all need.)

Tenth, the ability and strength to say YES to the experiences–both old and new–that will help us grow as individuals and as a people.

Eleventh, courage to face the times ahead when they become difficult.

Last, wisdom that we may learn from both our own mistakes and those of others, that we may be able to discern the difference between the right paths and the wrong ones, and that we may know when to act–and when not to.

Open each of these gifts in your heart. May they bless us, each and every one.

It is Christmas Eve–my second without Jane. Tomorrow will be Christmas Day–my second without Jane.

A year ago there was only numbness. Today? It is too early to say how I am going to feel. Too early, too, to even guess what Christmas Day will bring. Both will be different than two years ago. Jane was on the mend after fighting off the H1N1 flu that, in her, was nearly all anyone feared it would be. We were happy and thankful.

We worked together to prepare Christmas Eve dinner for her father and sister. We adjourned to separate rooms to finish wrapping the presents we would open in bed in the morning. We listened to Christmas songs and snuggled with hot chocolate on the couch.

It was a quiet night filled with the beauty of expectation. We did not know it would be our last together.

Savor the time you have with your friends and your families tonight. Hold them close to you. We simply never know when these bodies will stop working. We rarely get to know when the last anything is taking place.

But we cannot spend our lives worrying about death–either our own or someone else’s. Death is out there, certainly. Worrying about it can do but little for us. Yes, we need to take steps to preserve our health–and the the health of those we care about. We need to go to the doctor, take our pills, exercise regularly, and keep an eye open for signs of illness and injury. But we cannot allow ourselves to become so concerned with death that we forget to live. When we forget to live we are mere animated corpses waiting to be buried.

When death strikes near us many of us let that death kill us as well. We cease living and begin waiting for death. And in our initial grief that is ok. A year ago life simply did not matter to me very much. Had Death come for me then I might have gone without a second thought. All the flavor in everything had drained away–and a good part of me didn’t care.

“Leave the dead to bury the dead,” Christ says in one of his apparently less compassionate moments. It seems a cruel statement to a man who has lost a family member he cares deeply about. Jane and I shared our lives in every conceivable way–we even shared her death, albeit our experience of it was from two very different points of view. When she died a part of me died with her. But for as long as I live a part of her will live with me. It were a profanation of our love for me to live among the dead while she still lives within me.

So let the dead part of me bury her body–and let that dead part of me be buried there with the part of her that has died. And let our living body carry the parts of us which yet live back into life.

That will be miracle enough for this Christmas Eve.

We must be the change we wish to see in the world. –Mahatma Gandhi

Jane and I were teachers. We came to that work along two different paths that, in retrospect, were eerily similar. After college, I worked in retail, worked as a file clerk, tried my hand at freelance writing. For a time I was jobless, taking whatever day labor I could find. Eventually, I went back to school, got my teaching certificate–but could still not find regular employment. I substituted in Newton and in Brookline on and off for over a year before I finally found a full-time job teaching in Gilford, NH.

When Jane left school, she found work at Morton Hospital in Taunton as a lab tech. She drew blood, did urine tests, looked at samples under a microscope. One night she was on alone when she encountered a problem with a blood test that needed to be done for a pregnant woman. There was no one she could ask. She eventually figured it out, but decided she did not like the feeling of helplessness she’d had because her training didn’t cover what she felt it should have. She was a biologist and a chemist–not a lab technician–by training. The test was one lab techs learned in school in classes she never had. She wondered how many other things she did not know that she should–and whether someday her ignorance would get someone killed.

She went back to school and got her teaching certificate–and immediately found a job in Westport. That was one of the differences between being a science major and an English major in those days: there was always a greater demand for science teachers.

Our approaches to what teaching was about , however, could not have been more similar. Teaching was not giving kids long columns of things to memorize: it was about teaching them to think and to analyze–and then to communicate those thoughts and analyses to others. We both believed that when people could think and analyze and communicate, the world would be changed in significant and positive ways. We dedicated our lives to that ideal–and in the process had an impact on the lives of dozens, perhaps hundreds, perhaps thousands of lives.

Jane was the change she wanted to see in the world. There can be no more fitting monument to her life than for each of us to go forth and do likewise.

So as you celebrate this weekend, take a moment to envision the world, not as it is, but as it could be: a world without want, a world of true freedom and equality, a world with less disease and less suffering. Then think about the small things you can do to bring that world into being.

