Category Archives: Grief

Another month alone

Death, Grief, Jane, Uncategorized

Two anniversaries

Two friends celebrated their fiftieth anniversary this weekend. Several of us went to mass with them, then spent the afternoon at a local restaurant eating and laughing together. I smiled, hugged them both, and felt some happiness for them. No one mentioned Friday was 55 months since Jane died. I don’t think anyone remembered. Nor did I expect them to. It would have soured everything.

I don’t fear death.

It’s amazing how good I have become at hiding pain when I need to. My friends were surrounded by an aura of joy and I knew I must do nothing to damage that moment. They are not young and I worry about their health. I want them to suck up and enjoy every minute of couple-hood they can get.

Pain-filled realities

I try to be good at anniversaries, birthdays and the other celebrations in people’s lives. I know too well what it is to face Christmas, Valentine’s Day, and Halloween alone. I understand too well what it is to have no one to share the hummingbird’s return with or the small joys of a freshly finished landscaping project. I know what it is to face every day alone.

It would have soured everything.

There is an underlying tragedy awaiting every pair of soul mates. Sooner or later, one half of that partnership dies. And it is painful on both sides. I remember Jane’s tears when I told her there was nothing left to do–nothing left to try. I know what every day is like for me. I begin and end every day alone and empty.

Celebrating the big and the small

Last September we would have celebrated our twenty-fifth anniversary. The day passed unremarked by anyone other than me. Last November, Jane would have turned 60. I took a card and some flowers to her grave. If anyone else remembered, they didn’t tell me.

I try to be good at anniversaries…

And I don’t expect people to remember those dates any more than I expect them to remember the anniversaries of her death. They are the kinds of things that couples take joy and sorrow in. The rest of the world has its own joys and sorrows. While both halves of a couple are still alive they need–and deserve–to enjoy the days they have, no matter how big and no matter how small.

The nature of couples

Jane and I did that. We sucked the marrow out of every bone the gods tossed our way. We shared not just a bed and a house, but a life as well. I have days I wish I had not loved her so deeply. I have days, still, where I cry myself to sleep, days where I hold the pillow she slept on to my nose, hoping to pick up even the slightest hint of her presence.

Last November, Jane would have turned 60.

My friend talked Sunday about his wife being his right arm. I understood what he was trying to say–but the truth always seems like hyperbole. His wife, like Jane to me, is more than a right arm. She is half of all he is–just as he is half of all she is.

A touch of envy

I won’t pretend I am not both bitter and envious. I very much want the things they have–the years they have enjoyed together since Jane and I celebrated their twenty-fifth anniversary with them less than a year after we were married. I desperately wanted–and needed–Jane with me there on Sunday as a warm, physical presence.

Last November, Jane would have turned 60.

Jane always said we would not reach our silver anniversary unless we counted in dog years. My response was always that we would–that we wouldn’t be that old–62 and 59. Fifty years might be a stretch, but given our genetics, even that seemed possible.

Fighting Death

Loss hurts. Death does not kill just the person we bury. It kills the couple, as well. I am not the same person I was when Jane was still alive. I am, in some ways, a colder and more bitter man. In others, I am kinder and more compassionate.

I very much want the things they have…

I have seen Death in my beloved’s eyes, been so close that I could feel the rustle of his robes, smell the pleasant stench of his presence, and hear the whisper of his scythe. I know what it is to try to stop Death–and I know what it feels like to fail.

Moving forward, alone

I don’t fear death. It is a long time since I did. But I am not anxious for it either. People talk about seeing their loved ones again and how happy they will be when that happens. The possibility holds no fascination for me. Jane and I were about making this world better. I still am. That work is not finished. It would profane all that we were if I abandoned that task.

I have seen Death in my beloved’s eyes…

So I keep trying to move forward. I get up every morning. I make the bed. I shower. I shave. I have breakfast. I do whatever work is before me every day. And I celebrate the milestones in other people’s lives, hoping the memories we create on those days will help sustain them in the days when half of who they are is no longer present.

One reason I work on NET cancer issues is that I don't want anyone else to face a life alone without their other half.
One reason I work on NET cancer issues is that I don’t want anyone else to face a life alone without their other half.

 

Month fifty-four

Death, Goals, Grief, Uncategorized

Month vs. year

I wanted to call this piece “Four-and-a-half years,” which is the same as fifty-four months in terms of time, but not, somehow, in meaning. With a child, we draw the line around 48 months. With death–at least with Jane’s–it appears to be different.

Jane’s life was an unequivocal success.

My father died almost a year ago. My mother died 10 months before Jane did. I lost a good friend to triple negative breast cancer just over a year ago. I have no problem talking about their deaths in terms of years. Of course I didn’t spend the last month of their lives in a hospital room holding their hands, either.

A month of deaths

The last month has been a difficult one in my corner of the carcinoid/NETs community. Half-a-dozen patients I’ve become close to–two of them significant figures in creating foundations and support groups–have killed their NET cancer the same way Jane did: by dying and taking it with them. I’ve done what little I can for their spouses and loved ones. It never seems as though it is enough.

…it appears to be different.

Nothing I do ever seems like enough. Friends tell me I can only do what I can do–that one person can only do so much. And intellectually, I can agree with them. But my heart can’t accept that. I’ve seen too much pain and too much suffering and been unable to do much to alleviate either one. My Buddhist training tells me I should take a very different lesson from that than I do. I am not a very good Buddhist.

What I wake up to

My Taoist training insists there is little constructive I can do–that waiting is. I am not a very good Taoist. The Christian part of me talks about all of this being part of the divine plan. I am a lousy Christian. If killing people with this hideous form of cancer is divinely inspired, I want no part of that divinity.

It never seems as though it is enough.

There is a sign on the wall opposite my bed. It is placed so it is the first thing I see when I wake up in the morning. It says, “It is never too late to be what you might have been.” It reminds me that the failures of the day before are no reason to give up on the work of today. It refuses to let me set down the work I have adopted as my own. It refuses to let me stop striving to embody what I believe.

A month for change

I accept that suffering exists in the world–but that does not mean I don’t try to ease it for others where and when I can. I accept that there are things I may not be able to change, but I try to change them anyway because I cannot know what is impossible until I try. Divinity can want what it wants; I can only do what my heart tells me is right. I am more concerned with humanity than I am with the needs or desires of any god.

It is never too late…

People tell me constantly how pleased Jane must be with what I am doing. I do none of what I do to make her happy.  Jane is far beyond my ability to make happy or sad now. It is not that I love her less than I did when she was alive, but our work was for–and with–the living–and my work still is.

A month of frustration

I feel frustrated this month. The anniversary of Jane’s death was much more difficult this month than last. All the deaths of the last month have taken me back to Jane’s last days over and over again.

I am more concerned with humanity…

Financially, Walking with Jane is running behind last year’s numbers. In terms of raising awareness about NET cancer, our efforts seem stalled because I can’t figure out how to extend our reach. The goals I set at the beginning of the year seem to be sliding out of reach. I’m having trouble getting pieces of writing to work–and my book on grief is the worst of it. I feel mentally constipated and my usual laxatives are not working very well. Even the garden is struggling.

Judging a life

But I am too stubborn–or too stupid–to quit. It doesn’t matter which it is. Last night I had a series of dreams about individuals solving problems that improved human lives. Most of them were nameless folks who saw something that needed to be done and did it. They were frustrated at times, too. But they kept working at whatever it was. Sometimes they solved the problem. Sometimes, they created the groundwork others built on. Sometimes, they failed completely.

