Showing posts with label Marriage. Show all posts

In Sickness and in Health Or, Riding the Teeter Totter of Care

Saturday, August 2, 2014



There’s a reason it’s called caregiving. It isn’t called care-loaning or even care-working. There may be some hope for reciprocation should the table someday be turned, or even an implicit understanding that the person to whom one is giving care would do the same if need be. But that thought rarely enters into the act of caregiving. It even seems a misnomer to say that one provides caregiving “for a living” as though the act of payment is ever sufficient for the effort that is put forward; at least the part of the effort that involves emotions, selflessness, and true connection with another. 

No, the act of caregiving is indeed a gift of care. You put it out there, you hope that it is more than adequate, and you try to gain comfort from the honor of it.

The role of caregiver was not one to which I naturally took. I do not have the patience, fortitude, or confidence. In thinking back on Kevin’s illness, it is perhaps my greatest regret that I didn’t do a better job as his caregiver. It was all such difficult terrain to maneuver. Taking fully to the role also meant admitting and accepting that he was in need of such care from those around him, a level of vulnerability that hurt and frustrated him greatly. So I think we both danced around the issue when it would have been best to have an open discussion about it.
On our wedding anniversary, spent in the hospital, we tried desperately to ignore the setting, the bustle, the constant intrusions, the stark-white-tiled-reality, and have what we both tacitly understood could very well be our last anniversary together. We ordered our favorite dinner carry-out from Amadeus, a place we would traditionally have lingered in on that day, enjoying smoked salmon over crisp potato pancakes, and sweet Napoleons (for Kevin) with strong coffee (for me), sitting at a nicely set table in the restaurant’s lovely, cramped space. 

Instead, I sneaked a bottle of wine into his room, knowing that the combination of alcohol and drugs he was taking would most likely render our evening short.  The fluorescent lights were dimmed, leaving just a few narrow slats of sunlight to seep through the blinds. We sat together—a metal hospital table rolled up between us—and tried to imagine that the Styrofoam containers were fine china. By this time, Kevin was paralyzed from the neck down. I used one fork to eat both my dinner and feed him his—such a very small way in which to join us together.

We finished dinner, watched most of a movie, but then had to let the nurses and aides enter the room for nighttime prep. We had been discussing options for going forward with the doctors and social workers. Mobility wasn’t returning and the harder he worked with his OT and PT staff, the more frequently he developed infections that erased any progress. Coming home to Kevin in many ways meant giving up and it was so very hard for him to do that. The nurse that night seemed not to care that it was our anniversary. In addition to repeatedly entering the room, she also wanted to spend the nighttime prep instructing me on how to do those tasks I would be handling once home. 

I still remember looking at her face—a middle-aged, take-charge blond, with deep blue eyes and little makeup. She wore navy blue scrubs and carried a plastic box with Kevin’s meds. I conducted a two-minute internal debate and then refused her offer of instruction. “Tonight is our anniversary, and for this day, I am just his wife. I’ll be back in a few minutes.” I kissed Kevin’s forehead and left the room feeling many, many emotions: anger, frustration, regret, guilt, love, fear, pain.

It was truly my great honor to care for Kevin in the last months of his life. And I will never be able to repay those others that helped care for him, especially his mother, brothers and sisters, who did as much as I ever did, coming every day and staying for days at a time. But that one time, I just couldn’t do it. I couldn’t be party to the quaking shift that occurs in the tectonic plates of a relationship when such care is needed. We never talked about that night and I can only hope that he understood why I did what I did.

I have thought back on that moment frequently and still feel many of the emotions I felt then. I continue to reflect on caregiving and what it really means to a relationship, especially a marriage. After going through Kevin’s Stage IV treatment I knew that, even if by some miracle he beat the cancer and became healthy again, our marriage would forever be altered by the change of our roles and by the sheer amount of need that had settled in between us. To require such care, to need another person to that extent, forever manipulates a relationship’s dynamics, there’s just no way around it.

But certainly the caregiving didn’t begin with Kevin’s illness. It is always, to varying degrees, part of a relationship; it teeters and totters over time with one giving care to the other and the other reciprocating as needed or as able. Sometimes it’s care for physical needs, sometimes for emotional ones.  He cared for me after we had our children. I cared for him when he lost his job. We cared for each other during minor illnesses and set-backs. Because we married so young, we spent much time caring for each other as we grew up and became adults who learned to cope with loss, disappointment, and small failures. 