And in the new year, begin to do them where you are: work to end hunger in your city, your town; work to end homelessness in your city, your town; work for equal rights; work to preserve freedom; choose a disease and work to cure it; visit the sick; help a stranger; teach a child.

To quote George Washington Carver: “Put down your buckets where you are.”

In ancient times on the day of the winter solstice, a great log–the Yule Log–would be brought into the main hall and placed in the fire place where it would be lit–and stay lit until it completely burned to ash of its own accord. For as long as the log continued to burn the old year would continue. And when it was at last reduced to ash, the new year would begin.

It was, of course, a time of celebration: the sun had reached the furthest point of its journey south–the nights had reached their longest. And the further north one went, the greater the fear the sun would forever vanish beneath the horizon. But now the light turned north–and day-by-day the darkness fled before it–as just days before the light had fled from darkness.

But it was also a time of contemplation–a time to review the year passing from this earth and to think about the opportunities of the year ahead.

Ursula K. Le Guin captures the spirit of the time in one of her Earthsea novels. Ged, the protagonist, has been on a long voyage across the sea when he comes upon a great floating armada of rafts. For that day–the Day of Sun Return–the people sit in silent contemplation. Then a drum strikes and they dance silently through the night until the dawn in celebration. But they say nothing until the dawn.

The anniversary of Jane’s death was like that for me–a day of contemplation and the deepest mourning. At the dawn of December 11 I began to cry those uncontrolled tears and felt that uncontrolled rage build and overwhelm my sanity. And, for the first time, I let it take its full course.

Most people who have not experienced it believe grief ends–that by some magical process the end of that year of first events and holidays grief transmutes to normalcy. The truth is it appears to be a much longer process than that. For some, it never ends.

We lost my mother-in-law to pulmonary fibrosis five years ago. We lost my mother to Alzheimer’s 22 months ago. We lost my wife to NET 12 months and 12 days ago. We lost a former student to a heart attack barely two weeks ago.

We talk about trying to create more birthdays and less suffering. We talk about a cure for this disease and that disease. We do all that we can. But death is always out there. We can delay it, but we cannot stop it–not yet anyway.

Our lives are but a little space in the eternity of time. But what we do in that little space matters. How we treat each other–both those we know and those we do not–matters. We can make this world a better one–or we can make it worse.

That choice is not in the hands of any god–it is firmly placed in ours. When we take on that responsibility we will have matured into the creatures the universe–and its prime mover–needs us to be.

Happy Day of Sun Return.

The needs of the many outweigh the needs of the few–or the one. –Spock in Star Trek II–The Wrath of Khan

Have you hugged your spouse today? How about your kids? Your parents? The other people in your life you care about? Have you told them how you feel about them?

A couple of weeks ago I put up the small Christmas tree I bought last year and hung the ornaments Jane had made over the years we were together. Each ornament was like a kiss on my fingers but also like a tear in my heart. Decorating the house for Christmas was a shared act of love for us–and she made me promise before she went into the hospital that no matter what the outcome was I would put up a tree and decorate the house.

Every day was made up of those small acts of love: creating a small surprise at breakfast, sharing dinner at night, massaging her feet as we graded papers on the couch, her massaging my neck and shoulders on a long drive…

Her death sealed all those small acts of mutual kindness. They are both the pain and the joy of my current life.

We expected to grow old together–to slowly decline into old age and death–and when one of us died there would be the solace for the remaining spouse that their own end would not be so far away as to be too troubling.

NET destroyed that dream.

At this moment, somewhere in America, it is destroying that dream for another couple.

And it will keep on doing that until we have more answers than we have now.

Last year I meditated and prayed and fasted and meditated and prayed and ate and prayed and meditated. I focused energy on my wife’s immune system, on her heart, on her liver, on the tumor in her appendix. We found the best doctors we could possibly have found–and we searched and begged for a miracle.

The miracle we wanted never happened. If it had, Jane would be alive and on the road to full recovery. We would have put up the big tree and taken out all the ornaments. We would be bathed in joy.

That miracle would have saved Jane’s life.

But would it have saved anyone else’s? Would this site exist? Would I have met the people I have met? Would I have written what I have written? Would I have done what I have done? Would others? We  cannot know.

I wish she had not suffered through a month of rising and falling hopes–that her death had come more easily. But if it had, would we have built the relationships with her doctors and nurses and technicians that we did? Would her illness and death have had the impact people tell me it had on them?