…our efforts seem stalled…

At the end of Oedipus, Rex, one of the characters says we should never count a person’s life as happy or sad until we have seen the end of it. Equally, we should never consider a person’s life as successful or not until we have the whole body of that life to look at. Jane’s life was an unequivocal success. But my life is not over and no one should judge it one way or the other until it is–including me.

Jane still lives in my heart. No month goes by that is not filled with memories of our life together. But memory cannot get in the path of progress--or at least it cannot be allowed to prevent progress.
Jane still lives in my heart. No month goes by that is not filled with memories of our life together. But memory cannot get in the path of progress–or at least it cannot be allowed to prevent progress.

The Garden

Death, Grief, Jane, Uncategorized
My garden projects all feel like "ground under repair." My life seems the same way at times.
My garden projects all feel like “ground under repair.” My life seems the same way at times.

The garden tells a story

If one can tell the state of a man’s mind and marriage, as one of the characters in Amy Tan’s Joy Luck Club insists, my garden has told a very sad story over the last five-and-a-half years.

…and the possibilities are endless.

In October of 2009, Jane came down with the H1N1 flu. Normally, October and November were button-down months for us. We would pull out the dead annuals, divide those perennials that preferred fall separations, mulch the shrubs, clear the detritus from the vegetable garden, spread compost to let it work its way into the soil over the winter.

One thing drives out another

The flu hit Jane hard. It put her flat on her back for several days. Just as she began to recover, pneumonia sent her back to bed. On Halloween, she watched the trick-or-treaters from the window. I would not let her near the open door, afraid some chill would put her back to bed.

…October and November were button-down months…

My attention was riveted on her. I managed to mow the lawn periodically, but the rest of the yard work was beyond both of us. We left everything for spring.

The last spring

Jane stayed weak all winter, but did the spring pruning. She got up on the stepladder and cut back the Rose-of-Sharon that was–and is–the centerpiece of one bed. Normally, that was a fall project. I coaxed the vegetable garden back to life, but we bought most of the plants that year. Usually, we started the vegetables from seed so we could be certain what they were and that no one had treated them with pesticides.

We left everything for spring.

We both knew something wasn’t right. She tired easily. Every day, her ankles were swollen. She told me later there were times the world seemed to fade around her–that when people spoke, sometimes they seemed to be very far away. She kept that from everyone. She said she had promises to keep to her students.

The last summer

The garden suffered that summer. Jane’s legs were so bad she had to give up her two hours of tennis every day. Normally, I would walk for an hour while she played, then come home and weed and do the other things it takes to make a garden grow. Instead, we tried to walk together every day. When we came home, we would read and talk. The garden didn’t matter much that summer. I neglected the weeds, the rabbits and the groundhogs.

We both knew something wasn’t right.

My focus was elsewhere. I was terrified–terrified that I was losing her. I think she was terrified, too. But we hid that terror from each other. She was probably better at it than I was. I wear every emotion, unguarded, on my face.

The last fall

I did the bare and necessary minimums in the yard that fall. Walking across the lawn one Saturday afternoon my foot disappeared into a sudden sink hole nearly to the knee. It was the only time that Jane was sick that I let my anger out. The air got an earful. All the anger I felt about the cruelty of what was going on with her spewed out in a handful of words before I got control.

The garden suffered that summer.

Jane died just over a month later. The hole in the ground stayed marked, but unrepaired, until spring. I am still dealing with it.

Ground under repair

I’ve made abortive efforts in my garden every year since. The first spring, I pruned the Rose-of-Sharon. I found a hummingbird nest in it and started off the ladder to tell Jane. The realization she was not there shattered me. I went through the motions of putting some plants in the ground, but my heart was in none of it.

I am still dealing with it. 

Nearly two years ago, I started putting a fence around the garden to keep the groundhogs out. Last year, I managed to prune the plants in two of the foundation beds and plant two small trees. I kept starting landscaping projects, but never seemed to finish any of them. Every inch of every bed looked like ground under repair.

Two kinds of people

They were a perfect reflection of my life, my mind, my heart, and my soul. Their unfinished state is a perfect metaphor for every other aspect of my existence.

The realization she was not there shattered me.

A friend of mine once said there are two kinds of people in the world: those who want to die with everything done and those who want to die with a thousand things still to do. I must fall into the latter category: I have a foundation to fight Jane’s cancer that always has at least three new projects hanging fire–and whose government paperwork seems endless; I have the beginnings of two novels, a book on journalism, a book on mourning all started and in various stages of completion;  I have three landscaping projects in progress and plans for another three in mind; and then there are rooms to paint, carpet to replace, and a basement to clean out and rework into the office Walking with Jane really needs.

Something changed

There are times, even now, I am overwhelmed by all of it. But somewhere in April, something changed. Part of it was the 52-month rebirth ceremony I celebrated alone in the rain at Jane’s grave. I felt the way people say you are supposed to feel after the funeral–but never do if you are the spouse or the children. The weight lifted and I could see the world of possibility again.

Their unfinished state is a perfect metaphor…

But part of it was also finally getting into the garden as something more than a chore. I started April determined to get all the beds truly cleaned out for the first time since the fall of 2009, determined to finish the groundhog defense system, determined to finish the enlarged bed around the mailbox with the perennials I spent the winter raising from seed. Each day, I made–and saw–visible progress.

Seeing instead of thinking

In mid-April, I realized I was no longer thinking about the gardens–I was seeing them as they would be; I was sleeping the night through–and no longer awakening from strange and troubling dreams; and the lists I made of things I wanted to do had fewer and fewer tasks unfinished at each day’s end.

…I could see the world of possibility again.

I still have awful days. Sunday marked 53 months since Jane’s death and I got lost in her grave for quite a while that day. I built her a planter of white geraniums, white impatiens, and purple petunias–that last a gesture to her mother who is buried beneath the same headstone.

Seeing the future

When I came home, I did some housekeeping and moved some furniture around. But this time I was not trying to forget my pain in those things. An engineer was coming Monday afternoon to look at the house for solar power. He needed to be able to get to the attic and be able to see some things that are tucked behind the furniture.

I still have awful days.

Finally, I am seeing glimpses of the longer future and there are things I need to do to prepare for it. For both of us, it was important to live our values and beliefs. Our gardens were a symbol of those things–as those solar panels on the roof will be.

The garden and the soul

Our gardens did not just feed the body, they fed our souls. I forgot that somewhere in the last few years. Neglecting them was evidence of how badly injured my soul was when Jane died. They’ve tried to nourish me despite how badly I’ve neglected them. And now that I am truly paying attention again, the dividends are greater than I could have imagined.

…I am seeing glimpses of the longer future…

The ground is still under repair–both in the garden and in my life. Truth be told, they always were–and they always will be.

The garden universe

But if a garden is truly the image of a man’s soul, then mine seems to be in healing and growing mode: the stone paths in the vegetable garden are nearly finished; the peas and onions and radishes are out of the ground, the tomato transplants are doing well and the eggplant is ready to move from the cold-frame to the garden; the day lily transplants have taken hold, as have the coneflowers and alyssum; last year’s hydrangea and lilies have sprouted; the azaleas are in bloom and the peonies have formed their flower buds.

The ground is still under repair…

For the first time in years, my heart feels light–and the possibilities are endless.

The vegetable garden rebuilding project is nearing completion. I still have some stone to move--and I may need more than I have. But I am making progress.
The vegetable garden rebuilding project is nearing completion. I still have some stone to move–and I may need more than I have. But I am making progress.