Now, as I think of moving on—of the possibility of dating or starting a new relationship—this idea of caregiving pops into my head again. I feel almost as though I have been tattooed by my experience of caring for a dying partner. It has permanently changed me, my perspective, and my way of thinking. I feel not only transformed—both physically and emotionally—but also marked in certain ways as susceptible.

I wonder if I am equipped to enter the role of caregiver anew, even to the basic extent that it is required for a successful connection between two healthy people. I don’t know that I’ve exorcised the demons of regret and anger at cancer for putting us into that unbalanced position. Given the experience of the totality of my marriage—not just the time of Kevin’s illness—I know that caregiving is an essential part of two people living together. To be successful, both must enter into the idea of giving care to the other from time to time and understanding the generosity and selflessness that are required. I wonder if I have that level of generosity in me; if it, like other senses can blossom again, spurred perhaps by feelings of affection and attraction. 

And there are other issues too. Like the idea that perhaps I have come to need more than the usual amount of giving care in my life. I worry that I may seek out those who need extra emotional care because it, at least for a time, was such a part of my identity. I tell myself I need to be surrounded by healthy and well-adjusted, not  “projects,” and yet I find myself drawn to those in need, ready to swoop in and fix all that is troubling, whether or not I actually have the skill or capacity to do so.
Even harder for me is the idea of receiving care. I was recently joking with friends about the possibility of going on a date with a particular person. One friend suggested that I should do it; that this man had the personality and wherewithal to wine and dine me, and that perhaps that’s exactly what I need right now: someone to care for me for a while. But even this doesn’t feel right. Having had the experience of being the caregiver has also made me overly cautious of being on the receiving end. Though spending an evening at a really good restaurant drinking a very nice wine hardly puts me into a place of being “cared for”, my hyper-analytical (read: overthinking) state of mind (as well as my feminist leanings) does cause me to go there. 

I often see even the slightest imbalance as significant.

I suppose it is balance that I should be seeking and that I should hope will find me. I shouldn’t worry about how messy or neat someone’s life is, but rather that there will be gratitude and reciprocation of whatever help I extend. And I shouldn’t fret over whether an act of kindness or even tenderness might throw off the equilibrium, but rather enjoy it with gratitude. Relationships are, after all, teeter-totters of care and many other things too. I’m sitting now with my butt on the ground, staring at the vacancy on the other end, and closing my eyes as I consider pushing off.

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The Bands Play On

Sunday, February 9, 2014


It is difficult to explain exactly how important music is to my life. My earliest memories have music in them, as though life has always had a soundtrack. I work in and among writing and books, which are dear to me, but popular music is my first love.

I have a distinct memory of being 4 or 5 and going to the zoo with my babysitter. I remember sitting in the back of her green Mustang Fastback convertible, speeding down Woodward Avenue, with Martha Reeves on the radio. It is certainly a Detroit memory, and perhaps my Detroit upbringing has something to do with the intrinsic connection of popular music to my being.


I’ve been thinking about music for a few reasons lately. I recently spoke to a colleague about working on a music book project this summer. I’m terribly excited by the prospect. The book has to do with widowhood, so it feels perfect in many ways. I’ve also been reading Facebook posts by friends who share the “top 10 albums that have stayed with you over the years.” I don’t think I could narrow it to ten, but I’m thinking and trying.

Then I had a conversation with another friend about the music of our childhoods, during which we discovered a mutual love of Neil Diamond that comes from the fact that our parents loved and played Diamond’s music when we were young. Like the memory of cruising to the zoo, I can put on Diamond’s Holly Holy or Cracklin’ Rose and, with the first strums of the guitar, I’m immediately taken back to springtime Saturday mornings, doing chores while these records played on the turntable that was built into a stereo cabinet the size of a VW bus that occupied most of our living room. The windows were cranked open to let fresh air in and the volume was cranked up as loudly as my mother felt was respectable. 

Having now lost my mom just over a year ago, I’m also reminded of the several times that my sister and I took her to see Neil perform in concert. Mom worked on an assembly line for GM, cutting and sewing the fabric that would become car interiors. She worked forty-plus-hour-weeks and then worked another several hours each night with household duties. We always had a full meal for dinner (which we always ate together), and the house was pristine. My memories of Mom at those concerts, standing with us, swaying to the music, her arms raised in the air, are now some of the few times I really remember her feeling and acting carefree. They are powerful memories that sustain, and that come back to me readily after the first notes.

