HAP

Thank you all for your kind words. --Harry

I posted this earlier today on my blog, but thought it would have value for some here as well. I remember to forget forgetting I lost track of the date over the weekend. It happens when you really don't have a good reason to remember. But I don't really need a calendar to find the tenth of any month. All I have to do is look at my behavior and how I'm feeling. My subconscious knows the monthly anniversary of Jane's death even when my conscious mind doesn't. It really starts the night before. I avoid going to bed. When I get there, I don't sleep. I know what Ebenezer Scrooge dreamed that night, but my ghosts visit me the tenth of every month. They are relentless. Someone asked me last month to write a piece about dealing with the failures and regrets after you lose your spouse. I want to answer that question as a last part of my series on being a caregiver. But I don't have an answer. Remember to forgive Jane forgave me before she died. I know that because she said it. But I have yet to figure out how to forgive myself. Intellectually, I know I did all I could have done. I made the best decisions I could, given what we knew at the time. But emotional forgiveness is a very different story. And I also know that even if I find a way to get my emotional side to accept and forgive, I will never be entirely whole. I wrestle with that part of the loss as well--and never more than on the ninth and tenth of the month. I remember confusion The good news is that I cope pretty well the rest of the month. I cook, I clean, I buy groceries and pay the bills. I go out to listen to music or see a play. I laugh. At times, I can even pretend for a few hours that everything is normal. Last night, I buried myself in a book for six hours. I went to bed about 3 a.m. I woke up late, not knowing what day it was. I went to the kitchen and made six separate trips to the refrigerator to gather the ingredients for breakfast, interspersed with doing dishes, opening the drapes, and moving randomly from room-to-room to no earthly purpose. I dropped things. I couldn't get my mind to focus and soon was berating myself for being stupid. I remember why Then it came to me: today marks 73 months since Jane's death. It is the day my mind does not function, the day my body doesn't work, the day I will say hurtful and destructive things to people without a second thought--and not know I've done it if they don't call me on it. I am always a sick human being, but never more so than on the tenth of the month. I should--and usually do--withdraw from the world that day. And so I did today. My only human interaction was with the folks at the flower shop where I bought the monthly bouquet for Jane's grave. The cemetery was empty when I got there--and stayed that way. I put the flowers in the cemetery vase, then stood in the snow and the wind and talked to my dead wife for 20 minutes. Cold memory The clouds scudded across the sky. There is a storm coming in tonight that will melt all the snow. But I always find her grave a cold place. It felt that way before she died, as well. I can dress that stone any way I like, but the flowers do little to blunt the pain. I count my other losses while I am there. My mother-in-law, dead of pulmonary fibrosis, is buried there with her husband, whose body simply shut down over the course of a weekend. My mother, who died of Alzheimer's, and my father, who died of a stroke, have no grave. Their ashes are scattered together in my sister's garden in Seattle, feeding a tree that plays host to hummingbirds throughout the year. Remember the others I think of all the NET cancer patients we have lost since Jane's death, knowing that barring a major breakthrough, we will lose more in the years ahead. I wonder if I have done all I can to change that future, knowing even if I have, it is not nearly enough. And I think of all the people I have lost to other forms of cancer and other diseases--lives cut short by things I could not cure or prevent. Today, I got a note from a man who lost his wife to NET cancer on Christmas Eve. She died in his arms, as Jane died in mine. I gave him what little comfort I could, knowing there is nothing I can do or say that will make any of what he faces feel any better. You think there is nothing worse than that feeling of absolute helplessness when you hold someone in your arms knowing there is nothing you can do beyond what you are doing--and that it does not seem like enough. The days that hurt But it's not the day they die that really grinds on your soul. Nor is it the day you bury them. You have things to do those days--and people to hold your hand. It's all the days that come after--all the days you wake up alone, live alone, and go to bed alone. If you're lucky, as I have been, you find meaningful work to do. If you are really lucky, as I have not been, someone comes into your life to share that burden with. But you never forget--and it never really stops hurting. You learn to cope. You learn to show the face to the world it wants to see. And you talk with the others who have made--and are making--the same journey. You share a secret those who have not lost never really come to understand. And you move forward, as best you can, through a world that has no idea--and no vocabulary that will let them understand until they experience it themselves. And it is, if you have a heart, something you would never wish on anyone. Remember the now The rain has begun. The droplets run down the window across from me. I can hear the clock ticking over my shoulder, the rumble of the furnace in the basement and the sound of my own breathing when my fingers pause on the keys. My stomach grumbles. These are the sounds of an empty house when half its soul is gone. It has been the background noise of my life for 73 months. It is why I fight so hard to end the things that have cost me so much--and why I keep fighting six years after I lost everything that mattered. --Harry I remember Jane's love of the natural world. Her memorial garden centers on stone, but is surrounded by wildflowers, bees, birds, and butterflies.