Ring on my finger

Death, Grief, Jane, Uncategorized

I walked off a cliff yesterday

Jane didn’t want to be buried with her wedding or engagement rings. She insisted I take them off when she died. And I did that. I told her that when she died, I would move my own wedding ring from my left hand to my right after I took her wedding ring off her finger. I didn’t do that–until yesterday, the 52 month anniversary of her death.

Jane put it on my finger…

I’ve felt that moment coming for a few months now. In February, I listened to a story on the radio in which a woman talked about the decision to take off her wedding ring after her husband’s death. Like me, she had not done it immediately. But, eventually, she realized she was no longer the person she had been–and that her ring no longer defined or even symbolized who she was. It was time.

Ring of denial

The day Jane died I fully intended to move my ring to my right hand. But I got caught up in the notifications and the paperwork–and besides, I told myself, the ring was too small to fit on my right hand; it would need to be resized first. The truth, of course, was I was not ready to stop being married–I was not ready to be a widower.

She insisted I take them off when she died.

So the ring stayed where it was for the wake and the funeral–I would make the switch at the cemetery when we left the grave. It didn’t happen then either–there had been no time to get the ring resized. At least that is what I told myself. The fact I wore Jane’s wedding ring and engagement ring on a chain around my neck for the next several months tells the emotional state I was in and why my own ring stayed right where it was.

Ring of discovery

The only reason I stopped wearing her rings was I was terrified I would break them. Every time I picked up something heavy it crushed the rings into my chest. They live in my safe deposit box now. I know no one will ever wear them again while I am alive. My executor will have to figure out what to do with them–and the rest of Jane’s jewelry.

…it would need to be resized first.

I thought about taking the ring off on our anniversary, on Jane’s birthday, on the first anniversary of her death. On the third anniversary of her death, I even went so far as to talk with a jeweler about how long it would take to get the ring resized. Periodically, I would wear the ring on my right pinky, where it fit loosely, just to see if I could bear it. Then it fell off in the back of the car when I was putting some plants in. I thought I had lost it–and realized how unprepared I was for that.

The power of numbers

September 2 of last year was our 25th anniversary–the anniversary Jane had always joked we would never get to unless we counted in dog years. I thought, briefly, about making the switch then. But even the month leading up to that date told me what an emotional tsunami the actual day would be. I took a single-serve bottle of champagne to her grave that day. I drank half and poured the rest above where her casket is buried.

 I thought I had lost it…

Fifty-two is an important number for me for many reasons. It is the number of months between death and rebirth in my religious practice. It is the day of the last readings for the dead because on that day one leaves the garden to become a child again in the physical world.

Preparations

An earthly marriage may survive death, but it should not survive rebirth. That thought came to me on Monday when I woke up. Perhaps I dreamed it. Perhaps Jane said it to my soul in the night. But I knew wherever it came from, it was true. It made this week, which I already knew was going to be hard, much harder.

I drank half and poured the rest above where her casket is buried.

On Thursday, I took my ring to the jeweler and left it there. That afternoon, they called me to say my ring was ready. It slid on easily but did not want to come off. I knew then it was the right decision. Eventually, I got it back on my left hand for one final day.

Rebirth Day

Friday was a dismal day of rain and fog and raw cold. I collected three stones from the yard, placed them in the car with the books for the final readings, my walking stick and my prayer shawl. I picked up the flowers I place on her grave each month. I drove to the cemetery.

I took my ring to the jeweler…

In the slow drizzle, I rearranged the Easter flowers, put the new flowers in the cemetery vase I had brought with me, and placed the stones. I donned my shawl and placed my walking stick against the gravestone. I did the formal readings. The pages curled in the dampness.

Ring moment

I set the books aside. I moved my ring from my left ring-finger to my right ring-finger. The drizzle diminished to a mist. I talked with Jane for a few minutes, then left three kisses on the stone above her grave with four “I love you”s.

Friday was a dismal day of rain and fog and raw cold.

As I turned to leave, a sudden wind came up and slid the shawl gently from my shoulders as Jane said good-bye. I laughed then. It was so like Jane. She always lightened even the most solemn or difficult moments.

Aftermath

I came home. I worked on some Walking with Jane things, did some reading, watched Gene Wilder and Richard Pryor in Silver Streak. My left hand feels funny where my wedding ring lived for 25 years, seven months and eight days. My right hand feels funny because of the unaccustomed weight of that ring. Both hands look funny.

I laughed then.

Until yesterday, I was still a husband, for all that Jane was 52 months dead. Today, I am a widower–and the world feels different.

Everyone is different

This is not to say that taking off a wedding ring is a magical act that immediately alleviates grief and ends all the emotional difficulties that go with the death of a loved one. I’ve had to stop several times in writing this because I could no longer see the keyboard or the screen through the tears. I’ve had to stop other times because the emotions became too strong for words.

…yesterday, I was still a husband.

I know several people who have worn their wedding rings far longer than I have and have accepted their widowhood in ways I still haven’t. For me, this morning, I see my refusal to move my ring as the symbolic denial of Jane’s death that it was. But my life is defined by symbols. I imbue things with symbolic power far beyond human norms. Not everyone does that.

Emotions and me

For most people, I think, a ring is a ring and a grave is a grave. For me, Jane’s grave is an anchor for my grief. That anchor allows me to function more or less normally in the outside world. When grief threatens to overwhelm me, I can go there in my mind. And when I stand there I can let myself feel the torrent of its soul-shattering force without being shattered by it. Like the Japanese characters in Shogun, Jane’s grave became, for a time, a box I could place my grief in when a situation demanded my focussed attention.

…my life is defined by symbols.

I don’t deal well with strong emotions, either in myself or others. But I am a very emotional person. I can either find a way to control the release of my emotions or give them full sway and let them destroy me and everyone and everything around me. The result is that I can come across, on first encounter, as cold and distant–almost heartless. Eventually, people begin to understand that cool logic is a coping strategy that makes it possible for me to function.

The power of symbols

I surround myself with symbols. In fact, nothing that remains in my life, other than people, escapes evolution into some kind of archetypal symbol with its own purpose. A hat and coat are more than mere protections against sun or cold. My dress coat, for example, is a representation of Jane and my grandfather, both of whom protected me from cold far worse than any winter wind can conjure. When I put it on, I feel their arms embracing me with a different kind of warmth.

…that cool logic is a coping strategy…

Each plant, each wreath, has a story and a meaning. Its placement in the room or on the door has a purpose that goes beyond the decorative. Giving away even the least used of Jane’s clothes was difficult because each was a part of her story–and of our story together.

A circle of gold

But a blouse, a plant, a piece of furniture, is not a wedding ring. Over the course of our marriage, my wedding ring never left the finger Jane put it on. Until the morning of her heart surgery, when she had to take it off against the possibility of her hand swelling, Jane’s had never left her finger either. She insisted no one but me would ever take it off–and that morning, I did.

Each plant, each wreath, has a story and a meaning.

My ring is a simple circle of gold. There is nothing physically fancy or remarkable about it. But Jane put it on my finger, just as I had put hers on her finger. Only she should have taken it off my finger. In her absence, it took me 52 months to figure out how and when and why to do so.

If every plant and piece of furniture has both a physical and symbolic purpose, imagine the symbolic power of a simple gold ring worn on the same hand for for 25 years, seven months and eight days.
If every plant and piece of furniture has both a physical and symbolic purpose, imagine the symbolic power of a simple gold ring worn on the same hand for 25 years, seven months and eight days.

Impossible? At 51 months, nothing is

Goals, Grief, Jane, Marketing NETs, Uncategorized

Fever dreams

I had a 101.2F fever ten days ago, on the 51 month anniversary of Jane’s death. For the first time, I was not physically at her grave on the tenth of the month. The flu saw to ending that streak in a way no amount of rain or snow or heat or cold had succeeded in doing.

