I finished my sixth full Marathon Walk in 2018–and my eighth year on the course. This year, I had company on the full course, including Morgan Bozarth and Dan and Julia Hurley. One of my personal goals is to get at least one more full distance Walk in this year.
Thinking about goals
I sit down to review the goals for Walking with Jane and draft new ones every January as part of the planning process. Doing so requires me to look not only at Walking with Jane as an organization but also requires I look at what the other groups involved in the fight against NET cancer are doing.
We need to spread the knowledge…
The reason for that is I see no reason to keep doing something others are doing better. We have limited resources. I try to work on the things that seem to me to have too few resources aimed at them.
Looking around
This year, I decided to zero everything out and start from scratch. I asked myself, “What do we do well—especially better than anyone else? What do we do poorly—or that some other group is doing so well and so broadly that we can step back from it? What are the holes that need to be filled regionally, nationally and internationally? What would I do if I were coming to this work today?”
We have limited resources.
Truth be told, while NET cancer has come a great distance since Jane’s death in 2010, a great deal remains to be done. Yes, patient awareness and support has come a great distance. The Carcinoid Cancer Foundation links patients to doctors and information about the disease at a very high level. Several groups sponsor both regional and national conferences aimed at patients and caregivers that are invaluable resources.
What do we do well?
Research funding has also improved markedly over that period as well. Thanks to generous donations, the NET Research Foundation has begun to establish a broad base of researchers around the world. Globally, there is more research going on than ever before—research we can hope will one day result in cures for NET cancer patients everywhere. In the meantime, that research is turning up ways to improve patient quality of life—as well as lengthening their lives.
Holes to fill
But too many primary care physicians remain ignorant about the disease. Even those who have heard of it often rely on vague memories of the past and know almost nothing about the latest research. It’s not that the resources to educate them don’t exist—it’s that they don’t know where to look.
What do we do poorly?
Nor does the general public have any name recognition for the most part, despite NET cancer being the second most common form of gastrointestinal cancer in the US.
Funding matters
We rely heavily on big donors for both awareness and research funding. Sometimes that money comes with strings attached, pushing researchers in particular directions. That’s not necessarily a bad thing. Drug companies only step up when they see science that is working—and we need to fund translational research that brings the results of basic science to patients who need treatments.
…too many primary care physicians remain ignorant…
But basic research rarely attracts those kinds of donors. We need to develop ways to consistently reach the $25-$1000 donors who together can make an important difference. Walking with Jane has helped spearhead efforts at the Dana-Farber Cancer Institute in that direction. Last year, those efforts created about $700,000—the lion’s share through Boston Marathon Jimmy Fund Walk and Pan Mass Challenge teams.
Lifting more boats
That was all part of a larger campaign to attract both large and small donors to the NET cancer program at DFCI. Over three years, 3-in-3: The Campaign to Cure NET Cancer, raised a total of over $3.6 million.
We need to develop ways to consistently reach the $25-$1000 donors…
We need to spread the knowledge of how to do that to NET cancer centers everywhere. Part of our goals this year is a major push to do just that.
The 2019 Goals
Our 2019 goals are broken down into three areas: Fundraising, Awareness, and Infrastructure. Some of the goals appear in all three areas.
Fundraising Goals
Raise $900,000 in small donations for the Program in NET Cancer at DFCI
Retain and Expand the #curenetcancernow Boston Marathon Jimmy Fund Walk group
Set a group goal of $200,000 and 300 walkers
Set a NETwalkers Alliance team goal of $75,000 and 30 walkers
Set a personal Walk goal of $18,000
Expand the number of riders for NET Cancer of the Pan Mass Challenge
Set a total Ride goal of $700,000
Help the Heidi’s Heroes team reach $250,000
Set a personal ride goal of $12,000
Help NET Walk and PMC teams develop effective fundraising activities
Support efforts by the development office at DFCI to attract and retain large donors
Raise an additional $20,000 to support the Primary Care Physicians NET Cancer Awareness Initiative (Laura Maguire Hoke Fund for NET Cancer Awareness)
Raise $4000 for the Jane Dybowski Scholarship Fund
Help other NET cancer centers develop effective small fundraising events for Walks, Rides, etc.