I moved the last of the stone out of the driveway today and began buttoning up the outside of the house for the winter. I didn't get everything done I wanted to out there this year. It turns out there are only so many hours in the day--and only so many good days to work outside in a year. But I got the back half of Jane's memorial garden done and placed the stone there, got the patio and the garden path done, got the path from the front of the house to the back of the house and along the back of the house done, and started on the two raised beds in the back. The drought did a number on the vegetable garden, but I still have hot peppers to get me through the winter, as well as about 40 pounds of sweet potatoes. Every day has its small progress--it's small blessings. Amid the pain of grief, it is easy to forget the small delights of the first ripe tomato or the last wheelbarrow full of small rock. Come spring, I'll shape the front portion of Jane's memorial, run the gravel path along the south side of the house, build the strawberry beds and replant the blackberries and raspberries that did not survive the dry summer, and maybe build a wall or two. And maybe, in five years or ten, I'll have everything done and be able to settle into maintaining what I've built--both in the yard and on the other things I'm doing. More likely, though, I'll find something more that needs doing. Peace, Harry

Tomorrow, I head to Boston for two days of Visiting Committee meetings for the Dana-Farber Cancer Institute, starting with a reception for NET cancer donors tomorrow afternoon. I'll have both good and bad news for them. The bad news is the loss this summer of two influential patients who have helped shape NET cancer research and awareness. The good news is we've raised around $900,000 in charitable donations for NET cancer research at DFCI since early December of last year--and have a good shot at reaching $1 million by December 9. Last week, my youngest brother came to visit. We had eight days of walking and catching up and doing some photography projects. And a craft fair netted $75 more for the NET cancer cause Saturday night and let me catch up with some people I haven't seen for a while. Every day has a step forward in it--even days like yesterday where the depression came in waves all day: "You can't always get what you want; but if you try sometimes, you just might find, you can get what you need," as the Rolling Stones would sing it. I harvested sweet potatoes, onions and sweet and hot peppers and began to button up the garden for winter. I didn't get all I wanted, but there's enough there to keep me fed the next few months. There's a metaphor there that maybe fits my current mood. Sometimes it all gets to be too much--but we get what we need, even if it seems otherwise. Peace, Harry

There are few things that give me more delight than holding a new book created by a former student in my hand. For the second time in 30 months I had that experience today. Scott Baker's Traveling Asia arrived today. It's a collection of photographs from his travels across that continent over the last 10 years. They're all nice, but several are extraordinary pieces of photography. I think back to who he was when he walked into my classroom as a shy and terrified freshman almost 20 years ago and I smile. He financed his trips by teaching English to children in Korea. Now, he is training to teach English in Central America. I'm sure there is another book of photography coming from his new travels. And it makes me smile. Pax et lux, Harry

Great news today! 1. The #cureNETcancernow teams have raised over $129,000 so far for the Boston Marathon Jimmy Fund Walk. With money I know is still out there--and a little help from people who have not yet donated--we should end up with between $140-$150,000 for NET cancer research at the Dana-Farber Cancer Institute. 2. That money all counts toward our DFCI Program for Neuroendocrine and Carcinoid Tumors "3-in-3: The Campaign to Cure NET Cancer" goal and, with some other money we know is coming, pushes the total we've raised since December 9, 2015 to $850-$900,000 dollars. Our million dollar goal for the first year is within reach. 3. The amount officially raised by the #cureNETcancernow group puts us in second place among all the groups formed for the Walk. If we were a single team, we would have the third most money raised among all teams. 4. Shuffle for Dana-Farber, the biggest team in our group--with 161 members--has raised over $75,000 so far. The group totals 207 walkers total, spread over four teams. One dollar at a time, we are making a difference in the future for NET cancer patients by funding the daily discoveries that will lead to a cure. Pax et lux, Harry

Pics from tonight and from last Sunday's Walk.

We raised $3020 tonight for NET cancer research between dinner sales and donations. Yes! Pax et lux, Harry