…we need to work more effectively together.

There is a line in The Who’s Tommy about sickness taking “the mind where minds don’t usually go.” My mind took that journey as fevered day turned into fevered night and fevered day for the better part of a week. I’m not sure what I learned from that reminder of mortality, only that something feels different.

The empty grave

I went to the cemetery Saturday, the first day my fever went below normal for a good portion of the day. It was rainy and raw and I gave myself a small relapse that night as a result, for all that I only stayed long enough to walk from the car to Jane’s stone, leave three kisses there, and walk back to the car. For the first time, the gesture seemed empty and almost silly.

…something feels different.

I had no sense of her presence there for the first time since she died. It felt as though her soul had moved on. Maybe it has. Maybe it is time I started thinking about my life without Jane as something beyond this endless war against NET cancer. Not for the first time did I remember that this is not the life she wanted for me. But it was the first time I thought, “maybe she’s right.”

Mourning and killing

For 51 months I have focussed on just two things: mourning Jane and killing NET cancer. Oh, I’ve redone some rooms and worked on expanding some garden beds; I’ve sorted through Jane’s clothes and possessions and sent them on to others where they could do some good; I’ve travelled to Seattle to visit family; but each of those things has been about mourning and dealing with loss.

…the gesture seemed empty and almost silly.

I’ve done some social things as well. But all of those have either been centered on NET cancer or served as a reminder that Jane is not here and that I am truly alone without her, no matter how many people are around me–and no matter how much they are focussed on me and trying to get me to feel better–to forget, even for a little while, the treasure I have lost.

The first burden

A grief counselor suggested recently that I take too much responsibility on myself–that somehow I make myself responsible for all the ills in the world–and for solving those ills. She’s right. Every time someone dies of NET cancer, I feel responsible for that death. “If only you’d worked a little harder, they wouldn’t be dead–we’d have a cure,” the little voice that imitates Jiminy Cricket mutters in my ear.

…I am truly alone without her…

The rational me knows better, of course. I know precisely how that sense of responsibility was born back when I was a child. It is the burden every eldest child carries–especially those from large families. When a younger sibling did something wrong, even if we were not physically present, it was somehow our fault. We were supposed to set the example–and when they failed it was because the example we set was not good enough.

The second burden

My parents added another layer of responsibility to that. Periodically, my brothers and I would be set some task–cleaning the cellar, mowing the lawn, something long and involved. I would do what seemed my fair share of the job–whatever it was–more quickly than whomever I was working with. But if I stopped there to let them do their share, I was told, in no uncertain terms, that I was to work until the job was finished–even if it meant doing more than the others.

…the little voice that imitates Jiminy Cricket mutters in my ear.

I grew up with the idea, then, that I was responsible for everything–no matter when I started and no matter how much of the job I actually did. I grew up with the idea that I was responsible for everything that happened both in my life and in the lives of everyone around me.

The responsible and the impossible

The result is, I set impossible standards for myself and ridiculous goals for anything I put my hand to. There is no such thing as “good enough.” Anything less than the highest standard I can reach is unacceptable.

…I was to work until the job was finished…

That I have rarely failed to reach whatever goals I have set–no matter how insane they appeared to people in the outside world–has reinforced the idea that nothing is impossible if I can put my mind to it and recruit enough of the right people to make it happen. Arguably, Jane’s death was the first time I had not found a way to outfox what any sane person would see as a no-win scenario. In some respects, the work I have done since on NET cancer could be seen as an effort to correct that failure.

Facing the impossible reality

But I have set myself a seemingly impossible task, especially in the way I have approached it. Just keeping up with the research on NET cancer is a significant time and energy commitment. Translating that new information into laymen’s terms requires another not insignificant amount of time and energy. Getting that information out to people who need it through this website, social media and podcasting, brings just that piece of this work to a 40 hour a week job.

…I was to work until the job was finished…

Fundraising and awareness raising consume similar amounts of time and energy. Record keeping, social media, public relations, team building, grant reviews… There is a reason the American Cancer Society employs the number of people it does–a reason that the household names in cancer funding employ the staffs they do.

Impossible isolation

There are at least a dozen small foundations working on NET cancer. Most are one-or two-person operations established and run by individuals whose lives have been touched–or destroyed–by NET cancer. We are, each of us, determined to bring this beast down. But too much of the time, we are working alone. We are isolated–and that isolation weakens the effect of our efforts.

…I have set myself a seemingly impossible task…

And even the bigger foundations–the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation–are hamstrung in their efforts by the tiny size of their staffs. I know what it takes to organize a conference, do a major mailing, maintain a website… What they do–what all of us do–is nothing short of miraculous.

Creating a new road

But there is an awful lot of weight on a very small number of shoulders. And sometimes it seems like we are all trying to carry the full load by ourselves. We cross-post some things on Facebook, Pinterest and elsewhere. But we don’t seem to talk to each other very much beyond the needs of the moment.

…isolation weakens the effect of our efforts.

I’m probably the worst of us when it comes to that. It was the mistake I made at the beginning–and it is a mistake I have continued to make since. It has left me physically and emotionally exhausted–and when I look at what I wanted Walking with Jane to be and what it has become I know that I cannot continue as I am.

Recruiting stories

Back in January, I wrote a series of pieces on goals for the year ahead. Among those goals was the need to develop closer ties among all the groups engaged in the fight against NET cancer so that we could all do a better job. It is still an item on the to-do list.

…we don’t seem to talk to each other very much…

But we need to do more than simply unite the groups working on this in the US and elsewhere. We need to get patients and caregivers far more involved than they are now in the public relations, fundraising, and awareness sides of this. I tell Jane’s story constantly–and it is a powerful one that rarely fails to grab whatever audience I tell it to and move them to some action.

Coming together

But each patient, each caregiver has a similar story to tell–and they are stories we need to tell–and tell to the broadest audience we can reach.

I tell Jane’s story constantly…

There is a stone on my desk with a quote from Helen Keller etched into its surface: “Alone, we can do so little; together, we can do so much.” We need to stop working in isolation; we need to work more effectively together.

Together, we can do anything--nothing is impossible.
Together, we can do anything–nothing is impossible.

A snow covered grave at 50 months

Death, Grief, Jane

Plodding through the snow

I went to visit Jane’s grave today. To get there, I had to climb over a three-foot high drift the plow left behind when it cleared the narrow road through the cemetery. Then I trudged through the 10-12 inches of powder yesterday’s storm dropped, tramping it down so that others can get to the headstones of their loved ones more easily.  I should have brought a shovel.

…that feels like moving forward.

The snow has reached Jane’s name on her family’s stone.  The snow is actually deeper than that but the wind has hollowed out a space around each grave in that section of the cemetery. It looks strange. The cemetery is at the top of a hill and the wind blows through there at a pretty good clip in the winter. I put some Valentine’s Day decorations on her grave but I didn’t stay too long. It’s been colder there on other days, but on the best of winter days my body won’t stay there long. I can hear both Jane and her mother chiding me for standing out in the cold.

Changing spaces

As these monthly anniversaries go, today was not bad. Last month, I had trouble getting out of bed; every minute of the day was a struggle. I spent yesterday shampooing the rug in the dining room and hall. This morning, I moved the plants and furniture back in place and decided I still don’t have the living room set up in a way that works.

 I should have brought a shovel.