Write and recruit fundraising articles for the fundraising section of the website and for the Walking with Jane Fundraising group
Awareness Goals
Redesign website in support of the new vision and purposes
Create both and materials for primary care physician conferences
Book and attend primary care physician conferences
Create press releases and pamphlets as needed
Create PSAs as needed
Do 2018 form 990 and post—with past years—to new website
Create a team for Relay for Life
Infrastructure Goals
Complete Walking with Jane office
Update computer system and printer as needed
Design banners for craft fairs and PCP conference booth
Redesign and rewrite website
Maintain and expand social media connections
SnapChat
Others
Create detailed monthly plans for all of the above
I’ve just received unofficial word that Pan Mass Challenge (PMC) riders raised $500,000 for NET cancer research at Dana-Farber this year. The exact amount won’t arrive until the final tally in January.
I’ll be riding–and walking–again next year
Combined with the money from the Jimmy Fund Walk, small donors will have combined their efforts to the tune of over $650,000 for NET cancer research at DFCI this year.
PMC, Walk boost 3-in-3 total
This also, unofficially, puts the total for 3-in-3: The Campaign to Cure NET Cancer at just over $3.5 million. The campaign closes in December and aimed to raise $3 million over three years to support NET cancer research at the Dana-Farber Cancer Institute in Boston.
…small donors will have combined their efforts…
This is a wonderful piece of news for NET Cancer Awareness Month in Massachusetts and for Worldwide NET Cancer Awareness Day on November 10.
Looking forward to next year’s PMC
My personal thanks to all those who rode and walked and to all those who donated. You are truly making a difference in the lives of others.
…a wonderful piece of news…
I’ll be riding–and walking–again next year–Gods willing and the creek don’t rise. We will, with your help, find the answers to NET cancer.
Please don’t refer to the cancer that killed Aretha Franklin as pancreatic cancer. According to her publicist she died of “pancreatic cancer of the neuroendocrine kind.” That form of cancer is more properly referred to as pancreatic NET or pNET. It is a very different type of cancer than the pancreatic cancer most people know about. Among other differences, pNET can create an over-supply of any of the pancreatic enzymes, with dire digestive consequences.
Two of the top doctors in this field are in the Boston area. Dr. Jennifer Chan is the Director of the Program for Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute. Dr. Matthew Kulke, the former head of that program, is now the assistant director of the oncology program at the Boston Medical Center. I suggest you talk to one or both of them.
(There are many other doctors and researchers I could name. The initial audience for this was Boston area media. Feel free, if you share this in other areas, to provide more local experts.)
I lost my wife to another form of NET cancer in 2010. I now chair a small foundation focussed on raising awareness and research funding for all forms of NET cancer. I also currently chair 3-in-3:The Campaign to Cure NET Cancer, which is raising $3 million over three years to fund research at Dana-Farber into NET cancer.
NET cancer is now the second most prevalent form of gastrointestinal cancer in the US in terms of the number of diagnosed patients living with the disease. Only colon cancer has more living patients.
Thank you,
Harry Proudfoot
Chairperson, Walking with Jane, Inc.
Chairperson, 3-in-3: The Campaign to Cure NET Cancer
Feel free to use this letter to contact your own local news media. And feel free to change the experts to ones in your area, as well as your connection to the disease.
I wish my personal landscape involved more time with my hummingbirds and less time trying to help unravel NET cancer. But the good of the many outweighs the needs of the one, as Spock would say.
Changing landscape of NET cancer
The landscape of NET cancer has changed enormously over the last eight years. We had no money for research worth talking about. Too many patients and caregivers had few support systems beyond their immediate friends. Online support groups were mostly small and hard to find. People in the US had to fly to Europe to get the single most effective treatment available.
I can already see the broad outlines forming…
I’ve had little to do with any of those changes beyond wishing for them. Yes, I’ve helped raise or inspire about $4 million in funding for research in that time. I’ve offered some solace and knowledge to a small number of patients and inspired a couple of people to write about their experiences. I’ve tried to lay some groundwork where I could. But what I’ve done and what I wanted to do remain two very different things.
