My Own Way Back Time Machine Part I

Shortly after my husband Kevin died of Squamous Cell Carcinoma at age 49 on September 7, 2010 (yes, fourteen years ago today), I began a blog (remember those?). I included writing about how I got to where I was and how I saw my life going forward—when I could see that far. The blog sits inactive now, technology, resources, and opportunities leading me to write in different places. Recently I found myself in this substackian space, but couldn’t quite decide how to start anew with a regular public-facing writing project. Aside from announcing my book’s publication, I felt a bit lost about what to post.

So, I’m going to start by going back. In honor of this anniversary, rather than let the blog posts I wrote languish in interwebs anonymity, like rusty old implements in a farmer’s field, I’m bringing them back for you all to peruse. I’ll get to writing original material shortly, but, after reading through several of my posts, I thought they were good enough to once again be out in the world.

Of course, I also look at them and see how far I’ve come and how much I’ve changed in the past fourteen years. Which is also a good thing.

I’ll post a few today, and the remaining four or five in the coming days. So enjoy, ponder, breeze through, skip-over, ignore altogether, accuse me of being lazy or copping-out, it’s all good.

June 2013 - December, 2014

A Start

I’m not very good at this. What is “this” to which I refer? Well, possibly it’s widowhood. Or possibly it’s the idea of regularly sharing my thoughts and feelings in in public. Actually it’s both. But, like much else these days, I tell myself it will be a good thing, so just get on with it.

I’ve now been widowed for thirty-four months. In many ways it seems a lifetime ago, and yet, yesterday as I counted the months since my husband’s death, it felt as though it couldn’t possibly be that long, nearly three years. When I think about it as an actual event that happened I am still mostly in disbelief. How can this be our fate, I wonder? How can my husband, my best friend, the father of our two children, not be here with me? Where has he gone? Perhaps he’s just on a long trip. Maybe this is all a bad dream and I’ll wake up. No, those are not feelings that occurred only in the first weeks after his death, those are feelings that pop up even today.

Each milestone event that happens without him, each big decision I have to make on my own, are all reminders that he’s gone. I find it terribly difficult to look at childhood photos of him, or pictures of us as a young couple; much more so than pictures of us later. The urge to go back in time, to warn him that he doesn’t have much time—that life will be good, and then it will be unthinkably bad—is so great I have to look away.

That’s why I’ll write this blog. Because much of life doesn’t make sense, but even more of widowhood doesn’t. It’s not just what life throws at you, but what you seemingly consciously believe, feel and act upon, that are sometimes just not rational. Joan Didion called it her “year of magical thinking.” This disbelief, this hopefulness for something you know can’t happen (that he’ll walk through the door at any minute), this irrational thinking that is often so much better than facing reality.

As I write, I hope to impart some of the experiences I’ve had over the past two-plus years, in hopes that my words and feelings will be understandable to those who share this fate, or those who are just beginning a similar journey. Nothing about it has been easy, despite having many loving family members and friends to support me. Whatever insights I’ve developed have been the result of wading through difficult days and sleepless nights. And I lay no claim to the insights as original or wholly mine. In addition to family and friends, I have had the benefit of a wonderful young widows’ grief group, along with private counseling, that has helped me, through our common experiences, to understand many of my feelings.

So welcome to my blog. Thank you for taking a few minutes from your day to check in with me. I hope I provide you with a reason to come back often.

Labels

Getting through each day after my husband’s death was difficult. That is a generalization. If I wanted to be more specific, I could. I could write about nearly every moment of each day that was difficult, oftentimes each for its own particular reason. Suffice to say, in general, each day was very hard. I have written and spoken to family and friends about the significant struggle of adjusting to the reality of my situation—that Kevin is gone, and I and our children are on our own. I am surprised at how much disbelief still resides among my thoughts. It seems that nothing causes this concept to hit home more than the title of “widow,” except possibly the title of “single parent.”