Truth be told, the way Jane and I had it set up originally was just about perfect. Unfortunately, I discovered very early on that I couldn’t live with it set up that way after Jane died. In fact, I’ve redone every room in the house in terms of how the furniture is arranged–and in some cases have changed the purpose of the room as well. What was our study is now my bedroom. The room Jane used for her crafts is now a combination library and home office. The bedroom has become a TV room that doubles as a guest room and a place to keep Walking with Jane items we use for various events.

Mixing pasts, presents and futures

And I’ve been gradually repainting all the rooms in the house, changing the colors from the careful neutrals Jane and I chose when we built the house to warmer, darker tones. It’s not that I am trying to expunge her presence–I have photographs of Jane scattered throughout the house, as well as her cross-stitch and other craft projects.

…I’ve redone every room in the house…

The houseplants we both loved still dominate the living room and dining room as they always have, though I have rearranged them as they’ve grown. And though I’ve replaced the mattress in the bedroom, all the furniture we bought when we first married is still part of my bedroom–and I still sleep in our bed every night, though never on her side of the bed.

Different people, different responses

I know people whose houses have not changed in any way since their spouse died. I know others who sleep on a couch or in a chair at night because they cannot face sleeping in the bed they once shared with their husband or wife. I know others who gave away every stick of furniture they had purchased together because living with those constant reminders was more than they could handle.

…I still sleep in our bed every night…

I know people who sold their house for much the same reason–and others who were forced to sell because with a single income they could not afford to live there no matter how much they wanted to hold onto those memories. There is no magic formula to dealing with grief–no right answer. There is only the answer that works for you—-and that answer is different for every person who grieves.

Moving  thoughts

There are times I think about moving. This house and its yard are too big for me to handle by myself sometimes. And it has too many stairs for me to deal with when I get old. But we spread the soil on this land, planted the grass and the shrubs and the trees. We installed the suspended ceiling in the basement and hung the sheet rock on its walls. We spent hours looking at chandeliers and light fixtures and deciding on countertops and cabinets. I am not ready to abandon those memories–and I am not sure I ever will be.

…that answer is different for every person who grieves.

But I can’t live in some kind of unchanging shrine either–a place where everything is precisely as Jane left it. I want my memories but I don’t want to be overwhelmed by them every day. For fifty months now I’ve tried to reestablish a sense of balance in all areas of my life. Part of me thinks I haven’t been very successful at that. But then I realize that Jane and I spent 23 years together, growing closer and closer every day until, at the end, we truly were Aristotle’s single soul in two bodies.

Questions of balance

And then she was gone–and everything was different. Fifty months is no time at all compared to the years we spent together as a singular entity. We made every decision together, did every chore together–lived our lives as together as two people can be. When Jane died, I suddenly did not know who I was anymore. I’m still trying to figure that out.

I am not ready to abandon those memories…

But change is the nature of life. The carpet and linoleum are beginning to show their age. I replaced the faucets in the bathroom and the kitchen over the last year. I’ve expanded the vegetable garden and enlarged a flower bed. I reworked the sitting area under our deck, digging out the sod and replacing it with stone. I’m thinking about setting up a bee hive, planting some fruit trees and creating a large bed of wild flowers.

Moving forward vs. moving on

People talk about moving on after someone dies. The truth is, often we don’t move on. The further I get from Jane’s death, the more I am convinced I will not “get over it” in the way that most people mean that phrase. But we can move forward–which is very different from “moving on” or “getting over it.” In fact, we have very little choice about moving forward. Life forces us to do that by its very nature.

Fifty months is no time at all…

Faucets do wear out. Lawns do have to be mowed. Driveways do have to be resealed. Our bodies do have to be fed and cared for. We have to cook and clean and do the routine little things that in the depth of grief we do not want to do–but that we do anyway.

Moving through the snows of grief

My muscles ache tonight. I’ve moved over four feet of snow in the last two weeks. I’ve moved every plant and piece of furniture in the living room and dining room at least twice in the last two days. I’ve run the rug machine until my arms hurt and my hands have blistered. There is more snow in the forecast for Thursday and again for Sunday.

The truth is, often we don’t move on.

But for now, the snow is shoveled and half the living room looks and feels right to me. For 50 months after Jane died, that feels like moving forward.

Snow shoveling and rearranging furniture may have helped me get through the 50 month anniversary of Jane's death today.
Snow shoveling and rearranging furniture may have helped me get through the 50 month anniversary of Jane’s death today.

 

 

Hell in a cold winter

Boston Marathon Jimmy Fund Walk, Grief, Uncategorized

Why, this is Hell

I learned something important over the last two weeks. While I am not constantly aware of the pain Jane’s death has caused me, I am in no way fully recovered from that event despite nearly 50 months having gone by. I can pretend, sometimes for weeks at a time, that I am back to a state of normalcy. But that is an illusion–or worse, a lie I convince myself of.

 It’s the only thing that keeps me sane.

Two weeks ago, I had the latest in an ongoing round of oral surgeries. I followed the surgeon’s post-operative directions flawlessly. I iced the site of the latest wound the way one is supposed to, avoided the nuts and crispy foods, outlawed juice, tomato sauce and all the other acidic foods I like, gave up the heavy lifting of my constant training. I spent four days largely confined to the house we built, reading novels to take myself out of the world.

Staving off Hell

It wasn’t enough. No matter how effectively the books populated my mind with other people, when I came out to eat or sleep, I was still alone–am still alone. I posted to my online grief group, trying to stay positive. But words on a screen are useless when what I really need is Jane’s physical presence–her voice–even the sound of her breathing.

I spent four days largely confined to the house…

Then it began to snow. Neither of us liked to shovel snow, but we made a game of it. Jane would start at the garage end; I would go down to the street where the plow had left a drift. We would set to work. Sometimes we pretended we were working on the tunnel between England and France. Other times, it was the transcontinental railway. When we came together somewhere in the middle, we would hug and kiss as though we had been separated for days in celebration of the breakthrough. When we were done, we would come upstairs for hot cocoa, then sit on the couch–her feet buried under my legs to warm them up.

The Ice Hell

Now, I wheel out the snow blower I bought after Jane’s death. There is no romance or fantasy involved in the task. To be truthful, I try to avoid thinking of anything beyond guiding the machine down the driveway. I fail at doing so, miserably. There are too many memories and they flood into me like the Red Sea on the Egyptians.

Then it began to snow.

The days have been cold–far colder than normal–the last two weeks. That, too, isolates me. A group of us has a monthly lunch date. But many of the retired teachers in that group are elderly. They don’t do well with the cold. This month’s gathering was cancelled as a result. I didn’t realize how much I was looking forward to the event until I got the call it was not going to happen.

Presentation Hell

And then there was Friday. A group of student councils from area high schools was having a conference. I’d been asked to set up a table and do a series of short presentations for Walking with Jane in hopes of getting some of the schools interested in doing fundraisers for the Marathon Walk. I told Jane’s story seven times over the course of about three-and-a-half hours.

…they flood into me like the Red Sea on the Egyptians.

I taught high school for 34 years. Every class was a high wire act. As Jane said one time, even if you were teaching the same thing five times over the course of the day, the last group deserved as much energy and focus as the first one got. You had to do every show as though it were the first time you’d said it. Great stage actors, great stand-up comics have to have that same attitude.

Hell on stage

So that’s what I did Friday night with the most wrenching material any teacher, actor or comic ever presented. There’s no way to insulate oneself from that much raw emotion–that much reliving of the horror of watching the person you love most die before your eyes. It comes at a steep cost–but I pay it. NET cancer doesn’t die if people don’t tell their stories–and I want it to die more than I want to live most days.

And then there was Friday.

