Wednesday, April 27, 2016

November, 2013: Angels Among Us

I have seen them everywhere.  Shuffling in the parking lot at Trader Joe's; taking slow, careful steps in the library; sitting in the audience at the elementary school chorus concert.  They're mostly women although that may be coincidence.  They are ghosts of themselves, with their thinning hair and translucent skin, barely hanging on to their husbands/children/sisters.  Their effort to remain in the world is almost too much to bear.  I can't make myself look at them because they envelop so much loss.

We began losing my mother much more quickly than I expected but exactly as I feared.  She spent 7 long weeks undergoing intensive chemotherapy in 2011.  We celebrated her birthday the first weekend she was admitted.  Celebrated is not the right word - although we tried.  When I left her, I hugged her harder that I was ever able to hug her again.  I was afraid of the word chemotherapy; afraid of what it would do to her.  I was afraid I would never see her again.  She hugged me back and told me it would be okay.  She was never the same.

Because I lived two hours away, I spoke to her a lot on the phone during those weeks in the hospital.  She remembered a lot; she always knew who I was and asked about Duncan and Jamie.  She also talked about the who were keeping her imprisoned in that place and how poorly they treated her.  I couldn't tell if she really believed she was being held hostage or if she was using a metaphor.  She talked about the clouds in the corner of the room and sometimes about the angels.  The same mother who raised me to be a card-carrying, devout agnostic...We began to develop our sense of dark humor as we knowingly spoke of "chemo brain."  Sometimes, it gets better after the treatments end, and sometimes it does not.  I imagined a complete recovery followed by five years of remission and counted to five obsessively, wondering where we would all be in five years.  I really believed we would have five more years with her, and even though five years is really no time at all, it can be a very long time if you spend it well.  It would not, in the end be five, but you see how those fives add up, optimistically, when you count them over and over by five.

Almost two years to the day later, I held her cool, fragile hand, kissed her forehead, and smoothed back her beautifully white, baby fine, angel hair.  My father and sister were so much better at managing the entire hospital experience than I was.  I was so afraid, already drowning in the weight of loss.  I was still learning to just be there together in the moment.

I met my friend Laurie shortly before she lost her own father and before my mother was diagnosed with leukemia.  In his final days, her father had taken to carrying these silver angels in
his pockets.  He gave them away to everyone he met.  After he was gone, she continued to find them everywhere.  Stacked in her son's room, on the windowsill, under the bed, next to the socks...she gave me one of his angels, and I have carried it in my wallet since.  I pull it out from time to time and stroke it softly, adding three, subtracting two, subtracting 2011 from 2016, smoothing away the years before and the years after.  Always, we end up here, today, where literally everything is different, and we are learning to rebuild life in the shadow of loss.

I see them everywhere.  Shuffling in the parking lot at Trader Joe's; taking slow, careful steps in the library; sitting in the audience at the elementary school chorus concert.  They're mostly women although that may be coincidence.  They are ghosts of themselves, with their thinning hair and translucent skin, barely hanging on to their husbands/children/sisters.  Their effort to remain in the world is almost too much to bear.  I want to hold their cool, fragile hands, kiss their foreheads, and smooth back their beautifully white, baby fine, hair.  They are angels among us.

Saturday, April 23, 2016

November, 2013: Prayer Shawls

While I sat in the hospital in November, 2011, watching plasma and
saline and toxic chemicals drip into my mother, I needed something to keep my fingers busy.  I needed the quiet rhythm of wooden needles marking time against each other while I learned to sit quietly, in the moment, with my family.  I wanted to make her something comforting; although hats were an obvious choice, I was cold in the hospital, and I thought about how it would feel in a hospital gown, in a cold, sterile bed that overlooked the construction of the new hospital wing.  I picked the softest yarn I could find in my stash and held it up to my cheek; I imagined it wrapped around her shoulders.  I picked a pattern that would require little thought and cast on a simple shawl.  It began with just three stitches and grew reassuringly by two stitches at the beginning and end of each row so that it didn't only grow longer but also wider as I worried it, stitch by stitch, into being.  Afterward, I found it in a box of things that had come home with her from the hospital that December.  I don't think she ever wore it, but I wear it now, and it brings me great comfort.  