Where I’ve been
Over the last ten months, I’ve done a lot of thinking about what I’m doing—a lot of thinking about what the NET cancer community has been doing.
Honestly, though, the bulk of that effort has not fallen on me. I’ve chaired the monthly progress meetings, made some suggestions, led our NETwalkers Alliance team, and given the occasional speech, But the bulk of the effort has fallen on Hillary Repucci and her team in the Jimmy Fund office.
I’ve done a lot of thinking about what I’m doing…
Still, that effort has taken something out of me. I’ve written less and less for the walkingwithjane.org website, written very little on the grief websites I’m part of, written very little on the various NET cancer support websites. My personal writing has entirely withered on the vine—as has much of my personal life. For eight years, NET cancer has dominated my waking hours—and too many of my sleeping hours as well.
Fighting through the emotions
It has become harder and harder to do more than read the posts in the NET cancer support groups—emotionally harder and harder to do even that. Every patient’s story reminds me of Jane’s, reminds me that we still don’t have a cure, reminds me that every time I’ve seen something that looked promising it has fallen well short of that promise.
…the bulk of that effort has not fallen on me.
Two weeks ago, I lost another person, who’d become a friend, to this vile disease. Like Jane—like too many others—she was diagnosed far too late—died far too young. Each patient’s story strafes my soul; each death reminds me we have not yet done enough. For all that things are better than they were—they are not yet what any sane person would call good.
The unchanged landscape
Eight years ago next month, Jane and I sat in her primary care physician’s office waiting to learn the results of her biopsy. Jane had a blood clot in her shoulder. As a result, we were getting the results of the test a couple of days early. She would spend that night in the hospital. It would be only the second time in almost 21 years of marriage that we spent the night apart. It would not be the last.
Every patient’s story reminds me of Jane’s…
“It’s cancer,” her doctor said. “I don’t know how to tell you this, but it’s a cancer I’ve never heard of before.”
The changing reality
Too many people still hear similar words when they learn they have NET cancer. That piece of the landscape hasn’t changed. Too many patients still have to educate their oncologists about the current treatments for the disease. That piece of the landscape hasn’t changed enough either, for all that it is marginally better than it was eight years ago.
‘…I’ve never heard of before.’
NET cancer is now the second largest form of gastrointestinal cancer in the US in terms of the number of diagnosed patients living with the disease. We now diagnose more than 20,000 new cases every year. Nearly 200,000 people are knowingly living with the disease in this country as I write this. Yet it remains a disease the vast majority of Americans have never heard of. That piece of the landscape hasn’t changed.
And how many people are out there suffering—as Jane did for years—with NET cancer who will never know they had it—whose relatives will be told they died of something else? Too many.
What I want–and why I don’t
I want to stop. I want to sit on my deck and watch the hummingbirds, work on my garden paths, plant flower beds, sit in Jane’s memorial garden and watch the baby bunnies nibble the leaves on the perennials. I want to bake cookies and breads, to write a novel and some poetry, to play chess and learn to knit or sail.
Too many people still hear similar words…
But Pam’s death haunts me; Kevin’s death haunts me; Laura’s death haunts me; Jane’s death haunts me; the lives of all the people I know who live with what each of them went through drive me away from my birds and bunnies, my flowers, paths and trees—drive me away from my kitchen, away from my novels and poems.
Carving out the future landscape
Periodically, I take some time away from everything. Last week was supposed to be one of those times. It didn’t happen. The everyday problems of life intervened. It’s not clear when I’ll get a few days away, but I have a bit of a busman’s holiday this weekend between the Landers’ Golf Tournament and the PMC. I have no responsibilities beyond showing up to hit a few golf balls, say a few words, and ride a bike for a few hours. I’ll try to get away for a few days after Labor Day and a few more after Columbus Day.
Jane’s death haunts me…
But come mid-December, I’m taking an extended break from day-to-day fundraising and day-to-day NET cancer issues. Part of that time, I’ll spend relaxing and trying not to think about NET cancer. Some of that time, I’ll spend mourning the losses of the last eight years. And some of that time I’ll spend thinking about how to make the next moves in this long war I married into. I can already see the broad outlines forming at the back of my mind. I’ll start working on those in the coming weeks, even as this chapter draws closer to an end.