I understand why people don’t do what I do. I understand why people bury the dead not just physically, but also mentally and emotionally as well. I know why many men remarry within a couple of years of losing their spouse–and why many women, given the chance, do so as well. We want to find some way to mask the pain–to bury it any way that we can. Grief is Hell.

Edwards’ Hell

I used to teach Jonathan Edwards’ “Sinners in the Hands of an Angry God.” I tried to explain his vision of Hell this way: Have you ever scalded yourself with really hot–literally boiling–water? That pain you feel, right at the outset, before your brain intervenes or the nerves die–that is the beginning of Hell. Now, imagine that initial pain never lessens, never eases in any way–but goes on and on forever at that same intensity–and you never, in any way, get used to that scalding initial pain. That is the Hell of Jonathan Edwards.

Grief is Hell.

Sometimes, I think that is what real grief is like. It never truly ends. But, unlike Edwards’ Hell, it ebbs and flows. And somehow, that makes it worse. We get the illusion that we are getting better. We begin to hope that, finally, we are going to stop hurting–that our lives are going to be more than coping with the pain and that we will be able to truly live again.

Hell in the grocery store

And then we are walking through a store and see a can of a particular soup on the shelf–maybe so briefly we do not even know we have seen it–and the pain comes roaring back in, overthrowing every coping strategy and barrier we think we have in place.

And somehow, that makes it worse.

My problem is that because of what I am trying to do–put an end to this foul cancer–I purposely set off those triggers constantly. Every article I read, every piece I write, every talk I give puts me in contact with the raw emotions I felt the day Jane was diagnosed–and every day thereafter until we buried her.

Marley’s Hell

That makes me a stupid fool who insists on putting his hand in the flames every day because maybe the evidence of the last 100 times is wrong–maybe today it won’t hurt. And maybe today I will tell that story to the right person who will have the right skill set to eventually kill NET cancer. But probably not.

…and the pain comes roaring back in…

We can’t stop NET cancer from killing those 34 people who will die of it today. We can’t stop NET cancer from killing the 34 people it will kill tomorrow or the next day or the day after. Nothing we can do will bring Jane back to me–or bring anyone else’s loved ones back to them. Those are all truths, and we have to live with them.

Ending Hell

But our actions today can make a difference for others on down the line. There are thousands–maybe millions–of people out there who have NET cancer and don’t know they have it. They have husbands, wives, fathers, mothers, children, loved ones who will feel this pain someday if we do nothing.

…maybe today it won’t hurt.

So I made a choice. If increasing my pain means that somewhere someone in the future doesn’t have to feel what I feel now, then that is a trade I am willing to make–even if it means I lose a week periodically to recover. It’s the only thing that keeps me sane.

I look like Hell in this picture likely because I seem to live in Hell these days. But I was at a conference for student council members from the region to talk about Walking with Jane.
I look like Hell in this picture likely because I seem to live in Hell these days. But I was at a conference for student council members from the region to talk about Walking with Jane.

 

How long it takes to grow a new heart

Death, Grief, Jane

The topiary heart

Jane and I loved house plants in the winter. They brightened things. Jane got into creating topiaries at one point and created a heart from an old coat hanger and an English ivy. When Jane was in the hospital, I rarely got home, but when I did I made sure everything got a good drink. When I came home after she died, we had lost just one of the plants–the topiary heart. The symbolism was not lost on me.

…I have learned, again…to let the dying go.

But in another pot there was a single tiny sprig of ivy that had survived. I took the heart frame and moved it into that pot. I have tended it carefully since then. Forty-nine months after Jane’s death that single strand has grown to cover 4/5s of that frame. It is not as dense as it was when Jane was alive–that will take a couple of circuits–but it has nearly filled the frame.

The real heart

I tell myself my heart will finally be healed, perhaps, when that frame is filled again with green life. A couple more sprigs have appeared in that pot. Eventually, they will grow long enough to join that first strand and strengthen that heart.

The symbolism was not lost on me.

Not long before Jane’s cancer came to light, I was reading a story about the Dragonriders of Pern. One of the Riders loses his dragon and the children ask why he is so sad. They are told that if a man or woman loses their dragon they lose half their heart. One of the children tasks how long it takes for the missing piece of heart to grow back. None of the adults have an answer.

The power of symbol

When Jane died, I suddenly knew what it was to have only half a heart–and I had no idea how long it would take for that piece of my heart to grow back–or if it would do so at all. That silly topiary tells me each day how to regrow my heart–and reminds me every day that it is possible. It takes patience and careful tending–but it can be done.

None of the adults have an answer.

I don’t expect ever to love again in the way that I loved Jane. But I know that, some day, my heart will be fully healed. It will not be the same as it was before. There will be scar tissue there that is never quite right. A part of me is dead and beyond recovery. But I will grow strong again and I will love again. Truth be told, I have never stopped loving–even in the worst hours of grief. I will love Jane until I die–and even then I will still love her.

Lessons of love and death

And I will love the world and every creature in it–because I always have. The pain of loss makes us forget our true nature at times–but forgetting does not mean that nature vanishes or ceases to be. When we are born, the agony of birth makes us forget where we came from. But that pain does not leave us empty of who we are, nor does it change where we came from or where we will go.

A part of me is dead and beyond recovery.

Jane’s death cost me a great deal. It has taxed me physically, mentally and emotionally to the limits of my strength–and sometimes it has seemed like beyond that. And it still hurts–hurts more than anyone who has not had a similar loss can know. But it has made me a better man than I was. It has made me more compassionate, more patient and more driven to be of help than I was before. I understand now things that I really only knew in theory before–as much as I truly believed I understood them.

The price of a new heart

We each have a road to walk and things to endure. We learn from every thing and every being we encounter–and from every experience. Jane paid a hideous price for the knowledge she gained from her illness–and I have paid a hideous price for what I learned from losing her and what I have faced every day since. I cannot dishonor her sacrifice or my own by turning my back on what I have learned–or by failing to share those things with those who need that knowledge.

Jane’s death cost me a great deal.

I have learned what it takes to love those around you when what you really want to do is hate them for the things they still have that you do not–and that you will never likely have again. I have learned what it takes to hold a broken soul in your hands and will it back to life and health. And I have learned, again, in Ursula K. Le Guin’s words, to let the dying go. Most importantly, I have learned what it is–and what it takes–to grow a new heart.

Rebuilding even a topiary heart does not happen overnight. Four years after I restarted the heart jane once made, that project is still not finished. But it mirrors the progress of my own efforts to grow a new heart.
Rebuilding even a topiary heart does not happen overnight. Four years after I restarted the heart Jane once made, that project is still not finished. But it mirrors the progress of my own efforts to grow a new heart.

Starting points for grief work

Death, Grief, Holidays

Editor’s Note: I posted this a couple of places last week. I am seeing a number of people having real trouble tonight on New Year’s Eve. I won’t take the time to dress this up or paste in a lot of links. The one most people will need is for the online grief group I am part of. 

Jane died 15 days before Christmas in 2010. We buried her a week before Christmas. That first Christmas was nightmarish. I spent it with my father outside Seattle. He’d lost my mother to Alzheimer’s 10 months before. It was our first Christmas for both of us without our other halves.

My father had a stroke in August. He was brain-dead before my plane took off and body dead before it landed.

This year was my fifth Christmas without Jane–and the first I spent in the house Jane and I built together. I went out to be with friends Christmas Eve and went to a Methodist church service. I knew those things were purely to get me out of the house for a few hours that night. Neither Jane nor I were particularly religious in any traditional sense.

The next day, I had my in-laws in for Christmas dinner. I surprised them with a couple of presents. They left about 3 p.m. Jane’s father was released from a rehab facility the day before. He has prostate cancer that has metastasized to his bones. He tires easily.

