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Of dark caves, deserts, and oases

A friend of mine endured the second anniversary of her husband’s death yesterday. In his memory she posted this poem by W.S. Merwin:

Your absence has gone through me
Like thread through a needle.
Everything I do is stitched with its color.

My friend likens this part of her grief to living in a cave–she can see nothing in its dark. She embraces her grief, knowing the only way out is through.

I wrote back to her:

May the sunrise begin for you today–

and may your dark cave be revealed

as a beautiful garden

in the building light.

For me, there are times since Jane’s death that I live in a similar cave. The darkness and the silence close in and the house seems like a tomb. But most of the time, life seems like a long journey across a trackless desert. The oases are few but do seem to show up when I need them. Lately, it has been a long time between.

The sun was out this morning when I started my walk. Friday, I have promised myself a trip to Bridgewater State to take part in their Relay For Life. A former student has put together a Walking with Jane team for that event. And on Sunday, I have promised to do the MS Walk in Dartmouth with some other former students. That afternoon, I am supposed to take part in a Bowl-a-Thon another Fall River Relay team is hosting in Somerset.

Then, the first Sunday in May, I have the 20 miles of the Walk for Hunger to look forward to in Boston and a 5K run a week or two later for the Tripp Scholarship Fund.

Thinking about all that, I decided to increase the distance of this morning’s hike by a little and increase the pace as well. I managed the 4.5 miles in just about an hour, but I was more tired than I would have liked when I finished.

As I made the turn onto the last long straightaway,  I realized the sun was no longer out–that somewhere in that hour the rain clouds they had said this morning were coming had, in fact arrived. And as I reached the entrance to my street, raindrops began to pock the ground with little measles of dampness.

I have always liked walking in the rain. I pulled my knit watch cap off my head and  looked forward to the soft onset of the shower.

It never happened. I reached the house. I walked around the yard. Still the rain held off.

I went into the house and up the stairs. I stripped off my exercise togs and turned on the water.

When I came out to the living room afterwards the street was slick with rain.

The oasis was a mirage.

The past was better?

“You should know better,” I can hear Jane whispering in my ear. “You can’t argue with people whose minds are already made up. When they discover they can’t argue with your evidence, they’ll call you names, tell you they could defeat your evidence and logic but that it would take too long.”

And she would be right.

But I care too much about kids’ lives to let the know-nothings beat up on public schools and the people who teach in them. We both did. So I argued.

I don’t understand why people care only about themselves and their immediate offspring. I don’t understand how people can care only about the current moment and not the future. I don’t understand how people can think that what was good enough 30 years ago is good enough now.

I like hammers, but I’d rather use a nail gun if I have need of more than a few nails. I can use a screwdriver, but again, there is nothing like a power-driver if you have a lot to do.

Imagine it is 1982. Imagine you have just been diagnosed with breast cancer. It’s Stage III. You’d best be getting your affairs in order. Your chances of survival are that bad. In fact, be diagnosed with anything other than basal cell skin cancer and your prognosis is not good.

I lost a friend to lung cancer that year. They sent him home to die. There was not much they could do for him where we were beyond that. They gave him morphine for the pain, but when he died there were gouge marks on the wooden arm of the chair he practically lived in.

But let’s stop the clock right there. Let’s forget about unraveling human DNA. Let’s forget about personalized care. Let’s forget about mammograms on machines as good as we have today. Let’s forget about lumpectomies–radical mastectomies were good enough for Granny, so they’re good enough for today.

We all have fantasies about how things were in the 1960s, 1970s, 1980s. They seem like simpler times–and in many ways, they were. But I cannot forget the nightmares during and after the Cuban Missile Crisis. I cannot forget the friends who went to Vietnam and, either literally or figuratively, never came back. I cannot forget the fathers and mothers who wasted away in front of their adolescent children from this form of cancer or that which we could cure today.

This weekend, I learned that a former student was recently diagnosed with Hodgkin’s Lymphoma. He is maybe 21 years old. He has a tough road ahead of him. But 40 years ago, there was only a road to death. I’d be saying good-bye to him rather than offering to drive him to Boston for treatment.

The next time someone tries telling you the old days were good enough, ask them if they’d give up the strides we’ve made in cancer treatments. Of course they’ll tell you that is different. But is it really?

NET shows us what happens when the past was good enough. For four decades, there was no government spending on it–and precious little private spending. My wife died because of that. There are thousands more who have die–and who will die–because of that.

