Loose Strife

There will be a funeral service at St Joseph’s Catholic Church in Shelburne Falls this Saturday morning at 10:30. (Update: music before the service will begin at about 10 o’clock.) A musical program will precede the service. A burial in Ashfield at the cemetery across from the preschool and reception will follow at our house.
Although there will be a mass, everyone is very much welcome to the service. (I’m not Catholic, for one.) In addition to the traditional service there will be some lovely music performed by a friend of ours, so I think it will be a beautiful service. Laura was particularly concerned about accommodating children and she wanted everyone to feel free to bring their children; you should know that kids can play outside or in the basement below the sanctuary if they are restless, and that Catholics, in general, are very accepting of low level disruptions during services. (Weekly catholic mass is a notoriously casual affair and kids are an ever-present part of the mix.) If there is interest, parents might even coordinate an impromptu child care, but I’ll leave that to others to work out the details at that time.
The burial will be immediately afterwards and everyone is welcome, although for those who don’t want to attend I still want to very warmly welcome you to our house for a reception! I would very much like to see everyone and I am certain that Laura’s family will be touched to by the breadth of love and support among all of you. Many of you remember that Laura and I hosted a party at our house at this time one year ago — the same weekend again as the Ashfield Fall Festival. Hopefully the weather will cooperate and we will have another fine day for the kids to play and the grownups to chat.
Many people will be coming from out of town and I’ve already been told that vacancies are scarce in the Pioneer Valley, presumably because it’s a holiday weekend and the trees are starting to turn. Hotel chains can be found in Greenfield, Deerfield, and Northampton. There are other smaller places in the hilltowns and more hotels further afield. Maybe someone can add some pointers to the comments with additional suggestions. In addition, I ask that any friends in the area that have room to spare to please email me and I’ll initiate some match ups with out-of-towners that don’t mind sleeping on couches, etc.
Of note, for the many old school friends from Laura’s youth who are still in the Northern Virginia area, we will have a memorial service later this year, probably around Thanksgiving, at Laura’s family’s church in Annandale.

When I was sitting with Laura yesterday, I was playing this song in my head:
“Oh it’s a long, long while
from May ‘till December
And the days grow short
When you reach September.
When the Autumn weather
turns the leaves to flame
One hasn’t got time
For the waiting game.
For the days dwindle down
To a precious few…
September…November…
And these few precious days
I’ll spend with you.
These precious days
I’ll spend with you.”
“September Song” by Kurt Weill & Maxwell Anderson
-Heather

Play this music.

Tell me what you see in her eyes.

This morning I had to break the news to my daughters. Naomi responded with textbook 3-year old comprehension about death.
At one point when I explained that Laura’s body would be taken to the funeral home and later we would bury it in the ground, Naomi said, “but not her face.” “Yes, her face,” I said. “But not her eyes,” she said. “Yes, even her eyes.”
Tonight as we were washing up, Naomi ran into our bedroom, returned, and said, “I said 1 2 3 magic, but Mommy didn’t come back.” And then she paused, her eyes lit up, and she said “I know what we can do!” in that airy, tiny but confident Naomi voice that many of you know. “What if we all say 1 2 3 magic together? Then she’ll come back!”

Laura Kathleen Coleman Kulp, mother of two precious girls, wife, daughter, sister, and friend to so many far and near, died early this morning. She is, at last, free from pain and suffering. I miss her terribly.
I’ll write more later. Much love.

Thank you to so many of you who have commented here or emailed recently. It is humbling and comforting.
Laura’s parents and all of her brothers and sisters, Heather, Elena, PJ and Justin, are here with us now. I truly cannot conceive of a worse fate than to lose your child and I ache for Natalie and Joe so much. Her siblings are so very close and this is terribly painful. Please pray for all of them as we wait.

