goodbye to uncomplicated joy

When you take care of someone you love for a very long time, the world narrows. There's a distillation of your experience, a falling away of everyday things, and the world outside becomes another place - a place you no longer live. A place where people go to work and school and exercise class, vacations and concerts and parties; a place where people complain about roof repairs and back pain, ornery children and stubborn spouses; a place where people eat, drink, speak, and breathe easily, without a second thought. I took care of Mike in our own vivid and harrowing world for so long. It was soaked through with the pain of love, and the vision that love grants, so much so that I could often only participate for brief moments - I had to maintain my ability to function and so usually hovered at the periphery, while Mike in his profound courage remained open to grief - and grace - much of the time.

How often did I glance at him while the children were having fun, laughing over something absurd at dinner or watching a funny movie, and see tears in his eyes? He was already walking the path that was waiting for me. I now cannot see the end of it, let alone any variation in its rocky terrain.

I often sought distractions when we were traveling to Philadelphia or New York for treatment, or during endless waits in exam rooms. I always brought a book. I liked to listen to an audio book on our drives (the same one for months, Kristin Lavransdatter; I loved it but now am terrified by the idea of picking up where we left off). I would arrange child care or update family and friends via text in waiting rooms, or while we sat in the emergency department waiting for Mike to be admitted. Sometimes he napped; sometimes he was too feverish or uncomfortable to focus anyway. But usually he preferred to sit quietly and wait. If anything, he'd review notes and questions we had for the doctor. Once I asked why he seemed annoyed with me for reading a magazine - and honestly, the plentiful glossy magazines at the cancer institute got me through those first months of chemo and radiation; they were soothing, shiny reminders of the world outside that I then hoped was waiting for our return - and he told me that he would like it if we two could be shoulder to shoulder, holding hands, facing down the cancer beast all the time. That it seemed we were more likely to triumph if we spent all our available focus and energy staring it down, two warriors taut, poised, and ready on a battlefield, gazing at the horizon, waiting for signs of the enemy approach.

That's not a good way for me to cope with this day to day, I said. I need breaks, I said. I can't stay that vigilant; I'll fall apart.

I know, he said. I know you can't do that. I just wish you could sometimes.

Now I feel a pit of guilt when I think of that conversation, and of how little undistracted, focused time I gave Mike. I know I did the best I could. But I wish I could have done better.

I had to keep one unsteady foot in the outside world, where our children went to school and sports practice and music lessons, and where I sometimes worked. But Mike really did spend most of his time in the battlefield/monastery/hospital. His reality was the real, saturated, painful, heart-filled center of my life. Even though he did most of the emotional heavy-lifting, we both saw life as achingly precious, all the time, because it was so constantly threatened. We felt the fragility of sweetness: the adorable linguistic accidents that come with being three, a phrase played on the piano for the twentieth time, a fluttering bird at the feeder. All of it was so crushingly beautiful. During the brief times Mike could enjoy a spell of better health, he would sometimes get frustrated by how quickly he lost that cracked-openness to life's excruciating beauty. But Mike, I'd say. It's hard to live like that all the time.

Once we were talking about his probable death, in one of the rare times we were alone and I allowed myself to walk into that grief-space with him. I was sitting at the kitchen table and he was standing nearby in a flannel robe, pulling out his meds from the cabinet. In a fit of sorrow and despair, I blurted that if he died, I would live my life for the children. I would be for them. They would be my reason. He didn't need to worry; I'd take care of them. Because what else would I have?

And now I do live for them, it's true. But sometimes, surprisingly, I also feel the tug of my own unfolding being. I feel my own self asking for my attention and care.

But it's terrifying to want things just for me. Living my own life means actively signing onto a life without Mike. How can I want to keep putting one foot in front of the other, forging ahead, knowing Mike isn't alive here with me?

But I do. I want wonderful meals, and friends new and old, and fantasy yoga retreats, and good books and movies and music, and October hikes, and generous glasses of wine. Some of these are things I would not pursue with my husband, because he wouldn't enjoy them. Some he would absolutely love. Some are things I want because he died and I feel an urgent need to tend to my bottomless grief. In any case, the wanting them, and the doing them, are all colored by the loss of him.