Thank you all for our kind words. I probably need to be here more often, but life has gotten insanely busy between one thing and another. Next week is typical: a pamphlet to draft and design during the day and a fundraiser Monday night, house and yard work Tuesday, with a trip to the bank in there somewhere, two meetings in Boston Wednesday, tests on the nerves in my feet Thursday followed by a fundraising letter, theater that night, prep work for craft fairs later in the month on Friday, Cranberry Fest--relaxation--and theater Saturday, and some bookkeeping on Sunday with meal prep work for the week. People ask me what retirement is like and I have to tell them I don't know--that I didn't retire, just changed jobs. But I got the laundry done, framed and hung a new photograph, and changed the bed over to flannel sheets for the winter, today. I replaced the bedroom and dining room furniture this summer and am sleeping better as a result and getting more use out of the dining room than at any time since Jane died. My share of the furniture my father built arrived this summer as well, necessitating some revision of the layout in three rooms. Now if I could just get the cellar and garage cleaned out before the snow flies... I lost two NET cancer patients this summer who had become good friends--and have four others who are in varying degrees of significant trouble. It underlines for me that someone needs to be doing what I'm doing: raising awareness, raising money for research, and working as a patient advocate when it is needful. At the risk of being political, it has also underlined for me how desperately we need a real national health program. The things these folks go through financially and emotionally at the hands of insurance companies is heartbreaking. What I'm trying to say is that we all need to have work in front of us that has value. It doesn't make the pain any better, really, but it does create a constructive place for all that pent up hurt to go and provides a kind of respite where we can get out of ourselves and our needs for some hours at a time. I felt useless for so long after Jane died. Yes, I was doing some things that mattered, but I wasn't doing them particularly well by my standards. I'm still not running on all cylinders--on a good day maybe half are working at all--but it turns out even if you are moving just one grain of sand at a time, if you keep at it long enough and doggedly enough, eventually you can move a large quantity of sand. Tomorrow, we'll raise about $2500. It's not a lot measured against what will get raised in October for breast cancer--but it's $2500 more than we had before and will bring us to about $5000 for the last two months. And we've got a new drug getting approved next month that will buy some people some more time while we figure out how this particular cancer works so that maybe--someday--we'll find a cure and they'll get to watch their kids grow up to be adults. And we helped fund a new genetic study that turned up some really strange bits about this cancer that explain why this isn't like any of the cancers we've got even the beginnings of a handle on. So, yeah, some positive things are happening. And they warm my healing heart. Pax et lux, Harry

I arrived here a few moments ago largely by accident. What a pleasant surprise to discover this topic is not only still here, but pinned to the top of the page. I had hoped people would find it useful--and it seems people have--a nice positive thought on a day that has had more than a few difficulties in it. I'm not here much anymore--actually it's likely been nearly a year since my last visit. My wife's death, nearly six years ago, still feels fresh as the day it happened much of the time. But I have meaningful work every day that needs doing. I now chair a fundraising effort at Dana-Farber Cancer Institute in Boston that is working to raise money for research into the fundamental processes of the cancer that killed my wife--we are years from a cure, but that research is where a cure will come from. I continue as CEO of the non-profit I set up for the same purpose after Jane's death. I've undertaken some huge landscaping projects, gotten back into serious photography, walk regularly, and do what I can to help others. Eventually, I'll get a book written--maybe two or three--including the one on grief I started last December which threw me into a tailspin that took months to recover from. I taught journalism in a summer program this summer with an old friend, saw some plays, learned to laugh again. My life will never be the same--but then that is sometimes the point of being alive. Everything that happens changes us--and loss changes us more than nearly anything else. Losing your spouse not a good thing--it's the worst thing I've ever experienced. Whatever higher powers exist have a great deal to answer for. But I'm not done yet. Sometimes that's not a good thing. Sometimes it's not a bad thing. We can only keep moving forward or stand still and look backward. I prefer the former to the latter, though there are days all I can do is look back and wish for something different. I walked 26.2 miles last Sunday. The sun was out. My legs felt good and my mind became still. I listened to friends and strangers talking as we went along. I felt the world coming almost into balance for a little time. Afterward, I got off the bus, hobbled to my car, drove back to the hotel and slept well for the first time in months. Today, it is raining and raw. I'm still recovering, physically. But the wind is rising in my heart and in my mind. And perhaps, in another year or five or ten, I will sleep well every night. Until then, I'll keep looking for the positive moments that let me truly be alive. I don't have the time or inclination to wait for Death or wait for Life. I'm busy living--as Jane was, even to the last. Pax et lux, Harry

At last this morning, I found my camera and time in concert. Here is what the topiary looks like at this point. --Harry

Thank you all for your kind words. Anne, I'll try to post an updated picture once I finish a project I have in hand this weekend. Harry