Oliver Sacks’ fascinating book Musicophelia, and Daniel Levitan’s equally interesting Your Brain on Music, both address the idea of music from a neurological perspective, including how we remember music, from individual notes to complete symphonies. For me, music is so closely tied to memories that—with older songs especially—the two seem intertwined in my brain. That has certainly been the case where music and memories of Kevin are concerned. I can’t consider our meeting, dating, marriage, or the time of his illness without also thinking of the music we shared.

We first connected over our mutual interest in the Clash. He borrowed albums I had purchased from the import bin at Dearborn Music and told me about going to their concert at a high school gym in Grand Rapids. When we moved in together a year later, the amount of duplication in our record collection spoke of two people with very similar tastes. They differed at some points, and Kevin quickly learned to accommodate my enduring love of the music of Queen and other 70’s rock bands that he had come to disdain. We also attended concerts together, some twenty or so over the years: everyone from Echo and the Bunnymen, to the Rolling Stones, to David Bowie, U2, and Bob Dylan. We made mix tapes for each other and for our kids—the first one for our son made while he was still in utero. We hung out at record stores like Schoolkids and Wazoo. We visited Johnny Cash’s grave and the bronze statue memorial to Freddie Mercury in Montreaux, Switzerland. We named our first puppy Mustang Sally.

So when Kevin was diagnosed with cancer and had to undergo treatment, it wasn’t surprising that music was part of that as well. At first, he made his own mix lists on his iPod, some songs soothing, some closer to battle cries. The radiology technicians plugged his iPod into their speaker system while he lay on the table bolted in under plastic mesh, and he put his headphones on as soon as he walked into the chemotherapy room. For round two, he solicited music from the many friends who read his carepages blog, agreeing to add anything that was suggested, even country songs and rap. The suggestions poured in and the list--over 200 songs which are still on our iTunes program--include Wonderful World by Louis Armstrong, Bill Withers’ Lean on Me, Mama Said Knock You Out by LL Cool J, a very fast version of Amazing Grace by the Dropkick Murphys, and Beethoven’s Symphony #3 in E Flat, Op.55, Eroica.

Kevin absolutely loved this list. It connected him to everyone that was out there supporting him during his worst days. The music cheered him, strengthened him, calmed him, and gave him nourishment as certainly as any food. He listened to these songs as the anesthesia took effect before his two spinal cord surgeries. He spent forty-five days in the hospital before his last two weeks at home. Every night, the last thing I did before leaving for home, or curling up on the chair next to him if I could stay overnight, was to put his earphones on and turn the iPod to “Chemo List #2.” The drugs knocked him out each night, but the music allowed him to sleep.

He told me that he had two favorites on the list: Dylan’s Ring Them Bells and Three Dog Night’s Shambalah. It was the closest thing we had to time spent planning a memorial service—I took that conversation as an indication that he wanted those songs played in remembrance. They were, along with several others. It was a music-filled service, as he would have wanted.

Of course I could not listen to this playlist, or even one or two of the songs on it, for the past three years. It’s still difficult to listen to Ring Them Bells or Shambala or Wonderful Life or Joe Strummer’s version of Redemption Song. I wondered sometimes, if those songs were lost to me forever, their tunes and words just too painful to have in my life. I knew my relationship to music was forever changed. I wasn’t sure how I felt about that. So much of what we shared is just all around me, waiting for me to deal with on my own without any choice. But songs can be turned off or avoided altogether. It has taken some time, but I'm gradually putting the headphones back on and making music a part of my everyday.

I've managed, I suppose, to come to a different place. Now, when "Kevin songs" pop up on my random playlist, I simply let the tears come and embrace the time as a few minutes that I can spend in the comfort of memories. 

And I know that the memories will always come along with the music. Someday I’ll put the music on and dance, but for now it’s ok to just sit and listen.

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A House, A Home

Monday, November 11, 2013



Earlier this year, I sold the house in which Kevin and I had lived for twenty years. It was a terribly difficult thing to do. I had hoped to stay in the house until our daughter graduated from high school in 2015, but keeping up an old farmhouse on two acres of land (mostly vegetable and flower gardens) was becoming increasingly impossible. It had occurred to me that it might take two years to sell the house, given Michigan’s slowly recovering economy. Instead, the house sold within six months of listing, and after nearly one-hundred showings (yes, 100). 

Any home would be difficult to leave, but leaving our home was particularly traumatic. Kevin and I purchased it shortly after we married. We had been visiting my brother one evening, and had a conversation with him about when we could buy our first house. We complained that it would take years to save for a down payment while paying off student loans, paying rent in Ann Arbor, and handling other expenses like car payments, insurance, etc. Dusk was just settling in as we headed
Moving day.
back to our apartment and passed an old, abandoned, farmhouse with knee-high grass and a wooden screen door flapping in the late autumn wind. I yelled at Kevin to turn into the drive and that was all it took. We returned a few days later with our trusty landlord/general contractor and made a bid on the house by the weekend. My parents helped with the down payment, which was all of $4000.

