(Editor’s Note: Jane’s birthday was on November 17. I have debated since then how broad an audience to send this to–or whether to post it at all. If you are uncomfortable reading about death and mourning, you may want to turn away now and read no further. But if you are a caregiver, what is here may matter to you. If you are a patient, it may help you understand what your partner faces now–and may face later.)
Road trip
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.
If the heart is healed, can the soul be far behind?
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.
Clearing spaces
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.
I was angry when I left—and sad.
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.
A new heart
I don’t know why it is suddenly time to do those things—just that it is.
I’ve lived alone a long time…
Five years ago, we celebrated her birth–and rebirth–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 what 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 more upbeat than I had seen her in months.
A different road trip
I should have known…
…we celebrated her birth–and rebirth…
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.
Raised hopes
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.
…she had her first carcinoid crisis.
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.
Dashed hopes
I did not sleep at home again until after Jane died three weeks later. I barely left her side.
The scan was inconclusive.
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.
Small joys–and constant reminders
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 barely left her side.
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.
An evolving heart
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.
…I remember…
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.
Touching hearts, mending souls
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.
The house evolved.
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–and every patient who will touch mine in the years ahead.
The cruelest months
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 soul mate.
…I know too many people…
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.
The heart of things
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.
The tears have come daily…
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.
When the heart begins to listen
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.
…I still have work of my own to do.
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.
The heart moves forward
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 without thinking about it more than what it took to do it.
…my heart has refused to listen.
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.
The topiary heart
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.
…the die is cast.
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?
Thank you for deciding to share this! I sense a peace and a renewal of hope that I haven’t seen in your writing since I began following your blog awhile back. As a NET patient, I’m grateful that you aren’t giving up your role in fighting this disease, but I’m also glad that you are moving on and beginning to heal.
Beginning to heal, yes; moving forward, yes; moving on, however, is unlikely to happen. That may seem a semantic distinction, but it is a very important one.