                I thought of this again the other day while listening to a story about a “preeminent historian” who had passed away. That’s a pretty good title, I thought. I would like to be called, posthumously, a preeminent anything. We’ve become a culture that readily, sometimes eagerly, affixes labels to people: democrat, republican, liberal, conservative, feminist, radical, immigrant, helicopter parent. There are labels, like “preeminent  historian,” that are labels to which we should aspire. I can think of a few I will gladly accept for myself: well-known activist, frequently published writer, wise elder (not now, but many years from now). Others are simpler, but good and happy nonetheless: mom, dog-lover, cook, community volunteer.  Most labels we either acquire through cultivation, or they become attached to us by our actions.

                I did nothing, though, to become known as a widow, other than to be the one left behind. It is not a title that I like, nor will ever feel comfortable with. I don’t like checking the box on a form under the words “marital status.” A few times I have looked at the “relationship status” list on Facebook, but simply cannot change my status from “married” to “widow” even though, in my rational mind, I know it’s true. Each time I’ve tried, a notice comes onto the screen that says “once you change this, you cannot change it back.” Tell me about it.

This shift actually began before my husband died. Within a year, I went from simply wife, to wife and caregiver first, and then, after two long years, to widow. And I cannot forget the labels that surround my husband’s disease: cancer patient, cancer fighter, cancer survivor, cancer victim. He was all of those things and so much more.

In grief group, we have opted for the title “only parent,” as an alternative to the more common “single parent.” Symantics, perhaps, but meaningful to those of us that it describes. While I have absolute respect for any parent who goes it alone, the divorced parent does have a parenting partner out there, even if in another household or even another state. And the mother who has been single for as long as she’s been a parent has known her limitations since day one.

Widowed parents were part of a two-parent lifestyle one day, and without the second half of that lifestyle the next. Divorced parents don’t necessarily worry about what will happen to their children if they don’t return from that business trip they must take, or if they get bad news at their mammogram. I do. Incessantly. When I lose patience with the young girl at the counter of the dry cleaner because she’s dawdling when I have to be across town to pick up my daughter, I tell that girl that I’m an only parent. I want her to know that there isn’t any other parent who can step in when I’m a no-show. Not because I want her sympathy, but because I want her to understand.

And without the very flexible job that I’m fortunate to have, I would never be able to maintain a house, keep our busy schedule, and remain at all sane. And even with that job, the strains of maintaining a life without a partner to help have taken their toll on my physical and mental health.

 And I never wanted to be here. There was no thought at any time that maybe this was what’s best; no decision-making. It just is.

 There was a time when I would have been known throughout my town as The Widow Sullivan and expected to wear black to reinforce that title. At least that has changed and I’m not forced to confront my situation each time I’m addressed on the street or walk past a mirror. Labels, titles, classifications. Unavoidable pain that irritates like a pebble in your shoe, though  you know you must walk on.

Who I am Without You

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 half-hear a song and realize that it deserves closer listening. 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-six 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 multiple 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 six 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 dreamt 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 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 journalism 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 will 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.

Anomolies

“To be scared is one thing; anxiety is another one. ... If you are in a battle and you have bombs and bullets and shrapnel and everything is going up in the air, that's why you can be scared. But it doesn't really compare to the anxiety. You see, the anxiety ... is something much deeper in a way, because it sticks to you all the time. Are we going to make another day? Are we going to be arrested? ... It's all the impending menace, you know, all the time, all the time. And that's anxiety. I find anxiety worse than fear."
-Tomi Ungerer, author and illustrator of over 140 books for children and adults

I listened to this interview a few weeks back with author and illustrator Tomi Ungerer because I’d read his books and remembered his illustrations, especially those in collaboration with his lifelong friend, Maurice Sendak. I didn’t think I would find a portion of the interview so compelling and relevant that I would pull off the road and listen even more closely. 

