Archive for July 2013

So Many Anomalies

Friday, July 26, 2013

“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 collaborations 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. But as I grew into adulthood, my fear shifted 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 yet, 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.”

But it’s his analysis of anxiety that stopped me in my tracks.


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

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 high anxiety.

I think sometimes it is hard for family and friends to understand this. Even medical professionals tend to give me funny looks. When I questioned another friend 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, and 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 heart 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 controlled. 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.

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Dates on a Calendar

Thursday, July 25, 2013



I have learned two things about the human psyche since being widowed. Actually, I’ve probably learned more, but two things in particular are intriguing to me. I have 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 have spent much time dealing with memory. I’ve 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 because of 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.”
“But 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 7th. 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 to remind me. 

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 7th 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 Sandy. 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 kept 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 drink in 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.

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Easier Thought Than Done



First, let me say I generally believe all people are good and their hearts are in the right place. Now, let me say that many of these same people say the stupidest things. In my young widows’ group, we kept a running list for a while. For several months, I claimed the prize for the worst thing said (I’ll get to that later). I’m not sure why it’s so hard for people to find appropriate words to say to someone who’s grieving. A lack of empathy? Perhaps. But that implies purpose, which I tend to think is not the case.

Sometimes, I think, it’s a matter of one’s intentions not quite keeping up with their mouth as it opens and words spill out. That, mixed with an overwhelming sense of “there but by the grace of God go I” that prevents the right words from forming. Most times, words can’t come close to offering the comfort we hope they will. One of the most meaningful notes I received shortly after Kevin’s passing was one that said simply, “there are no words that will do. Just know that I am thinking of you.”  As communicators, we don’t want to believe this to be true. We want to find words that comfort, console, and convey to the recipient that we are caring, sympathetic souls, traveling the same road, comprehending, at least in part, how the other feels, and willing to share the load if needed. That, my friends, is easier thought than done.

I don’t remember much of the first few days after Kevin passed away. The visitation and service are a blur. Small moments stand out—seeing friends and family who had traveled long distances, or whom I hadn’t seen in years. Or the hardest parts: the first steps through the door of the funeral home or the church. I distinctly remember walking back into my house after the funeral—it felt as life changing as I knew it was.

I know for certain that many helpful words of condolence or memories of Kevin were said to comfort me during those days. Memories often provided the greatest consolation. But I've heard others who even encountered difficult situations during this time. The nurse at my doctor’s office, for instance, told the story of the young man at her husband’s funeral who visited for a few minutes with her daughter, then asked, "Watcha doin' tonight? Got any plans?"

I do remember, a few weeks after my husband’s funeral, running into a neighbor at the grocery store. He commented on how I looked. “You’re looking much better,” he said. “For a while there, you were looking so tired. You really look much more rested.”

I suppose I did look rested. I spent most of my time in bed. I slept with the aid of medication. And I was no longer awake around the clock being a caregiver. I had traded dark circles under my eyes for a hole in my heart and would gladly trade back if I could. But did I respond in this way? No. I could barely think. And the response would have caused my well-meaning neighbor to feel horrified.

There have been other comments that reside in a similar place—not rude, but just poorly thought-out. I would classify any “look on the bright side” comments into this category. Yes, I know that we had twenty-six years together, we had children, we traveled, we had a beautiful home. And yes, I believe that Kevin is no longer in pain. It just doesn’t make me feel better, or correct the deep wrongness of the situation to hear those things. Even Emily Post suggests staying away from the "blessing in disguise"suggestion.

The worst thing said to me (for which I claimed the prize in my group) was by a woman whom I didn’t even know. We met at a baby shower where we were both related by marriage to the mom-to-be (me through the grandmother, her through the grandfather). She had divorced her husband two years before and we were actually attending the shower in her ex-husband’s home. This woman was aware of my story. She came over, sat next to me and offered her condolences. She explained that she was the ex-wife of the man whose home we were in and angrily mentioned that he was displaying photos of their children throughout the home as though he had something to do with their upbringing. She looked at me and, with a very straight face, said, “at least you got sympathy when your husband died. I didn’t get anything when I walked out on my loser husband.”

She went on to explain how I would have men clamoring to dance with me at my daughter’s wedding, all in an effort to make up for the fact that my husband won’t be there. She, however, had to track down her brother and beg him to dance with her at her daughter’s wedding. Oh, it was awful.

I looked her in the eye and said, in my calmest voice, “at least your daughter had her father at her wedding. Mine will not.” I stood up on shaking legs, and walked away. Most people, when I relate this story, say I missed an opportunity to punch her in the face.

Maybe the worst things are said when there is a lack of empathy; when the potholes of our own sad situations prevent us from taking even a few steps down the road in another person’s shoes. I think that’s what happened here. I have been forever changed by my husband’s passing, but I haven’t become a bitter, self-indulgent whiner, which it only took divorce for this woman to become.

That’s certainly not to say, because I’ve decided to have a different, less angry or cynical view of my situation, that my life is easier or better than hers. It’s not. But how we handle our own particular losses does shape who we are and whether we are able to see something good inside the sorrow. And perhaps it allows us to know when to put our arms around someone who’s had a loss, hold them tight, and simply say nothing at all.

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What's in a Label?


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 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 another parent who can step in when I’m a no-show. Not because I want her sympathy, but because I want her to understand. 

The proud "only parent" of two wonderful, caring young adults.

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 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.

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The View From...



The View From Hell Here

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 a blog. 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 have 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 still come 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 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. The writer 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.

Kevin and me on our 25th Wedding Anniversary. He was in the midst of round two of cancer treatment. The tumor was pressing on his optic nerve, which caused him to have double vision, thus the eye patch. We are sitting on the porch of the house we spent 15 years renovating.









In this blog, 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.

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