I watched “It’s a Wonderful Life” Christmas night and sat for a time in the glow of the Christmas tree. Jane made me promise I would always have a tree–even that first year. Gradually, I have dressed the house for Christmas more and more since then. It is hard to do, sometimes, but I do it anyway.

For many of you here, your losses are fresh. You are trying to adapt yourself to the most horrible losses imaginable–and there is no easy way to get there. Holidays can be the worst because they have so many memories and triggers built into them. But sometimes the “ordinary” days can be just as difficult.

I am not a grief counselor but I have been at this for a very long time. I’ve listened to a lot of folks who understand this state far better than I do. They have been certified as grief counselors as well as going through their own grief. And I remember well what they told me in the early days after Jane’s death.

First, it is OK to cry and feel miserable–and to feel that way for a very long time. People talk about the “Year of Firsts” as though once you’ve been through each of the events in a 12 month cycle you are magically OK–that you are back to who you were. For some folks, this is the case. But for most–especially if you had a good relationship with your loved one–it doesn’t work that way.

You are never going to be who you were before they got sick. You’ve lost a major part of the life you had and of the person you were together. “The deeper the love, the deeper the grief,” is the reality. When someone says to you that you should be over your grief by such-and-such a time, they are generally people who have not lost someone important to them in the way your spouse was important to you. They’ve read an article or a book or taken a course and think they understand. Most of the time, they really have no idea.

But while you are never going to be the same, that does not mean you will never be happy again. Right after Jane died I didn’t think I would ever smile again, let alone laugh. But the smiles did come back–as did the laughter. I am never as happy as I was when she was alive–but the grinding sorrow and depression have lifted to a great enough extent that I feel alive again. The holidays–Christmas, Halloween, her birthday and our anniversary in particular–remain especially difficult, but I no longer feel I am drowning most of the time.

You do get better at coping as the months and years pass.

You can speed that up in several ways. Not fighting with your feelings and trying to control them is the first step in that. Grief often comes in waves and all any of can really do is ride them out. Fighting your grief is like fighting the undertow: fighting it will just make things worse. Let yourself have that good cry when you need to. You will feel better afterward.

Crying, of course, is more dehydrating than people realize. It is important that you drink plenty of water–especially in the first months when the tears are falling like a torrential downpour. Avoid alcohol, however. It is a depressant and will only make you feel worse. I didn’t have so much as a beer in the first 14 months after Jane died. Even now, I drink alcohol sparingly.

Crying also burns huge amounts of energy. That means eating properly is important. Unfortunately most of us bury ourselves in comfort foods when we are stressed or–worse–eat nothing at all. You want to establish good eating habits as quickly as possible. Have a good breakfast, a good lunch, and a good dinner every day. Begin cooking for yourself as soon as possible–even if you are cooking only for yourself and hate every minute of it. It will give you better portion control and make you feel like you have regained control over at least one aspect of your life.

Gaining control over your life is an important thing. Grief makes us feel like everything is out of control. Start small in regaining control. When you get up in the morning, make the bed, pick up the bedroom, take a shower, shave and have breakfast. Little acts of control like this are the beginning of regaining control over your life. The sooner you begin to establish regular habits, the better it will be for your state of mind.

One of the toughest patterns to re-establish is regular sleep habits. I’m still wrestling with that four years out. You don’t want to go to bed because if you do, you have dreams. You don’t want to get out of bed, sometimes because of the dreams and sometimes because of the corrosive reality that awaits you. But I set the alarm every night and try to get up at the same time every morning. And I try to go to bed the same time every night. The former is easier than the latter–at least for me.

Get exercise regularly. It doesn’t need to be strenuous. I try to walk for an hour every day. In bad weather, I drive to a local mall and walk there. In good weather, I go out my front door and walk through the neighborhood. Exercise releases endorphins into your bloodstream that make you feel better. Even a half hour walk gets them cooking through your system. Do see your doctor before you undertake any kind of new exercise program.

Join a grief group. Your local newspaper will have listings for groups in your area–as will your local hospice organization. Many hospitals and cancer facilities sponsor groups. Just talking with other people who are going through what you are going through can be very helpful. There are a number of groups available online as well, though there is nothing like being in a physical group where you can receive and give hugs. Online groups, however, are especially good when a huge wave of grief hits you at 2 a.m.

For me, one of the toughest things was the social loss. Jane was not just my wife, she was also my best friend. We did everything together. I try to have at least one social event every week–even if it is just going out for coffee with someone. I do lots of volunteer work, in part, for the same reason. Much of my work is cancer-related, so it really does double-duty. I am avenging Jane’s death and getting some human contact at the same time. I didn’t think about the social aspect of that work when I started doing it, but the social aspect does help me get through the rough patches.

One of the problems we all face is that the grief really gets worse just about the time everyone around us has gone back to their daily routines. Their lives get back to normal just about the time the shock wears off for us and we enter the real heart of our loss. Finding something to do to help others can provide us with social outlets beyond our traditional circle of friends.

Another thing I find helpful is writing. Sometimes I write for no greater purpose than to move my grief from inside me onto the page. Keeping a journal can be a good way of doing that. You can write things there you don’t want others to hear or see. You can rage against the gods, the doctors, the insensitive person who asks three months in if you are going out with anyone yet….

That’s another thing you are going to encounter. Sometimes people can be so insensitive you can’t stand it. Most of the time that insensitivity comes from their ignorance. Most people see TV and film as reality. There, grief is over in an hour or two. It just doesn’t work that way for most of us.

There are others who try to compare this loss to a divorce. One of my brothers did that to me barely a month after Jane died. He’d had a divorce many years before. He did not see why I was not already out there dating. He didn’t understand that while he and his wife stopped loving each other, Jane and I hadn’t. That alone makes the situation different. But people don’t see that.

In fact, rushing into another relationship is frequently a bad thing. You are wounded and vulnerable and incapable of making a rational decision about financial matters, let alone emotional ones. I swore off making major financial decisions for a year after Jane died–a vow that has lasted until at least now as I write this, with the exceptions of getting my will written and committing as much as I can toward NET cancer research.

I’ll also admit to having had a number of crushes in the last two years. I have acted on none of these because I still feel emotionally too fragile to do so. After four years and 19 days, I’m still wearing the wedding ring Jane put on my finger 25 years, three months and 27 days ago.

I hope those of you who are relatively new to grief will find what I’ve written above useful. Grief is not a sprint. It is a marathon–or maybe an ultra-marathon. But there is no finish line and there are no prizes for those who finish first. And unlike a competitive race, we can help each other get through it.

Christmas Letter from Walking with Jane

Boston Marathon Jimmy Fund Walk, Grief, Marketing NETs, NET Cancer Awareness Day/Month, NETwalkers Alliance

A too familiar stair

Dante finds himself contemplating life and loss at the beginning of the Divine Comedy. A bit more than two weeks ago, I found myself in a similar space. I had started my own epic, a book on grief that will eventually, if I can bring myself to finish it, help to fund both a cure for the carcinoid/NETs that took my wife from me and an online grief group that has helped me try to survive that loss. I have the first five chapters drafted–but each has exacted a steep emotional price as I journey again through the last months of Jane’s life and the early days following it.

…have a wonderful holiday…

Those emotions have been further exacerbated and complicated by the events of this past year. In August, I lost my father to a massive stroke. He was dead before my plane reached Seattle. Like me, he was a widower. My mother died of Alzheimer’s barely 10 months before Jane’s fight with NET cancer led to her death. My father and I spent that first Christmas–and all the Christmases since–together. We talked about my mother and Jane and about what we both were feeling. It was a peculiar thing to hear my father talk about how he felt. He was not one easily given to sharing his feelings.