Dear Friends, Jane would have been 61 today. She would have awakened to cards and flowers and gifts and a poem and breakfast in bed. Later, we would have driven to southern NH to look for Christmas presents and browse the shops. We’d have had lunch in a restaurant we stopped at whenever we were there, then travelled home for a quiet night snuggled on the couch. Instead, I went to the cemetery where her body is buried this morning. I left some mums there and a card and some tears. I was angry when I left—and sad. Five years is a long time to be in mourning. Five years is no time at all to be in mourning. I’ve lived alone a long time, slept alone a long time, cooked and eaten meals alone a long time. This weekend, I started cleaning out the basement. It is where I have stored the things I am not ready to part with. Yesterday, I took the collages of our life together off the walls in the living room and moved them into the guest room. In a few days, I will unpack the suitcase she took with her to the hospital five years ago. It is filled with the clothes she never wore and the clothes she was wearing the day we checked her in for her heart surgery. I don’t know why it is suddenly time to do those things—just that it is. Jane was born 61 years ago today. Five years ago, she celebrated her birth in a hospital room in cardiac intensive care. She told the doctors and nurses she had gotten a new heart for her birthday, even though all she really had were two new mechanical valves in the right side of her heart. The plan was for her to move to the step-down unit the next day. she was happier and moe upbeat than I had seen her in months. I should have known... That night, she had her first carcinoid crisis. her blood oxygen levels fell into the mid-80s, her blood pressure dropped. The doctors and nurses decided she needed a CT scan. But the scanner in the building had closed for the night. The closest one was in a nearby building on the eighth floor. Jane declared she was ready for a road trip—and off they went. The scan was inconclusive. Her oxygen numbers came up once she was back on oxygen. Her blood pressure stabilized. I stayed up with her all night and all day the next day. She was weaker than she had been, but she seemed to have turned the corner. I went back to the hotel and slept for six hours, checked out and moved my car to the hospital. I expected to drive home that night. I did not sleep at home again until after Jane died three weeks later. Five years later, my heart still bleeds. I get up every morning, I make the bed, eat, do all the necessary things from showering and shopping to reading and writing. Sometimes, as I work on this or that project I can almost forget that Jane no longer breathes, almost forget she is not simply out with her sister. Then I look up and know she is not there—that her body rests three miles away beneath her family headstone. And then the silence closes in and it is as if she died just moments ago.I debate moving periodically in the hope that some new place will not be so haunting. And then I remember my trips to Seattle since her death, I remember the nights I’ve spent in hotel rooms on one trip or another, I remember being at parties or dinners where the silence comes rolling in—and I know that where I live will not change this grief--that to leave here will only cut me off from the small joys of our life together here—only deepen my grief. I remember a friend who lost her father when we were still in junior high school. I remember visiting her home perhaps four years after his death. There may have been some pictures of her father in her mother’s bedroom—or in her own. There were no pictures in the public sections of the house. They did not surround themselves with memories. The house evolved. Perhaps that is what I am doing this week. Perhaps I am evolving toward some final acceptance that Jane is gone and that my life needs to be about more than her absence—and about something more than the cancer that killed her. Not that I have not done things other than deal with her death and her cancer over the last five years. But whether working in the garden, reading a novel or a biography, listening to music, or going out to dinner, a play, or just for a cup of coffee with friends, those things are never far from my thoughts. Nor will I give up the work against her cancer—I know too many people who have become friends who have NET cancer to walk away from that fight in mid-stream. It will die and I will have a hand—as big a hand as I can manage—in its demise. I owe that not only to Jane and the doctors who worked with her, but to every patient whose life has touched mine in the last five years. I have no illusions: I will grieve Jane’s death until the last instant of my life. But I need to define myself as more than the grieving husband—the grieving soulmate. The months from August to December have always been hard since Jane’s diagnosis and death. Every day holds a new trigger for grief. And this year their power is greater than ever before. The tears have come daily for the last week. My mind reels from memory to memory. Yet, in a part of my soul, I know that I am letting go of Jane in a way I have not done until now. I know she is reborn in a new body that does not remember the life we shared together, that is preparing for the new work before her. And I still have work of my own to do. It is work shaped by the work we had together, shaped by our lives and our deaths—and especially her death in this lifetime. I have pressed forward with that work despite her death and my grief, but my grief has kept me from doing the best I am capable of. I have moved forward but I cannot truly move forward until I come to terms with the fact she is dead—that I will never hear her voice again or feel her in my arms. I know it in my head but my heart has refused to listen. Or maybe it has.Beginning to clear out the basement was not a conscious decision. I went down to put the laundry in the washing machine and, having done that, started cleaning. Taking her pictures down in the living room was not a conscious decision—I saw a way to make the room work a little better by moving three pieces of furniture. When I was done, the collages felt too big for where they were. I took them down and moved them to the guest room without thinking about it more than what it took to do it. This morning, I knew it was time to unpack that suitcase—but it is in a closet I can’t easily get at. Once I can, the die is cast.Some time back, I wrote a piece about a topiary heart Jane had grown after we were married. It was the only plant that died while we were in the hospital. I discovered another ivy that had somehow survived the neglect that month in another pot. I salvaged the heart form and began a new topiary. This week the sprouts completed the form. The heart is but a single strand thick and not nearly as full and strong as it was—but there. My own heart seems in similar shape—returned from the dead and knitting together, though still far from what it was. If the heart is healed, can the soul be far behind? Peace,Harry

Pretty much, QM.

Congratulations Anne. And glad to hear the surgery went well, Mary. --Harry