Everything shines brighter, more ragged and raw, through the eyes of grief. Everything from my morning coffee (he would shudder to see how sloppily I make it) to the disappointing session at work (I can't tell him about it) to the unbelievably difficult and stressful house-selling process that was supposed to end at settlement this past Friday and is still unresolved (he would be screaming - throat cancer or no - to the powers that be at the title company and realty firms).

I can't join the outside world after all, because I still live outside it. Once I spent my days in the intensity of caregiving and medical management and parenting with a gravely ill partner; now I live in the pure, searing intensity of mourning.

Nights are terrible. I can't give up and go to sleep - I seem to be waiting for something to change. Waiting to end the day differently, somehow. Waiting for Mike, I guess. Mornings are equally bad. Seven months later, waking up in the still darkness without my husband is a real bitch. But a lot happens in between these sorrowful bookends. They frame and put into relief the miraculous nature of creation that reliably shines into my days. Colors are more vivid; feelings more powerful; autumn's beauty tears through me with a relentlessness that seems almost cruel. That light! That golden late afternoon light illuminating the bricks and tree limbs of downtown Lancaster. It hurts me. 

We're in a new house that Mike never shared with us. We're creating new routines. We're trying to be honest about asking for the support we need and we're trying to receive it graciously. We fight and cry a lot. We're basically fumbling around in what some people have called "our new normal." Good God, do I hate that phrase. There is nothing normal about this.

Yet there are many good and true and beautiful things in our lives, and I open my arms to them knowing that the pain will twist and pinch even more. Every joyful thing must be greeted in the light of my love's absence.

I cannot say no to joy; nor can I ever feel it with the pure simplicity I once did.

Mike died, and nothing will ever be the same. How could it be? And yet I miss the irretrievable, normal, outside world - and our place in it - so very much.

my life is too hard for me today

Here's what I want to do: rant.

Swear and rant. Rant and swear. Fuckety fuck fuck.

I want to tell you about my too-hard day, my too-hard week. I do recognize that people in Florida have lost their homes, that Brett Kavanaugh is now a Supreme Court justice, that there are families in my city that don't have enough to eat tonight. I know. It's just that I'm having a Melania moment. I hear she is the most bullied person in the world. Yes. Exactly. And I, it turns out, am having the hardest week in the world.

It started with my final visit to our house in Annapolis, the last place Mike was well, the last place I lived in which I didn't have to ask friends for help every other day. I was collecting the last pieces of furniture before the settlement next week. I asked three friends to help me on the driving/loading side, and three more friends to help me back in Lancaster on the unloading side. I found a picture of Gabriel, aged three, in his Halloween costume in the garage. I found the hand weights Mike got for his thirteenth birthday. I said goodbye to the house.

It was a challenge to fit everything into our new place, which continues to feature chaotic disaster zones that are beginning to make my skin crawl. If I leave a box full of the contents of Frances's desk when she was nine in the corner of the kitchen, it remains in the corner of the kitchen. If anything, it grows, as other things are gradually placed on top of it because there is nowhere else to put them, things like a basket of scarves, a box of framed pictures, and Mike's old Latin textbooks. Because I am the only person who will ever move them. Because this big pile of bricks filled to capacity with stuff is my responsibility. People occasionally see me and say, congratulations on your new house! And I say ...huh?

And then they cheerily say, so how's the move going? Are you all settled in?

And I say, well ... no. No I'm not. And I want to add that it's unsettling as hell to live in a jumbled museum of our family's history where nothing seems to have a proper place yet, where reminders of the life we used to live are everywhere. No object has become part of the landscape yet, so all of it retains its power to recall past times and places with a vividness that scrapes at my insides. The Freiman Stolzfus print I gave to Mike for Christmas six years ago is resting on my old dresser, propped next to the Fra Angelico Anunciation that I hung opposite Mike's bed in our last house while he was hospitalized at Penn last December for his stem cell transplant. It was part of my Christmas present for him: making our bedroom a more beautiful place in which he might convalesce. I remembered how he loved that image, how we both did, when we visited San Marco in Florence during our extended traveling honeymoon. Two small images lean against a white wall opposite my too-big empty bed, but they stir up many stories: everything from our honeymoon to a Christmas years ago when Mike was healthy and Beatrice was growing inside me to the torment of Mike's near-month in the hospital and all the emergency rides back and forth between Lancaster and Philadelphia to the site of the Anunciation hanging above Mike while he sat in the orange chair and I set up the IV tubing on the floor at his feet every afternoon, leaning my head against his bony knee while I primed the pump.