When Joe asked one of the hospice aids today what more we could do for Laura, the reply was “permission.”
Laura is tenaciously hanging on. It is very hard to communicate with her, but when she is awake she often gesticulates dramatically with her hands (my favorite is when she did air quotes) and speaks a lot even though we can’t understand her. When someone unexpected appears she suddenly moves, reaches out, tries to sit up to be attentive, and “talks.” Sometimes she responds when we ask her questions. About once a day she’ll have a spurt of energy and awareness and will rise up and start walking (with much assistance). Yesterday, in fact, she headed to the top of the stairs and so we brought her downstairs for a while where she sat at the table for maybe a half hour while she nervously paged through a book, picked at crumbs on the table, and drank a few gulps. (I took some extended video of her as I have done frequently in the last three weeks, although I don’t know if I will ever want to watch it. Probably too morbid. But I have this desire to keep her alive on film.)
She has been very agitated and her arms jerk regularly. Repeatedly she has nervously removed clothes while lying in bed. I gave her a soft ball to squeeze to try to calm her hands. She hasn’t much slept for at least 48 hours. It seems like she is unconsciously fighting death by fighting sleep. Or more generally, she’s unconsciously fighting to maintain control. Sometimes when I understand a word I can make a leap to link it to a sentence that she might have normally said and it usually seems to be associated with some part of day-to-day life that she’s still trying to keep track of: taking care of guests or asking if there are any appointments, for example.
It would be nice if there were an easy way to tell her not to worry, that everything is under control, that she should relax — for good. But I don’t know what it is.
I became so exhausted myself responding to her through the last three nights that last night Joe, Natalie, and I took shifts being with her. But finally this afternoon Laura fell more deeply asleep and she still appears to be sleeping soundly now, interrupted only occasionally by a still very strong cough. I hope she sleeps well.

The night before last (Saturday night) I began to write this post with

Laura’s condition no longer seems as dire now as I felt several days ago when I wrote last. She has a remarkable ability to move about the house, sometimes rather quickly with her walker, considering that she is consuming not much more than 30 ounces of fluids per day — maybe 200 calories — if she’s lucky and keeps this small amount down. She is now very gaunt and I wonder how long she can continue what seems like wasting away. But despite the continued weight loss, tiny appetite, and slow weakening, I feel like she will continue to hang on for a while — for the better, I hope.

I was then going to write another long piece about the mental aspect of dying, specifically how I was surprised and upset to see Laura losing touch. A senility of sorts was setting in: a lack of ability to keep track of time, a proclivity to wander down incongruous tangents. It is so upsetting because it becomes apparent that the love of my life is not going to leave me soon, but has already begun.
I am not consoled by the thought that Laura suffers less as a result of her lack of awareness or her apparent loss of emotions. Maybe it’s true, but I think it’s equally conceivable that she might be deeply troubled by her losses (I mean deeply in the sense of a fundamental conscious awareness) and that it could be even more painful because she can’t articulate, even in her mind, what is happening. It made me think of the name of this blog — how the play on words was meant to suggest a balanced approach to our lives’ foremost challenge — that we could try to leave the unnecessary troubles and struggles behind and focus on a few key concerns, namely family and Laura’s health, in a way that we hoped would maximize quality of life during the short time that she has. What I didn’t consider was how “loose strife” might be thought of as “letting go” in a slow and unknowing way — as I now see Laura.
Anyway, that’s about where I was in my thoughts and writing when I left the computer late last night, too tired to continue to type. And when I walked into our bedroom in the dark, Laura immediately stirred as though she was quietly, restlessly waiting for me to come in. I found her awake. She sat up, lay down, got up, and was clearly agitated. She was almost entirely unintelligible and when I could understand her mumbled whispers it was wildly incoherent. She stared into the darkness across the room and asked, “who is that there?” There were words associated with guests, snow, play dates, art projects, books, family, and many others. She could hardly walk with her walker. When I took her to the bathroom, I stupidly waited for her in the doorway and as she stood in front of the toilet I watched her fall like a tree backwards, smacking the back of her head. She wept in pain, although she was not seriously hurt. I sat by her for an hour as she lay in bed picking at the blankets or sat on the side of the bed and stared, squeezing my hands tightly. When she sleeps it is fitful and her eyes remain half open; her breathing is sometimes punctuated by gasps and other times she talks in the dark.
During the day today it has been the same — a little worse at times. Somebody sat with her almost all day. A hospice nurse came and adjusted medication. We talked about logistics were she to die. The nurse said that she couldn’t predict how long Laura would survive because Laura was young, so she was fighting it and working through so much in her mind, as any of us would naturally do. The last 24 hours were not the slow, unknowing, tranquil “loose strife” that I had perceived before.
And so Laura’s condition now seems more dire again. She finally fell into a more sound sleep early in the evening, but as I write now, well after midnight, she fidgets frequently, coughs loudly, and whispers.

