Category Archives: Holidays

Thankful? Perhaps. Terrified? Absolutely

I am thankful for the many former students and friends who have worked with Walking with Jane two raise money for NET cancer research.
I am thankful for the many former students and friends who have worked with Walking with Jane two raise money for NET cancer research.

Thankful for what is

I have much to be thankful for: I have cupboards stocked with food, I have a roof over my head—a heated home with comfortable chairs and a warm bed to sleep in. I have clothes to wear at every season of the year. I have friends who would walk to the Gates of Hell with me if I asked them to.

It’s painful to lose your wings…

Most importantly, I have my health. Yes, I have the aches and pains anyone my age experiences. Yes, I’m still recovering from the summer’s surgery. And yes, I’m still grieving the loss of my wife seven years after her death. But my mind still works and I can still walk a goodly distance at a pace that would leave many a younger person gasping at the roadside.

Thankful but pained

One night, when Jane was in the hospital and unconscious but still with weeks to live, I stood alone in the waiting area outside the ICU. I was looking out the window at the city beyond. But the city did not register. The cars in the streets below did not register.  My mind was in the room with Jane.

I have much to be thankful for…

I was always in the room with Jane. If I went to dinner in the cafeteria, my mind stayed with her. If I drove home to pick up clean clothes and pay the bills, my mind stayed with her. When the nurses sent me out to take an afternoon’s walk, my mind stayed with her. Truth be told, part of my mind has never left that room.

Memories and weights

I still see the early morning view of Binney Street from her window—the cancer patients pulling up to the door of the Dana-Farber clinic and walking in. I still see Jane sleeping in her bed, still see her not sleeping when the bouts of insomnia came on, still see the madness and anger in her eyes. But I still see the smiles, still feel her hand in mine, still feel the tears and the final brush of her lips as she died.

My mind was in the room with Jane.

But that night, standing alone, looking out over the city, the enormity of what I was doing came down on me like the world settling onto Atlas’s shoulders. I had two decades of conversations to rely on—and they were too slender to do more than be crushed beneath the knowledge that I really was at the point of the spear—and thoroughly alone. I had friends and doctors behind me, but the weight was mine—the decisions were mine.

Living with decisions and consequences

On good days, I know I made the best decisions I could, given the information I had to work with. On bad days, the guilt is overwhelming. Most days fall between those two extremes. I console myself that Jane’s death—like her life—made a difference in the lives of others.

…the decisions were mine.

Seven years ago today, Jane was in a coma. I talked with her doctor. I talked with a friend who had come up to visit. Jane had come through one coma already. Part of me said,”Enough. Let her go.” But there was hope, I believed, with the right approach and a bit of luck, that Jane’s desire to be the first person to beat NET cancer might yet be realized. I let them convince me the chance was good enough.

Thankful, but…

And for 13 days, it looked like the right decision. And then, suddenly, it wasn’t. If you’ve been in my position, you know what that feels like. If you haven’t, I hope you never do.

Jane was in a coma.

This is what it is to be a caregiver and lose the person you love at the end. You can have food, shelter, clothing and friends. You can know how thankful you should be for each of those things—and you are. You can have your health and know how valuable that is, and be thankful for that, as well.

The terror of the void

But there is this void you can’t fill—that you are afraid to even try to fill. At first, you give yourself altruistic reasons not to. “I would never want to put someone else through this,” you tell yourself. “I don’t want anyone to feel they have to live up to my image of the one I’ve lost—that they’d constantly be compared to an idealized memory.”

You can know how thankful you should be…

The truth is, you’re terrified. You don’t want to go through watching someone else you love that much die again. You don’t want to hurt like this again. You don’t want the responsibility or the guilt or the pain. You come to prefer the real pain of solitude to the potential pain of that level of loss.

The end of the world

The Mulla Nasrudin, a Sufi teaching master, put it best when he said there are two ends of the world. “The lesser end of the world is when I die. The greater end of the world is when my wife dies.” Truly, the death of one’s other half truly is the end of the world. I’ve experienced nothing more painful.

But there is this void you can’t fill…

Truth be told, I’ve had momentary crushes—feelings I’ve squashed nearly as quickly as they appeared. When I have thought women have shown potential romantic interest in me, I’ve been quick to drive those interests away–or into safer channels. I’ve never been particularly quick at picking those things up, so perhaps those moments were imaginary. But I’m terrified to think any of it might be real—and both my conscious and subconscious minds have proven quick to put a stop to any potential relationship beyond friendship. Even that, sometimes, frightens them.