Jane and I did not get what we wanted. But perhaps the broader world will be different in a positive way because we did not.

I have to hope so.

My classroom was dark when I returned to it a year ago this week for the first time in more than a month. In many ways it may have been too early to return to work. But I could not face sitting in an empty house staring at the walls. And our students–some of whom saw us as substitute parents or an aunt and uncle they were very close to–had been without us long enough.

My journalism and AP students were already in the room. They had fashioned a giant “WELCOME HOME” sign at the front of the room lit by illegal Christmas lights. It stayed there until June–and I left it there to welcome my replacement to the spirit of the place.

That day–and the week

that followed–were filled with small blessings that reminded me of the power of unconditional love in the world. It was a subtext of so much that Jane and I did–and attempted to do–during the course of our careers. That week I lived on what we had sown.

But, in retrospect, we had lived for many weeks–both of us–on the power of unconditional love. It had showered down on us from the day Jane’s doctor first said, “I think you have liver cancer,” continued as we met the and forged friendships with the specialists and surgeons and nurses and technicians who gradually became central fixtures in our lives, and was reinforced and extended by the friends who went out of their way to visit–bringing Jane’s father and sister with them.

“In 900 years, I have never met anyone before who was not important,” the Doctor says in the most recent incarnation of Dr. Who. The implication is the person he is talking to believes himself to be unimportant. And the truth is that everyone is important. Every action has an impact–for good or ill–on someone or something. When we act within the framework of unconditional love those impacts are more likely to be good than ill. None of us is perfect–we forget what we should do periodically and do the wrong thing at the wrong time. And we have to forgive ourselves–and others–when that happens.

I have been blessed this year-and-a-half with endless amounts of patience and unconditional love from those around me. At times my own pain and stupidity has overwhelmed my ability to repay some of you in kind. I will try to be better.

What we do here, I hope, will help to generate a cure and greater awareness of this disease. But equally important, I hope it will help me to rekindle that flame of unconditional love that both of our lives were based on–and spread that love to everyone I encounter in the time that remains.

Jane will not come back to us if we do this. “What’s done is done and cannot be undone,” to quote Shakespeare. Unconditional love does not seek reward. Instead, it seeks the greater good–and the greater joy.

We buried Jane’s body a year ago today. People tell me there were lots of people at the funeral. Whether there were or not I cannot honestly say. My eyes were on the casket and the sudden absence of the person who was half my soul. There was a faint joy in knowing she no longer hurt–that she had gone home. And the numbness of the sudden shock of it held the grief that has since blossomed at bay.

I helped carry her casket into the church. I helped carry it out again. I helped carry it to the grave. It is not a husband’s traditional place in the order of a funeral. But as I had carried her across the threshold on our wedding day, I was determined to carry her figuratively into the new life we both knew was there.

In a little while I will make the solitary drive up the hill to the cemetery. I will finish decorating the grave for Christmas and leave a Christmas card for her. I will come home.

Others will do the same today for those they have lost. They will enter the holidays for the first or second or third or fourth or..nth time… They will face the empty chair, the empty place at the table, the empty space in the bed next to them.

I took my niece to see A Christmas Carol yesterday in Providence. The play is always powerful and poignant for me–and yesterday it was particularly so. For me,Christmas/Solstice/Sun Return/Hanukkah/Kwanza/Whatever other holiday you may celebrate at the turn of

the year, is about the return of light out of darkness and hope out of despair. There is no more hopeless case than Scrooge–and his redemption is a reminder that no matter how dark things seem, no matter how hopeless, the power is in each of us to change the world–or at least some small piece of it. And if everyone worked–to cure one disease, to feed one child, to house one homeless person–the world would truly be changed.

Jane and I fought the battle to educate children–to help them learn to think and feel at the same time–to know that they could make a difference in their lives and in the life of the world.

Now, for a time, my work is the cancer that took my wife, that takes thousands of people’s lives every year. It is sometimes painful work I wish had fallen on someone else. But teaching had its painful moments as well.

In this season it is easy to get caught up in the miracles of the Festival of Light, of the birth of a specific child, of the turning back of darkness. What gets too often lost in the shuffle are the small daily miracles created out of grief and love and momentary compassion. Every person has it in them to be or to create the miracle that saves or betters the life of another.

So don’t just celebrate miracles this time of year–be one.