Two years later, the air was cold and dry as I curled in the chair in the hallway, wrapped in my father's worn sweatshirt.  However I tried, I could not warm myself.  My knitting needles clicked as I knit row after row of soft blue alpaca, stopping periodically to hold it against my cheek and test how well it would comfort me afterward.  Weeks before I had chosen the blues and grays because they resembled the ocean, where she had wanted to go for her birthday in November, 2011, the birthday she spent in the cold hospital room.  When I packed hastily for my trip to the hospital, I needed something to knit, but I couldn't take any of the projects I had already cast on.  They were to be Christmas gifts, and I couldn't knit all that sadness into gifts for other people.  Instead, hour after hour I knit my mother's comfort into a shawl I could wrap around myself in the months to come when the cold and the loss and emptiness would be impenetrable.  Although it makes my heart clench when I hold it against my cheek, that basic shawl, slightly too large because I was reluctant to let it end, helps me to remember that my mother would want me to live my life.  She would want me to start my life over if I wanted to, to go to the beach, to take a nap, or read a good book.  And so I have done these things; I take more risks, I step out of my comfort zone, I tell my son how much I love him.  I wrap that shawl around me and revel in its comfort; I know she is with me.

Prayer shawls have long been part of many religious affiliations.  The Tallit in Judaism, the Mantilla in the Roman Catholic tradition, and Pentecostal prayer cloths are just a few examples of special clothing people have worn during prayer.  Among fiber artists, the prayer shawl embodies the creator's thoughts and prayers for the receiver.  Prayer ministries have formed for the sole purpose of knitting and crocheting prayers into comforting shawls for those in need physical or spiritual comfort. Shawls are begun, crafted, and given in prayer.  In prayer ministries, the shawl may be passed around a prayer circle so that each person can add their own prayers, or stitches, to each shawl.  

Although I didn't realize it at the time, and it certainly wouldn't be traditional to knit one's own, I see now that these shawls, knit at the beginning and end of my mother's illness, were prayer shawls.  With each stitch, I connected with my family, shared thoughts of my mother, imagined how we would rearrange the stitches of our life without her  I wear them now for comfort; always cold, I have been even colder as I have reknit the void left behind by her passing.  I receive a lot of compliments on these simple shawls; for now, I tell the sad story of how they came to be, but I hope that in the near future I will share stories about how my mother taught me to knit, about her aunt Rose who always made the most beautiful baby clothes, about the times that my mother and I shopped for yarn, or about her faith in my ability to knit socks.  I think of my son, teaching himself to knit by watching YouTube, trying out double pointed needles, and becoming entranced by weaving.  We are tied together, stitch by stitch, row by row, threads spun and plied from the past to the present, our future an infinity of combinations of colors and textures made from two simple stitches.  Knit. Purl.  

Friday, April 15, 2016

November, 2013: Into the Light

I've come to believe that in the same way that I have "work friends" and "knitting friends" and "college friends" I also have "loss friends."  They aren't necessarily people I hang out and drink coffee with, but we have connected at some core level through our experiences with loss.  Most of us could use the hashtag #cancersucks to describe moments in our lives.  My sister has a friend (a real friend) who I count among my "loss friends;" after losing one of her sons tragically to cancer (#cancersucks), she has dedicated her life to helping families who are undergoing traumatic experiences with childhood cancers.  Because her son's favorite color was orange, Laurel believes that Myles speaks to her through beautiful orange sunsets.