Defining Leadership from a Hospital Bed

Leadership is not about doing what is comfortable or easy. It is not about doing what everyone else is doing just because they are doing it. Leadership is about doing the right thing–even when it makes you uncomfortable, even when it is difficult, and even if the people around you revile you for doing so.

Leadership is never about manipulation of either people or the facts–no matter  how right you think your position is. Leadership is about following the evidence, wherever it takes you–even when it takes you somewhere you do not want to go.

Leadership is about saying the hard thing to people who want easy. It is about telling people the truth, even when a lie would serve you personally better.

Leaders inspire people to be better than they think they can be–to follow their better natures rather than their darker ones. Leaders turn our best dreams into visions–and visions into reality. Leaders do more than promise–they deliver.

Leaders do not manage problems–they solve them.

And when they succeed they do not claim the credit–they give the credit to the people who produced that success.

Jane was, in her classroom and in our school, that kind of leader. She was never a department chairman or administrator–but her standards set the tone for her students not only in her classroom but in every classroom they entered. She never told her students something was going to be easy when it wasn’t, but she always showed them how to succeed–and then made sure they worked to do so.

Her students learned chemistry and physics and biology. But they also learned to study and to learn and to succeed–and how to use those skills long after they left her classroom. They learned to work together toward a common goal–and how to get along with people who did not always share their values and beliefs. Every day she demonstrated to them what hard work was, what it meant to live a life in service to others, and why doing so mattered.

She never claimed credit for what she did. When she was named Teacher of the Year, she was shocked–and quickly gave me the names of three people she thought deserved it more. When a kid wrote to her about becoming a doctor or a nurse or a teacher or an engineer–or anything–she would smile and say it was all their work and ability–that she had nothing to do with it despite their claims to the contrary.

Yesterday I heard a Stage IV lung cancer patient who is a captain in the Navy talk about leadership–and how patients have to be leaders as well as patients–offering encouragement not only to themselves but to other patients, to their doctors and their nurses, even to their spouses and family members.

And I thought about Jane in that hospital room–about how she talked to everyone who came through that door–right down to the people who came in to wash the floor–how she engaged and encouraged each of them even while fighting for her life with all she had.

I wish the people at the State Houses across this country and the alleged leaders in the House and the Senate and the White House in Washington had even one percent of that quality of leadership. Our problems would melt beneath the intensity of their merest gaze–and then we could all get down to the real work of our time.

Thanks, thanks, and ever thanks

Before I do anything else here today, I have to thank all the humans, elves, mages, dogs, and cats who contributed to yesterday’s $24 in 24 Hours Challenge for our Walking with Jane Relay For Life Team. There was even a dragon in the group.

After I wrote and posted that letter yesterday I went off to do some painting. When I came back five hours later we had raised  just over $1500–and were close to $2600 by midnight. While I will be writing each of you a personal thank you note, I have to say more publicly that your generosity as a group moved me to tears. Our team total is now nearly triple what it was on Friday.

I won’t know the overall totals until later in the week–but I know the GFR thermometer moved more than a little yesterday.

Today was the Jimmy Fund Marathon Walk Pacesetter Brunch in Boston. Together, we raised about $4400 last year for the Dana-Farber Cancer Institute through that event. While that was more than enough to get me invited to breakfast, it did not get me into the top 10 among even first year participants. But it made a big difference for Caring for Carcinoid’s team that moved into the top ten this year. They raised over $35,000. I was among the top fundraisers on the team, thanks to all of you.

And thanks to all of you, we are starting to put Walking with Jane on the NET/CS map. Tomorrow I have a conversation with people at Dana-Farber scheduled to talk about a conference they are running in October on Gastrointestinal Cancers–including NET. According to my source in the development office, Dr. Matthew Kulke–who is one of the major lights in NET/CS research– has seen this site and is impressed with what we are doing here.

Next week I am supposed to get a look at the legal “statement of purpose” and a draft of the corporate by-laws that are the next step in the founding of the Walking with Jane Foundation, Inc. That will allow us to institutionalize what we are trying to do so that, eventually, even if I die or lose my ability to make decisions we will still have this vehicle to carry the fight forward.

Less than a year ago I had just started to think about how to fulfill the vows I had made about fighting this disease. Those thoughts were little more than dreams. No one had started designing-shirts. What I knew about the Relay for Life was that it involved walking around a track–and that there had to be one around here somewhere because one of my students had done a senior project on it. I knew there was a Marathon Walk–but 26 miles seemed like a huge distance–and I had no idea how to sign up for it. And a website–while I liked the idea–was pure fantasy land.