Friends came out and looked at the house prior to our move-in, dubbing it “Sullivan Acres” after the 1970’s television show “Green Acres.” Another friend called the basement a Turkish prison, and several were certain it was haunted. Regardless of these “concerns” we moved in just before Christmas and began work, pulling plaster and lathe off the walls, scraping up carpet, re-wiring, re-plumbing, and then putting it all back together. Over the course of this time, we lived on the first floor, then only in the kitchen, then we moved out altogether and lived first in a sublet in Ann Arbor, and then with my parents in Detroit. Finally, just six months before our first child was born, we moved back. The original plan was to gut, rebuild, and sell, making enough money to have a down payment on a nice house in Ann Arbor. But then life happened and soon our kids were settled into the schools, we made friends, and the idea of selling became distant. The few times we considered selling we needed only to attend a few open houses where we would list all the shortcomings of the property and decide instead to stay put.

The house became a huge part of our identity. “We live in the yellow farm house across from the party store,” was pretty much all we ever had to say to anyone in Dexter and they would know the one. The home’s original family still lived in town, and our work had made many curious over the years. We frequently entertained, welcoming friends and neighbors as often as we could find an occasion. Our children held many sleepovers and birthday parties, and roamed the two acres finding snakes, frogs, and bunny rabbits.

After. July, 2012
My feelings about the house are now, for the most part, ambivalent. It is my great regret (given my now perfect hindsight), that we stayed in the house for so long. How many trips could we have taken, how many memories could we have created with the time and money used on our house? It breaks my heart to think about this.

On the other hand, how great it was to have such a place to call our home.  And what a true accomplishment it was for us both. Many times (well, more than once, anyway) I encountered someone who, upon hearing of this project, would tell me that they had undertaken a similar project with their former spouse. A marriage that can survive such a major home renovation is a rare thing. I also know that Kevin and I learned so much from that renovation; there was nothing that could go wrong that one of us (mostly Kevin) couldn’t fix.

Shortly after Kevin received his Stage IV diagnosis, we talked about our accomplishments. It was a dreadful conversation to have. I reminded Kevin that he had realized so much—a Michigan MBA, a position of importance with an international corporation that respected him and held his opinion in high regard, many close friends, children that loved him and wanted to spend time with him, an extended family who loved him. He had traveled the world, run a marathon, and completely renovated an old house that was now a beautiful, memory-filled home. His response was that he wasn’t done yet, which I completely understood and agreed with. But it was important to me that he know how very much he had achieved; that his was not a life that, by anyone’s estimation, would come up short.

Containing our marriage, indeed our lives, into moving boxes was a physically and emotionally challenging chore. There were times, I must admit, when there was a certain lightness and liberation to it as well—an uncluttering. For the most part though, it felt like a stripping away or reduction of so much that defined me and us. Our marriage would never be defined by things, but it certainly was defined, in part, by that house. And now, I’m attempting to create new definitions for myself that don’t necessarily involve the home in which I live.

Now, the house is occupied by two plant biologists who both teach at the University of Michigan. They have two children, a boy and girl, who are the same age difference as ours. They love the gardens, the antiquity, the creaking of the wood floors, and the inviting porch. They understand the memories that reside within the house and hope to make their own. There is a certain miraculous symmetry to their purchase of our home. I wish them well.

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Who I Am Without You

Friday, September 13, 2013




I came across this song a few weeks ago as it played in the background while I worked—making sense of monthly accounting spreadsheets as I remember. Every once in a while I’ll be half-listening to a song and quickly realize that it deserves closer attention. A word or two will catch my attention the way a glint of sunlight hits a piece of glass in your path and makes you stop and look. This was one of those songs. Off I went to Google the band and find a video.



The words that struck me were these:
“I’m so scared of losing you and I don’t know what I can do about it, about it.
So tell me how long, love, before you go
And leave me here on my own?
I know that I don't wanna know who I am without you.”

Sure, it’s a break-up song, but the beauty of a really good song is that you can make it work for your situation, even if it wasn’t written for that reason.

Last Saturday marked the third anniversary of Kevin’s passing—a length of time that I still can’t comprehend. For twenty-seven years we had not been apart from each other for more than ten days’ time. I feel memories fade ever so slightly each year and I fear I need to make time stop before they fade away completely. I grasp at them each day with greater urgency.