It's probably a coincidence, but from the time my mother was hospitalized in November, 2011 for intensive chemotherapy, I have been witness to spectacular sunsets.  Many nights while I was making the drive from Albany Medical Center to Amenia, New York, I had to pull over and watch because I was spellbound by the exquisite beauty in the skies.  During that week in November, 2013, the sunrises and sunsets were breathtaking.  From the wide expanse of windows in the hospice ward, each day greeted us with a glorious watercolor of crimsons, fuschias, salmons, corals, burgundies, vermilions, magentas, garnets, apricots, tangerines, peaches, cadmiums, amethysts, pomegranates, periwinkles, lilacs, lavenders, orchids, plums, and if it were necessary for us to drink up every color in the universe in that one moment.  Nights drifted in reluctantly as the colors blazed and slowly muted into darkness; temporarily sated, we reluctantly let go of the day.  Like Scheherazade, they forced us to stop and just BE in the moment while they danced around us with their stories and promise of just one more day.

In the days After, I have remained particularly sensitive to the comings and goings of each day's show of colors.  We have moved to a new state, where we live at the top of a hill; during many of my drives to and from work or just watching from the many windows of our house in the country, my breath catches as I reflect upon the swirling pools of watercolors.  I like to think that my mother is there with her own parents and sister, who she lost far too young, and with Myles, reminding us to stop to take notice of the world's magnificence.

sunset in our back yard                                                     sunset at Duncan's school

Thursday, April 14, 2016

November, 2013: Interstices

The next day, of so many days that would later blend into one, we were all still there.  The day passed in a state of semi-normalcy as we went about the business of waiting.  We took turns bringing back food, water, coffee, and tea.  We updated friends.  We cancelled work, and conference travel, and checked in with babysitters.  We updated our children's teachers about the first substantial loss they were about to endure.  We assured my father that he could go home to take a shower, and maybe even a nap.  We assured my mother that although we loved her, and we knew she loved us, we would be okay.  She could go, you know...if she was ready.

Our young friends were a little more occupied.  Their people had come...I remember them as arriving like the family in Patricia Rylant's children's book The Relatives Came, although far less festive.  Families would arrive en masse in that place, with picnics and drinks and spiritual advisors; they chatted and caught up and had mini reunions and talked about how they really should get together more often, and not just for these sad occasions.  Then everything would become quiet, as if they realized suddenly that they would not all be going home.

When night fought her way back in again, and we went around the corner for pizza, we bought extra to feed our three young friends, just in case.  That night their grandmother came out and took them out for dinner.  It was difficult loosening the grip on the comforting idea that my life was preordained, but I felt better knowing that they were not alone.  Someone would need that pizza after all.  There are times, when you are waiting, when you can summon up just enough energy to take care of the living, but there are times when you just can't.  There was a great spirit of sharing in the hospice ward, the wing devoted to waiting for After.  My nephew came that night, and although he could not bring himself to see my mother, his good-byes already having been said in his own way, it was calming to be wrapped in the comfort of the everyday that he brought with him...homework, play dates, school projects.  He was a reminder that Out There, life went on.

My mother, in her stubbornness, hung on.  We were all exhausted.  It was the diametric opposite of sleepless nights spent in labor and delivery waiting for new life to enter the world.  There were sleep deprived moments of dark humor.  There was one long, dark act of the play unfolding where we begged her to stay.  "Look," we implored, "We know we told you it was okay to go, but we also JUST told Dad it would be okay for him to go home to take a shower.  PLEASE wait until he gets back.  PLEASE.  He will never forgive himself if you go now, and he isn't here.  Then you can do whatever you want.  Just hang in a little longer."  I thought of the oldest brother of our young friends (or maybe it was even an uncle) who had made it in time and said a little prayer for all of them too.

With that day almost over, and the waiting continuing, the nurses brought us sheets and blankets, warm from the dryer.  We settled onto two adjacent couches in the waiting room and napped under a sign that decreed "No sleeping in the television room."  Clearly, we were not the first people to squat illegally since we had been so well cared for.  Just as I drifted off, my sister poked me and motioned to the couches behind us, where the girl and her two brothers had stolen into our world of darkened waiting, like stray cats, seeking whatever small comfort they could find.  My sister and I nodded silently at each other, acknowledging that sometimes the most you can do for someone is be there with them, in the moment.  Waiting.  Together.