Whenever the going got tough for her students, Jane challenged them with this quote. Sometimes, I need the same help it gave them.
The Path I walked
We started working on the idea that would become the Walking with Jane seven years ago this month. It was supposed to be nothing more than a Relay for Life team—the kind of thing Jane and I had hoped to do to help others after we retired that June. But Jane was dead—felled two months earlier by a cancer even her doctor had never heard of—and I was barely emerging from the shock of burying the greatest love of my life a month after her 56th birthday.
For seven years I mourned that loss. I can’t explain what happened December 10, 2017. I know I cried a lot. But something was different when I awoke the next day. I still hurt—I expect I always will—but the pain was muted—not as biting, somehow. She does not haunt my every waking moment, my every action, as she had for so long. I felt my brain begin to work again the way it once had.
Help creates knowledge
The time of mourning may have ended, but not the battle against the cancer that destroyed our dreams. That battle continues until it is dead or I can no longer carry on that fight.
And, with your help and support, we have made a difference. The money Walking with Jane has raised has provided the seed money to research NET cancer’s DNA, RNA and the microenvironment that surrounds the tumors. The RNA research may lead to a universal screening test for all cancers—not just NET cancer. We’ve helped create a new NET cancer model that lets scientists understand how the cancer works. And we’ve inspired others to step up in major ways to help fund all those studies and others that may lead to a cure.
Help creates trials
A year ago trials, inspired by some of that research, led to FDA approval of telotristat etiprate. The drug is not a cure, but it does slow the disease down while alleviating symptoms for some patients. Trials for a new therapy, CAR-T, that trains the body’s own immune system to fight NET cancers, will begin later this spring.
But the war against NET cancer is far from over. We’ve gone from diagnosing 10,500 cases a year in the US in 2010 to 22,000 cases a year today. We’ve gone from 105,000 people living with a NET cancer diagnosis in 2010, to over 171,000 today. Last month I read a paper that indicates four percent of all cancers have NET cancer features that complicate curing them.
Help fight any way you can
And the numbers keep growing. NET cancer is now the second most prevalent form of gastrointestinal cancer—trailing only colon cancer. It is not as immediately deadly as colon cancer or pancreatic cancer, but it is a killer, nonetheless—and one without a cure.
This summer, I’ll get on a bike for part of the Pan Mass Challenge. This fall, I’ll take on the Boston Marathon course for the eighth time. With every mile of each, I’ll raise money and awareness for NET cancer research. I know what patients and their families face if we don’t keep moving forward—and I’m determined not to let that happen.
So here I am, hat in hand, asking you for your help. NET cancer killed Jane. Every day, it kills patients I have met on this journey. It won’t let go of me—and I won’t let go of it until one of us is dead.
Please help.
Pax et lux,
Harry
Some other reasons to help
p.s. I lost one of my closest remaining friends to glioblastoma in July of 2017. He was diagnosed in April of 2016. His illness consumed much of the energy I normally devote to this work. In August of last year, I had surgery to remove a basal cell skin cancer from my face. A recovery that was supposed to be measured in days turned into months when the cancer proved much larger than anyone anticipated. I’m fine. They got all of it. But sunscreen is now a daily ritual, even in winter.
p.p.s. Again this year, a generous donor is matching gifts to my Walk, dollar-for-dollar. There’s about $2200 left to claim at this writing for the Marathon Walk and $1280 left for the Pan Mass Challenge. This is an especially good time to help.
August 4-5—Bike Rides from various points and of various distances
I met with Heidi’s Heroes team captain Heidi Fischer yesterday. The design for the team shirts is finished and is really quite striking. And she has some wonderful water bottles for team members. The team has 24 members, as of this morning and has raised $23,300. We could do with more in both categories.
Current fundraising efforts
The team has a fundraiser at Orange Theory Fitness Sunday, 12-1:30, 610 Providence Highway, Dedham. This is an upbeat one-hour workout experience. You set your own fitness goals and work out in the company of peers and under the direction of a coach. Registration donation is $35. To sign up, donate to Team Heidi’s Heroes, and in the memo put “Orange Theory Fitness.” Then email Heidi (fischerheidi@msn.com) so she can add you to the class list. You need to sign up by Friday.