Of wings and hearts

It’s not that I can’t imagine falling in love again. I hear Jane’s voice in my ear constantly, reminding me that part of that final Saturday conversation before she went into the hospital was about her desire for me to find someone else if she died—to fall in love again. But my wings were singed long before I met Jane. She healed them, made them strong again. But her death charred them back to cinders.

Even that, sometimes, frightens them.

It’s painful to lose your wings that way. It hurts like Hell to have half your heart carved out of you without benefit of anesthesia. That’s what grief is like when the love is strong enough. But I can’t live with half a heart—don’t want to live without my wings. Still, I remain terrified of what happens if they fully recover. And equally terrified of what happens if they don’t.

Christmas interlude, 2015

Oh, Christmas Tree

I took down the Christmas Tree today. I packed up all the ornaments Jane made over the course of our marriage and all the ornaments we had bought or otherwise acquired over 21 years of marriage. For some reason, it felt like I was doing so for the last time. I cried through it all.

The tears keep welling up…

This was my sixth Christmas season without Jane. Somehow, it’s been the hardest of all six. None of them have been easy. I barely remember the first one. I spent it in Seattle and the shock of it is etched into the family picture someone took at my brother’s house that year. I am a ghost in that shot. There is no expression on my face–no pain, anger or disbelief.

Numb Christmas

People tell me you can tell the seriousness of a wound by how much it doesn’t hurt. Minor injuries hurt like hell. Major ones induce a numbness that masks the seriousness of the situation. I felt nothing for a very long time. I went through the motions of life and anyone who has seen me in public these past few years could almost believe I am OK.

I took down the Christmas Tree today.

I’m a good actor. And the numbness helps me create that illusion. Say something funny and I will laugh. Say something sad, though, and the curtain comes down. I may continue to interact with the people around me but my mind is far away. It is the only way I have to deal with the loss that does not leave me sobbing endlessly on the floor. I don’t do that in public.

Christmas then

Christmas was a special time for us. Jane would spend weeks selecting a new ornament to make for us. She would keep the design away from me–not showing it to me until it was finished and ready to hang on the tree. We would wake up on Christmas morning about 5 a.m.–we were like little kids. We would go out to the tree and bring our gifts back to bed, where we would unwrap them, starting with the stockings.

Minor injuries hurt like hell.

We would have cocoa and warmed chocolate croissants after presents–these eaten in bed as well. Then we would get up and Jane would bake bread and desserts we would take to her parents for Christmas dinner. I would wash the dishes as she worked and do whatever other prep work she needed done–chopping onions or veggies or beating eggs.

Christmas now

I spent the first four Christmases in Seattle after Jane died. I would stay with my father most of the time. We would sit up late into the night talking about our wives and remembering better days. Then he died and, because Jane’s dad was not doing well, I spent last Christmas here. I sat with our tree and looked at the lights. I had tea with my croissant.

…we were like little kids.

There were no gifts wrapped under the tree, no stockings, no Christmas morning card. Nor were there this year. I baked bread, a Quiche, and an apple pie and took them to Jane’s cousin’s house for dinner. I came home and watched It’s a Wonderful Life and wondered what George would have done without Mary.

The end of Christmas

Normally, I would have left the decorations up until January 6. Now that I’m retired I can wait until then. Jane and I always took the tree down the Saturday before we went back to work–and always hated doing it.

…I spent last Christmas here. 

Last night, as I sat looking at the tree, I decided I would take it down today. I couldn’t stand looking at it. It reminded me of too many better days–days with Jane in my arms, days with her voice calling down the hallway, days when laughter was real.

Christmas tears

Part of me thinks I must be getting better. I wouldn’t hurt like this if the wound had not healed to the point that the nerves were coming back online. It’s what I tell myself. Maybe it will turn out to be true, this time. But the house is quiet tonight and I am alone. The tears keep welling up and running down my face. It’s been five years and 23 days and I’m still crying, still hurting, still wrestling with a loss I can’t describe or explain or escape.

…days when laughter was real.