Having been married for twenty-seven years, and marrying as we did in our early twenties, the last three years have indeed been a search to find out who I am without him. In so many ways, Kevin and I grew up together, our adult lives becoming completely interwoven. Our courtship lasted less than two years and was a bit tumultuous. We met when we both worked at the Hyatt Regency Hotel and I invited Kevin’s roommate Bob to a party I was having at my parents’ house while they were out of town.

Thinking back on that party, it really is a metaphor for the scattered, indecisive way in which I’ve lived my life all these years since—too often going with the flow, dabbling in this and that, never quite able to confidently define myself in any fixed way. Kevin and Bob were part of a group from my new job. They were a fairly hardworking bunch, though not necessarily studious. Some were in college; others were going to work at the hotel forever.

Then there was a young man I had dated a bit through the winter. Tommy played in a punk rock band, had several piercings, wore a spiked leather wristband, and was in love with Chrissie Hynde of the Pretenders. I had a few earrings dangling from my ear, wore ripped jeans and listened to The Clash. Music defined much of my youth, and my dream was to write about music. Tommy showed up in his hot-rod car, which most of my peers did in Detroit in 1982. He was good looking, fun and destined to a middle class life of factory work.

Then there was Steve. He was finishing his MFA in photography. He was artsy and creative, and eight years older than I. He was absolutely dedicated to his craft—fame and fortune or even steady income be damned. We read Patti Smith's poetry aloud and dreamed of tiny apartments in Manhattan. Steve represented the Bohemian creative-type that I yearned to be on certain days. But at what cost? I had grown up in a working-class neighborhood in Detroit, but both my parents worked, which made our situation a bit more secure—not wealthy, just comfortable enough to all go to college, have nice clothes and dinner out if we wanted to. It was expected that I would work to have a better life than my parents. Forsaking that for the life of a starving artist was not something I felt comfortable explaining to my parents or necessarily choosing for myself.

There was no instant spark that first time Kevin and I met. But we encountered each other at work and at after-work get-togethers enough that we found we had much in common. Soon we were planning our work breaks together, going out nearly every night after work and finding ways to connect momentarily on the campus where we both took classes.

We broke up a few times (too long a story to explain here), and I went away to school . During that time, I changed majors and even changed schools--twice. I went from studying literature to marketing—trading in time spent writing poetry for writing advertising copy. As Kevin and I planned our wedding, I felt the need to give up the dream of being a poor poet and plan for a corporate future that would afford a nice house, cars, and annual vacations.

My life was further defined by the home we purchased and renovated, and then as the mother of two children. I was absorbed into the day-to-day of my life like a chameleon on colored paper, until I didn’t really know where others’ lives stopped and mine began. I am not alone in this, for certain.

And Kevin was more supportive than most in encouraging me to pursue my interests. He read most everything I wrote, and was one of only a few people with whom I shared essays, stories and even my crappy teen-angst poetry. He, too, worried that the creative person he married was getting lost in our busy lives, but neither of us knew how to do the hard work of carving out the time and space I needed. Like many women, I struggled to fully nourish my creative interests without feeling guilty about taking time away from my family, job, home, etc., etc.

And though I may have wished for that life of a writer, I also must admit that I took full advantage of the comforts of our (mostly Kevin's) hard work. Such was the conflict I had all those years--who is the real Lori: if you want to be a struggling writer who lives solely on her earnings, go be one, but you'll need to leave your Amex card behind.

Now, my children are mostly grown and self-sufficient, I’ve sold the house, I am no longer a wife, or even someone’s child, as my parents have also both passed away.

It is scary to be finding out “who I am without you.” At my least rational times I even wonder if I brought this situation on myself after wishing sometimes to be on my own with a laptop and no other responsibilities.

I am of course, the sum of all these things—wife, mother, daughter, sister, aunt, niece, gardener, cook, friend, caregiver, and writer. I see myself made of my experiences in each of these roles as though they create the very cells that make my flesh and blood. In the best sense, they even inform and give life to my writing.

And now I must decide what Lori 2.0 will be. It is, at times, exhilarating, frightening, and grief-inducing. It is something I must do on my own, not only because that’s probably the best way, but also because I don’t have much choice. I don’t know exactly how things will work out, but I’m determined to be more present in making decisions about my life. I want to spend more time on shore, checking out the surroundings, rather than allowing myself to just be carried by the current. I owe this to myself, but also to Kevin, and his memory.


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