No change in my personal status for this event since last week. Our first direct mail to individuals started going out last week. About 100 letters are in the mail. The next phase of that—the online portion—will go out today or tomorrow—and then about another 100 physical letters by the end of this week. The tin cup letter generally brings in $3-4000—much of which is doubled by an anonymous donor.
I’m working on a recruiting poster for local bike shops and the DFCI clinic this week.
September 23—Various start points and distances along the BAA Marathon course
Much of my energy went into laying the groundwork for this event the last two weeks. I’ve raised $6785 so far and we currently have two members signed up. I’m still working on the details for our next fundraiser at Lyrics in Tiverton, RI on April 30.
Current fundraising efforts
Our first direct mail to individuals started going out last week. About 100 letters are in the mail. The next phase of that—the online portion—will go out today or tomorrow—and then about another 100 physical letters by the end of this week. The tin cup letter generally brings in $3-4000—much of which is doubled by an anonymous donor.
Training for both this and the PMC has not gone very well so far. The weather’s been awful and we have more snow coming in tomorrow.
I’m working on a recruiting poster for local gyms and the DFCI clinic this week.
June 23-24—Bishop Connolly High School, Fall River, MA
We have two official members on the Walking with Jane & John team. Our site will be directly across from the food tent, where we will do stuffs and clam chowder from about 4 p.m. until we run out. We need people to help serve, as well as take a few laps around the track.
Current fundraising efforts
I was at the captains’ meeting for this last week and they have made some changes to the format that I think will make things more friendly for people and teams who have not done the event before—and increase interest for those who have. This is the premier Relay in our part of the world in recent years—and this is their 20th anniversary year.
Money raised goes to general cancer research and patient support services.
Tents begin to sprout for Relay in late June each year in Fall River. People walk the track throughout the night to raise money for cancer research and patient support services.
Twenty years of Relay
Relay for Life of Greater Fall River observes its 20th anniversary this year. In honor of that event, the local committee is designing a commemorative t-shirt. At last night’s captains’ meeting they asked us to say why we Relay for part of the design.
Walk to remember…
I couldn’t come up with anything clean enough to go on a G-rated t-shirt. My hatred of cancer is well-documented and solidly rooted in experiences that long predate what I went through with my wife Jane. One of my best friends lost her father to cancer when we were in the eighth grade. I lost my favorite uncle to spinal cancer a couple of years later. In college, I watched another friend wrestle with her father’s eventually fatal colon cancer.
Twenty-six cancers in five minutes
As a young man, I watched two of my neighbors—people I spent lots of time with—succumb to cancer from a much closer vantage point. They lived downstairs from me. He had lung cancer. More than once his wife pounded on the pipes to bring me downstairs to help him get up from where he had fallen. Not long after his death, they found she had colon cancer. She died soon thereafter.
…committee is designing a commemorative t-shirt.
Last night, I made a list of all the cancers people I knew—or know—have dealt with. In five minutes, I had a list of 26 different cancers. For all but three, I knew someone who had died from them. And even for those three, the cancer deeply changed the people who had them—and the people around them.
Relay retirement
For Jane and me, teaching was a consuming passion that left little time for much else. We wanted to do things like Relay and the Marathon Walk—and planned to do them after we retired. We both had more than enough reason to. Instead, while we worked, we sent money to the Jimmy Fund and the American Cancer Society and a handful of other cancer research funds. We envied the people who had the time and energy to do more.
…I had a list of 26 different cancers.
And then, Jane died. She died of a cancer no one had ever heard of—and that almost no one seemed to care about. I now know more people who have that cancer—or have died from that cancer—than I know people who have had or died from every other cancer I have experienced in the lives of others combined. And the number of people I’ve lost to those other cancers is not a small number, either.
Why I Relay
I should be numb by now. I’m not. None of those deaths has had an impact on me that rivals Jane’s, but every one of them hurts—and every one of them reminds me how much more remains to be done. I may hate NET cancer more than the other cancers—but I truly hate them all.