So this move is just killing me. I am brittle and short-tempered with the kids, who are less independent than usual because they don't know where anything is or how anything works. My patience has bowed and broken under the weight of all these damn boxes. I repeat phrases with increasing irritation and volume to the disoriented children as if they were tourists who didn't speak the language and I a rude native.

The guitar picks are on the blue shelf. The BLUE shelf. They're on the BLUE SHELF. The BLUE SHELF. THE BLUE SHELF NEXT TO THE PIANO.

Finally a bewildered Gabriel will ask, but which blue shelf?

All I can muster is one more useless bellow. THE BLUE SHELF NEXT TO THE PIANO.

I harangue them; they protest. They don't want to do chores; they don't want to practice their instruments; they don't like it when I come home from work; they don't like it when I go to work. They don't like it when I cry. They don't like it when I make whole wheat pasta for dinner, when I ask them to scoop the kitty litter, when I get mad that they still haven't taken the books on the stairs up to their rooms. Beatrice doesn't like it when I have to interrupt bedtime reading in order to help Frances find a new place to plug in the keyboard because the piano tuner hasn't called me back and she needs to practice. Gabriel doesn't like it when I make him come home from his best friends' house, where he'd much rather live, because their parents are nice and fun. They don't like it when I'm texting when they want to talk to me. No one likes it when I ask one kid to stop talking so I can hear what the other one is saying. No one likes it when their homework was left outside in the rain and is all smeary and ruined and all I do is calmly suggest seeking out a hair dryer. When I asked Beatrice if she would please take out napkins and put them on the table before dinner tonight she said no.

Beatrice. Please put them on the table.

And do you know what she said then? My loose-toothed, dirty-footed, book-loving, Abba-singing kindergartener, while rolling her gorgeous blue eyes with adolescent flair?

Oh fine. Fine, Mama.

Sometimes people tell me my kids will look back and admire me for all this. That they will see what we went through and how I took care of their Papa and them and they will really, truly appreciate how hard it was. They'll see how much I loved them and love them still.

But I don't know. I fear I am not being the mama they need right now; why would they look back with admiration? I fear they will resent me. Stay mad. Because what if I stay sad? Having a dead Papa and a sad Mama is no good way to live, especially when you're a kid.

I'm sad and I'm stretched thin. I go to work and wash the dishes and feed the cats and arrange transportation to lessons and look for all the paid house-related receipts to scan and send to my realtor in advance of the closing next week and pay the bills and wash Beatrice's hair and lock the doors at night. It's so fucking hard.

I can't be all the things they want. I don't even know if I can be all the things they need. I wish Mike were here.

libraries on planet widow

After work on Friday I closed on our new house. On Saturday, with the help of strong friends, we moved everything from the house we were renting to the new one. On Sunday, I met movers bright and early at a storage unit where everything from Annapolis has been patiently waiting for me and spent the morning and early afternoon directing them. They kept bringing things in the open front door, and I kept feeling waves of surprise and delight to be reunited with so many old friends: oh, the crazy quilt is here! the piano! the beautiful shelves!

And the books. Boxes upon boxes, stacks upon stacks. Mike's office on campus, his home office, and years of acquisitive impulses that went unchecked in used bookstores everywhere we lived were spread before me. It was impossible to walk in the room where I kept directing the movers to deposit them all.

The more I unpack, the more there seems to be, sliding in small hills and stacks all over the floor, and tucked in between them are Mike's notebooks. He nearly always kept an intellectual journal, which sometimes served as a personal spiritual journal too. Rather, his philosophical passions seemed to be expressions that sprang from a bottomless well of spiritual yearning. Mike journaled to work out things like his intellectual development in relationship to figures in Continental philosophy, the nature of his belief in God, what exactly Thomas Aquinas was getting at in a particular subsection of the Summa Theologia. In another time and place he'd have made an exquisite Talmudic scholar. He had a restlessness for the truth that propelled him through stacks of notebooks. The very slant of his handwriting suggests urgency.