We’ve all learned a lot in the last nine months. But we are still a toddler–albeit a precocious one–who falls down frequently and has trouble forming words most of the time. We have lots more to learn–and much more to do.

But with the help of all of you that toddler may well grow into a substantial force in the battle against cancer in general–and NET in particular.

Thank you.

Tin Cup

There are a lot of things I really hate doing. Some, I dislike the way a child hates broccoli–there is no good reason for it beyond not liking the taste or the way the thing looks, or the way it feels in your mouth. Eventually we outgrow those things–most of us. Today I will happily eat mushrooms, broccoli, even spinach–but cooked carrots still don’t do it for me–neither do beets.

I hate war in general on moral grounds, siding with Ben Franklin’s statement that there has never been a good war or a bad peace. I recognize that some wars have to be fought–World War II being the most striking example–because sometimes evil can really only be opposed by that level of violence. But most are as ridiculous as the conflict in Jonathan Swift’s Gulliver’s Travels over which end of the egg to break.

 In the personal sphere, however, there is little I find more difficult to do than ask other people for money. On the whole, I’d rather simply write a check myself or do without.

Unfortunately, solving the riddle of cancer requires more resources than I can write a personal check big enough to make a dent in. It takes lots of us giving what we can, not only to pay for the research, but also to pay for the support that no insurance policy anywhere can provide for patients.

Chemo and radiation therapy do nasty things to a person’s physical appearance. A woman or man who has lost their hair takes a powerful hit to his or her self-esteem and self-image. That loss can lead to a negative attitude about treatment and the possibility of success.

For some, a ride to Boston or New York for treatment is a godsend. Living alone, as I now do, I sometimes think about what would happen if I were diagnosed with the cancer Jane had. How would I get to those appointments when I could no longer drive myself?

When most of us think about the American Cancer Society, we think about the research end of things. But the ACS does more than support research. It provides wigs. It provides lessons in make-up and in how to tie a scarf in ways that are attractive and disguise the absence of hair. They provide rides to treatments and dozens of other kinds of support services most of us would never think about until we knew someone who needed them.

Today, March 24, The Greater Fall River Relay for Life is doing a $24 in 24 hours challenge. We are asking everyone involved with our Relay to raise at least $24 today online.

Please, go to our Walking with Jane Relay for Life site right now and make a donation. You can put it on whatever team member you want or just donate it to the team in general. Or pick some other GFR team. But please help us get to our Team goal of $480 today.

The Greater Fall River goal for today is $13,464.

Help us put cancer on the run.

Thank you.

Pax et lux,

Harry

Define success

I am on a long and difficult journey. There are no sign posts and no clear maps. Whether I will find a new world or merely sail off the edge into the abyss remains to be seen. Unlike Columbus’ journey, this is a journey through time and not distance. It is a journey of the mind and of the emotions rather than in the physical world. And even if the journey is successful, there will be no material riches, no spices from the Orient. I cannot even say what will be emblematic of success.

But it is a journey I must undertake. It is a journey I am already on. I post dispatches from time to time–here and elsewhere–but they are mere messages in a bottle–and where they

will come ashore and by whom they will be read is beyond my power to divine. I cannot know if those readers will even understand what they say–or if they will understand what I am trying to say. I know only that anyone on a voyage of discovery is bound as in a geas to report what it is he or she finds and sees.

Some of you have taken–or are on–a similar journey. Others will someday find themselves on this same ocean, though for all that the ocean always looks the same, it never truly is.

Some people will be offended by what I say and do. Some will see it all as a cry for attention–and they may be right. Others will see the political me and see it all as self-serving liberal hubris. And they may be right as well.

None of that matters.

Fifteen months and 11 days ago, I lost my compass, I lost my driving wheel, I lost everything that mattered to me.

Over the last few weeks, I have begun to sift through the ashes of that life. The events of Jane’s final days changed me–left me crippled in ways I forgot I could be crippled–and left me without even the crutches I had crafted in the days before I knew her. The ashes are filled with sharp-edged objects that cut me and leave me bleeding. But in those ashes somewhere is the phoenix of our souls–and if that blood is the price of redemption and resurrection, then I have to be willing to pay it.

People talk about brave deaths. I have, unfortunately, seen too many. But of them all, Jane’s was the bravest. I must now live my life with equal courage and the simple faith that love will find a way.

Sifting the ashes of a life

I’m running out of boxes again.