We both had more than enough reason to.
I hate them because of what they do to the people who have them. I hate them because of what they do to the families—to the spouses and the children and the mothers and the fathers and the brothers and the sisters and the aunts and the uncles and the grandparents. I hate them because of what they do to the friends.
And then, Jane died.
So I keep walking. I keep talking. I keep writing and reading and looking for new ways to help raise the money and awareness that will finally drive cancer into the grave rather than the people who have it.
Find a Relay near you
If you’ve never experienced Relay for Life, you should. It’s one of the most amazing things I’ve encountered since Jane died. It’s a community of people who have fought cancer—as patients, as families, as caregivers. They celebrate the victories and mourn the losses and work to find the answers to every type of cancer there is. They work to support patients and caregivers in a dozen different and meaningful ways beyond research—from supplying rides and cosmetics to providing a place for a family to stay so they can be close to the person getting treatment.
I truly hate them all.
And if you are in the Greater Fall River area, you should join us June 22-23 at Bishop Connolly. Walk to remember Jane. Walk to remember John. Walk to remember the people in your life who have fought cancer to their dying breath—or to honor those who are still fighting, and hoping for a cure.
I did my first Marathon Walk to support NET cancer research in 2011–and captained my first Marathon Walk team in 2012. You can make a difference.
Walk–or ride–you can help
Research carries a hefty price tag. Part of the work Walking with Jane does is raise money for that research. You can help, either by participating in a fundraising event–or by donating to one. Starting this week, we will publish a weekly update on our major efforts–and the fundraisers we do to support those efforts.
Here’s this week’s update on my cancer fundraising.
Boston Marathon Jimmy Fund Walk
September 23—various start times and locations. Team Name: NETwalkers Alliance
The bulk of last week’s efforts went to setting up my personal and team pages for this event. Including the check I mailed out this morning, we’ve raised $6835 for NET cancer research through this event for 2018. That’s the fastest start I’ve ever had straight out of the gate—and leaves me $665 short of Four Star Pacesetter status. It was early September last year before I reached that level. I’m hoping to reach that this week.
The Jimmy Fund Walk Brunch was this weekend. Officially, the Landers Charity Golf Tournament run by team member Jenaleigh Landers and her family, was the second largest individual fundraising event for the Walk, raising $17,689. The #cureNETcancernow group, of which the NETwalkers is a part, finished third among groups, less than $1500 behind the second place group made up of State Street Bank employees.
The Landers Tournament will take place August 4 at the Bradford Country Club in Haverhill, MA, if you want to pencil that in on your calendar. Details should follow shortly.
As of today, I remain the only person signed up for our team for the Walk. I hope to put out a recruiting letter this week, as well as a fundraising letter. But you don’t need to wait for either one. Just click to sign up or donate.
PanMass Challenge
August 4-5—various start times and locations. Team Name: Heidi’s Heroes.
I’ll take on the 50 mile Wellesley-Patriot Place-Wellesley round-trip on Sunday. I’ll be at the Landers Tournament on Saturday, so much as I’d like to do more…
I’ll reach $3290 raised for this once the PMC gets a check for $670 I have to send them. The team is at $23,245 this morning, but held a fundraiser yesterday in Dover, MA that has not reported in yet. That conflicted with the Brunch for the Walk yesterday, so I wasn’t there.
The team has another fundraiser at Orange Theory Fitness at the studio 610 Providence Highway, Dedham. This is an upbeat one-hour workout experience. If you have not tried it, you must come see what it is all about. You set your own fitness goals and work out in the company of peers and under the direction of a coach. Registration donation is $35. To sign up, go to PMC.org, donate to Team Heidi’s Heroes, in memo put “Orange Theory Fitness.” Then email Heidi (fischerheidi@msn.com) so she can add you to the class list. Need to sign up by Friday March 23.
Relay for Life of Greater Fall River
June 22, 3 p.m. to June 23, 10 a.m.—Bishop Connolly High School, Fall River MA. Team Name: Walking with Jane & John.