November, 2013: Preordained

But first there is a story inside me that needs to be told.  Its setting is a hospice ward, and it does not have a happy ending so if those things are a trigger for you, quietly step away.  I won't be offended; I have been there too.  It won't allow itself to be told in one sitting, and it won't unpack itself in tidy, even rows.  It will pop up like the faded Polaroids you find in the back of the desk drawer.  It will more resemble an angry ball of tangled, gnarled yarn, because sometimes life happens that way.  I'll preface these entries with the title "November 2013" for people who can't go there with me  If you do join me there, I thank you in advance.  I didn't know I needed you, but I did.  I still do; and needing people is perhaps the hardest thing for me to admit.  

There were three of them:   A girl of about 14; her slightly older brother, who was about 16 or 17; and their younger brother, who was about 5.  They didn't appear to have any adult supervision, and we assumed they were there for an older, distant relative, maybe a grandparent or great uncle.  As the day passed in entire lifetimes, they did the best they could to entertain themselves, but they had clearly come, as we all had, in a hurried flurry of sadness, unprepared for whatever would follow.  The youngest one was a tornado.  The girl tried contain him, and the oldest floated between the two worlds of the hospital room and the family room, wanting to be a responsible man but with no clue about how to do it.

As the sun went down, we realized that no one was feeding these children, whose family was consumed by loss. We invited them to eat our leftover Boston Market takeout; it wasn't much, but it was all we could offer.  We did explain that the hospital delivered family meals at the end of the hallway, but I think they felt awkward searching them out.  They made a feast of our leftovers and thanked us profusely.  

As the long, dark night settled around us, and our husbands had gone away to quietly pick up the pieces behind the scenes, in the way that they do, my sister and I sat on the floor working on a puzzle.  The children crept closer and closer to us until they were helping us build the border.  "We're sorry about our brother," the girl told us.  "There's something wrong with his brain.  He's pretty normal, but he has a lot of energy.  He runs around a lot.  He used to get in a lot of trouble in school, but now he takes medicine for it."  In their rush to get to the hospital, their grandmother forgot his medicine, and now there is no one to go get it.  We reassured her that we understood.  My sister and I, both teachers of children with learning differences, blessed with AD/HD ourselves, also struggle to parent boys with AD/HD.  It can be very hard, we commiserated.  

Their life unfolded before us as we continued the slow and tedious process of putting the pieces back together.  Their mother, like ours, had been sick, and although they had thought she was getting better, she really wasn't.  Their grandmother was taking care of them, but it was a lot for her to handle, especially with the youngest one being so difficult, and with her trying to take care of them too.  They had an older brother too, and they were waiting for him to come on the bus from New Orleans (Baltimore?  Washington?) to take care of them, but they were all mostly worried he wouldn't get there in time, you know..And while the words to describe their mother's dying still hung in the air (no one can say the D word in a place so comfortably dedicated to waiting for it), she told us that they all have different fathers.  They would probably not be able to stay know, After...her older brother, the 17 year old, had no idea what he would do after he graduated.  He was smart, you know, and could probably go to college, but there was no money and no one to help him.  The oldest brother couldn't take them, and their grandmother was just too old.  They just didn't know.

Eventually that night we all drifted apart, as the older brother became bored and faded into the glow of the television.  The little one crashed in a heap somewhere in that way that little boys with AD/HD go from zero to sixty and then back again.  And somewhere, a 14 year old girl rehearsed what would become her new role of trying to pin together the fabric of her family.  My sister and I shook our heads in wonder that fate might have brought us here, in this exact place and time, to be here for these lost children.  We all sat in the blue light of the dark room, waiting for the After.