A year of death and disease

This Christmas, I will not travel out west for the holidays. My father-in-law was diagnosed just six weeks ago with prostate cancer that has already metastasized to his bones. He will return home on Christmas Eve from a month in rehab and treatment. I cannot leave him and his surviving daughter to face this Christmas–perhaps his last–alone. My brothers and sisters will have each other this Christmas. My in-laws need me here more than I need to be in the west.

He was dead before my plane reached Seattle.

But I will miss those hours with my father. There would be much for us to mull over. Just days before his death, one of my nieces died from a disease she had fought since her teens. I can find no reason in it. Early in the year, I lost one of my oldest friends to breast cancer. Another lost her mother to Parkinson’s. Three friends lost their father to colon cancer. Another friend’s wife was diagnosed with breast cancer and is in treatment. My cousin spent much of the first half of the year fighting uterine cancer. In fact, not a month has gone by this year without either a cancer diagnosis or a death.

Intimations of mortality

Thirteen days ago was the fourth anniversary of Jane’s death. The lead-in to that date was more difficult than I expected. There were days it felt as though she had just died. Part of that was working on the book. But a major part of it was how empty everything seems without her. I can go to a play, listen to music, watch a film, bake bread–do nearly anything–but there is no Jane to share in the small victories or pleasures of life. It is all dust and ashes in my soul. I am tired.

I will miss those hours with my father.

I am reminded of mortality at every turn. Even my own body reminds me of that, though not so horribly. I have had gum surgery on every quadrant of my mouth this year and face more surgery there in the year ahead. Just weeks before the Boston Marathon Jimmy Fund Walk my right knee, which has often given me twinges, gave me pain serious enough that I cut my distance to 13.1 miles instead of the usual 26.2. I’ve only begun walking on it seriously within the last two weeks and, while it still gives me a twinge once in a while, it is healing nicely. Unfortunately, the months of enforced inactivity have put 12 pounds on that I had hoped I’d said good-bye to permanently.

While much is taken, much remains

But I would not have anyone believe that everything has gone darkly this year. Walking with Jane has begun to gather the momentum necessary for flight at long last. Since April, this website has been viewed over 1000 times a month every month except one–and it came close. And every one of those months has been the best of its kind ever in terms of traffic. In November, we had our first 3000 view month.

I am reminded of mortality at every turn.

In April, our Marathon Walk team combined with Kulke’s Krew to form one large team. When the dust settled in September, Caring for Carcinoid/Walking with Jane, Hank and Anne had 48 walkers, eight of whom achieved Pacesetter status. Total, we raised nearly $70,000 for NET cancer research at the Dana-Farber Cancer Institute. That total put us in the top 20 teams–and eclipsed the total of our separate teams the year before by about $10,000. I personally raised nearly $17,000–a personal best for me, as well, that should put me in the top 20 for individuals.

Raising the bar

Our goals for that event for next year are even bigger–and walk organizers at the Jimmy Fund are doing all they can to help us. They have granted us permission to use the Jimmy Fund Walk logos on a stand-alone Facebook Page–the first of its kind to be allowed to do so–for our renamed NETwalkers Alliance team, and are arranging for us to meet with some of the more successful longterm teams to learn from them what they have done to build and maintain success. We will be the official team of the Program in Neuroendocrine and Carcinoid Tumors at DFCI. Both Drs. Matt Kulke and Jennifer Chan, as well as members of the research and support teams for the program walked with us this year.

That total put us in the top 20 teams…

I was reappointed to the Visiting Committee for Gastrointestinal Cancers at DFCI this year. We heard from former NBC News anchor Tom Brokaw at this year’s dinner. Brokaw was treated for multiple myeloma last year and, while he looks frail still from the treatment, still has that signature voice, as well as the ability to see the larger patterns in world events. He spoke eloquently for about 20 minutes without a script or even notes, weaving his cancer journey into world events and new and old scientific discoveries.

Promising discoveries

We also got a look at the meeting at some truly promising developments both on the general cancer and NET cancer fronts. Two items stood out in particular. The first is the discovery of some markers that may eventually make detecting pancreatic cancer earlier possible. The second was progress in the use of immunotherapy on cancer.

Our goals for that event for next year are even bigger…

The second is of particular importance to NET cancer patients as at least one Phase III trial of immunotherapy is scheduled to start in 2015 for carcinoid/NETs. That trial is funded by the Caring for Carcinoid Foundation, which has launched a million dollar matching program for that effort. If you want to make a contribution to that effort, you can do that here.

Moving the needle

Our Greater Fall River Relay for Life effort continued to grow this year, as well. Our team broke the $9000 barrier for the first time this year. While I have had to step away from the planning committee for the full event because of the increasing demands of our work on NET cancer, we remain committed to helping find cures for all forms of cancer–and for supporting cancer patients as they struggle with the disease.

The second is of particular importance to NET cancer patients…

Our fifth Walking with Jane Scholar was named at Westport High School in June. That scholarship gives a student interested in pursuing a career in either medicine or science education selected by the science department at WHS $1000 every year for four years while they work on their undergraduate degree. We also gave our second and third scholarships at Bridgewater State University, Jane’s alma mater. Those are one year $1000 grants for students selected by the university.

Original vision and current reality

This fall, we received final recognition from the IRS as a 501 (c)(3) charitable organization. That recognition is retroactive to our incorporation in May of 2012. I cannot tell you how pleased I am to have that piece out of the way.

Our fifth Walking with Jane Scholar was named…

But I had a very different vision of how all this was going to work in the spring of 2011. I thought then we would be raising a lot more money directly than we are. Instead, we are inspiring other people with far greater resources to step up and make donations to groups working on this fight other than us. Since Jane’s diagnosis there has been a steady increase in funding for NET cancer. Today, three times as much money is raised and spent on NET cancer as was in 2010. People tell me that we are, in part, responsible for that. I will take them at their word for that.

Moving forward

My vision has become increasingly decentralized and more regional. This fall, I wrote extensively on a marketing strategy for NET cancer so that we can raise not only more money for research but also to raise public awareness about the disease. I hope the model I proposed at the end can be used to increase both those things.

…we are inspiring other people with far greater resources…

Whether it will or not, remains to be seen. But the NET cancer community can rest assured that we will not stop trying to move things forward against this monster while life endures. I remain as determined as ever to be able to stand at my wife’s grave to tell her her disease is dead ands will not kill another human being again.

Final words

But I am also very aware that this is not a fight any of us can win on our own. We’ve had a lot of help the last four years from people all over the country–and I hope we have been equally helpful to them. Thank you to all of you who work in this vineyard. May the year ahead bring us the cure we all seek.

…to be able to stand at my wife’s grave…

And I am also very aware that I need to take periodic breaks if I am going to continue doing what I am doing. While I know I had promised a series on immunotherapy this month, it is increasingly clear that is unlikely to happen before January. I will likely write one more piece before New Year’s, but for the next few days I am going to try to get some rest and spend some time thinking about things other than cancer.

And I heard him exclaim…

I hope all of you have a wonderful holiday, whichever of them you celebrate, and that your new year is filled with new hope, improved health and reduced christmas stress.

Thank you to all of you…

Happy Christmas to all, and to all a good night.

Pax et lux,

Harry Proudfoot

Patients, caregivers, researchers, widows and widowers and children all walked with our team this year.
Patients, caregivers, researchers, widows and widowers and children all walked with our team this year. Merry Christmas to all of you who worked this year to end this scourge.