As a child, I remember periods of being afraid of the dark, afraid to open the closet doors; the typical childhood fears, I suppose. And I also had, as Ungerer so well defines it, periods of anxiety. As a child of a parent with alcholism, it was, I’m sure, common. As I grew into adulthood, I shifted even more toward anxiety. This too is perhaps not so unusual. Grownups know what is real to be feared, and what isn’t. So we no longer fear that which we know doesn’t exist, but shift toward fearing what we can’t control. According to Ungerer, this is anxiety.

Ungerer is talking about his childhood during World War II, when he lived in the Alsace region of Germany. But he could be referring to other things as well. Our two-plus years spent trying to rid Kevin’s body of cancer was wartime for us, in most every sense. It came with its own “bombs and bullets and shrapnel.” It was a time of constant battle. Nearly every night, especially after Kevin’s Stage IV diagnosis on November 13, 2009, despite being completely exhausted both physically and mentally, I would lie in bed and think, “I cannot take time to sleep. There isn’t time to sleep. Every minute I am sleeping is a minute I am not saving my husband.” That was a time to be scared and anxious.

And, just as there was not time for sleep, there was also not time for reflection on the situation. We just continued to fight. And so I know a little about Ungerer’s fear caused by everything “going up in the air.”

Tomi Ungerer's 1967 book Moon Man follows its lonely protagonist as he visits Earth for the very first time.

In the past two and a half years, I know that I have become a much more anxious person. Hearing Ungerer’s definition of this state was so right on, so close to my own recent feelings and experiences, it was as though someone understood my feelings for the very first time.

During Kevin’s first round of treatment, a dear friend who is a cancer survivor told us that it would take several years before Kevin felt confident of his health. Indeed this was true. Even after his first post-treatment, six-month appointment where he was declared cancer-free, he continued to be extremely watchful of every change in his body. When the cancer returned, giving him terrible headaches that didn’t respond to the usual Tylenol, he knew something was wrong, despite doctors who said that his type of cancer didn’t metastasize to the brain. 

Many people now, in offering condolences, or checking up on how I’m doing, make statements about how much I, more than most, understand that life is short, that every day counts. Yes, it’s true that I do. But there’s a double edge to that knowledge. Understanding that life is so unpredictable can motivate you to approach it with fervor, or it can paralyze you into taking no chances at all.

Since Kevin’s passing, I have had my own health issues. Usually they are nothing. Does this come from my own lack of confidence in health? Or is it a better understanding of the capriciousness of good health. Either way, every cough, headache, muscle ache, or stomach discomfort, sends me to a place of near panic and anxiety.

I think sometimes it’s hard for family and friends to understand this. Even medical professionals tend to give me funny looks. When I questioned another friend, a mom who lost her young son to a brain tumor, as to whether she was anxious of her own health, she said no, she saw her son as an anomaly. 

Unfortunately, I have lost my husband, along with three close friends (plus three spouses in my grief group), all in the past three years, to unusual cancers that couldn’t be explained. All four, including Kevin, were young, healthy, non-smokers, exercisers, who ate well and had no family history of cancer.

My world seems so full of anomalies that they’ve become common place.

And it is not just health, but other situations as well, where things can appear fine one day, and off the next, as though so much depends on the stars aligning just right, or finding a four-leaf clover in the grass. What will happen if…fill in the blank: I lose my job, someone gets my credit card and drains my savings account, we are in an accident, our house burns down. Like Ungerer’s questions of “are we going to make another day, are we going to be arrested,” there is no reason to believe these things will happen, they have not already happened, but the fear of them, the impending menace as Ungerer refers to it, is enough to tense my shoulders into hardened clay, put my stomach into knots, send me back into bed for a day.

The only cure for this is time and understanding, I know. But it does seem to be, in varying degrees, part and parcel of the widow’s life. A partner is by your side and healthy one day, and gone the next, whether from cancer, a heart attack caused by an undetected ailment, an aneurism, or a speeding car that ran a red light. 