Back in January, I went to a local store to pick up boxes so I could store the books and stuff I had to move out of our study so I could paint it and turn it into my bedroom. I was not sleeping well in the bedroom we shared for 17 years and, after doing some reading, decided swapping into another room with a radically different layout would help.

I went in planning to buy ten boxes. Surely, I thought, that will be more than enough. But I let the clerk talk me into buying a bundle of 25 with the promise that anything I did not use they would buy back. Within two days, I was glad I had agreed to that plan. Who knew two bookcases could hold so much? By the time I was done with packing that one room, I was nearly out of boxes.

So I bought a second bundle, convinced this time I would have some to give back.

Today, I am down to one box with three-quarters of a bookshelf  and several shelves of silk flowers and holiday decorations in the craft room to get through.

I will admit Jane and I were both pack-rats. In my case it was genetic. When my brothers and sisters went to Pittsburgh to move my grandparents from one house to another, they threw out something on the order of two truckloads. The family Bible got lost in the shuffle for about ten years when I found it in the attic of the new house among my grandfather’s household records and correspondence. The man had a record of what he spent on underwear for himself and his family–including the receipts–from the mid-1930s.

I’ve already chronicled the emotional difficulties of this particular piece of the clean-up and reorganization. This room was entirely hers–and every item reminds me of her and the things she liked to do–and wanted to do. She loved cross-stitch. I found not only patterns and kits for projects she had not yet started, but finished designs she had put aside to surprise me with at some future point, as well as three major projects she had started at some point and never come back to.

There were books on learning to play the recorder–an instrument she had taken up just after we got married–and a book on teaching yourself guitar–a thing she had taken up just before she got sick. There were books on learning to paint, on carpentry, on birdhouses… Her future plans are in there just as clearly as her past.

But that future is cut off. And my own future is suddenly different than it was.

Who knew a zebra would prove more deadly–in so many ways–than any cobra or any Bengal tiger? It killed her body, it killed her future, it killed our dreams. It has left me sifting through the detritus of our life together.

But it has done more than make me sad. It has made me angry. And out of that sadness and anger, I have found a new purpose and a new future. While it may not hold the same joy as the future we believed we had, that zebra will remember us.

The Blue Bird

I remember the early days of Saturday Night Live. I remember Chevy Chase before he the Vacation movies–and Dan Akroyd before Driving Miss Daisy proved he was more than a comedian. And I remember the night Lorne Michaels played a skit opposite Garret Morris.

That story in particular came back to me this afternoon as I was going through a drawer full of crafting materials. Near the bottom of the drawer was a tiny pin on a card. The pin was a bluebird. The card said. “Wear a bluebird of happiness to cheer and brighten your day.”

In the SNL skit Morris played Uncle Remus, the legendary inventor of the Br’er Rabbit stories I remember from my youth. Br’er Rabbit was always getting into scrapes of one kind or another. Remus is about to launch into a tale when there is a knock at the door.

Michaels enters and–at first–Remus is happy to see a fellow storyteller. But he quickly learns that Michaels is a man too serious by half. He is appalled to hear that Michaels has been rewriting the Br’er Rabbit stories to give them a darker twist. Michaels tells the story of Br’er Rabbit having been caught by a pack of not-very-bright wolves. The Rabbit tells his foes they can do whatever they like with him, so long as they do not throw

him in the nearby briar patch.

In the original story, the wolves decide that is precisely what they will do. As a result, Br’er Rabbit escapes because they cannot get at him.

But Michaels tells Remus that in his version the wolves respect Rabbit’s wishes and eat him instead.

Remus is horrified by this outcome and asks Michaels: “But what about the Bluebird of Happiness?”

Michaels reaches into his pocket and pulls out a dead bird. “You mean this thing? I found it dead on the path outside,” he says as he tosses it to Remus.

Neither Jane nor I ever saw a bluebird in the wild. But we had a stained glass ornament that hung in our front window until after her funeral. I took it down then because I could not bear the irony: the bluebird that was at the center of my

happiness was gone. Seeing it there every day mocked me.

I still laugh. I still smile. But neither the laughter nor the smiles yet penetrate fully to my soul. And when I found that bluebird at the bottom of the drawer, the tears came with that sudden grief I

keep trying to explain–and failing to explain. Near it was a picture Jane had cut out with a pair of scissors that creates a fancy border. The picture was of a plaque with an inscription: “The time to be happy is now. The place to be happy is here.”

I am not much for lapel pins, but I had a meeting to go to tonight. I took the bluebird from its card and pinned it to my suit.

The Ticket

You just never know when something is going to jump up and hit you in the head.