Tomorrow, I’ll wake up and get out of bed. I’ll eat breakfast, exercise, and shower. I’ll take on the projects of the day, write the things I need to write, clean the things I need to clean, plan the things I have to plan. I’ll figure out new ways to go after the thing that murdered my wife in the hope I can somehow help to remove that arrow from Death’s quiver so that no one faces what she did–and no one faces what I have since.

Christmas reminds me of why I do what I do.
Christmas reminds me of why I do what I do.

End of year greetings and reflections

Time for reflection

Dear friends,

I face my sixth holiday season without Jane this year. I am not using “holiday season” to be either offensive or politically correct. Jane and I celebrated each of the festivals and holy days that mark this time of year in every faith and tradition. I still observe them all. I’d like to say it has become easier with time. It hasn’t–different, but not easier.

Have a blessed holiday season…

The end of each year is a time of both rejoicing and remembering. It is a time to look at the past and to plan for the future. I’ll spend many of the next days reflecting on the events of the year now ending and how those things connect not only to the past but also to the future.

A year of challenges

2015 has been a challenge on many levels. We lost my father-in-law, the last of our four parents, in September, one day before the ninth anniversary of his wife’s death. His body simply shut down over the course of about a week. His surviving daughter, Gail, broke her heel in the midst of that. Her surgery followed closely on her father’s funeral.

I still observe them all.

I also lost more than a few former students this year, the most recent barely two weeks ago. When people much older than me die, it is easier to accept. When a young person dies–especially one Jane and I held in our hearts–it is particularly difficult.

And I lost several friends I have made in the NETS community. Each one strikes me and reminds me of the urgency of the work I try to do every day. In my heart, I know I am doing all that I can, but I still wish I could find a way to do more.

A year of growth

Walking with Jane continues to grow in influence, if not in size. By the first of the year, we should have over 24,000 hits for 2015 on the website–an increase of nearly fifty percent over last year. We have directly generated nearly $95,000 in funds for research and awareness–though most of that money never passed through our coffers–and helped to launch 3-in-3: The Campaign to Cure NET Cancer at the Dana-Farber Cancer Institute in Boston on December 9. Next year looks likely to continue to build on those efforts.

…I lost several friends…

Personally, I’ve navigated some difficult waters this year. But I’ve also done a number of things outside of NET cancer I am pleased with. I taught for six weeks this summer at the New England Center for Investigative Reporting’s summer program for high school students at Boston University–a thing I thoroughly enjoyed despite the long daily commute.

I continued my ongoing landscaping and interior decorating projects, have decided to get back into serious photography–the one visual art I seem to have any small talent for–read more novels than I can count, pretended to play some golf, listened to some live music, and witnessed the completion of the initial loop of the topiary heart I restarted after Jane’s death. Tomorrow, they put enough solar panels on the roof of the house to generate all the electrical power I currently use in the course of a year.

A time to heal

I am not yet fully healed from the events of five years ago. Honestly, I don’t think I ever will be. But I am hopeful in ways I have not been for a very long time. This season of the year is about rekindling the fire in our lives and beginning anew the things that define us.

…a thing I thoroughly enjoyed…

I think I am ready for that this year.

I hope you and yours are as well.

Have a blessed holiday season–regardless of your faith or lack of it–and a glorious New Year. As a friend once put it: A year of new light–let it shine.

Pax et lux

Harry

This was th earth topiary heart completed its journey. My own heart continues to rebuild itself. Our original topiary art was the only plant we lost during Jane's time in the hospital. About two weeks ago, the heart I started shortly after her death finished filling the form. It is only one strand thick in most places, but one strand is better than none.
This was the year the topiary heart completed its journey around the mold. My own heart continues to rebuild itself–as fragile as the single strand that forms the topiary circuit, but growing stronger every day.

Starting points for grief work

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.

Thanksgiving memories

Awakening

I awoke alone in a hospital room on Thanksgiving morning four years ago today. I didn’t know what kind of day it would be because I didn’t know if Jane had survived the night. Her doctors had sent me off about midnight as they tried to calm her down. My very presence seemed to upset her.

…it is easy to forget that there is good in the world…

Jane had emerged from the first carcinoid attack two nights before following a 33-hour coma. She’d initially been angry to find I’d allowed them to intubate her but understood after I explained to her why I’d agreed to it. She insisted it come out as soon as they could do it and–against the advice of the hospitalist–it had come out Tuesday night.