Our lives cannot be consumed by anxiety--a feeling worse than fear because it is fear of the unknown, the improbable, and that which can’t really be explained. Most days, I feel as though I am holding that double-edged sword: living life to the fullest on one side, or being consumed by fear on the other. I am physically challenged by its very weight. Each day, I approach it, gather my strength to lift it and determine to put it on its right side. Even after almost three years, this is a daily and difficult task.

Days and Dates

I have learned two things about the human psyche since being widowed. I’ve probably learned more, but two things in particular are intriguing to me. I’ve learned the strength of some form of memory, not quite muscle memory, but something close. And I have learned the irrelevance of dates on a calendar. The two things are closely related as I deal with memories of my husband, our marriage, and the years we spent together, both before and during his cancer battle.

As a writer, I’ve spent much time dealing with memory. Having been working for a few years on a book about the life of my grandmother, a blind woman who raised three children on her own during the Great Depression after my grandfather died of typhoid fever in 1933, I watched as my mother’s memories of her childhood and her parents seemed to soften with each retelling. I listened closely and noticed changes in how she remembered. The struggles and difficulties receded and the love and good times came into sharper focus. 

In the days and weeks after Kevin’s death, I was traumatized. Not only by the sudden loss, but also because of the two previous years spent in a full-throttle fight against an aggressive cancer. I felt angry, defeated, guilty, and completely inadequate. I kept re-living in my mind all the things we could have done differently had we only. . . known sooner, taken the diagnosis more seriously, gone to alternative practitioners earlier, changed his diet immediately, etc., etc. 

I had a recurring dream quite frequently during the first several months. In it, Kevin walks through the door of our house and I stare at him, stunned.

“You’re well,” I say.

“Of course,” he replies. “We beat it. I’m fine. I feel great. Don’t you know that?”

“But you died. Shouldn’t you have a CT scan, or a PET scan or something to make sure you’re ok?” I ask, because of course, I can’t believe he’s returned and he’s well.

And then I wake up, thinking if only we had one more chance. Why didn’t it end this way for us?

Nearly all of my memories during that time were of the two years prior —hospital visits, surgeries, trips to Chicago, Bloomington, and Ann Arbor. They were detailed and precise. I would sit down to my computer and realize that twenty minutes had passed, during which I was back in the hospital, or in a hotel room. 

Many of these memories were triggered by something that made me realize the time—either the time of day or the time of year. A cold, dreary day when the Midwestern snow has turned to gray slush put me immediately in Chicago where we stayed for several weeks while Kevin received radiation treatments. I knew that one year, or two years ago that very day we had driven down slushy Chicago streets.

In a similar way, I have not needed a calendar to remind me of the anniversary of Kevin’s passing. It happened on September 7^th. But for me, it will always be the day after Labor Day, or the first day of school. As the air begins to have a crispness about it, I remember. With the sound of a school bus rumbling by after summer vacation, I remember. I do not need a calendar. 

We have talked about this phenomenon in my widow’s group: how other triggers, not a number on a calendar page, are what bring the memories to the fore. The 7^th of September floats along each year, first to Wednesday, then to Thursday; a leap year pushes it two days ahead on the calendar grid. But for me, it’s always the same day of the week—Tuesday: the day after a day off, the day after we sent our son back to his new college dorm, the day after we brought hospice in. 

For others in the group it was something else. It will always be Friday for Cindy. That was always pizza and movie night in their house. Every Friday became a reminder to her of the one Friday when she went to set the table where the pizza lay in its box, and returned to the living room to find her husband slumped over while their son sat a few feet away selecting a DVD. The date of his death was there on the certificate, but it didn’t matter—it will always be pizza and movie Friday.

I don’t understand how the human brain and memory work. People keep telling me to give it time; that good memories would eventually crowd out the more difficult ones. For the most part, they are right. Slowly, good memories are taking their rightful place in my psyche. And I try to observe and understand the triggers—something as slight as the angle of the sun through the window or the smell of lentil dhal. For now, tough memories are still more vivid. But I remind myself that Kevin was more than the last few years of his life, as was our marriage which spanned 26 years and two children. It was too short, but it was full of things worth remembering.