If you’ve never been to a Relay for Life, it is a one-of-a-kind experience in Fall River. As an event chair several years ago, I toured many different Relays. Fall River’s event is the most intense I’ve seen. We don’t do as much here as we once did—the work on NET cancer was always my lodestone, and the more responsibilities I took on for that, the less energy I had for Relay beyond the day of the event itself. But we have had a presence at every Fall River Relay since Jane’s death. We’ve become famous for our chowder in the food tent. This year, we’ll have chowder again, but replace Gail’s famous clam cakes with stuffed quahogs instead. Come help us feed the masses—and take a few laps around the track in memory and support.
The Relay Craft Fair is at White’s of Westport on May 5. I’ll be there to raise money for the Jimmy Fund Walk and the PMC.
So far, we have raised $560 and have two team members signed up. Please take a few minutes to sign in if you are going to help us serve that night.
This year, we’ve changed the team name to honor our dear friend John—Jane’s best friend in the science department at WHS—whom we lost to glioblastoma last July 1. John was a fixture at Walking with Jane events—and we all miss him very deeply.
A life of love is created by the 10,000 little things we take for granted–until they are gone. Jane already had had NET cancer for more than a decade when this picture was taken; we just didn’t know it.
Big things hurt; little things kill
Valentine’s Day, Christmas, Thanksgiving, birthdays, Halloween, even our anniversaries are not the worst days in my life since Jane died. They can be hard–and no mistake. But the little things are the real killers.
The little things really do add up…
I loved Jane’s voice. No recordings of it exist, though. I don’t know when the sound of it vanished from my memory. All I have left is the scarred, post-surgery voice she had in the hospital. Even it fades 84 months later. To be honest, a part of me wishes that, too, were gone. It comes freighted with too many painful memories.
The little things I miss
I miss the morning hugs; I miss holding her hand; I miss the daily drive to work and the walk to her classroom. These seemingly small things grounded us both, reinforced the basis of our love in ways no bunch of flowers or cards could do.
I loved Jane’s voice.
We cooked together; we cleaned together; we shopped together; we gardened together. Now I cook alone, clean, alone, shop alone, garden alone. The lovemaking and the sex matter far less than the companionship–the simple day-to-day acts of sharing a life together.
Logic, evidence and compassion
Jane was smarter than I was–better able to look at evidence and draw conclusions dispassionately. Those things tempered my compassion. And my compassion, she said, tempered her logic. We made each other better together than we were alone. Now, bereft of that balance, I second-guess my every decision and my every action.
…the simple day-to-day acts of sharing a life together.
My single talent revolves around words. It was the one place my skill was greater–marginally–than hers. But even there, she made me better. She was my best and clearest editor. She helped me prune and shape my written words to greater effect constantly. And when the writing fit was truly on me, she would make sure I ate and drank, knowing in that state, time ceased to exist for me.
Little things shared create partnerships
She, too, could vanish into herself. When she crafted she got caught up in the emerging piece so much time stopped for her, as well. The same thing happened when she worked an interesting physics problem or tried to unravel a complex concept into terms her students would understand. In the classroom, for both of us, the world ceased to exist beyond the people in front of us and their need to understand.
We made each other better…
One of my professors told me I had a mind that embraced everything–that wanted to understand everything and how it was connected. Jane had a similar mind. We read everything on everything. And then we talked about it–education science, art, literature, history, philosophy; the universe was our classroom and we were each other’s teacher, student, and colleague.
Learning to hear
But we also learned from each other how to listen with a singular focus some might find unnerving. We heard each other with every sense attuned to the other. We did not hear the other’s words–we felt them in our entire being, with every sense–and in every sense.
We read everything on everything.
And that is what I miss most–the sense of two souls twined together beyond words and beyond thought or emotion. And it is what frightens me most when I think about the possibility of other relationships. I know how long it took us to reach the place that we were–how much time and how much patience and how much understanding. We worked at being us every day.
The little becomes the big
In the end, it created this enormous vulnerability we did not conceive of–that if one of us died–despite our deeply held beliefs–the loss would cripple the other in ways I only now begin to understand.
…the sense of two souls twined together…
And yet, I know I would risk that same investment to have that feeling of unity again. The little things really do add up to something far greater than two little lives in a universe of stars and open space.
