I remember the second or maybe third time I went out with Kevin. We ended up at his apartment, with a bag of Fritos and a six-pack of Stroh’s Signature beer. We had both attended college classes that day, then worked an eight-hour shift at the Hyatt hotel. It was closing in on midnight and I had a class the next day at 8 a.m.

We started talking about stuff that made me think this wasn’t going to be a short-term relationship—how impossible it was to get along with our parents, plans for the future, how we would raise kids, whether we believed in God, what we wanted to be doing when we turned thirty. I remember telling him that my biggest goal was to live life with few regrets. “They’ll eat you alive,” I think I said, trying to seem deep and introspective.

I’m not sure how well I’ve done at living the kind of life my twenty-year-old-self wanted me to live. Regrets are tricky, sly creatures that sneak up on you when you think you’re doing fine. I have my share of the usual regrets—not keeping in better touch with friends, not learning earlier how to budget and save, not getting back to grad school earlier, wishing I spoke better French. When it comes to our marriage, I find regrets to be moving targets. I regret some choices or situations when I’m grieving, but those same things seem less worrisome when I think rationally. There are times when I regret renovating our house. It was a significant accomplishment. But, in the end, we should have spent the time and money sucked up by our house projects on family travel. Perhaps, I sometimes think, we should have waited a while to marry, taking the time to better establish ourselves in our individual pursuits. It could have made me better prepared for the life I’m now living. 

But these are regrets as viewed through the rearview mirror, borne of tragedy, and with hindsight as my guide. They are the kinds of regrets about which I can only say there’s nothing to be done about that now.  

I’ve considered the impossible-to-change regrets lately as I read Atul Gawande’s book, Being Mortal. My reading of the book was followed by a lively discussion at my local bookstore. Being Mortal is Gawande’s look at our inability to understand and properly care for the dying, be they elderly or terminally ill. The medical community has a natural conflict, with their first priority of keeping someone alive when, perhaps that is not what’s really best. In the chapters on terminal illness, Gawande points out instances where the decision to avoid attempts at prolonging life actually led to better quality of life for the time remaining. I can only say that it is easy to proclaim with a healthy voice, the desire to “end it” if you ever were to find yourself extremely debilitated by disease, but more difficult to do so in the midst of that situation.

Kevin and I talked many times about how we both would never want to be kept alive on ventilators or feeding tubes. As the Terry Schiavo tragedy unfolded we both made sure the other understood this. But once we found ourselves in the midst of our own tragedy, it wasn’t so easy. After two spinal cord surgeries, the second of which was mishandled and led to formation of a hematoma that nearly killed him, Kevin was left a quadriplegic. Rather than say it’s time to stop, he instead implored me to keep fighting with him, his only real request of me during that time was that I never give up on him.

So I didn’t. 

My regrets don’t have to do with prolonging Kevin’s life. I am grateful for every second he was here. But the choice to continue fighting meant that we were in battle mode every second. It meant that, when hospice told me he only had a few days, I couldn’t go to him and tell him that we needed to say our “I love you’s” and “goodbyes.” It meant we marched on, side-by-side, rather than face-to-face, toward an inevitability that neither of us could accept by putting words to it. We continued battling disease until one of his tumors ruptured and he was gone within minutes. 

I do regret that we didn’t have some quiet minutes between us; that our choice to keep going prevented us from a peaceful end.

Being involved in grief and widows groups, I have learned a few things. I have talked with widows whose spouses died suddenly from accidents or heart attacks, and those who, like Kevin, suffered for years with heart disease, cancer, or Parkinson’s. Rarely in my conversations have I found someone who didn’t have regrets about the way things ended. I hear lamentations like, “I knew he wasn’t coming back to me, so I said it was ok to turn off the ventilator. Now I wonder why I did that. I feel like I killed him.” Or, “I told him it was ok to let go, so he did. He slipped away. It was peaceful, but now I hate myself. Why did I tell him it was ok and not to keep fighting?”

I suppose what I’ve learned most of all is that is that there seldom is a truly peaceful end, one that is not fraught with sadness and grief and tinged with flecks of emotions like guilt and regret that color the situation impossible. I think, too, sometimes we all look for regrets, or at least for things we feel we should have done better or differently. It is perhaps, all tied up in wanting, more than anything, for the outcome to have been otherwise.

I’ve also reconciled (the opposite of regret?) myself to the knowledge that Kevin died the way he needed to: fighting; trying to keep disease, despair, fear, and death, at bay for just another day. He needed that. Had I said anything to him to signal my acceptance of the end, well, I can’t even begin to think of the terror it would have caused in him. I know I would also regret having done that, so how to resolve? It just isn’t possible. I suppose letting him battle on was my small gift to him, bequeathed unknowingly, that I now must live with.

So while it might have been good for some of the patients in Being Mortal to accept the end, we need to understand that this was their choice. As admirable as it is, it isn’t everyone’s. It certainly wasn’t Kevin’s.

-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.