The night before

But Wednesday, she’d become increasingly agitated. She tried to pull out the monitoring and medication lines and became violent when we stopped her. Her blood pressure, heart rate and respiration rose and fell like the stock market and a particularly volatile day. I tried to talk to her–to calm her down–but no matter how soothing I tried to be, everything I did just upset her more.

My very presence seemed to upset her.

I was doing no good and was, myself, becoming more and more frustrated. In the back of my mind the chorus of voices kept reminding me that I should have let her go Monday morning. I hadn’t–and this was the result. They had put Jane in restraints, but her body was still thrashing around in anger as they took me down the hall.

Sleepless in Boston

The doctors and nurses promised they’d come get me if they needed me or if things took a sudden, fatal turn. I tried to sleep, curled in a fetal ball on the too small bed in an alien space. I knew that if they came for me I needed to be able to make good decisions–knew I was too tired and frustrated to make them.

They had put Jane in restraints…

I didn’t sleep well, but I slept. They hadn’t come for me in the night. But that didn’t mean the situation had changed in a positive way, either. She might still be agitated and angry this morning–and part of me did not want to see that. I stared out the window for a few minutes, steeling myself for the worst.

Jane’s last Thanksgiving

Finally, I opened the door and walked down the hall. There were still people in the room with her but they were all calm. Jane was no longer in restraints. She turned her head as I came in sight of the door.

They hadn’t come for me in the night.

“I love you hubby,” she said as she saw me. She was wearing the biggest grin–the grin she used when she was really happy–the grin she had on our wedding day as we walked down the aisle and out of the church.

Then I was hugging her and all was right with the world.

Thanksgiving visitors

We arranged for Jane’s father and sister and a couple of friends to come visit that afternoon. Jen Chan, her oncologist, came by in the morning–having put the Turkey in the oven and leaving her husband in charge of it and her children–just to visit. It was the best Thanksgiving Jane and I ever had–even if all we had to eat together was a cup of broth for her and a bowl of pumpkin soup for me.

‘I love you hubby.’

It was also our last Thanksgiving together. Fourteen days later she would go into a coma for the last time. Thirty hours later her heart would stop and she would draw and exhale her last breath.

Giving thanks

I am thankful for that day, for all that the memory of it inflicts such pain now. I am thankful for most of the two weeks that followed–though there are moments in those two weeks I would like to forget. Her calm bravery still inspires me.

It was also our last Thanksgiving together.

But the Thanksgivings since have been empty exercises. I bake bread in the morning, as Jane once did, using Jane’s recipe. I’ll bake a pie this year, I think. I go to dinner, watch football, talk with Jane’s sister, aunt and cousins. This year, I’ll visit Jane’s father in a rehab facility if they don’t parole him for the day.

Thanksgiving pain

I’ll come home, at last, to the emptiness of this house. The remnants of the love we built here will try to console me but the silence will engulf everything. I’ll watch Miracle on 34th Street or It’s a Wonderful Life and they will drive the darkness back until I can sleep.

…Thanksgivings since have been empty exercises.

In the morning, I will decorate the house for Christmas. I’ll remember the years we did that together and be thankful I have those memories, be thankful I have the ornaments she made to hang on the tree, be thankful for all the blessings that remain from our 21 years, three months and eight days of marriage.

Reclaiming Thanksgiving

And I’ll be thankful for the friends who’ve helped me endure these four years of grief and who have helped me find ways to help others. I’ll be thankful for the roof over my head and the food in the pantry. I’ll be thankful for the doctors and the nurses who are still out there fighting injury and disease and for the researchers trying to find the answers not just to Jane’s cancer but to all the other diseases human beings endure.

…I will decorate the house for Christmas.

In grief and pain it is easy to forget that there is good in the world–and that the authors of that good are often other people like ourselves: mere wounded souls who yet hold candles in their hands to light the darkness regardless of the wind.

Happy Thanksgiving to you all.

Pax et lux,

Harry Proudfoot

Walking with Jane

I'm thankful for everyone who has walked with us and worked with us to end NET cancer. We will kill this thing, together.
I’m thankful for everyone who has walked with us and worked with us to end NET cancer. We will kill this thing, together.