This morning I started clearing out my wife’s craft room so that I can clean the walls and paint them. I have been using the room for storage as I cleared the other rooms for they same treatment, so this would be a major undertaking even with the potential emotional land mines the room contains. Taken together…well, there is a reason I left this room for last and have been finding excuses not to start it for the last week and a half.

One of the things Jane and I did on our honeymoon was take a short boat trip on the lake we were staying near. The boat was an old side-wheeler that ran on a steam boiler. I have a picture of her standing on the pier next to the boat when we got back.

That boat was long gone by the time we returned there the summer before Jane’s death. We both knew our lives were going to be deeply changed in the months ahead and that this might be our last vacation together. Every moment of that trip was emotionally charged. We knew we were saying good-bye to each other and to the places we loved.

The last day, we went back to the town we had honeymooned in. There was a new boat owned by the same hotel making the same tour. We bought tickets, boarded the boat, and were amazed at the amount of development that had happened in the nearly 21 years since we had last been there.

When we got home, I put my ticket in the box I keep those kinds of things in. Usually Jane’s ticket would have joined it–but for some reason it did not this time. The box is filled with movie tickets, golf scorecards–those kinds of things.

This afternoon, a little after 2 p.m., I found her ticket from that trip. It was sitting on her craft cabinet waiting for me. And it reduced me to tears. Half an hour later, I found an unfinished Christmas ornament she had been working on some years ago that had not worked out. It, too, left me emotionally drained. Then I found the poem I had written her for our nineteenth anniversary.

Finally, I stopped. I went for a walk in the beautiful late afternoon sun. I thought about the

summer before our honeymoon, about the long days we spent together picking out furniture together, about the painting and the wall-papering–about all the things we did together to make that first apartment home. I remembered coming home from a trip to Pittsburgh after a 12 hour drive and finding a newly finished cross-stitched pillow sitting on my chair.

And I remembered our last summer–the walks, the doctor’s visits, the hospital stay, the biopsy–and that last vacation trip.

People ask why I do what I do–why I don’t just curl up in a ball and let the world take care of itself–let someone else push for research and education and everything else.

The answer is as simple as a ticket on a cabinet or the pillow that is still on a chair in the bedroom–and just as unexplainable.

Time to join the movement

Friends, Romans, Countrymen–lend me your ears…

The Greater Fall River Relay for Life is off to a great start. We are closing in on 500 participants. We have 61 teams signed up online. We have raised over $17,000 so far.

But our Walking with Jane relay team efforts need a boost at this point. Yes, we have raised over $1,300 to this point. Yes, we have plans to raise more. But right now we have just nine team members signed up–and there is no way we can do all we have ahead of us without more help–lots more help.

There are just 96 days left to the start of Relay. Three months sounds like a long time–and I know we raised over $2,500 in barely a month last year–and close to another $1,500 at the event.

But our target is a lot bigger this year. We won the Team Spirit Award last year without even knowing it existed. It looks good with us. But if we want to keep it we need to start growing the team now. We need big fundraisers, but we also need the little fundraisers. Ten buttons here, a dozen bracelets there, a few cookies, muffins or cupcakes, some simple zebra ribbons, all can add up to serious money before it is all said and done.

Here’s what we need you to do:

If you are planning to join the Walking with Jane Relay Team, go to our Relay website and get registered. It will cost you $10. They will send me a notice that you have signed up.

Then participate in the first Relay Team Challenge. On March 24, every team member who raises $24 in that 24 hours will earn the team a chance to win a Midnight Pizza Party at Relay Friday night. No standing in line to get pizza or drinks for the winning team. It will all be delivered to our site.

And of course doing well in the challenge means increasing our chances of keeping the Spirit Cup.

How can you raise $24 in that 24 hours? I have WWJ buttons, bracelets, water bottles, t-shirts, tote bags, luminaria bags. Just let me know where you want them and I will get them there. Or you can make simple zebra or blue ribbons and sell them for fifty cents or a dollar or a donation. I will see what ribbon I can find this week. If someone has an idea for a group project that day, I am all ears.

My personal plan that day is to ring door bells in the neighborhood that day and see what I can get. But I am game for anything anyone else wants to try.

I will have more details about the logistics of all this after Tuesday night’s captains’ meeting at Somerset. In the meantime, get registered online so we can hit the ground running.

And if you live away and can’t relay with us, join a team in your area–or form a WWJ team of your own. Or make a donation to our team as we raise awareness about NET and raise money to fight all cancers.