Over the last week Laura’s condition has not improved and in some ways has worsened. The upshot is that although she usually has a burst of energy about once a day, she spends the vast majority of the day resting and is no longer eating very much. Laura won’t be taking the trip to California this week. Instead she and I have come to accept that she’s at a new stage where I can let her comfortably rest without attempts at heroics to reverse the course of her disease.
A little more than a week ago, as I explained in a previous post, Laura had a surge of energy and was still conflicted over the stance to take regarding her treatment. We had met with a new doctor last week and that meeting revived topics for aggressive management such as radiation, feeding systems, and so on. But this week has been a quiet, resting week for Laura and we’ve come to believe, in consultation with her oncologist, that new treatments or invasive “life saving” choices are unlikely to reverse her decline or improve her quality of life.
Today I changed Laura’s “code” to DNR (do not resuscitate). It sounds like a dramatic step, but at this point it is just a practical and obvious formality. We don’t need ambulances and paramedics rushing through the house.
Laura’s days now are spent mostly sleeping and she eats and drinks very little. It’s how her body is naturally shutting down, and she’s OK with that. Until today I had been very worried that I needed to ensure that she maintained some minimum required inputs according to some standard of care. But that’s not the case and Laura can direct what she comfortably wants to consume. She still is throwing up, which is an unresolved problem, but she usually can keep liquids down.
Laura’s pain is not a problem while she’s still, but she has back pain that is sometimes very bad when she moves or coughs. So today her morphine pump was adjusted so that I can give her a big extra injection before she gets out of bed. Her coughing is due to fluid in her lungs, which is there probably because her lungs are no longer strong enough to clear them normally. So today she also got a special patch that inhibits secretions into the lungs and should help dry her up over the next few days. (I’d like one with my next cold.)
Remarkably she continues to manage the stairs on her own, but climbing back up is increasingly difficult. However, for a couple days this past weekend, she remained in bed upstairs and rose very infrequently. On Sunday she had no sense of the passage of time. This was particularly sad because we had a potluck at our house with about a dozen families, but Laura didn’t want to wake or rise and didn’t know what was going on even when reminded repeatedly. I fed her drops of juice with a child’s medicine syringe. At the time I worried that it was my fault because I had let her take a sedative that morning (because she was complaining of not sleeping soundly) and that may have really knocked her out — and missed perhaps a last opportunity to see many of her friends. The nurse thinks my theory is unlikely because Laura takes the drug regularly, although not daily, and her body quickly adjusts so that extreme response is unlikely. I hope so. In any case, I saw it as a new ebb for her (from which she’s improved since) and it made me more convinced that she was moving into an “active” phase of dying. Her oncologist agrees. I invited Laura’s parents to come up. Joe and Natalie will be here this week.
So that’s where we’re at. Laura continues to surprise me almost daily with periods of impressive stamina. (Just now, as I’m getting the kids ready for school she suddenly sat up and said, “What am I supposed to be doing?”) It makes me momentarily hopeful and for a while I question my dire thoughts and the tone of my conversations with her nurse and doctor. Yet for the most part, I’m comfortable with how she’s being treated and Laura seems to be, too. Admittedly, Laura and I don’t have deep conversations about any of this now. It’s more leading questions from me, a nod from her. But I’ve asked her several times whether there is anything that she’s concerned about or wants me to address with her doctor and she has said no.
The girls are mostly well. Naomi seems almost completely oblivious. Lily remains terribly anxious, but doesn’t want to confront her fear and I’m sympathetic. Lately Laura has thrown up conspicuously in front of the children several times. Naomi pays no attention. Lily covers her ears and watches from behind a door frame or corner wall. Tonight, while Laura vomited at the dinner table, Lily said, “I want Mommy to stop spitting up.” Lily said that she doesn’t always throw up herself when she’s sick. I reminded her that cancer was causing her to throw up, sleep all the time, and walk poorly. She cried a little, sucked her thumb, and hugged me for a while. On Sunday Lily watched me using the syringe to feed Laura and she heard Laura repeat the same questions without presence of mind. “Mommy is being funny,” she first laughed and she asked if she could drink from the syringe, because, of course, it looked like fun. But soon after as she went to bed it was obvious that she knew things were bad. She cried, but would not let on what was upsetting her partly because she can’t articulate it and partly because she is more afraid when it is put in words, I think. I sat with her for over an hour until she finally fell asleep.
For a few days I worried strangely that Laura’s sickness was now so common to the girls that Lily wouldn’t recognize that Laura was dying and her death would be more of a shock as a result. I think now the truth is that Lily is aware, but that Laura’s death will, of course, still be a huge shock.