And now I have them all. So I shelve three books, and then I open a notebook, scanning for something personal, something about me. Did I figure in his imagination? Did our daily life together touch any part of his thinking life? There are a few passing references, but not much. Flipping through the notebooks stirs up feelings about a pattern in our relationship that at times left me feeling uncomfortably like a demanding child. I'd look to him for recognition; he'd look to his books.

So I'm feeling all those feelings. And I'm finding the book of Emily Dickinson poems I gave him, and  the Lorrie Moore short stories we both loved, and the set of Narnia books my grandfather gave me in the second grade that Mike read aloud to Frances and then Gabriel. And then another peek in a notebook. Still obsessively single-minded about the nature of God, the universe, and your relationship to it all? Yep. Okay, just checking. And then back to the books, taking a few to the front porch for passersby to take, setting some aside to move to the children's bedrooms, picking them up, putting them down again, tripping over a pile, stroking a cat's ears, picking up another notebook - basically making little to no progress at all and spending the last moments of the portion of my day off from work while the children were still at school doing exactly what I wanted to be doing.

Then they came home. I told them to quickly get themselves a snack, not even looking up from a Thomas Merton book that Mike had penciled notes in, because it was almost time to go.

Oh no Mama. Don't make us. We won't do it. Why, why?

Because we're just going to try it, I mumbled, still picking up and putting down books in piles at my feet.

But a support group?? We already have a support group. It's called all our friends and family. Everyone who loves us. AND SUPPORTS US!

Well, this is different. And it's just an assessment, to learn more about the group and for the people who run the group to learn more about you. We're going to see what it's like.

And so I gathered my groaning children into the car to be assessed for the Coping Kids and Teens bereavement support group at the Pathways Center for Grief and Loss that is housed in the same buidling as the inpatient hospice that we made plans to transport Mike to the very morning that he died.

We were ushered into a library space to wait for the counselors and encouraged to peruse and if we wanted, check out one of the books. The impersonal "peaceful" music playing, the hum of the air conditioning, the quiet halls, the tasteful furniture - the combined effect set the four of us on edge. Of course I tried not to show it. Each child reluctantly took a turn speaking privately with a counselor and so I spent over an hour and a half in the library, glancing over all those spines and the neat labels below each section: Children's - Religious, Loss of a Pet, Illness and Loss, Caregiving and Grief.

This was not my library. These were not my books. I was afflicted by the strangest sense of disorientation. What the hell was I doing in this hushed room full of books with titles like Planet Widow while my children were being evaluated for placement in a bereavement support group? Did Mike die or something? Did any of this 'nice nice' stuff, as Gabriel might call it, have anything to do with me, with my family, with my reality? Whose idea was it to come here anyway?

While Mike was sick, he and I sometimes acknowledged - no, confessed - how uninterested we were in fundraising efforts like Relay for Life, encouraging friends to support the Leukemia and Lymphoma Society, or identifying in any way as a cancer patient. What did that even mean? We suspected it was pride getting in our way. Mike's disease was rare, our experience was unusual - our situation was different. How could the word cancer somehow communicate something essential about Mike or our family? We didn't want cancer support groups, or to hear other people's stories about their uncle's triumphant ten year battle with colon cancer, or to read books about how to help kids cope with cancer. We just wanted to muscle through it in our own way.

Was that hubris? I don't know. Would Mike be on the kids' side (and truth be told, my own private, fearful side) with the whole grief support group thing? I don't know that either. Probably not. He'd want them to know they weren't alone. He'd want them to be given the space to mourn in their own way, apart from the pressures of school and family and incredibly stressful house-moving. I know that.

Sometimes when I find myself and the children in social situations that are stretching our limits (and that I, of course, have pushed us into), I let Mike's spirit come to me. I can almost hear him say, as he so often did in life: Meagan. Let's get the rock out of here. And that's how I know it's fine to leave. It's fine to walk right out of Vacation Bible School with Beatrice, six minutes after signing her up. It's fine to leave a party early. It's fine to get ready for and then decide against attending a school function. I don't always do it, but I know I can, thanks to Mike.

Mike didn't suggest we split while I was waiting in that grief library. I noticed. I'm not sure if we'll do the group yet, but I think I'm glad we went today.

It's good to try. And it's good to know you can leave.

And it's really good to come home to your books. All of them.