I’m not sure why I’m writing these days. Or not. I’ve been too busy, too tired, and not very motivated to write. During the day, if the kids are at school, I’ve been outside keeping the woods from encroaching into my fields, or running errands. When the kids are home I spend my time feeding, refereeing, bathing, dressing, reading. After the kids are in bed, I often work with Laura to get her fed or washed up. Then I’ve got dishes and the like. And then it’s well after 10 o’clock. I think about writing a blog post about what’s going on with Laura, but there’s so much happening at different levels that I can’t decide what I really want to say. The story piles up as the days proceed. And I don’t really like the idea of writing a lot of bad news to helpless, hopeful readers.
I’m not complaining at all about my routine. I’m just explaining why I haven’t written for a week. Indeed, I want to say how incredibly fortunate we are and how light in many ways our burden is — with time and resources and help from so many to spread the weight. Every time someone asks me, “how are you doing?” I think about where I am among the imagined levels of suffering and I pause because I know, relatively speaking, it’s easy going. My wife is dying of cancer. But there are the metastatic cancer patients who are single parents, who are sole bread-winners struggling to meet financial needs, who have no or poor insurance, who are alone. Life sucks. But I really don’t have anything to complain about.
Yesterday I was listening to a radio program about children of guardsmen serving in Iraq for years on end and I thought that’s hell — an achingly slow emotional separation from your father or mother, coping with the daily fears of war inflicted on your parent. And that’s just minor suffering compared to those living inside war zones, those desperately hungry, or those struck down by the truly horrendous afflictions.
No, Laura does not have ebola. Instead, she is buffered by the most generous community of friends imaginable and by a big, deeply loving family that means everything to Laura and that has responded by giving everything in return. Instead, we live in a slice of paradise on earth where the land cradles and the people embrace. Instead, she has weathered the tidal progression over the last 14 months and repeatedly caught the breaks to lap up the luxury of a simple life of family and beauty in both the grand and small. Instead, she has skilled doctors and nurses that come to her door and comprehensive insurance that has never balked.
And still, Laura is dying of cancer and for her it’s an awful mix of sadness and pain; it’s a miserable, grievous, unjust stab for me, our children, her parents, brothers and sisters, and all the family and friends who love her so much. It is wounding. It is both personal and far reaching.
If this is modest suffering, but still so painful, then the sum agony in this world is beyond comprehension. if this is modest suffering, but still so painful, then there can be no justice. If this is only modest suffering, but still so painful, then the mercy you plead for us all has fallen on deaf ears.